I'll preface this post by saying that the child in the photo above is my life. Nothing is too good for her, and I will stop at nothing to ensure she is kept happy and healthy.
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I'm definitely not in the habit of believing everything I read. I like to think I'm more sensible than that, even given my propensity for swaying many of my opinions whichever way the wind blows. I'm kinda weak like that and completely suck at holding my side in an argument.
However, a link was passed around Facebook a few weeks ago that stopped me in my tracks (click here). A link to an article claiming that the active ingredient in Miralax can cause a whole host of terrifying health complications, including neuropsychiatric events. Miralax, which is a gentle stool softener used by millions to prevent constipation. Miralax, which has been deemed completely safe by so many pediatricians, safe enough to give daily with no time limit for ending the usage. Miralax, which is so easily-dissolvable, tasteless, odorless, colorless, and causes no cramping or obvious negative side-effects while doing its job very well.
Miralax, the perfect solution to Samantha's problem, which we have been giving to her for 6 years.
The sensible part of me is pretty sure that the possible side effects of the ingredient in question are remote, about as likely as the line in an oral surgery disclaimer (that left me a babbling fool, unable to even remember my address, when I had to sign it before having my wisdom teeth pulled) stating that a possible reaction could be death. Or the fine print that whizzes by on those Ask your doctor if blahblahblah drug is right for you commercials stating that you could suffer from catatonia/blindness/leprosy/anal leakage/whatever. I highly doubt it's going to cause Samantha to suddenly have autism (although in my belief, the genetic makeup of some people can cause certain environmental /ingestible factors to trigger an inherent predisposition for autism).
At least I hope the sensible part of me is right on this count...
BUT, unless it's been completely doctored and falsified, how on earth can you debate this?
Terrifying.
So we did an about-face, and pulled Samantha's daily dose of 1 tsp. of Miralax from her diet. It was time.
But I'm seriously re-thinking it, as awful as that sounds.
We substituted a completely all-natural remedy, Fruit-Eze. Can't go wrong with a teaspoon of concentrated prunes, dates, raisins and prune juice, right? My kid, who doesn't really like whole fruit, can at least get some extra vitamins and minerals while we're at it. And, despite the fact that Samantha just doesn't like it, she does know that it's good for her and dutifully opens her mouth (well, dutifully may be too kind a word - a lot of bribery and threats are usually involved), sputtering and reaching desperately for her juice to wash it down.
The results have not been great. One day resulted in painful cramping followed by several emergency trips (read: urgently running) to the bathroom. I lessened the dose after that, and now, while she's been going almost daily, it just doesn't seem to be enough. She had a very uncomfortable night lastnight, tossing and turning, coming into our room repeatedly. I thought for sure we could find the happy medium with this stuff, but it doesn't quite seem like it yet.
I'm frustrated, and just wish somebody of influence and knowledge would come along and reiterate that Miralax is completely safe, that Polyethylene Glycol completely exits the body and can not possibly cause any of the effects the article claims.
And, until then, I'll keep the Fruit-Eze going until something better comes along.
22 comments:
As with the Miralax, you have to make sure she is taking in enough water as well. It took months for us to find the right 'dose' if you will. And now I try more to make sure she is eating a balanced, healthy diet rather than using it as a daily supplement. I understand constipation, believe me I do and we had to resort to miralax for the last three days because she had not gone for 6, then 7, then 8 then 9 days even after 4 days of miralax she finally went yesterday and it was not a hard stool yet she still cried and struggled. I wish that someone would come along and study the structure and anatomy of the bowels of someone with Ds as it seems to be a widespread phenomenon. I also wish they would study further the "normal thyroid function" of people with Ds. A dysfunctional thyroid can cause GI trouble, constipation, and bowel changes. I personally choose to look at her whole health instead of all the bits and pieces most Peds choose. I hear and feel your frustration.
