On Friday May 25th an article appeared in the New York Times titled Drug For Adults is Popular as Children’s Remedy. It addresses the widespread prescription by pediatricians and GI specialists of Miralax, a colorless odorless liquid laxative for long term treatment of constipation in children, despite the fact that it has never been approved by the FDA for long term use in anyone, and not at all for use in children. The FDA has approved the use of this drug for adults, and for only 7 days at a time. One pediatrician quoted in the article stated, ” We literally give it like water.”
Many children are routinely put on Miralax for years, and are completely unable to have a bowel movement without it. It has become a “no fuss” solution to this most troubling and debilitating symptom, which is often extremely difficult to treat. The active ingredient in Miralax is polyethylene glycol 3350, or PEG, an osmotic laxative. It draws water into the bowel and produces a watery rather than a formed bowel movement.
The mainstream medical position has been that PEG is minimally absorbed from the intestine, and thus poses no systemic risk. But there are many anecdotal reports by parents of very serious adverse side effects of this medication, particularly neuropsychiatric symptoms, mood and anxiety symptoms, tics, self-stimulating repetitive behaviors, seizures, to name only a few. A Yahoo group dedicated to this concern has over 1700 members.
“Last week the Empire State Consumer Project, a New York consumer group, sent a citizen petition to the F.D.A. on behalf of parents concerned about the increase in so-called adverse events related to PEG that health professionals and consumers have reported to the F.D.A. over the past decade.” The agency declined to comment, despite the fact that in 2009 their oversight board concluded, “little is known about whether absorption in children differs from adults, especially in children who are constipated, have underlying intestinal disease, or are very young.” At that time the FDA, nevertheless, determined that no action was necessary “based on available information.”
The article referenced conventional wisdom regarding the causes of constipation, such as too few fruits and vegetables in the diet, excess dairy, poor hydration, too little exercise, stress. What it did not mention, and what is in my mind the primary cause, is that many people today have deficient or pathological gut microflora. This is due to the over prescription of antibiotics which damage the gut microflora, a diet high in refined carbohydrates which feeds pathogenic varieties of intestinal flora, the ubiquitous use of hormones, such as contraceptives, which damage the intestinal flora, and the overall toxicity of our environment.
Dr Natasha Campbell-McBride , author of the Gut and Psychology Syndrome, believes that constipation is a condition reflecting gut dysbiosis, and all of her recommendations for the GAPS healing protocol are designed to heal and seal the gut through rebalancing the microflora. This is achieved through a whole foods diet, high in animal fat which promotes healing and lubrication of the gut, fermented foods, probiotics, a few supplements and detoxification.
Dr Campbell-McBride is very much opposed to the use of laxatives. She suggests that for cases of persistent constipation, which do not respond to diet, that nightly enemas be administered to ensure regular bowel movements. In this country we are not at all comfortable or familiar with the use of enemas, but they are a traditional time honored effective remedy around the world for treatment of a variety of conditions. Enemas heal the underlying pathology involved in constipation, whereas Miralax simply provides a Band-aid. The long term consequences of chronic Miralax use are unknown, and as mentioned above, according to numerous anecdotal reports, many children, even in the short term, are suffering serious side effects.
According to Dr. Natasha Campbell McBride, enemas provide:
- Prompt and effective relief of chronic constipation.
- Removal of fecal compaction within the bowel, and reduces toxins produced by accumulating putrefaction. Allows the introduction of friendly bacteria.
- Using probiotics in the enema ensures delivery of friendly bacteria to the colon that might otherwise be destroyed by stomach acid in foods consumed.
- The motion of gentle filling and emptying of the colon increases peristaltic (muscular contraction) activity by which the colon naturally moves material out of the digestive tract.
- Improvement in the quality and frequency of bowel movements
Constipation often produces encopresis, or fecal incontinence, in children. Infrequent bowel movements result in large, hard dry stools that are painful to pass. The children thus often develop dysfunctional bowel habits like holding in their stool, or clenching, and then have accidents. Defecation of the hardened stool can result in tearing of the delicate anal tissue and painful bleeding anal fissures can occur. Sometimes stool becomes impacted in the colon and rectum and wet stool leaks around the blockage resulting in incontinence. This is very traumatic for all concerned with the mess and smell, our visceral aversion to feces and its total lack of social acceptability.
One practitioner, a behavioral psychologist named Dr. Robert Collins, has developed a whole protocol for treating encopresis that is called Soiling Solutions, and involves a very detailed behavioral approach to the problem through the use of enemas and suppositories. His recommendations may fill a need for parents who have no idea how to go about bowel retraining. He provides a manual with careful step by step guidelines for implementation of his treatment protocol. Dr. Collins maintains that his aggressive home-based treatment effects an eventual cure though a training process where the daily treatment hour shortens over time as the child’s body/mind takes over by a natural conditioning process. His is a “bottom up” approach with consistent daily voiding to promote bowel competence, rather than the conventional “top down” approach with oral agents like Miralax.
Psychological treatment is also indicated in cases of encopresis. The stress and shame of this very difficult and often intractable condition can adversely affect the self esteem of the child, and the whole family needs emotional support to handle it optimally.
I originally wrote this post in May of 2012. It’s now January 2015. Some posts, like this one, continue to generate interest. This post was just referenced in an excellent piece called “What Can You Do When Your Kid Can’t, You Know…GO?” It describes a number of very practical and benign strategies to treat this very common and vexing problem. It’s a valuable resource that provides many effective alternative approaches to Miralax.
“What To Do When Your Kid Can’t, You Know…Go?” was featured on a website called “Thinking Mom’s Revolution,” which is sponsored by a group of “twenty-three moms and one brave dad. Their group stretches from Montana to Malaysia to Montreal. While parenting children with autism spectrum disorder, chronic childhood diseases and disabilities, they came together to collaborate about biomedical, alternative healing modalities and dietary interventions, as well as doctors and researchers developing cutting edge treatments. In the process they became a tight-knit family dedicated to helping their children lose their diagnoses.” There is an enormous wealth of useful and fascinating information to explore on this site, and I highly recommend it to my readers.
Karen Konkol says
I just got on this site after a query for Miralax and knowing my 14 year old grandson has had some serious health issues since being prescribed Miralax for two years.
After suffering IBS for years and doctors not having answers I started Plexus products two years ago. I don’t miss a day taking these supplements (TriPlex which is a drink mixed with water, probiotics and a gentle BioCleanse capsule). The natural ingredients and supplements have helped regularily, energy levels, better sleep, less anxiety and a small weight loss that I am maintaining. I am so pleased with the results of these natural products I am now an ambassador for Plexus. If you want more information, query Plexus products and read what the products have done to help SO many others. When you want to order, contact me or use my website. shopmyplexus.com/karenmkonkol/
William`D. Sullins says
Though I am not a child but a man of 66, I began using Miralax two years after my severe compression fracture and resulting implantation of Harrington Rods & instrumentation a year later. I was in SO much pain after the surgery, I had to take narcotics and I stayed on them until a month ago, taking 75 mg morphine every 8 hours plus other things like fentanyl citrate, etc. My doctor had warned me to be proactive in bowel care when taking narcotics because I could get into serious trouble unless I did (impaction, etc.). I took Miralax for years and stayed on narcotics for years (until December, 2016). My bowels seemed to get worse & worse, I also had 7 kidney stone surgeries resulting in a nephrostomy which gave me so many infections I was hospitalized 14 times since 2012.
I continued on narcotics and taking Miralax until early this year, I began experiencing severe rectal pain, actually my whole defecation nerve seemed inflamed and I also began experiencing severe pain in my male organ at times along with the rectal pain. I was hospitalized for a week this summer and had many tests, a total body MRI under general anesthesia because it took so long and I could not lay for long due to my severely deformed a kyphotic back from the compression fracture. I also demanded a cystoscopy, something I thought I’d never do. The doctor said my bladder & prostate was okay and the MRI did not reveal ANY cancer, tumors, etc. I forgot to mention that in June, before this hospitalization in July, I had an outside gastroenterologist do another colonoscopy on me (my last one had been in early 2015 when I began having early symptoms of increasing problems with constipation.) The gastroenterologist told my wife and I that he did not find any sign of cancer, only diverticulosis, but no diverticulitis (active infection). HOWEVER, he said: as he introduced the scope, given under Versed so you can’t remember the procedure afterward, he said: “you were screaming out of your brain, Mr. Sullins and that is not normal since the procedure is normally well-tolerated. I thought it very odd.
I gave all this information to the hospital in July. At THIS point, I had already lost some 35-45 lbs in weight because I could not EAT. In early April when the rectal pain began and feeling I had to have a BM but could NOT and began using more Miralax, I stopped eating because I was suffering so much pain several hours afterward whenever the food reached a certain place in my bowels or colon. I kept complaining to my PCP, the hospital, everybody, telling them: “I’m going down for the count. If you don’t FIND this problem, I’m going to DIE! ….because I cannot EAT. It’s too painful 6-8 hours afterward. EVERY time I ate ANYTHING, I took Miralax right along with my food.
This problem continued getting worse and worse with me losing more & more weight. I was suffering so much pain at home that my wife would put her arms around me and cry right along with me. I plead with God, I pleaded for strength for an answer to my prayer but nothing helped.
When I finally saw my doctor in September, I had lost about 55-60 lbs. He wanted to put me in the hospital & gave me TPN (total parenteral nutrition – in a PICC line inserted in my arms). HOWEVER, when they tried this, the pain became SO HORRIBLE (25+) I was screaming in my bed. I’d finally had ENOUGH and told the doctor to discontinue the TPN & send me home to DIE. I was tired of trying to cope and decided that dying would be easier. I was sent home on hospice and remained there until December 9th when my pain became balistic. I was receiving, if you can believe this, 36 mg of morphine directly in my PICC line every HOUR! …in addition to another 28 mg/hour I could give myself as a “bolus”. In addition, I was getting 5 mg methadone every 8 hrs & 10 mg at bedtime. PLUS, 100 microgram fentanyl patch. When I went in the hospital December 9th, they said they’d NEVER seen ANYONE on as much morphine as I was on. They took me OFF the hospice pump & put me on their pump. BUT the morphine was D/C’d because it was not working. They instead hooked me up to Dilaudid (hydromorphone) a more powerful drug, but no continuous rate, only 28 mg or 8 “pings” per hour. At first I balked because what will I do when I fall asleep? I was afraid. But the next day I wasn’t any the worse. Over the next 24-36 hours, I pinged it very little until they D/C’d the dilaudid. I told the doctors (this was a University Hospital which also trains doctors and nurses) I wanted OFF “ALL” narcotics. For a couple of days I seemed to have no withdrawal symptoms but was told I was having a delayed reaction. Eventually I DID began having withdrawals but they really weren’t all that bad. They continued giving me 5 mg methadone every 8 hours round the clock until I told them to cut the dose in half which is where I’m at presently.
I have lost almost 80+ pounds, to 110 lbs down from 185 when it all began. In an effort to save my life since my nutrition is so poor and I’ve lost so much weight, I was sent home on TPN which my wife hooks up every day. I also have an appointment with the hospital’s pain clinic where I’m supposed to be looking at having a nerve block to stop the pain & perhaps destroy the nerve. BUT, I’m STILL not convinced this is the right thing to do.
Seemed my bowel started responding a “little” more normally, so at the insistence of my wife, I began trying to eat “a LITTLE bit” after I got home on the 19th (was in the hospital for 10 days this time). A manometric study of my rectum was done and it was discovered my internal and external rectal sphincters were not working together normally but opposed to each other, preventing the normal passage of feces. Everytime I ate anything at home, an egg and oatmeal that she whipped out with a hand blender, zwieback toast, I drank Miralax along with it. I haven’t had a normal “stool” in MONTHS, I only pass “mushy” sometimes liquidy stools. But things were moving along okay. THEN, seems I felt severely constipated again and so began taking one dose, two doses, three doses of Miralax one day. THEN, all the SEVERE RECTAL PAIN has come back again, and I’m hurting severely now with the constant feeling that I need to defecate,
WHAT DO I DO? HOW do I find a doctor somewhere who can HELP me? NOBODY has REALLY gotten down to the bottom of this problem, I don’t believe. If ONLY I could be OBSERVED and a doctor could take the “time” to see what’s going on, perhaps they could find the problem & what’s going on with me.
