Thank you to Jonah’s mom, for sharing her son’s story and writing this guest post. She requested that I publish their story anonymously for her son’s privacy. I have added links to relevant articles to help you on your journey.
Jonah’s Miralax Story
By 24 months my son Jonah was still on formula and while he was eating a wide variety of fruits and veggies they were all strained stage one baby food. He had just started with small pieces of toast and Cheerios. When I tried to introduce the next stage in baby food, or what my husband and I were eating, either just finger size or strained he gaged and threw up anything he had eaten. So I just kept going back to the strained baby foods. I think it’s important to note that Jonah was born almost 8 weeks early, and while he was hitting most milestones at his real age versus his “corrected age” he was definitely just not able to swallow many textures of food.
At his “well-baby” 24 month checkup his Pediatrician was determined that I “had” to stop the baby food “he will not starve himself”…well that wasn’t true, and yes a child who physically can’t eat/swallow certain foods will become ill. The same Pediatrician also said to stop the formula he had been thriving on, and start him on cow’s milk. I followed both recommendations, even though ALL my motherly instincts screamed not to do either.
Two weeks later my son was severely constipated in the hospital and being given his first ADULT dose of Restoralax (Restoralax is the same product as Miralax, with the same ingredient Polyethylene glycol, just sold under a different name, called Miralax in the United States, we live in Canada). That was the start of our
My son ended up having a couple of very large and very painful stools, after that he withheld – for the next 2 and half years he did not make one bowel movement by himself, I manually manipulated the stool out of him every day so he wouldn’t get backed up. Some days it was 2 hours of sitting and rocking his legs back and forth and singing songs as we both cried and mentally and physically became exhausted.
When he was 4 and
During that whole time, he was on Restoralax. I gave it to him daily (2 tsp a day) until I saw a Mum in my local Facebook Mum Group post something about Restoralax and that it could be dangerous. I started to Google frantically with dread and a sick feeling in my stomach. Then I found Wendy’s group and asked to join.
Realization that Miralax caused my son’s issues
Then my whole world fell apart as I came to the horrific realization that I had slowly poisoned my own child, this precious being that I grew in my body, that I would die for…I had been feeding him toxic garbage that had damaged his neurological system, and now we live with the new knowledge that he was on the autism spectrum.
After I cried an entire night, I began to reach out in this group and others; I began to share my story and several amazing kind and generous mothers responded, Wendy was the first amazing Momma who truly helped save my sanity. She helped me to understand a few things that I try to pass on to all new parents starting this new phase in your life.
What did I do?
My son was on Restoralax for almost 5 years, the moment I realized how dreadful and dangerous it is I knew he would never ever have one more dose, I stopped cold turkey.
Now, some of those words of wisdom I heard from women like Wendy, who have been where I was. First, we can only do better, when we know better. Second, I use the airplane analogy – we must put our own mask on first- before we can help our child. Third, I had to lay down my guilt as it was consuming me, and my rage, and my anger against the makers of this poison, and every doctor out there who is pushing it. I had to set that all aside and lastly fourth, get busy trying to heal my son, devise a plan. Many people suggested seeking out a functional Doctor or a Naturopathic Doctor (ND), I found an amazing ND who we saw within the first 2 weeks of being off Restoralax. She helped to put together a cohesive plan, or protocol that helped work on dealing with
My son Jonah at age 7 on Restoralax was a picky eater… since the age of 2, he has not eaten fruit, vegetables, meat, nothing except bread, (toast) peanut butter, ice cream, yogurt, chips, goldfish crackers, and chocolate cake snacks. That was his entire diet for almost 5 years.
Fourteen Months later, Jonah is Restoralax FREE no supplements of any kind (for constipation) now has a strict gluten-free and mostly dairy-free diet and has a “slightly” broader diet. Jonah now has a bowel movement 2-4 times a day, which his ND says is a good goal for children his age.
So, how did we get here?
I devised that plan I talked about, I call it our “protocol”, and I did it with the help of amazing other parents who have walked this path before me, as well as a very educated, compassionated and dedicated ND, whom we continue to see.