I’m so SICK & TIRED of all this pain & suffering. I’m STARVING and want to EAT, but CANNOT! My diet has been poor since losing my teeth shortly after my back surgery in 2001, so I can’t really masticate my food that well either. ALSO, I married a Filipina girl who’s taken excellent care of me and seems to really love me, but she’s frustrated and prays for me day and night right here next to me! SHE wants me to get well, and I want to get well too. I was quite active, even with my severely kyphotic back deformity, and was driving a car and I was the organist in my church before this and also playing part-time in another church (not my denomination) for hire, something I’ve done for many years. I’ve been a professional organist for almost 38 years now and play classics like Widor’s Toccata in F Major, etc., something I was really enjoying before ALL THIS started happening to me. If only there was somewhere I could GO, somebody I could start SEEING who could HELP ME GET TO THE BOTTOM OF ALL THIS, I wouldn’t HESITATE TO GO, spend ANY AMOUNT OF MONEY, but I’m at a TOTAL LOSS AS TO WHAT TO DO.
DOES ANYBODY KNOW OR HAVE ANY IDEAS what I could do? Where I could GO? …to start finding some ANSWERS? I’m SICK of doctors, of medications, though I have to take a few I know, but no more 75 mg morphine every 8 hours as before. Oh yes, and ONE of the diagnoses that the doctors in the hospital this summer told me was “paresis (or paralysis) of the bowel secondary to chronic use of narcotics. That’s ONE of the reasons I got off the narcotics, though not the ONLY reason. I’m still in considerable back pain from the rods in my back though. ANOTHER diagnosis this summer was that a doctor came in to see me and said that in almost every case he had researched of someone with the kind of pain I was describing in the rectum, was due to unresolved kidney stone issues. I have a blocked right ureter from a kidney stone that lodged there in 2012 after my 7th surgery, necessitating the nephrostomy in my right kidney (a tube in my right kidney where the urine drains into a bag).
Complicated case, I know. But I’m DESPERATE TO FIND ANSWERS. Can somebody please HELP ME?
I am so sorry you are going through all of this. But don’t give up. Keep looking for people with answers. They are out there. If I find anything that could help, I will come back to make a comment. Blessings to you.
William`D. Sullins says
Thanks for your kind comment Vanessa. I’ve been through SO much with all this. I WANT to eat & whenever I try, it’s always pain, sometimes lots of abdominal pain. Since I’m off of ALL narcotics with the exception of 2.5 mg of methadone at night now, I’m free! Considering I was taking almost 100 mg of morphine 3 times a day before I went into hospice, & after hospice, many, many times much more than that! But I’ve kicked it all, only a tiny dose of methadone. I’ve been taking a very “tiny” dose of Miralax at night before bedtime, like 1/4 to 1/5 a normal dose. THEN in the morning, I ate some Fat-Free Lime/Orange Sherbet which works to get things moving along every time about an hour or so after I wake up.
Vanessa, I live in San Bernardino, CA so if you can give me the names of any doctors in my area, I would sure appreciate it. Thanks for your concern.
This sounds awful. Yes, there are doctors who can help you, but your insurance probably won’t cover it. You need to stop taking pain killers. A natural alternative for pain that is not constipating is cbd oil, which is a non-psycho-active form of cannabis. Mary’s Medicinals is available in a few states and really helped me with my IBS pain. There are many other brands that have good reputations as well. Switch to that, and stop taking the miralax! Have your wife help administer enemas instead, it will relieve your pain more quickly and you can put probiotics in the enema bag with the saline solution and that will help your problem as well. Find a naturopathic or holistic doctor to work with you to find the root of your problem. A really good chiropractor can help you as well, but they are not created equal so do some research and try to get a good referral. Accupuncture might be another place to get help, again do some research and ask friends for referrals. The body is an amazing healer, so consider helping yourself with meditation, music and prayer.
Thank you for your thoughtful reply and generosity in taking the time to share your knowledge and wisdom. I agree with everything you wrote.
William`D. Sullins says
Dear Taymar: Thank-you for reading of my plight and your comments as well. I read with interest what you said. First, you said there were probably doctors who could help but that my insurance probably wouldn’t cover it. To what types of doctors were you referring? I have Medicare & Medi-Cal, here in California referred to as Medi-Medi. My insurance has paid out a lot already, it’s just not the absolute “best” insurance I COULD have, for instance, like Supplemental which most seniors have after reaching retirement age, for instance. I’ve already had a colonoscopy & esophagastroduodenoscopy in June which only turned up diverticulosis, but no active case of diverticulitis (an active infection). But to what kind of doctors or specialists were you referring?
I HAVE stopped taking pain killers except for a very tiny dose of methadone (2.5 mg ordered 4 times a day which I’m only taking 2 times & often only once per day.) I was on 100 mg morphine b.i.d. for years. I then went to 75 mg t.i.d. or every 8 hours back around the first of the summer. But I stopped all oral opiates, patches, & no more intravenously back in December with the exception of this tiny dose of methadone. I was being given 5 mg methadone every 8 hrs while still in the hospital, but I asked them to cut it in half, which they did, & am ordered to take it every 8 hrs (2.5 mg), but I’m not taking even that much now.
What is cbd oil? When you’re speaking of taking this for your IBS & then mentioned Mary’s Medicinals, is this where you purchased it? Though I do not smoke or drink & would never take marijuana in any form, if this is just completely non-psychoactive, then what properties in cbd oil made it work for you? Is Mary’s Medicinals supposed to be nationwide or just certain states? California sells medicinal marijuana now. Were you thinking this Mary’s Medicinals might have it?….and that they might also be out here in California?
You mentioned there were many other brands that might possibly help. Such as…?
I’m quite conservative in most areas of my life. I’m also quite conservative in my approach on most levels. To what were you referring when mentioning many “other” brands that could help? Is it truly okay to add probiotics to an enema? What type of probiotic did you mean? The only type of enema I’ve ever had are fleets and regular water. I remember back in 2014 when this problem was in its’ most early states & pain was not yet part of the component. When I went into the emergency room, the doctor ordered a Fleets that when administered, the sodium “phosphate” in the solution just “BURNED” my rectum and this defecation nerve so badly. I never forgot it. When I was in the hospital this last time, when a manometric study was ordered, the doctor wanted me to have a Fleets before the study. I remember telling the nurse about my experience with Fleets in 2014 & how it burned so badly. The order was changed to a regular “water” enema instead of Fleets or saline. Do you believe this would work as well? Or do you think it definitely needs to be saline?
I will have to look for a naturopathic doctor out here. I’ve never been to one before. As far as chiropractors are concerned, I have a hard time believing in them myself. When I was in college back in the 70’s, they were still not allowed entrance into the American Medical Association since they denied the very scientific & proven facts that “germs” cause disease also, but denied that entirely, claiming that only joints out of whack or whatever were the cause of disease & that all that was needed was for one to have his joints manipulated which is pure nonsense. My stepfather was a pretty famous abdominal surgeon and my mother was a nurse, so I grew up learning a lot about medicine in general, medical terminology, and so on. But I’m still no expert in the field.
Please write me back, if you like, & give me more information. My e-Mail address is: wmdsull at gmail dot com.
Thank-you Taymar & for your thoughts.
William D. Sullins
This may be a stupid question but I didn’t read you mentioning a Gastroentrologist have you seen one? Have they checked you for Crohn’s disease? Intestinal Ischemic Syndrome?
I just saw someone saying go to Mayo Clinic in MN. I see you haven’t posted here for a long time so I don’t know how your health is it this time.
I got sick a year ago, and kept getting sicker. I went from doctor to doctor and didn’t know what was wrong. I never got it’s bad is you are, but I know the frustration of not knowing what’s going on. To make a long story short, I eventually ended up going to Mayo Clinic in MN. Have you ever heard of pelvic floor dysfunction? Males and females can deal with it. The treatment is Physical Therapy. That is the diagnosis I got at Mayo Clinic. I am undergoing treatment at this time, and the outlook is good. I don’t believe I would’ve gotten that diagnosis had I not gone to Mayo. I think I would’ve continued to just suffer with the symptoms that I had for the rest of my life.
My insurance covered everything.
Good sir I hope to god you have found some relief for your condition. If not I hope you have considered some of these solutions. I would like to add upon previous commentators with a few suggestions.
-a conservative approach is useful at times but can also be a hindrance, especially when it comes to things like naturopathy and holistic sciences. People who are rigid in their conservatism can witness a treatment working before their eyes and be convinced that something else must be at play. There is a silly trend going around that naturopaths are hucksters and charlatans. They’re not (although in the USA I believe the term “naturopath” may actually be a blanket term, in this case, look for certified herbalists, Traditional Chinese Medicine practitioners, etc), they are people who have dedicated years of their life to training in something that they believe to be effective enough for improving human health that they would invest thousands of hours and dollars into its practice. No charlatan or huckster is going to spend tens of thousands of dollars to study for years to try to fraud someone, that defeats the whole purpose of fraud.
The main issue is opening yourself to different modalities. The current modality that your medical paradigm operates under is the same as most people’s, that which is described by American medical institutions and textbooks. That’s all well and good, but it’s not the only framework, and to suggest that it is, is like saying that oil painting is the only framework to produce art. Traditional Chinese Medicine, for example, has hundreds, thousands of studies of treating diseases that the west considers “incurable.” Their approach to disease is also much different than ours out here. They would never send somebody home because of having an “unidentifiable disease,” rather, they look at the symptoms you describe, the organs affected, the properties of such organs in relation to the symptoms, and prescribe a methodology and medicine regimen based upon that,I recently showed a friend of mine a handful of studies that I found – entirely by accident – in which doctors of Chinese Medicine treated Crohn’s disease, something which he had repeatedly tried convincing me is untreatable.
I also question why you would never take marijuana under any conditions, even if it were able to cure your issue? It would seem to me that, for a health problem of this degree, all options would be on the table – stigma or prejudice be damned! I do, however, agree with the use of CBD, as I can’t handle the intoxication of cannabis.
Another option is kratom. Kratom is a southeastern Asian herb with mild opioid properties. It is much less strong than methadone. It is also challenging to research as the FDA and DEA are attempting to make it illegal, despite increasing evidence and hundreds of thousands of reports from people successfully using it to switch off of pharmaceutical painkillers. It can produce mild addiction but no more serious than 5 mg of methadone would. If you do consider this, use a reputable vendor like Kat’s Botanicals. They have a guidebook that tells all about kratom here. https://katsbotanicals.com/kratom/about/guidebook/
Have you tried milk of magnesia at all? My dd gets stomach cramps initially from mirilax, as soon as she drinks it, and has had severe rectal pain from too high of dosages from mirilax. Milk of magnesia hasn’t caused this reaction with her at all. Just something to try. But, in your case, I would start at a lower dose and see how your body tolerates it. The thing with mirilax is that it needs to be taken daily, whereas milk of magnesia can be used as needed and doesn’t need to build up in the system. For most with mirilax, it takes 2 to 3 days before it starts working.
Cindy Troll says
To William D. Sullins
I am not a doctor. I used Miralax for about 7 years and it causes stones in gallbladder and ulcer in my stomach. I have had chronic pain since 1993 and in 2003 started to use methadone 40mg per day and went down to 20mg a day after gallbladder removed in Oct. 2015. I continued to have pain in liver & pain in lower back kidney area after my surgery. When I continued to take miralax after surgery I had extreme liver & esophagus pain, so I stop taking miralax and my diarrhea stopped. Some of my medication cause constipation like my ambien and blood pressure meds. I had to stop these meds after gallbladder removal: miralax, colace, bp med, fiber con, because these meds caused severe pain. Prior to my gallbladder removal the miralax causes diarrhea and I lost 50 lbs., and I realized that after I took my miralax I had these gallbladder pain attacks. When I told these things to the doctor in emergency room he did not believe me, but I knew I was correct. The doctor asked how do you know your having a gallbladder attack? I told him that the pain started 30-60 seconds after I used the miralax and showed him the area of pain right upper quad. under ribs. Doctor did ultra sound and he rubbed the the instrument on the area where My pain was to see if I had stones where My liver & gallbladder were. Doctor finally admitted that the pain was my gallbladder and it needed to come out, but refused to believe that the miralax causes the pain or stones. I told him I did not eat that day and he said it was food.
If I were you I would stop using miralax to see if that helps, cause I do not think it is safe to use. The hospital gave me a print out that said laxitives , hormone replacements, and water pills cause stones in gallbladder and kidneys. I was using all these meds.
Did your constipation ease up after you reduced your pain meds?
After I stopped using miralax I was able to have bowel movement’s, but still have problems so I change my diet more salads, no frozen foods, I use probiotics in tea drinks Kombucha GTS is the brand, and kefir like Lifeway keifer (it is like liquid yogart). Kombucha is tea but does not taste like tea it is kind of sour & sweet (lemonade & strawberry best flavors) GTS Kombucha is good. The Kombucha is very low in sugar and carbs. Lifeway kefir is low in carbs & sugar. Most yogarts are high in carbs & sugar so read labels. I only have 2 servings of bread a day whole grain 100% organic Ezekiel 4:9 bread. No white bread or pasta and no cereal except ‘Uncle Sam’ high in fiber low in sugar, and oat meal with fruit. I use probiotic tablets time released, probiotic pearls complete. I have yet to find a gastrointerologist who will even work with me since my gallbladder was removed; as soon as doctor sees I use methadone and use Medicare they are formal and mad!
I have worked in surgery for 20 years 70-80 hours per week and that is how I acquired chronic pain.
For some reason doctors do not like to treat people who use pain meds even in a resposible manner and Medicare is the kiss of death. My confidence in gastro doctors is very low they do not know about diet or probiotics or fermented food, drinks, or supplements. No clue concerning diet or how to maintain digestive health. Our bowels have good bugs like probiotics which maintains our bowels. Antibiotics and medications can mess up our good bugs so we need foods and drinks rich in probiotic, kefir, and Kombucha that are fermented. Iam by no means an expert, but we all need to do research to find a healthy diet to keep our bowels moving! 20 minutes of exercise and stretching is very important every day.
I have yet to find a doctor who is willing to work with me as they no nothing about diet and even the medications they prescribe. When I tell a doctor that any of my meds make me sick or have side effects they do not believe me.
If I were you I would stop the miralax and change your diet eat prunes, and find a gastro doctor who knows about diet! I go online and look at gastro doctors qualifications and each doctor has a list of all these things they specialize in, but when I meet them face to face they know nothing. They say eat fiber I know that. All the gastro doctors do is stick scopes down your throat and then stick flexible scopes up your rectum and do biopsies they are not surgeon’s. But Iam always told these gastro doctors are stomach and bowel specialist?! Well you could have fooled me. When I worked in surgery it was the surgeon’s who did the scope procedures. But prior to the removal of my gallbladder I was forced to have an endoscopy and I had no pain in my stomach or esophagus. The gastro doctor had no answers to my questions as I asked if the miralax or any other of my meds caused this pain in my upper right quad.? I don’t know?! I ended up in ER again and finally I was told my gallbladder needed to come out, but after gallbladder was removed I still had pain. Except my stomach hurt and I was real sick and I had to stop using the meds I mentioned above. When I went back to my doctor and told him I was worse off he blamed the pain meds I used. I told him he should not have removed my gallbladder if it was the pain medication. He refused to help me with diet.
I hope you can find a doctor who will help you with a diet plan. Continue to pray to the Lord Jesus He is the healer and the ultimate physician. There is a web site you should look at saved healed .com.
It has resources concerning healing to take a look at it meditate in the Word: He sent His word and healed us and delivered us from our destruction. Listen to worship music and thank Jesus for your healing. I know Fix loves you and has not forgotten you! God bless you.
Patrick O says
William, my story is very similar. Chronic pain, 4 neck surgeries, plates and screws, pain meds, constipation, then tried Miralax for (?) years. Now I developed terrible chronic pelvic pain. Rectum, perineum, genitals. Unbearable pain. I had to go on disability because my job was mostly driving and I can no longer sit. Standing is a little better but after standing for 30 min the pain is unbearable. They have said….CP/CPPS, (chronic prostatitis or Chronic Pelvic Pain Syndrome….OR Pudendal Neuralgia, OR Perineal neuralgia. I am having a Caudal epidural and they also want to try Ganglion Impars. If those don’t help they want to inject steroids at the Pudendal Nerve. My pain management doc is doing these injections. That nerve, if irritated or compressed supposedly can cause this terrible pain. Honestly I blame the Miralax though (which I stopped 10 days ago) and do not have high hopes that these treatments will help. I’m fighting to keep my disability as the insurance Co and the doctors mostly have no clue why I am in so much pain. When I had a rectal exam I was screaming in pain. I am scheduled for a colonoscopy and I think they better beware because I assume I will be fighting and screaming even while unconscious. God help us. http://ainsworthinstitute.com/conditions/pudendal-neuralgia/
Sorry you’re suffering so much I’m suffering from a lot of illnesses to I can definitely empathize. I know your post is a bit older hope you are still okay. I was going to suggest Mayo Clinic in Minnesota
Lorraine O'Farrell says
Go to Germany! They are a million times more on the ball!
Kevin Zawiszs says
Did u try mayo clinic in minisota?
I would advise you share your story with Dr. Morse, a naturopathic doctor of 45 years, master nutrionist, master herbalist, and master iridologist who specializes in cases where people have been left to die. https://www.drmorsesherbalhealthclub.com for more information and his contact information.
Blessings to you dear one. My prayers are with you.
Mr. Sullin, I hope that you have found some relief in your condition? My son has multiple medical issues for 17 years and we just now finding some answers from our visit to Bumrunguard International Hospital.
For his BM issue, we tried Traditional Chinese Medicine doctor (license) in Chiang Mai, Thailand, and he was giving small herbal pills. It was not a lacxative. It was discribed as vitamins for his colon. His BM become normal and after a recent xray, it shows that he no longer need an enema (he previously has feces stuck on the wall of his colon and intestine) . However, his TSH level drop. But the chinese medicine was not to take forever. As his doctor start cutting it down, his TSH level comes back up again. If you are going to tried alternative medicine, please talk to your regular doctor and get blood test often to make sure you are doing ok with it.
I’m so sorry for your health issues…. Not sure where things stand today. Have you looked into the Gerson Therapy?
Dear Mr Sullins,
I advice you to sees naturopathic practitioner. It seems that prescription meds and procedures have taken a toll. This happened with me when I went through cancer. I went to see Dr Jim Roach at theMidway Integrative Center i Midway Kentucky. After a year and a half on the supplements and diet Im really healthy again. Enjoying life, The clinic number is on the web. You’re worth it!
I have a question about the psychological affects of Miralax. My daughter took this unfortunately for several years (after trying EVERYTHING else). We have finally found what works with her which is curcumin, high dose probiotics and magnesium citrate. What a blessing! While on the Miralax (although I didn’t link the two at the time), she had developed anxiety, mood swings, fits of rage etc. My question is this: is there anyway to gently detox or heal her from the effects of the Miralax?
Amron Bevels-Wilson, MD says
Beth, Dr. Tsafrir, thank you so very much for your comments. Have either of you found anything for the detox? I am researching this for a family I am working with right now. I do nutrition-based research support and help individuals create targeted health strategies for specific goals. Thank you for hosting this forum. We need a centralized place to go. What contributors say is true. Gastro-enterology docs are taught next to nothing about the gut health, function, and maintenance beyond the histology and basic mechanical physiology. I was trained to be one. I went into family medicine then left practice altogether. I do nutrition almost exclusively now.
I don’t know the answer to this question about detoxing from the effects of Miralax, beyond supporting the immune system with all of the measures that we know are crucial: a whole foods nutrient dense diet, eating garlic and onions, identifying any food sensitivities, probiotics and fermented foods, movement, sleep, fresh air and sunlight, contact with animals, swimming in lakes and the ocean, emotional connection, community, spiritual practice. All the usual suspects!
Iam dealing with upper right quad pain. Wast oldie was gallbladder. After 8 years of pain, I gave i and had it removed.pain is worse ow and doc just doesn’t have answers except take Miralax. My intuitiontellsme “NO!” I ought some but am taking it back. IBS? Seems like something more. My partner wants to believe the doc. I don’t trust soemone when they tell me that because when I press on an area and that cause slain that it’s muscle related only. Period. I know my body. Something is wrong. I have gotten colonics for years, and they have been a lifesaver. I am bloated and can’t seem to lose weight. I had the gastric sleeve in 2014, then gallbladder out Oct 2015 and got C. Difficile. I had to fight to get a simple stool study after two weeks in the hospital. Voila. C. Diff. The antibiotics to get rid of it were awful. I gained weight.30 pounds. Definitely because the only foodsI could tolerate were breads and ice-cream. They kept me alive. Now, I’m bloated, go back and forth between diarrhea and constipation. Doesn’t matter what I eat, there isn’t one particular food trigger. I get nauseous and vomit daily. I know my immune system has been compromised. I know I am malnourished. I can’t eat enough to get enough vitamins and nutrients. I am on disability and have very limited funds. Have Medicare and Medicaid, so my choices are limited to western medical thought doctors. Iam toying with doing a fast. I did one in 2004 very successfully. I was living alone the and find living with someone who can eat anything and is driven by western medicine culture,it’s hard to take as good a care of myself as I need too. I’m tired of doctors telling me, “suck it up and accept that this is who you are now.” Really? Help me! You screwed me up, now find out what’s going on. Even with my liver being enlarged, the only thing they say is, “it’s a fatty liver.” I may be overweight, yet something is wrong with my liver more the their guesses. The right lobe being 21 centimeters is not okay.
My son has been on Miralax for about a year now and after reading about all the problems children are having, I want to get him off. What kind of high dose probiotics and magnesium citrate did you use and how much? My son is 4 years old.
Polly Poffenroth says
My daughter was prescribed high doses of Miralax daily beginning at the age of 4 for constipation. We went to several GI doctors who all gave us the same treatment. 5 years later she has severe learning disabilities and I am convinced it is related to PEG in Miralax. She has no history prior to taking this toxic drug of any behavioral, developmental, or learning issues. I finally took her off 6 months ago but there is no improvement. I am trying to find a way to measure PEG levels in her blood but have been unable to find a doctor to help me. Doctors do not want to consider any association between Miralax and neurological effects in children which blows my mind. Thousands of kids each year are given toxic chemicals and parents don’t think twice about it because we trust medical professionals. It is beyond disturbing and we need to stop it.
My son who is no 12 has been on Miralax off and on for constipation for 8 years. He has now been diagnosed with a rare autoimmune disorder called lichen planus. After much reading I feel as if the long use of Miralax may have contributed to his diagnosis????
I really do not know if the lichen planus is related to taking Miralax, but many children have had adverse neuropsychiatric consequences from Miralax. You might want to check out the Yahoo group for parents of kids who have had issues with Miralax and see if there are others who have had anything similar to your son.
For most patients with auto immune conditions in my practice, I recommend the Paleo Auto Immune Protocol. You can learn about it at the website, PhoenixHelix.com.
I have lichen Plantus . I have never used Miralax before . As stated it IS an auto immune disease . I do know that stress can flare it up .
My son was on this medication at age 2.His care provider started potty training him too soon and constipation started. I noticed that over the 2 years of Restorolax use, my son had a lot of anxieties. It was very difficult to wean him off. More use of water ,pediatric probiotics and extra vitamin C (he had developed hemorrhoids because of constipation…rare in children but we have pictures of the roids) I was able to get his bowels to behave the same way that Restorolax did,,but with out the anxiety side effects. I’m not sure if this medication provoked long term side effects but hes back to being much less anxious has regular bowel movements and has more interest in food which makes it easier to keep natural fiber and fruits in is diet.
My daughter started miralax 6 months or so ago everyday. She has since then been diagnosed with anisocoria which just began and makes me wonder if the two are linked.
I do not know the answer, but there are much safer alternatives, and I have come to feel increasingly that whenever possible, we should avoid putting substances that contain unnatural chemical ingredients in our bodies or in our children’ or pets.
Mike Koehler says
Sorry to hear of your daughters health concerns; if you feel it’s tied into the use of miralax please consider a couple options.
Join our FB group – parents against miralax
Join our yahoo group – miralax
Contact the FDA and share your concerns – http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm
Lastly, there’s an attorney in Los Angeles that is willing to hear our concerns;
James A. Morris Jr.
Morris Law Firm
6310 San Vincente Blvd
Los Angeles, CA 90048
Business Phone: 323-302-9488
E-Mail: [email protected]
Cell Phone: 323-455-4444
I wish you the best of luck and good health to you and your entire family!!