The following is what I did, and what the results were/are from getting my son off of Miralax.
Note: I share our experience to help other parents as so many helped me, but I would be remiss if I did not say that after over a year of reading thousands of posts by parents, just like me, there is no one single “magic cure” or one plan that will work for every child (or adult). There are however many remedies that do however seem to work very well for many children, and thus, we share in hopes that parents can, as I did, develop a protocol that works for your child. One final thought, before I go into exactly how I handled the diet and protocol. This is truly an observation from reading thousands of posts and comments in various groups about childhood constipation; it often takes MUCH more to help our kiddos to begin to have healthier bowel movements than we might imagine it would take. I often read parents say “they have tried everything” but when we dig deeper, they may have tried one thing, then another, then another. I believe, from working through this with my own son for the past 14 months,
So, as it turns out…it is possible to remove gluten and dairy, even from the pickiest of eaters.
Food Therapy, ugh, will my kid EVER eat anything other than gluten and dairy products??
So, as I mentioned my son barely ate anything but things that were either gluten or dairy, in fact, every single thing he ate fell into those 2 categories. His eating issues were so severe we did “food therapy” with his occupational therapist.
He was the only child, she said, that in 8 weeks, she could not get to try even one new food! No way. When she tried to “hop” a strawberry up his arm, he kicked so hard he fell off his chair and ran screaming to the next room. Food was a SERIOUS issue with him.
So, a wonderful educated Momma (Wendy 💗) who walked this walk before me said to me, “just keep offering new things”, she and his ND explained to me that the chemical in Restoralax does something that makes it extremely difficult for kids to even want to try new foods, it affects them, medically, there is an explanation which sort of escapes me as I write this in the middle of the night, but suffice to say- they were correct. They both told me…wait and watch, the longer he is off Restoralax and the longer he was on good probiotics, putting the good stuff back into his gut, he will “naturally” want to try new foods.
I didn’t believe them, to be honest. But, I did what they said. I had a protocol in place that was helping with
One day, last August, his dad had ordered a pizza, we hadn’t had that in the house in a year as I found out I’m diabetic and I was on a strict diet. So, his dad had a pizza this one night, my son walks up to him, takes a slice and says “I love pizza” and proceeded to eat 3 pieces! Complete with pepperoni, mushrooms, green peppers and bacon! I almost fell off the bed (yup, we were eating in bed that sat night :)…and, that was the beginning of so many amazing changes!!!
I knew then that I had to find a new gluten-free bread that I could sub out for his regular bread, I tried about 10 different kinds before I found one that he liked, and that was it!
I took everything else away, got it out of the house. No more fish crackers, no more Jos Louis snack cakes,
I also pulled all dairy. He was a big milk drinker, he was still drinking 3 cups of milk a day,
This one very wonderful (and smart) Mum said to me, ” Mumma…even if he eats nothing but that GF bread and peanut butter for the rest of the summer, he won’t starve, and the longer he’s off gluten, you will be blown away what happens! He will again, just like being off Restoralax
“Naturally” begin to show an interest in new foods. I came to find out that gluten apparently does some weird stuff too, to their brains. Again…I can’t get all the real medical lingo out of my brain – sorry it’s almost morning as I type this, but I am determined I AM going to get our story out…(I am sure that Wendy can help with links to specific articles that discuss the effects of both Restoralax/Miralax and Gluten and how they affect children’s desire to taste and try new foods) .. But I want to get this out to all of you- so you can hopefully make your choice to move forward.