So as I sit here and read all of these. They are all negative about Miralax. Is there any new evidence that it is bad for kids? Anything positive about it at all. My 2 year old has been getting a pinch a day since he was 1 to help with constipation. It definitely helps him but now i worry about long term effects. Anything recent to be alarmed about?
I am not aware of additional information, but the cumulative evidence from the past is very alarming in my opinion.
Mike Koehler says
I would consider joining the FB group “parents against miralax”. There are some 2k concerned parents talking about it every day!!
Hi. I used miralax on my child at one year after taking acid reflux meds . I had to take her off of it since she was having cramps and stomach pain after long term use. I only use it now, at 5, when she has not had a bowel for several days. I give my daughter flaxseed oil, a probiotic for kids called Florajen4 kids, prune juice, and a high vegetable and fruit diet. I have taken her to a homeopathic doctor to desensitize her allergies, and fix her stomach flora, which has helped tremendously. We also limit her dairy intake as dairy will worsen the sitution. I hope my suggestions help and good luck! Magda, Illinois
Hi all. My 2 year old has been on miralax for about 8 months now. I’m glad I stumbled upon this post. Our pediatric gastroenterologist told me that she may have to be on this for years due to functional constipation. While I didn’t like the idea of my daughter relying on a laxative, I had no choice. She had colic as a baby and when she grew out of that she has always had difficulty passing stools. I didn’t know what else to do. I’m throwing the miralax away NOW! He also told us to give her 1/2 a chew tab of ex lax daily. Does anyone know if the ex lax has reverse side effects or is it ok to keep her on that? I am going to look into natural calm and think I’m going to try switching her to almond milk. Please advise!
Mike Koehler says
I would continue to look for a more “natural” solution. There are a couple groups you could join while seeking advice; FB parents against miralax and on Yahoo “miralax”.
Consider a couple points;
In contrast, people who used non-fiber laxatives five or more times a year had a 49 percent increased risk for colorectal cancer, according to the findings published in the Oct. 7 issue of The American Journal of Gastroenterology.
A common cause of fecal impaction is using laxatives too often.
Repeated use of laxatives in higher and higher doses makes the colon less able to respond naturally to the need to have a bowel movement. This is a common reason for fecal impaction.
Source – http://www.cancer.gov/about-cancer/treatment/side-effects/constipation/GI-complications-pdq#link/stoc_h2_2
My view is that constipation is a symptom, and that it can arise from different causes. When it comes to constipation, as is true for many symptoms, one size does not fit all. Fiber laxatives worsen constipation for some people. It seems like many people do well with treatments that contain magnesium, which makes the stool retain water.
Mike Koehler says
Isn’t the issue with fiber due to people not knowing the difference between soluble and insoluble fiber? Fiber is very important for colon health, from what I have read.
I would agree, there’s not a “one fits all solution” however, I think many people would agree constipation stems from gut health. If your enteric nervous system is happy/healthy then it should be directing traffic as it needs to.
Constipation is all about gut health. I think for some people it does not matter if the fiber is soluble or insoluble. There is a book called “Fiber Menace” that discusses this.
Mike Koehler says
I would make sure any milk you choose does not contain carrageenan. About the ex-lax, I would try something more natural. More water, less dairy; if you’d like to supplement with magnesium consider natural vitality calm, or even blue ocean minerals. Any trace mineral supplement may be beneficial, I would check with your naturopath beforehand.
What do you think of probiotic drops?
My daughter (now 21 months) has had very had stools and our pediatrician told us to use miralax. We have been using it for the past 6-7 months but there have been weeks when I did not give any to her. Her diet was very healthy with lots of fiber so that did not seem to be the issue.
I don’t like the idea of Giving my baby Miralax eventough our pediatrician told us that it is completely safe and not really a laxative but rather something that “helps pull water into the intestines and softens the stool” but the ingredients sound scary to give a little baby.
The probiotic drops helped her a lot. I threw the Miralax bottle away!
My daughter just turned a year old. She is a happy health baby but started having GI issues a month ago when she had intususseption that had self resolved (no enema needed). After that happened, she had mucous, foul smelling diarrhea for 20 days straight and the GI docs said it was a virus. We had to change her diet around (which was a normal healthy high fiber diet for a one year old).She ended up intusussepted AGAIN which self resolved. Then one day she went from diarrhea to passing hard painful stools. She was like that for a few days and then started with apple juice, then prune juice. One day after giving 3 oz of the prune juice she had watery diarrhea so we put a hold on the juice. Then she passed bloody hard stools again and had pain the next day and GI recommended Miralax – 1/2 tbsp daily. Her stools aren’t normal soft stools, more like mush, but at least she is not in pain while moving her bowels. Today is her second day on it, tomorrow will be her third dose and then I will see if her body can produce a normal bowel movement on her own. I do not want her to rely on laxatives, and I feel that GI is just telling me to give her Miralax to shut me up. My daughter never had any health issues since birth. Is it possible that when she had the intususseption it damaged something in her GI tract? We are getting a second opinion on Monday, but my mind is racing back and forth. Any thought or opinions on what this might be would be greatly appreciated. I feel that Miralax might be masking an underlying problem here.
Anne Q says
MIRALAX INFORMATION IN MEDIA
January 2015: brief article about Miralax written by a lawyer:
Facebook site July 2015
“Parents against Miralax” with over 1040 members.
Many parents would like a letter of intent to sue submitted to expose issues with Miralax.
[email protected] on-line with over 1050 members.
Almost 10,000 adverse events reported to the FDA as of March 2015.
In 2009 the FDA held an oversight board meeting in response to increasing complaints.
The FDA took NO ACTION, but several concerns were highlighted:
“In 2009 the Drug Safety Oversight Board discussed reports of metabolic acidosis, metabolic acidosis with increased anion gap, and neuropsychiatric adverse events in children using polyethylene glycol (PEG) products. Metabolic acidosis is a disturbance in the body’s acid base balance and causes too much acid in the blood. In some situations, metabolic acidosis can be a mild, chronic condition; however, it may lead to shock or death in severe cases. Neuropsychiatric adverse events may include seizures, tremors, tics, headache, anxiety, lethargy, sedation, aggression, rages, obsessive-compulsive behaviors including repetitive chewing and sucking, paranoia and mood swings.”
In 2011 the FDA warned against “POSSIBLE NEUROPSYCHIATRIC EVENTS” from Miralax.
Two New York Times articles have spotlighted Miralax and concerning issues with side effects:
Interview with Carol Chittenden with the EMPIRE STATE CONSUMER PROJECT discussing overwhelming reports against Miralax with minimal action being taken by the FDA.
50,500+ views on-line.
After two years a $325,000.00 grant from NIH in collaboration with the FDA awarded to study to investigate possible absorption issues. Several institutions applied for grant, but Children’s Hospital of Philadelphia, a few miles from Merck was awarded the grant. Considering 40-50% of FDA funds come from the pharmaceutical industry this raises ethical questions.
In 2008 the FDA detected the two poisons di-ethylene glycol and ethylene glycol in all eight lots of Miralax tested, yet this was not disclosed to the public. Ethylene glycol poisoning and polyethylene glycol poisoning present with almost identical symptoms. This information was disclosed in grant award information released by the FDA.
Per article below: “Those tests were conducted in 2008, but the results were not disclosed. Jeff Ventura, an FDA spokesman, said batches were tested because “many of the reported adverse events were classic symptoms of ethylene glycol ingestion.”
Thank you for all these great resources. I am sure that they will benefit many.
Thank God for this link.
Been struggling with 3 year old’s constipation. Doc recommended the Miralax. A couple of months later my sweet, smiley boy is a nervous, clingy hot mess with a tic. I have been racking my brain to correlate the tic and mood changes to something…diet, environment, activity – anything. Today it dawned on me about the Miralax and the timing of the tic. I went to the cabinet and read the jar. I was so pissed at myself for not questioning things BEFORE I gave this to my child for three months. I mean polyethylene glycol? How can that be good whatsoever. I’m also pissed at the doctor.
***Someone please chime in as to whether these symptoms subside when the Miralax is stopped***
Hi, Can you please provide an update on your child? I am in the same situation now and have given my 3 year old Miralax (17 g) 6 months ago, one dosage. He is still chronically constipated, so doctor recommended 8.5G of Miralax for several days. He was exhibitng signs of aggression and repetative behavior and anxiety. Have your childs symptoms resolved? I appreciate any input.
Mike Koehler says
Our son was diagnosed with a seizure disorder after being on miralax for 5 years; discontinued the miralax, started a probiotic, colostrom and l-gutathione and his seizures have remained at bay for 10 months now. No doubt that polyethylene glycol removes all bacteria from the gut causing an issue in the communication between the enteric nervous system and the central nervous system. Edgar Cayce talks about the relationship between temporal lobe epilepsy(our sons diagnosis) and the enteric nervous system.
Consider sharing your concerns with the FDA – http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm
Join our FB group – parents against miralax
Join our yahoo group – miralax
There’s an attorney in Los Angeles will to listen to these concerns, feel free to drop my name(not necessary);
James A. Morris Jr.
Morris Law Firm
6310 San Vincente Blvd
Los Angeles, CA 90048
Business Phone: 323-302-9488
E-Mail: [email protected]
Cell Phone: 323-455-4444
Kosmicgrrrl, just wondering if you can tell me if your son ever improved after time taken off of the miralax? I’m freaking out because I’ve had one of my twins(almost for) on it for about a year, maybe a little longer. She has epic tantrums which we always just attributed to her being emotional but now I’m starting to be really worried. She’s sooooo sensitive and cries/melts down so easily and has these awful temper tantrums. Please tell me your son improved. Or anyone that sees this that noticedthe bad symptoms – did they eventually go away? Thank you.
What holistic item would you suggest for ADHD and anxiety in teens.
A holistic item is an oxymoron. Holistic means approaching the whole person, considering body, mind, heart and spirit.
Anxiety and ADHD or ADD………did you test for lyme through IGeneX……..? http://www.igenex.com/Website/ Find an ILADS doc…..
Mike Koehler says
I would consider seeking out a functional medical doctor; while one may/may not be available in your area you can chat with one through facetime/skype or another tele-video service. What I liked about a functional medical doctor, they look at the body as a whole; unlike doctors today, you see a specialist.
A couple tests that helped point us in the right direction were the great plains OATS test and a simple stool sample. From the readings I have done it appears things such as ADHD and anxiety may originate in the gut. I think you’d be a little surprised once you look into the health of the gut.
my daughter has been on miralax(17g) daily for the last 2 1/2 years and she is 4 1/2 .
help!!! I dont like giving it to her but if i miss a day on the third or fourth day she becomes severely constipated.
one doctor has told me to stop giving it to her while a different doctor said its completely fine to give it to her for years.
im confused and no one gives me any other options.
Please read through the comments section. There are other readers with similar questions that I have answered
Hi Niaz! I have been on the search for 5 years for the answer to this and finally got one from Tim (the owner) at Apple Wellness in Wisconsin. He said I should do three things:
1) Address inflammation (Curcumin)
2) Gut Flora (Probiotics)
He had specific dose suggestions as well as brand suggestions. We are free of constipation for the first time in 5 years. Let me know if you need more info or contact Tim at Apple Wellness!
I nursed my daughter until she weaned herself off at 14moconstipated and had to give her multiple enemas. The doctor put her on daily Miralax and she has been on it for 6 YEARS! We are having multiple issues with her and I swear it is from the Miralax. She has been diagnosed with OCD, Anxiety disorder, and she flaps her hands when she if pretend playing. She has trouble sleeping and on those days at school she masturbates to soothe herself. It has been exhausting trying to help her. I don’t know what to do. When I try to wean her off Miralax, she is in so much pain and I have to give her an enema. Any suggestions??
I am so sorry to hear about what you have been through. Please read through the comments section and think about implementing the recommendations.
My daughter has a micro deletion on Chromosome 13. She has had constipation issues since I stopped nursing her at around 3 weeks old. She is now going to be 3 in July. She has been on Miralax for about 6 months. (1/2 capful a day) Is giving her natural calm daily safe for her? It won’t throw off the balance of her calcium/magnesium levels? She is dairy free, gluten free, and eats whole foods, nothing really processed.
As far as I know, Natural Calm is safe for children, and I have recommended it to patients in my practice. There may be something unique about a person with a micro deletion on Chromosome 13 or another factor that would not make it a good choice for your daughter. But as far as I know, it would be fine.
Firstly, I just want to say I am so happy I stumbled upon your site. It’s so nice to hear other people’s stories, who are going through similar struggles and myself as well as people looking for more solutions rather than quick-fixes. After reading Marcy’s and Terri Fite’s posts on here who I really identify with, I am going to find the magnesium supplement by Nature Calm you had recommended, but I wanted to share my story to see if you had any other suggestions. Much thanks in advance for your time.
I am a 28 year old woman living in Texas for the last few years. Before living in Austin, I lived in the south of China for a few years. Prior to living in China, I had no stomach issues. Others in my family have had serious bouts of IBS related issues. While living in China, I had severe bouts of constipation for weeks at a time. I was given sachets of laxatives but consistently was bloated, severly gassy, and looking to be about 3-4 months pregnant solely because I had not gone to the bathroom. I was also struggling with hemorrhoids pretty often. This went on for the entire time I lived in China. The Chinese doctors decided I was allergic to China and should just eat western food. That was not very helpful.
Upon returning to the states, I got into a regime of probiotics (Dr.Ohhira’s) and purchased digestive enzymes. I have also started taking fermented cod liver oil, and at times I use other biotransformation supplements. I have tried elimination diets and currently follow a modified version of the FODMAP diet from the Monash University in Australia. It’s been years, and I’m still battling constipation, pain, gas, and bloating weekly. The only time I feel better consistently is when I eat simply protein and rice with a few simple vegetables. I cannot eat out, or eat with friends or family and I don’t know how to make this manageable. There are times when stress definitely exacerbates my symptoms but it’s difficult to not be stressed and lethargic when my stomach is so upset. Lately I have had a day once a month or maybe twice, where there is blood in my stool and it’s difficult to tell if it’s in the stool or from a cut in the opening of the rectum. I am taking fiber supplements, stool softeners, and laxatives(Senekot) as as very last resort (not often), but I am so frustrated. I am not as sick as I was in China, because of my supplements, but they are so expensive it struggle to afford them each month and often have to go without some. I have been tested for Celiac, Crohn’s disease, colitis and well as parasites multiple times with negative results.
I have seen multiple nutritionists, my primary care doctor, and a bariatric doctor. Recently, I got in to see a GI doctor and after an x-ray that showed my colon was quite full, I was only suggested to begin a regime of Miralax and I was told that the foods I ate as well as probiotics, “had nothing to do with my symptoms.” I was told Miralax is so safe, I could take it every day forever with no symptoms. After 2 weeks of the Miralax, I am going very little but other than that, there is no improvement for me. I was looking for a solution, rather than just a band-aid laxative to take forever. After 2 weeks, the doctor said that since there’s no change, I should now take a larger dosage and see him in 3 weeks. I walked out of the office crying out of sheer frustration. I don’t know if food testing is worth the money, or if doing more elimination diets is the answer, but only my primary care physician’s nutritionist even mentioned the FODMAPS, and and GI doctor’s synopsis left me underwhelmed to say the least.
Any suggestions are greatly appreciated and I wish all people in these situations, the best health in finding their solutions. <3
I am not impressed with the reliability or accuracy of blood work for food sensitivity testing. In my practice I recommend the Paleo Auto Immune Protocol, which is an elimination diet. This is in my mind, much more reliable, as you see for yourself, how you react to particular foods and identify the triggers.
Many who suffer with constipation feel worse when they take supplemental fiber.
Most important is to avoid all packaged and processed food, as well as food prepared in restaurants, so that you can calm down your immune system and heal your gut, while identifying trigger foods with the elimination diet.
Kendra, I read your situation and had to respond. Our story is much too long to tell here, but I will tell you the good ending and maybe it will help you. My daughter had chronic constipation along with other health issues including seizures her whole life until someone told us about the Specific Carbohydrate diet. I read a book called Breaking the Vicious Cycle and there are websites and support groups online. After a few weeks of following the diet’s beginning protocol, she had the first normal bowel movement ever, and improvements continued. She’s been on the diet for about 7 years now. It also helped lessen her seizures and she became much healthier in general. In our experience, doctors and nutritionists did not help us much with this diet. We did everything on our own. Now it has gained more recognition, especially in the autism community because so many kids with autism suffer with these symptoms. It has just become a way of life for us. I always want to tell others about it because it helped her so much, it was hard at first but it got easier. At the same time, we also took her to a chiropractor. We never knew that certain, good chiropractors can actually adjust and help people “go.” Chiropractic helped our daughter so much in so many ways, that my husband changed his profession and went to school for 4 years to become a chiropractor. The specific carbohydrate diet and chiropractic was what helped our family through tough times and on the road to better health. I hope this helps you.
Thanks so much Jen. I will look into it 🙂 Greatly appreciated.
Google SIBO (small intestine bacterial overgrowth). There is can easy test for it then 2 weeks of antibiotics and you’re good to go. My husband had this for 15 years. Now on day 3 of antibiotics and he can eat anything he wants. Its crazy that no doc caught this in all these years, we had to discover it and suggest it. But I’m glad we did.
Hello! I’m sorry to hear about your story and hope you do eventually get to the bottom of things! (no pun intended)…just a quick consideration, have you had a thyroid panel checked? Your story sounds a bit similar to mine. I too was lethargic and constipated and it turns out my thyroid was a bit sluggish. When and if you do get your thyroid checked, make sure they include free T3. I was normal for TSH but my T3 was slightly low so I started on Nature-Throid. I also take Magnesium Citrate from Natural Calm and I’m now constipation free! Good luck!
My daughter had your exact symptoms, mis diagnosed fr 4 years.
She finally had a functional me who tested for MAST CELL syndrome or disorder ……and,voila….now has a treatment plan.
Mast cell is a very newly researched issue…only a few dr are looking into the milder forms of the disease which is a type of autoimmune disorder with primarily a over histamine reaction.
She now is gluten free, low histamine in terms of daily diet and take a beta blocker as a preventative to intestinal issues.
I have recently been told that I MUST begin a regimen of Miralax once a day, Colace twice a day, and Senne every night, due to a trip to the ER, because I couldn’t urinate, and it turns out it was due to backed up stool. I have had chronic constipation my whole life. I am in the fitness industry, eat great, fiber, fermented foods, juicing etc. I DO NOT want to be doing this, but don’t know how to ‘fix my problem’
The doctor (covering while mine is away) told me I have been negligent by not incorporating these things into my world. Is there something else I can be doing??? HELP (and thank you!)
Many people with constipation respond adversely to supplemental fiber, despite what the conventional wisdom is in this regard. I recommend two products with Magnesium in my practice that are routinely helpful. One is Natural Calm, a Magnesium Citrate powder to be mixed with water. The natural flavor is most palatable. The other is a magnesium capsule called Mag O7 by Aerobic Life. With both, there is a need to experiment to find the appropriate dose for you. I hope that you feel better soon.
Thank you so much for the quick reply…I will look into these. Which is most like the miralax?
I don’t think that either of them are like Miralax. Both are excellent, and you can see which works best for you.
The Mag 07 refers to itself as a colon cleanse. do you feel either of these is safe to take every day?
I have taken both products daily myself at different points and recommended them to my patients. Mag 07 is simply magnesium. Most of us are very deficient in Magnesium. I believe that the designation colon cleanse is misleading. I suggest you read through the many reviews of the product on Amazon and make up your own mind.
hi, first of all i want to thank you SO VERY MUCH for taking the time to answer each of my questions. i don’t want to make this the ‘Marcy show’, but one last question. how much of the natural calm, (for example) should i take to equal, 1cap miralax, 2 Colace, and one Senna a day? thank you thank you, and thank you!
Everyone is different and has a different dosage that is appropriate. You will need to experiment with what is right for you. You could start with the recommendation on the package, and increase or decrease depending on your body’s response.
Mike Koehler says
Marcy, consider a magnesium supplement; something like blue ocean minerals or cell food.
Nita Mayson says
My daughter 35 had been taking Mira lax for several years, now she has been diagnosed with Lupus.I’m very concerned as all I
read says disease begins in the gut !
Your concern is not misplaced. I agree that disease is related to the condition of our immune system, which is primarily linked with the health of the gut.
Hi my son has been having problems with constipation he’s had stomach pains for 3 months already Dr sent him for x rays and says its from constipation. So last week she perscriped miralax for him he went to the bathroom the next day so she told me to continue to give it to him. After 5 days of being on it he went again so he’s only going about once a week he is 3 years old. Took him back to the Dr’s today and now she wants me to give him 7 caps full in one full day which I thought was crazy. So now I’m not sure what I should do I don’t want him to be on miralax for who knows how long. So now I’m not sure what to do. Thanks
Hi my son has been having problems with constipation he’s had stomach pains for 3 months already Dr sent him for x rays and says its from constipation. So last week she perscriped miralax for him he went to the bathroom the next day so she told me to continue to give it to him. After 5 days of being on it he went again so he’s only going about once a week he is 3 years old. Took him back to the Dr’s today and now she wants me to give him 7 caps full in one full day which I thought was crazy. So now I’m not sure what I should do I don’t want him to be on miralax for who knows how llong.
I would find a holistic health care practitioner who is familiar with the Principles of the GAPS Healing protocol and the Paleo auto immune protocol and work to correct his gut dysbiosis that is causing his constipation. It may be that if he eliminated a particular food, that the issue would resolve. Many blessings for speedy healing for your son and fortitude for you.
please visit us at [email protected] or Face Book Parents Against Miralax would like the opportunity to speak to you all…….http://www.regulations.gov/#!documentDetail;D=FDA-2012-P-0566-0001
Tiffany Woodside says
My childhood experiences consisted of a bag enema any time my mother felt I was off schedule with the result that I got a great many soapsuds clean outs over the years. I don’t remember any bad experiences nor do I remember ever being given a laxative so I can only say that I feel my Mothers care was effective and considerate. She never made a big deal out of it; upon determining I might need her assistance, I was told to go to the bathroom and get ready for a good enema. I was placed in the Sims position and soon the soapy water was flowing. End of story.
Dr. Natasha Campbell McBride is very much in favor of enemas to treat constipation. Enemas are common practice in many countries around the world, and a time honored method. We have a lot of anxiety about them in this country and culture. I liked your description of your mother’s matter of fact, gentle approach. It’s not a story that is often shared. Thank you very much for writing.
CT Daddy says
My 5 y/o had a really high fever and vomiting. 4 days of hospitalization and 10 days of strong antibiotic cocktails and now she is blinking excessively and constipated a month later.
I have been using fiber additive and calm. But in moderation. Now going to use culturelle, 1 tsp of Calm and 1/2 tsp of fiber every day. I will report back on progress.
I think the author of the original post is right, this a gut/flora issue and I plan to address aggressively, my daughter also got Mg supplemented which ended abruptly in the hospital stay and that needs to be increased. Fiber used to solve our issues in the past with a 1/4 tsp, but this is more severe. Hopefully this works! Keep you posted.
Sounds like a great plan. I wish you all the best.
CT Daddy says
Follow up- My daughter still hasnt gone on her own. We have been giving her suppositories for the last 3 nights and that has gotten her to go a little bit. The first 2 nights she had formed stools and it was about a golf ball size. Last night it was pasty and a little more than a golf ball. So we have the poop in a passable form at least and we are going with the forumula I mentioned but we also added an organic apricot juice that has 3G of fiber per 8 oz and have upped her soluble fiber to 1 teaspoon which is another 1.5G of fiber, she is eating half an apple, a carrot and some other gluten free foods rich in fiber like millet pancakes and brown rice pasta, so we hope to clear out the bowel so it can shrink and resume its job and hopefully move this now much softer stool along on its own. I will report back in a few days if there is progress (fingers crossed)
CT Daddy says
Ok, sorry it took me so long to come back. I am pleased to announce we have resolved our daughters issues finally using Calm, fiber and culturelle. It took some suppositories to get things moving the first couple of weeks, but now she is moving regularly on her own again thank God.
Interestingly, at one point I called her pediatrician to let them know that we had stopped Miralax and to ask how much fiber it would be OK to give. The Dr. asked why we stopped Miralax. I told her because my daughter had intense abdominal pain and that is unacceptable. She doubted the pain was from the Miralax. I told her that I looked on the internet and it was the #1 side effect and it didnt even make her go, I had to use a suppository. She mumbled her disagreement, but I told her Miralax was off the table and that was last we spoke. I plan to leave a message for her later that my daughter is regular again and share how we did it so she can share with other patients.