So gluten is nasty. Nasty, nasty- for many kids (and no, my son is not celiac) but MANY children cannot tolerate the high glutinous diet they are consuming. Not just because it causes constipation which comes to find out is indeed my son’s root cause ( I determined through food mapping) and he is also highly intolerant to some dairy- ice cream and yogurt are the worst, also determined through food mapping. (for more information on gluten and dairy and how they can cause constipation, please read my articles https://naturalconstipationsolutions.com/is-gluten-causing-your-childs-constipation/ and https://naturalconstipationsolutions.com/dairy-is-a-common-cause-of-constipation/)
So after he was gluten-free for a
So, here’s what I did, his protocol.
his were prescribed by his ND, I highly recommend trying to get in to see either an ND or a Functional Doctor who can complete some testing to determine how exactly the Restoralax has injured your child, and then chart a healing path forward. The testing we did in our ND’s office was a hair test that helps to identify high levels of heavy metals, and a “live blood cell analysis”, this helps to determine if there are issues with a slow immune, yeast overgrowth, parasites, worms, etc., and many other things. I really like this test as it just requires a finger prick for a blood smear, which for a kiddo on the spectrum is FAR less traumatic than a full blood draw. As I mentioned, we live in Canada, this test was about $200.00 CDN. Hair test was about $150 CDN. The ND appointments run about $140/ session. (for more information on probiotics and constipation please read my article https://naturalconstipationsolutions.com/best-probiotics-for-constipation-in-children/
My husband and I have some coverage for these services with our medical benefits with our employer. I suggest looking into
2) Magnesium citrate.
This is used widely in the naturopathic
Again, due to my son’s limited diet, he only drinks water; I had to develop a ratio that was totally undetectable. I dissolved 1/4 tsp of the CALM into 1/4 c. Boiling water. Let cool, then add to a water bottle that holds a total of 12 oz or 1.5 cups. In this dilution the calm is undetectable. The powder will fizz up when it hits the boiling water. Let it completely stop fizzing before cooling down (you can add an ice cube). My son was 7 when we started this, he weighed 50 lbs, he needed 5-8 of those water bottles a day, in order to keep his water intake up I offered salty snacks, such as gluten-free chips. He likes the baked lays.
3) Epsom salt baths
4) Castor Oil Tummy Messages
Apply about 1tbsp of castor oil into the palm of your hands (I often add a bit of organic coconut oil as it makes the castor oil a little less sticky, is an excellent carrier oil) and massage into belly clockwise around
I have found that there are two exercises which are excellent natural bowel simulators, biking, and jumping. We did this three times a day in the beginning, I made a schedule and we really stuck to it.
6) Poop chocolates
Very easy to make, I started with four chocolates a day; I made them using mini muffin tins lined with papers, filled ¾ full. (for reference again, my son was 7, and weighed 50 lbs). As with the other parts of my sons daily protocol, I started to back off of these as his bowels became more and more frequent. Today we use them as part of our maintenance plan, he has one or two every few days. Recipe: https://naturalconstipationsolutions.com/chocolate-coconut-oil-poop-candy-for-constipation-relief/
Note: Unrefined organic coconut oil undoubtedly has more health benefits, however, it does have a distinctive taste, for kiddos that are “
7.) Lastly, removing all gluten and dairy.
Ugh….I am not kidding I FEARED this…I didn’t think I had it in me to do it. My son was still having a “sippy cup” of milk before bed to sooth…I really and truly thought I was taking something so special and meaningful away from him. Many tears were shed over this. I was raised drinking milk, my sister was, all my nieces and nephews, my husband still would drink a gallon a day if it were not so high in calories…how could I come to terms with removing such a huge component from my son’s diet (also, I grew up on a large farm, dairy was a HUGE part of my life).
But…again, not to sound like a broken record, Wendy was the steady and constant voice of reason, and ENCOURAGEMENT!!!! Finally, after my son’s pizza escapade and I saw that he was
in fact open and accepting to new foods and tastes I knew I just needed to DO IT!
I didn’t remove gluten and dairy until about four months of doing all of the
After I removed gluten and dairy we also stopped the Natural Calm. There is some debate around how long someone can or should take this. Our ND was ok with around 4-5 months then, if my son had required more magnesium she was going to have some compounded for him, but, by the 4 ½ months mark he was going easily two-four times a day so we just stopped the magnesium (calm) altogether.