We are giving her:
1 tsp Calm
1 tsp of Fiber
1 packet of Culturelle
That is in the AM.
If by 6pm she hasnt gone we give her an extra 1/2 tsp of fiber.
She is eating almost an apple a day and other fiber rich foods.
This article above pointed me in the right direction and saved my daughter a lot of pain and suffering. Shame on the medical community for forcing this drug on children.
Some constipation responds well to extra fiber, and for some it seems to make things worse. It seems like there are very different types, in this regard. It sounds like you are discovering what works well for your daughter. It’s so important to be aware and individualize the approach, as well as to know that what works May change over time. Best wishes to you on your journey
CT Daddy says
Yes, I first heard about Calm from my boss, who also warned not to give fiber. But I did anyway because it used to help my daughter and the Calm alone wasnt working.
I think some mixing and matching of the natural elements that help people go will help people find what works for them. We also supplement Vitamin C and Flax Oil, both of which help people go as well.
Thanks for this article, this website and your assistance in helping us resolve our issues naturally and end the Miralax.
You are most welcome. I am so happy that it is useful to you
coco cabana says
What I don’t understand is why the gastroenterologists suffer from such a lack of curiosity, and don’t even pay attention to the differential diagnosis method they were taught in school. Constipation is a symptom of the problem, not the problem itself…and the whole explanation that a child is “holding in his poop” is nonsense.
After three years of trying to figure out what was wrong with our son, and after the local hospital nearly killed him trying to force MiraLAX into him, it turned out that the problem was something called “Helicobacter Heilmannii” a zoonotic bacteria that people can contract from the kisses of their dog or cat.
Symptoms include sudden change in stooling habits, black noxious smelling stools, overflow encopresis, dysmotility, early satiety, abdominal pain. My son was 7 and suddenly he was back in pull-up pants. The doctors kept saying that it was behavioral, kept telling us to do “toilet sitting” exercises, dietary changes, etc. and kept prescribing MiraLAX — it affected no change in his condition. This went on for three years.
I ended up taking my son to the hospital, thinking they would be able to help. They looked at us strangely and with suspicion, they didn’t listen to a word I said, they kept trying to force down the MiraLAX, they were utterly inept in every way, and in the end they almost killed my son with the careless administration of Ativan through a PICC line — in under 30 seconds, my son almost died because the nurse had induced congestive heart failure.
Twelve days in Hell, and I was not free to leave the hospital with my son; the hospital kept asking me “are you a doctor?” any time I asked questions, and a social worker followed us around like a shadow, and it was only after that terrible medication error that they couldn’t wait for us to leave. On our way out, I noticed a smell to my son’s stool that hearkened back to a stray kitten we had taken in three years earlier, and then my subsequent research led me to find H. Heilmannii.
When my son tested positive for the bacteria (which our family doctor had never heard of) I was exuberant; H. Heilmannii is treatable with a two-week regimen of antibiotics and a stomach acid reducer; left untreated, however, it evolves into gastric mucosal lymphoma.
He took the medicine…and then CPS showed up and took our 10 year old son and his nine year old sister — the reason? BECAUSE I HAD TAKEN IT UPON MYSELF TO DISCONTINUE THE MIRALAX. It had nothing to do with MiraLAX, which made my son so nauseous. But the truth doesn’t matter to CPS, and our children have been gone now for more than eight months.
A terrible nightmare. I am so sorry.
CT Daddy says
Coco, that is insane! I get the feeling there is more to the story, but what a nightmare!
Please contact me. Parents against miralax, Facebook. I understand, 4 years ago, just now picking up pieces!
coco cabana says
Reading the preceding posts made me weep, bitterly, for my children, and myself, and you and all your children; if your child is having gastrointestinal issues that aren’t responding to the treatment your doctor recommends, please pay careful attention:
We have four children, ages 23, 19, 10 & 9. When our 10-year old son was seven, he experienced an abrupt change to his stooling habits; specifically, he suddenly began soiling his pants, and it black and smelled toxic. My husband and I didn’t even know what to make of it, for he had been potty trained normally like the rest, and he was otherwise normal behaviorally. He also experienced episodes of acute abdominal pain and vomiting. I thought he might be constipated and gave him some chewable Pedialax, which had no effect.
I took him to our family doctor, whom we had selected from a list of providers based on proximity to our home; since he was in family practice, I selected him to be our family’s doctor, and I never had any complaints with him prior to this. When I told him what was going on with our son though, he said it was constipation, and suggested I give him MiraLAX.
So I did, and it affected no change other than making our son very nauseous. We continued with this for a time, and of course all the while, the warning label on the box had me worried: “do not use for more than seven days”, “not recommended for use in children”, “if this product fails to produce a bowel movement or causes cramps and pain, discontinue use”. Those types of things, and I wondered if I should continue to give it.
So, we went back to the doctor, who very breezily explained to me that our son had “childhood fecal retention disorder”, that he was “holding in his poop” because he had suddenly become “afraid to poop”, and he directed me to give our son a dose of MiraLAX in the morning and a dose of DulcoLAX at night. This diagnosis really irked me, and I just really knew that it was wrong. But I went ahead and did what the doctor ordered…again, with seemingly no effect, no change, no improvement.
I would bring our son back to the doctor several times; sometimes, I would take him to the urgent care facility, and no one could tell me what to do. The suggested remedies become more invasive as I tried suppositories and then enemas, following the doctors’ instructions — nothing worked. The soiling continued, requiring our son to wear pull-up pants every day. This basically went on for nearly three years, and when I questioned it, the doctor continued to ascribe a behavioral cause for our son’s symptoms. I, too, was told to increase the amount of MiraLAX, and that he might have to take it for the rest of his life.
My research indicated that the symptom of black stools is either because of an iron-rich diet, bismuth medications, or bleeding in the small bowel; it also indicated humans cannot exert any control over the small bowel. We asked our son to describe what was going on; of course, since the topic was all about poop, he was embarrassed and hesitant to talk about it…but also because it was difficult for him to find the words to accurately explain what he felt was going on inside of him…after all, he’s still a child, not Doogie Howser, MD.
My son and I are/were very close, I loved him so much, we had such a good relationship, we had a very close bond. All I wanted for our son was for him to feel better and to go back to how he had been before this suddenly happened to him. By now, he was getting ready to enter the fifth grade, and after that it’s middle school, and I just wanted him to be free of this health complaint. We agreed that the next time he had acute abdominal pain, we would go to the emergency room at the hospital so they could look at it with all their diagnostic machines and whatnot and figure out once and for all what was wrong and fix it.
When it happened again, I took him to the local “Childrens Hospital.” They asked, “what brought you here today” and as I began to provide the history and describe my son’s symptoms they began to look at me funny…quizzical and skeptical. They decided to admit him, and that was the beginning of 12 days in Hell. They ignored everything I said, putting him on a clear liquid diet and literally pumping Go-Lytely into him to “clean him out.” He got so sick, vomiting ceaselessly, and still no poop.
Occasionally, they would ask me what *had* worked, and I told them a “milk and molasses” enema. They jumped on it, and administered a rapid succession of enemas, and my son was in so much pain and so sick, and nothing worked to “clean him out”, there was still so much stool inside of him according to the x-rays. The decided to do a manual disimpaction, believing that a lump of hard stool must be blocking things up…but that was not the case either. They subjected him to an endoscopy that was just…I don’t know. It was so *aggressive* when they couldn’t get it to go down past this one section of him stomach, they just kept trying to force it through, and it didn’t work. My son got so sick as they poke and prodded him everywhere in every way, trying to force the laxatives down, even though I had already explained that none of the oral laxatives had any effect.
My son lost so much weight; the staff kept urging me to leave the hospital for some “me time” and I didn’t want to leave his side, I was just so afraid of him. The hospital assigned a “social worker” to us, a do-do bird who shadowed us everywhere we went. I did not fee free to take my son from the hospital.
In the time we were there, my son was placed under general anesthesia four times. When after everything they did my son continued to “not respond to therapy as we had anticipated” they said he was going to be there for at least five more day and ordered the placement of a PICC line for direct nutrition.
This PICC line went straight to his heart. They placed in the after noon of day 10. In the early morning hours of day 11 a nurse came in to flush out the line, and my son cried that it hurt. The nurse rolled her eyes, commenting on his “anxiety” — she put in a call to the doctor, who gave her the go-ahead to give our son a dose of Ativan to calm him. And then she pushed the Ativan in and nearly killed him; she induced congestive heart failure, and my son almost died right in front of my face, and I will never forget the sight, I will never forget that moment.
I cried out that she had overdosed him and she denied that she had, and another nurse led me out of the room and told me if I didn’t be quiet and calm down they would prevent me from re-entering the room. I assured them that I was perfectly calm and that if my son was going to die, I was going to be sure to watch him go and take note of everything I saw. I spent the next several hours holding my son, so afraid; after three hours of babbling and seizures he finally fell asleep.
In the morning, those quacks walked into the room all smiles, remarking on how great our son looked, and that they felt it was just a stomach bug and as soon as he passed some stool he’d be ready to be discharged!! I couldn’t believe it. After some time, he passed a little orange-ish turd, and they shoved the discharge papers in my face to sign…but I recognized the smell, linked it to a smell I had detected on a stray kitten’s poop…we had taken in this little stray kitten three years earlier…
Long story short, my research led me to wonder if my son had something called Helicobacter Heilmannii — look it up, its a bacteria you can catch from your cat or your dog, and it causes all kinds of gastrointestinal disorder. It is treatable with a two-to-three week regimen of antibiotics and stomach acid reducers…but left untreated, it causes lymphoma of the gastric mucosa. I asked our doctor to test our son for it, and the test came back positive, and I was elated. Finally, a real diagnosis!
But the hospital had already started a horrible, nightmare train a’rollin…the doctors there claimed I had “medically neglected” my son, that if only I had given my son MiraLAX as the doctor had recommended, my son would never have had to come to the hospital at all; they reported me to child protection services and told them I had Munchausen’s Syndrome by Proxy, and that I had deliberately sickened my son because I enjoyed the secondary attention I got from the doctors from my son’s illness. CPS came and took our 10 year old son and our 9 year old daughter away. Two months after his removal, our son suddenly began stooling normally again, and everyone pointed to it like, “see, all we had to do was take him away from his mom, and he got better.” But it was because of the antibiotics he had just finished taking before they removed him from our care…
And that was eight long months ago…we get one four-hour visit with our kids every month, and two phone calls per week…the dependency and neglect system is so corrupt and evil…CPS told my husband they would return the kids to him if he divorced me…we’ve been married 24 years…we miss our kids so much…the hospital and CPS have destroyed my whole life, my whole joy stolen from me and my heart and my whole world broken
Iam extremely confused. My daughter has had great bowel movements in the past. She started full day kindergarten last year and in first grade this year. And ever since she was in kindergarten, I did not take note..but think she had regular bm…wasn’t until three weeks ago that my mother said that she doesn’t have daily bms that I started to take notice. I also realized that she has said her tummy hurts at bedtime for the past year at bedtime, but I brushed it off since it wasn’t consistent…we took her to our pediatrician and he said miralax adult dose daily, then 3/4 dose daily for month 2 then 1/2 dose for month 3 and 1/4 month for the last fourth month. This sounds extensive and worrisome given its adult dosage and the duration… I don’t know what alternatives are. He says the long duration is to give her colon time to shrink since it has expanded. Any other alternatives? I felt like I needed to do the miralax to get rid of the backup, then also to reshrink her colon to prevent future. Suggestions? Help. I just feel so guilty right now.
In my practice I use a Magnesium Citrate powder called Natural Calm. I prefer the unflavored variety. It is fizzy when initially prepared, by mixing the powder in water. If you do not like the carbonation, you can let it sit for a while and it becomes flat. The dosage needed is very individualized. One person may respond to a teaspoon and another to a heaping tablespoon. Most of us are Magnesium deficient and this is a remedy that is well tolerated and non-toxic. Often it can be purchased at Whole Foods or on Amazon.
Guilt is part of the territory of motherhood. Best wishes and blessings for 2105.
We recently took our son who will be 4 this month off of Miralax he has been on it over a year. The reason he was prescibed the Miralax is because he holds his bowel movements. I am using the Natural calm- just got it. What is a dosage recommended for a child who is 4years old and weighs 40lbs? There is dosage information on the container but iI assuem that is for adults.
Also could you tell me if there are any side effects from the natural calm such as stomach cramping, vomiting, etc.
The dosing is very individualized. Some people respond to very little and others need much more. You will need to experiment. It is my experience that Natural Calm is quite gentle.
Is the Natural Calm safe to take long term?
Yes, as far as I know, it is safe for children and adults. You will need to experiment with what dose is effective.
The dosage of Natural Calm varies from one person to the next and there will be a need to experiment. I would start very low and work your way up. It is usually experienced as very gentle.
Thank you for the response. I have an update and some additional questions. The calm is great, I can see that the stool is softened so it works just as good as miralax does. My son holds his bowl movements, he refuses to go to the potty. He hides when he gets the urge and even with the stool softenend he is able to hold most of it in. I have been using pediatric enemas and also liquid glycerin suppositories which I had to give him when he was on the miralax as well but for some reason I an unable to get the bowl movement out using enemas and suppositories since I switched to calm. I have to change his diaper multiple times because he can still hold it in and only a little gets out. I don’t know what else to do. I am worried he is going to get impacted, sick and that I will need to take him to the hospital. We also give him fiber is there something else we can add to this regimen that might help? He is already afraid of the enema and the suppostitory. I am very worried about him. He will have his 4year wellness visit this month and his doctor told me a couple months ago he may need miralax until he’s 6 years old. I will not go back using that I can see the calm works. Any other suggestions would be appreciated. Thanks, Lisa
Bee Budd says
What are doctors getting?! KICKBACKS FROM THE MANUFACTURERS? TO GIVE PEG TO CHILDREN IS CRIMINAL!!!!!!!!!!!!!! AND FOR ADULTS TO TAKE IT, IT SHOULD BE OUTLAWED!
I have been taking Miralax daily for well over a year. I have a fissure that rips open if my stool isn’t very soft and it’s very painful. I am devastated to read about it not being safe. I had no idea. I first learned of it when it was given to my son, and I was told by his doctor at the time how safe it was and that he gives it to his own child. Fortunately my son hasn’t taken it many times, though just this week I gave it to him a couple of times. Never again.
A product that I recommend to my patients who have constipation is Natural Calm, which is a Magnesium Citrate powder. I recommend the unflavored variety. It is necessary to experiment in order to find the dosage that is appropriate for you, but it is a safe and most of us are deficient in magnesium.
Thank you for your comment and recommendation. I was able to order the Natural Calm and it seems to be helping, and I am also enjoying how it helps me fall asleep at night. I am having it in hot water an hour or so before bed, overall I am really pleased so far.
Thank you for taking the time to let me know! I am so happy to hear that you are having a good result.
carol chittenden says
FOR IMMEDIATE RELEASE Contact:
September 22, 2014 Carol Chittenden
Empire State Consumer Project
FDA TO STUDY SAFETY OF ADULT-ONLY LAXATIVES PRESCRIBED TO CHILDREN
Rochester, NY – Due to serious safety concerns raised in an FDA Citizen Petition filed by consumer group, Empire State Consumer Project (ESCP), last week, the US Food and Drug Administration (FDA) agreed to study the effects of polyethylene glycol 3350 (PEG 3350) laxative use in children. The group submitted the petition in 2012 on behalf of parents who say their children have been harmed by polyethylene glycol 3350 drug products. There is special concern about the safety of PEG 3350 laxatives like Miralax, which are not approved for use in children, and are not approved for more than seven days use. Many children are prescribed multiple daily adult doses by doctors off-label, often for months or years at a time. The ESCP petition calls for an investigation into the effects of PEG 3350 on children and a boxed warning on PEG 3350 products. The boxed warning was not granted, but the FDA has decided to update the labeling of prescription PEG 3350 bowel preparations with more stringent warnings and precautions for patients with certain health conditions.
The safety concerns reported in the FDA Citizen Petition are symptoms similar to those of ethylene glycol toxicity. The petition grant includes an agreement by FDA to study the potential for PEG 3350 to degrade into ethylene glycol (EG) and diethylene glycol (DEG), and to study the long term effects of PEG 3350 products on pediatric patients. Ethylene glycol and diethylene glycol are chemicals used to make antifreeze. Both are toxic to the central nervous system, liver, and kidneys when ingested. In recent history, DEG contaminated cough and acetaminophen syrups killed hundreds of adults and children. In 2007, the FDA issued a warning for consumers not to buy toothpaste from China, as some brands were made with DEG.
The FDA Adverse Event Reporting System (FAERS) shows over 7,000 adult and child adverse event reports that include at least one PEG 3350 product, including a number of deaths. The number of reports rose from 2,257 in 2012, when the FDA Citizen petition was filed. In 2009, the FDA Drug Safety Oversight Board acknowledged neuropsychiatric, metabolic, gastrointestinal, and kidney events in children who took PEG 3350 laxatives, but felt that “no action was required” at that time:
“The Drug Safety Oversight Board discussed reports of metabolic acidosis, metabolic acidosis with increased anion gap, and neuropsychiatric adverse events in children using polyethylene glycol (PEG) products. Metabolic acidosis is a disturbance in the body’s acid-base balance and causes too much acid in the blood. In some situations, metabolic acidosis can be a mild, chronic condition; however, it may lead to shock or death in severe cases. Neuropsychiatric adverse events may include seizures, tremors, tics, headache, anxiety, lethargy, sedation, aggression, rages, obsessive-compulsive behaviors including repetitive chewing and sucking, paranoia and mood swings.” “It is unknown if prolonged duration in solution would change the chemical properties of PEG-3350, and what the actual content of ethylene glycol or diethylene glycol or other low molecular weight PEG would be under such conditions.”
In addition to the ethylene glycol and diethylene glycol children may be exposed to through the degradation of PEG 3350, the FDA has tested 8 lots of polyethylene glycol 3350 and found ethylene glycol and diethylene glycol contaminants in the product itself:
“To better understand the level of polyethylene glycol impurities in PEG, the FDA Chemistry and Manufacturing group evaluated PEG 3350. This analysis of eight lots of PEG 3350 confirmed the presence of small amounts of ethylene glycol and diethylene glycol in all lots tested. Based upon the recommended daily adult dose of 17 mg daily dose PEG 3350, the maximum daily exposure of ethylene glycol would be 0.005 mg/kg/day for a 60 kg patient, or 0.015 mg/kg/day for a 20 kg pediatric patient (approx 5 years of age). Other low molecular weight PEGs were not included in this analysis. However, it is not known if any of these LMW species are absorbed and if so to what extent. Understanding the human absorption profile of LMW species is the first step needed in trying to understand the possible contribution of PEG 3350 use to the development of adverse events in children using this product chronically.”
Empire State Consumer Project has since petitioned the FDA to issue a Drug Safety Communication regarding the finding of ethylene glycol and diethylene glycol in all lots of PEG 3350 it tested, so that parents of study participants and all parents can be made aware of the potential for PEG 3350 to contain ethylene glycol and diethylene glycol. This petition for a Drug Safety Communication was denied. The EPA recommends that children not be exposed to more than 20 mg/L or 20 parts per million (ppm) of ethylene glycol in drinking water per one day or 6 mg/L or 6 ppm per day over 10 days. The adult doses of PEG 3350 tested were found to contain 0.3 mg of ethylene glycol of daily exposure for a 44 lb. child. This exposure is in addition to any EG and DEG exposure that may be found to occur from PEG 3350 degradation of the laxative products. The health effects of long term exposure of children to PEG 3350 are not known, although risks from short term exposure to EG and DEG are well documented in humans.
Empire State Consumer Project is a 501c3 registered Not-for-Profit Organization dedicated to reducing the use of chemicals toxic to human and environmental health. We accomplish this by educating consumers and industry, conducting product testing and reporting, and by advocating for regulation where needed to protect the public interest.
Empire State Consumer Project FDA Citizen Petition and FDA Response
NIH Grant to Study PEG 3350 and Test of 8 Lots
Empire State Consumer Project, Inc.
Joann Buselli says
I believe my son is suffering from neurological side effects of long term use of Miralax over 9 years he may be experiencing seizures or pressue headaches. Nww are doing a complete neurological work up. If I quit giving him Miralax will these side effects disappear in time. Pherill has no energy, no desire he is lethargic extreme weight loss and no longer have a personality of himself I am gravely concerned
Mike Koehler says
I hope your son is doing alright!!
Your story seems all too familiar, our son was diagnosed with epilepsy in May 2014; the following 13 months were “not pleasant”. However, these last 3 months or so have been wonderful, no seizures since late May and everyday we’re seeing improvements in our son, we’re so thankful.
A quick recap of our story – first anti seizure medication was trileptal, it contained PEG. Several seizures while on this medication.
In Sept. 2014, GI orders us to do a clean out; he has several seizures.
In January 2015, the hospital, against our wishes, does a clean out using an NG tube and golytely(PEG w/ELS) our son had 21 seizures in 9 days.
The common denominator was the PEG, we sought out a functional medical doctor, did a couple tests that showed his gut wasn’t in the best shape. Made some dietary changes, added in some supplements and a couple months later our son is back to his pre-diagnosis state. We still take the anti seizure medication however, I believe with every passing day the seizures are now a thing of the past. I wonder if anyone has ever overcome an epilepsy diagnosis in 12 months?
My 3 year old daughter has been struggling with chronic diarrhea for about 2.5 years. She was breastfed for 17 months. She started on solids at 5 months and by 7 months she had diarrhea 4-6 times a day and no regular stools. The same is true today years later. We have changed her diet many times by removing eggs, dairy, gluten, fiber, etc. We did bloodwork and recently saw a GI Dr. He took an X-ray of her stomach and called her problem “Overflow Diarrhea”. He suggested miralax for a month to clean out her full colon. She already has explosive diarrhea EVERY SINGLE DAY. If her colon is full, why is the constant diarrhea not removing it from her colon? Why would miralax help? We didn’t buy the miralax. If that is the problem, is there a safer option to help clean out her colon? All the other people who commented used miralax for constipation. My daughter has NEVER been constipated a day in her life. Please help.
Jennie. Look up encopresis. Your daughter has what is called overflow diahorrea. It sneaks around the hard poo. Look up the fb group called Help! My child has encopresis. It’s an awesome support community.
c baker says
What that diagnosis means is that your daughter has been constipated her ENTIRE life, but you don’t realize it because she’s completely blocked up, and the only poo that can come out is watery like diarrhea. But it’s not diarrhea, because the massive blockage is still stuck there, keeping her from pooing more normally.
I started giving my 20 month old miralax for chronic constipation and now she’s had her 2nd bladder infection in 3 months… We are off to check her kidneys tomorrow… I’m really feeling that there is a connection… My dr said to give her full adult doses 3x a day till she goes then once a day to keep her going.. I’m sick to my stomach thinking that thus us what it’s from
I am sorry to hear what you are going through. I don’t know why doctors recommend Miralax. Natural Calm is a very effective product that is so much safer. I really don’t get it.
My daughter has had stomach pains for 3 1/2 weeks. When we took her to the ER, the doc diagnosed her with constipation and prescribed her with miralax. We put her on it and then changed the course of treatment following another doc’s recommendation and increased it to 3 full capfuls of miralax 3x/day. we are on day 3 now and she still complains of pain. my question is how long does it take to see some relief in her pain condition? She’s had runny stools and 6 bowel movements for the last 2 days. She weighs 39 pounds. I’m so frustrated that she’s still having this lingering pain.
It’s so distressing when your child is in pain and you can not be able to figure out how to help. I have no idea how long she will have pain. In my own practice I never use Miralax. For constipation I suggest using Natural Calm, a magnesium citrate powder, with the dosage varies depending on the individual.
My 2 year 4 month year old daughter was put on a 6 week course of Miralax for her constipation. On week 5 I finally figured out that all of the odd side effects I had been seeing was due to Miralax. She started having an eye blinking tic, face wiping tic, extremely hypersensitive to sound, decreased attention span, clumsiness, behavioral outbursts. I took her in to the pediatrician today and she was zero help.
My biggest question is, other than completely stopping the Miralax, is there anything I can do to address the neurological symptoms. Or do they usually just go away on there own? I’ll look into the GAPS protocol. Anyone else with similar symptoms, and whats the prognosis. Thanks.