Getting to the “Root” of the problem:
Once I felt my son’s bowel movements were was stabilized – (going easily 2-4 times a DAY- which is what his ND says is a good goal for his age) I then reintroduced one food item from gluten, waited to see what happened, watched for bowel movements, signs of gas, bloating etc. He was fully constipated by the 2nd day, I didn’t let it go more than 48 hours and used Calm to get his bowels moving again and pass what was now black hard stool, which he hadn’t had in over 4 months.
I then went back to full gluten and
I determined he can tolerate a small amount of milk, no more than ½ cup every few days, he tolerates butter daily with no issues. I suggest a grass fed, organic if you find that your child can indeed tolerate butter, this is the best especially if they have been on Restoralax as this has been proven to strip the body of butyrate and butter contains this. My sons ND actually recommended the brand “Kerrygold” which is what we use. It is quite expensive in Canada ( I believe in the US you can buy it in larger bulk purchases at Costco), but, given how many other things I no longer buy, like the snaking cakes, cold fish crackers etc. this all seems to come out to about the same in groceries, even though my butter is now three times what I used to pay for it. Lastly, in the food mapping exercise, I determined he can also not tolerate ice cream, I tried a few non-dairy versions, and he hated them. That’s ok; he’ll survive without ice cream.
And that’s where we are at today. Today he takes supplements to help heal the injuries I spoke about, but he doesn’t need anything for constipation specifically. I still do a castor oil belly rub almost every night and an Epsom salt bath once a week or so, and he definitely rides his bike daily and does jumping exercises. I feel comfortable that we have gotten to the root cause which is most definitely gluten, and most dairy items.
We have also purchased Restore and my husband has used it for the past six months and has felt amazing. Due to the nature of my son’s injury, from so many years of Restoralax
There are many wonderful recommendations that get rave reviews from many parents, I was faced with a situation where I just could not force anything down my son, he would just throw it up if I tried anything what so ever that he could taste, so I had to develop a protocol that could be administered topically and/or put in water. I hope some of this is of some help to other children who we consider to be “
The Known side effects of Polyethylene glycol (PEG3350)
Autism; Neurological damage caused by prolonged use of Restoralax
My son showed no signs what so ever of being on the spectrum until AFTER he began to take Restoralax daily. There is a great deal of information now available that tells us that Peg3350, the only ingredient in Restoralax can, and does cross the blood-brain barrier. There is a significant amount of information on this subject that can be searched on the internet, I am not going to go into all of it here (or this letter would be ten times longer than it already is).
There are OVER 25,000 documented side effects of Restoralax with the FDA today. The tops ones being; tics, seizures, outbursts of rage, uncontrolled anger, thoughts of self-harm, or harm to someone else, loss of concentration, agitation, stimming, delayed speech, echolalia, sensitive to noise and light, and the list goes on and on and on.
If you have a child who has been given ANY of the following disorders; ADHD, ODD, OCD, autism, Asperger’s, or anything else that falls into what is now referred to as the “spectrum”, then you likely recognize many of these symptoms I have just listed, I know I do. My son displays many if not all of these, except self-harm, thankfully.
Sadly, this is NOT explained to parents when we are told it’s “as safe as water”, well, I guess that may be true, if the water is poisoned, or contaminated. If I had been told that this product, which they told me I could (Should) give my
I guess that should have set off alarm bells when a doctor tells you that once children begin taking it they take it for life? Huh? Then when I bought the product (here in Canada it is over the shelf, so there is no prescription needed, so you see it is on you, the parent to buy it…or not. Sneaky, and it covers the doctors as it clearly states on the label “not intended for children under 18 years of age, and not intended for more than 7 days use”…again, that should have set off even more alarms ( I admit, this did, and I called my Aunt who is an ER nurse and asked her about it, she said “ oh yes, we use that all the time, its fine”, and so even though the maker clearly states it’s not intended for children, or more than 7 days use, I did what was suggested by my sons doctor and gave it to my
I’ve read that some children seem to bounce back after being on
What happened after we stopped Restoralax?