This all sounds very distressing. I suggest that you go onto the Miralax Yahoo Group and see if anyone there has any suggestions. Its a huge group and I think it would be a great place to look for answers. If you find anything out that is useful, please write back and share. Thanks.
Michelle Bradley says
Erin – I CANNOT believe I just read your post – I thought I was CRAZY!!!! I started my daughter on adult doses of Miralax 2x a due to severe constipation (5 years old). My dr. diagnosed her with encopresis and said this was the ONLY way to treat it. Ever since she has been on this she is a DIFFERENT child – very depressed and does this weird thing with her eyebrows and eyes. Her whole demeanor has changed – I feel like I do not know her. I just made an appt with an gastroenterologist – which I do not think is going to be much help – all I know is she will NEVER again take this! When she goes pee pee she asks me, “Mommy, did I poop?” How can she not know and how can this be a GOOD thing?
How is your daughter? Has the symptoms stopped?
Joann Buselli says
Did your child’s symptoms go away after stopping Miralax ? I am stopping it now after 9 years
Mike Koehler says
Sorry to hear of the issues while on miralax; hopefully things have improved!!
First of all, for the constipation consider something like the natual vitality calm or blue ocean minerals.
I would look into getting some gut health tests done; we utilized the great plains OATS test; simple urine test that you mail back in and we also did a stool sample. Both tests give detailed information on the health of the gut. Working with a functional medical doctor can help you understand the test results while working with you and developing a plan of healing. After being diagnosed with epilepsy our son has returned to us for the most part….like 99% back to pre diagnosis state of mind. He was in a very dark place which dragged our family into as well; those two tests may have saved our family!!
Terri Fites says
I know this is an older post, but I thought I’d pipe in. My daughter (now 7) had constipation since as far back as we can remember. Once as a strictly breastfed infant, she passed no bowel movement for 7 days. Without Miralax, she did not have a BM ever. I have had the same problem all of my life, only worsening, and no medicines were helping anymore. So I finally pursued gluten-free/dairy-free, then an elimination diet, and then GAPS. My family came along for the ride. Through this, we found my daughter was dairy intolerant. Take out ALL dairy sources strictly, and she started having once-twice daily BMs within 3-5 days. Put a dairy source back in, and no BM within a day. Going through GAPS, now a year later, she now has a BM every day, NO Miralax since I can’t even remember. Dairy, peanuts, and cashews slow her down some, but not completely anymore. I am a physician and never thought to take dairy out. We have seen two pediatricians and a family physician, and they offered no suggestion with regard to food. I am grateful that we have been able to change her course, so it’s not like mine! However, after a year on GAPS, even I am seeing improvement in all facets of “health”–but I’ve had to eliminate or severely limit dairy, eggs, nuts, and fruit. Bottom line–food counts, and we medical doctors need to know and acknowledge that. Not just in diabetes or heart disease, either. Thank you for your site. I enjoy it, and your writing is so clear, frank, and thoughtful.
Wow, Terry, that is really a totally impressive result with eliminating dairy. I am also intrigued that breast milk had the same constipating effect upon your daughter. It’s a blessing when the cause of the problem is so clear. For many people who suffer, the link is much less straightforward.
Physicians get no training whatsoever in this crucial area. It’s stunning. Instead a major training focus on prescription medications.
Thank you for your kind words of appreciation of my website. There is another Boston psychiatrist, Dr. Georgia Ede, who writes a blog called Diagnosis Diet that I think is very good. You might enjoy it, if you have not discovered it yet.
All the best, and Happy Mother’s Day. It so heartening to hear your success story.
Regarding breast-fed babies and few bowel movements: It is common for babies who are exclusively breast-fed to have few movements. They become very efficient at digestion, it is not a problem for most. (La Leche League is a good reference).
I’m sitting here for the millionth time researching Miralax. My 11 year old daughter has been on and off Miralax for years. We’ve been advised to use it liberally by her Pediatric Urologist, Pediatric Gastro Physician, and countless pediatricians. Once again, desperate for relief from chronic constipation and recurrent urinary tract infections, we’ve chosen a Miralax course of treatment. Once again, my daughter is soiling her underwear. Why am I putting her through it? We are always given a lecture on diet, fluids, physical activity. We’re handed 20 page, xeroxed papers on these topics of what to eat and drink, etc. Well, since she was little, my daughter has been an amazing eater. She loves fruits and veggies, she drinks water all day long. She plays outside constantly. I’m very glad to have come across this article. It is yet another wake up call to me that I cannot keep dosing my daughter with Miralax hoping she’ll “grow out of it.”
Thanks for writing. I am very sorry to hear what you and your family have been going through. It’s such a difficult problem. I just wrote a post about a probiotic Prescript-Assist that is particularly useful for constipation in some individuals. Have you also considered food sensitivities like histamine intolerance or oxalate intolerance as perhaps related? Conventional MD’s do not typically think about food sensitivities. It is clear that the conventional approach is so inadequate and ineffective for dealing with this problem. And according to the members of the Yahoo group, Miralax is not benign. I wish you all the best and pray that you will find a way to help your daughter with this difficult problem.
You have just perfectly described my 7 year old daughter. Thank you for posting. My pediatrician has just instructed me to put my 19month old on the same treatment. I simply cannot do this with a second child. I guess now I will be researching how to give them enemas. ?
Just glad to have a new direction.
SHARON DUFRENE says
MY CHILD WAS A HAPPY HEALTHY LITTLE 3 1/2 YEAT OLD LITTLE BOY, EXCEPT HE HAD PROBLEMS WITH CONSTANT CONSTIPATION. WE WERE SENT TO SEE A PEDIATRIC GASTROENTEROLOGIST AND WITH IN A 5 MINUTE VISIT MY CHILD WAS PUT ON A LG DOSE OF MIRILAX. 3 WEEKS LATER MY CHILD WAS SUFFERING FROM ALL OVER BODY SWELLING. HE WAS IN KIDNEY FAILURE. HE WAS DIAGNOSED AS HAVING NEPHROTIC SYNDROME. I WILL FOREVER BLAME THE USE OF MIRILAX FOR HIS CONDITION. THIS WAS 5 YEARS AGO. WE WERE TOLD THIS WAS A VERY SAFE DRUG TO USE, AND NO MENTION OF ANT SIDE EFFECTS, ESPECIALLY SOMETHING AS SERIOUS A RENAL FAILURE. THIS WILL BE A LIFELONG CONDITION FOR HIM NOW. I AM READY TO JUMP ON ANY COMPLAINTS FILED AGAINST MIRILAX. PLEASE JUST TELL ME HOW.
I am terribly sorry to hear of what happened to your child. I am not personally aware of avenues for complaints against Miralax, but the place to inquire would be the Yahoo group I mentioned in my post. It has a very large membership.
Concerns over the use of miralax long term should be addressed by the FDA. I totally agree with that if many side effects are being reported. That is a valid concern. Using enemas as a treatment for constipation in children instead is bad and dangerous advice. I strongly recomend against regular enema use in children. The very real risks and side effects of improper or regular use of enemas in children poses major cardiovascular risks to the child. Children have a much higher risk of obtaining electrolyte imbalances from enemas. There is also a very real and high risk of overload from tap water enemas. The colon absorbs water back into the body by adding extra there is documented risk of fluid overload to the subject. This puts a strain on the heart and the entire cardiovascular system. These risks are substantially higher and already validated in research unlike the miralax concerns and are much more dangerous. I am not recomending ignoring any miralax concern, but using enemas is irresponsible and dangerous advise for the children (especially under the age of six) suffering from constipation.
Your perspective is very different than Dr. Natasha’s, and enemas have been used in many cultures around the world as a time honored healing modality. My concerns are much more around the psychological experience of the child, in terms of the potential for having an experience of intrusion and invasion of the body and loss of control. I think a very sensitive thoughtful approach with careful attention to the child’s experience to ensure that it is apprehended as loving parental care is essential.
Oh how I WISH I had read things like this 6 years ago when our son was dx’ed with encopresis!! We were put on a daily adult dose of Miralax, told we had narrowly escaped surgery due to severe impaction, and sent home with a ‘he’ll grow out of it’. Well he didn’t. He ended up traumatized with the constant soiling, we did reattachment therapy with a child psychologist, he got sicker and sicker and sicker. He eventually regressed to the point of losing auditory processing and motor skills and was dx’ed as Asperger’s and SPD. We did our research, started the GAPS diet 14 months ago. Initially, we still couldn’t wean off the Miralax, but within 9 months we quit cold turkey. He had regained already most all of his skills and the sensory issues were gone. But when we quit the Miralax?! Sudden burst of motor skills development ensued, no issues with daily voiding, and the occasional dry night! Quitting Miralax was the best thing ever!! I will never know how much of our 5-yr ordeal was really due to the damage caused by Miralax, but it’s not anything I would recommend to ANYONE for more than a day or two!
Thank you for taking the time to write. What a remarkable journey you have been on with your son. It’s terrible what you have been through, but what a relief that he is healing.
It is amazing how prevalent and accepted the continual use of Miralax is for children. Under doctor recommendations, we have been using Miralax for almost 4 years. While I have never been comfortable with it, none of the doctors I talked to could suggest good alternatives. I even asked about diet alternatives and was told we needed to handle things with medicine first. Now I wonder how many other problems we have caused with the continual use of Miralax. Not a good feeling!
My concern about enemas is that they seems like a very invasive practice. We have discussed this with our psychiatrist (Thanks, by the way, for the recommendation of Dr. Narcisi. It has worked out great) andwe both feel that, at least in my son’s case, part of the issue is with control. By giving enemas and suppositories, we would be taking all the control away from our son leading to a whole slew of other issues. Of course, being on Miralax + Ex-lax probably made him feel even less in control 🙁
Hi Jason. Glad to hear that the referral worked out.
I know what you mean, the whole Miralax thing is quite insane but so totally characteristic of the standard conventional medical approach at this point in time. There are many similar examples.
The whole issue of enemas and suppositories is a really complicated one. I do not have personal experience with the Soiling Solutions behavior protocol I referenced in the blog post, but it might be worthwhile investigating. There is also a Yahoo group that is about encopresis and Soiling Solutions, so there would be a lot of other parents’ experience to draw upon. I believe enemas and suppositories are much more physiologic than oral laxatives, and I think much depends upon the way the whole procedure is approached. Dr. Natasha told stories during the training of small children who would literally take their parents by the hand and lead them to the enema bag because it provided such relief.
I do not believe that it has to be a traumatic procedure, but it definitely needs to be approached very thoughtfully.
Thanks for writing.
I’m sitting next to my 8 y/o daughter at LeBonheur Hospital in Memphis, TN. Prior to two weeks ago, my daughter was a happy, vibrant, advanced child who has suffered chronic constipation since she was a few days old. She has been fed ridiculously large doses of miralax her entire life without relief and two weeks ago was sedated at surgery center and the GI doctor digitally removed impacted stool of lower third of her intestines. She had abdominal pain within hours of the disimpaction , pain became severe after she ate, GI doctor advised this was normal and to give her six times the adult dose of miralax every day until she had diarrhea for several days. Desperate to fix her problem I followed his orders. and my daughter suddenly passed out and has suffered neurological dysfunctions, cardiac arrythmias, lethargy, headaches, dark eyes, and numbness to her left leg. Just weeks ago she was playing basketball and extremely active and vibrant. They have done EEG’s, cat scans, EKG’s, cardiac ultrasounds, kidney tests, and can not determine a diagnosis, meanwhile the GI doctor who was very friendly in the past has become evasive and refuses to take x ray of her abdomen after recommendations from hospital staff. He is insisting that we give her absurd doses of miralax and denies any relation to her current condition to her GI tract. I’ve begged and pleaded with doctors to test for Hirshsprungs and get turned down time and again. I’m so fed up with Miralax due to 8 years of pushing it on her without improvement! Why, if they have ruled out everything else are they so hesitant to look at her GI tract?
I am so sorry to hear about what you and your daughter have been going through. It sounds terribly distressing. I really do not know what your doctor is thinking and cannot comment usefully, I wish you all the best
Polly Poffenroth says
I am so sorry to hear about your daughter. I empathize with your situation and pray that your daughter gets better. I implore you to get her off Miralax. It is toxic and should not be given to children. My daughter was on it for 5 years and I am convinced it is related to her learning disabilities. People think I’m crazy or in denial but it is what I believe as her mother. Find a doctor who will listen to you and give you a treatment other than Miralax. Good luck.