When my son had been off of Restoralax less than a week, I was on the phone with my sister, I bolted out “he’s stopped, he’s stopped!” She said, “What are you talking about?” I explained (through tears) my son had for the past 10 months been reciting a sequence of numbers (they are every house number for about 3 blocks on the way to our house) he has been reciting this set of numbers over and over, writing them everywhere, totally consumed with them, unless I worked very hard to re-direct his attention (see photo). I had just realized he stopped, I couldn’t recall when I had last heard him recite them, but it was a few days for sure, I was just stunned and also
That was the first thing that really jumped out at me. The next was really huge. My son had not been able to master peddling a bike, despite our best effort. He’d had many tricycle’s then bigger bikes, as he grew. Lots of tears, he just couldn’t peddle. This is very common for kiddos on the spectrum. When he was almost five, I bought him a balance bike, wow, he loved that! He zoomed around on that and was so happy!! When he outgrew it we went to a bike store and had him fitted for a bike to fit his size, we kept the training wheels on and hoped we might be able to master that peddling! This was
My husband and I took turns encouraging the peddling. Many aching backs later, he just would cry, become so distraught he just left it parked at the front door. I finally told my husband, “take the peddles and training wheels off, we will make it into a balance bike”. He agreed. As things go, this didn’t happen right away and the shiny new orange bike remained at the front door. My son had given up even trying.
Two weeks after he had been off Restoralax I was in the kitchen doing dishes, I heard “
This was unbelievable to witness, and there is absolutely NO doubt in my mind that as we continued to be further away from his last dose of Restoralax, combined with some good quality probiotics, things were changing rapidly with my son.
Next up was colouring (this happened just a day or two after the bike experience), my son came to me with one of his workbooks (I homeschool and we have workbooks all around the house), there are several activities that he just could not do, they were very distressing and I just moved past them in every workbook thinking one day we would circle back to those exercises. One of those activities was
One night I was sitting on the floor, watching a video on my
Not only had he followed the code to a tee,
We had an occupational therapist and a speech therapist that came to the house for private one on one weekly sessions, in the 2nd week after stopping Restoralax both therapists asked me after his session “What are you doing differently? He’s like a different child?”
Prior, he ran from the therapy room, multiple times in the hour. It was a constant task of trying to get him to focus long enough to complete a short activity, maybe 4 minutes long. There was usually outburst of throwing toys, his water thermos, etc. Each therapist said – on 2 separate days, he just sat, listened internally, spoke with them much better and clearer vocabulary and did not try to “escape” the room, once.
I responded, “Well, I stopped poisoning him” …that definitely gets
That was over a year ago. I’m happy to report that as my son’s speech and behavior continued to improve at exponential speed, we were able to reduce, and finally, stop therapy
After three years of steady therapy my husband and I had accumulated a debt of over 60k (Canadian) which we now are working on paying off, and we are happy to re-route therapy funds into some of his new loves which are; a new set of drums, piano, and in the fall we plan on starting horseback lessons.
Our story is not unique, sadly. I’ve talked to hundreds of parents, read thousands of stories on various internet sites, all with the same or similar stories. They all have one common denominator, Restoralax/Miralax.
We are not making these stories up. We are not imagining the differences we see in our children when we STOP giving our children Restoralax. Today, we continue on our healing journey. We are not even at the midway point but, we are one year into a new life of no Restoralax and a new outlook on Big Pharma, and how they influence our medical practitioners. I continue to learn and read every day, I continue to pray that my son will be one of the children who can have a full recovery from the devastating
Thank you for sharing your story
Tracking your child’s bowel movements can help you to develop a regiment that helps you to find the natural remedy for their constipation. To get a free bowel movement tracker please click Here.
I would like to invite you to join my Facebook groups People Against Miralax or Natural Constipation Solutions for more information on how to treat constipation and for support on your journey.
*DISCLAIMER, I AM NOT A DOCTOR OR MEDICAL HEALTH PROFESSIONAL. ALL IDEAS DISCUSSED AND DESCRIBED IN THIS POST ARE MY OWN AND ARE NOT MEANT TO TREAT OR DIAGNOSE. IF YOU HAVE A MEDICAL CONDITION PLEASE SPEAK WITH YOUR DOCTOR.
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