I am staring right now at the Miralax container and is says right on the front "Relieves Occaisional Constipation" Why do our kids seem to have lifelong issues? What are we not seeing or doing wrong?
I have a friend that participated in a study on Miralax and warned me not to give it to my son. I prefer natural solutions, most definitely. And I think the Miralax instructions say not to use it long-term, even though doctors recommend it that way for our kids often.
Spencer cries and screams when he poops, until we found our solution: Oxy-Powder.
Check out this post from Hybrid Rasta Mama and let me know if you'd like more info about how we handled dosing for Spencer.
First of all, every single time when something like this happens in the Ds community I'm taken aback by how incredibly up in arms parents get. I myself can get a little defensive about certain vitamins we're giving, but it still somehow manages to surprise me every time.
I don't know why, but it almost seems that many parents already feel judged so harshly (or monitored maybe, who knows) regarding how they're bringing up their kid with Ds that sometimes common sense and weighing the best possible outcome in a situation seems to take a back seat to making sure everyone knows that "without this drug/ therapy/ supplement/ something else my LO could not ____." And then there is the other side of the argument that goes something like "until a quantitative scientific study regarding this drug/ therapy/ supplement/ something else comes out I'm not putting my money/ time/ faith into this," without the realization that when the Ds population is at its most generous estimate at 400 000 in the US no one, other than people with Ds themselves and their families, are really going to put any serious effort or resources into streamlining anything for people with Ds. And then there are the questions of patents (profit), and funding, and interest, and...
I guess I just wish that we could all pool our resources into finding out what really works and what doesn't instead of immediately upon receiving such news as the above FDA bulletin forming sides and debating, getting defensive, instead of allowing for many to contribute with pieces of information (such as it is likely that Miralax used in children, largely based on anecdotal evidence, is fairly safe, but the truth is that it actually hasn't been cleared for prolonged use even in adults and it is not at all approved for use in children, but that that doesn't mean it isn't a calculated choice worth making when all things are considered).
I know we all want the best for our children. I mean, who doesn't?
I think you are doing the right thing. Getting the info that is out there, trying something different and keeping your options open because what really matters is Sammi's daily health.
Trying to comment again. We stopped using MLax recently after reading those studies (and others). I agree that I can't believe everything that I read, but I also think there is compelling information ON BOTH SIDES. That said, my daughter has been taking mlax on and off (mostly on) since she was 3, coincidentally the same time she started having issues psychiatrically speaking. She is also on the spectrum. We'd already been wanting to stop, but that put me over the edge. We'd been wanting to stop previously bc while it worked and it was in some ways better than birthing turds (which was incredibly traumatic for all involved, but esply my daughter), we also couldn't ever seem to get the right dose. It was always too much or too little and it was always messy. (TMI??) Right now we are finding that a jar of baby prunes mixed into her smoothie as well as benefiber is working. She goes about every other day (which is great for her) and the results are formed (as opposed to that weird sticky mess from mlax)....sorry....that's a lot of poop info. Anyway, I hear you, and good luck!!!
Everyone needs to do what they believe is best for their child. I have oy given it to Ellie based off of the directions--only a few days in a row as needed (as in when all else fails). The big article causing the scare is written by a guy who sells his own supplements and his resources are not completely researched based. I dug further and found the original citizen request for the FDA to look into Miralax. It was much more informative and medically/chemically based. It makes me pause giving this med to my daughter. What I am going to do the next time Ellie gets a bout of constipation? I don't know yet. Bears done serious thinking for me. The FDA has not concluded anything yet and I wonder if they ever will. Most drug trials are not performed on kids as mist parents wouldn't want their child experimented on. So essentially what I am saying there is no right answer.
Sorry for all the typo. Trying to do this from phone. I will try to post the link to the citizen FDA report when I am at a real computer.
Just had this article passed along to me - a very interesting read:
http://www.nytimes.com/2012/05/26/us/miralax-a-popular-cure-but-never-approved-for-children.html?pagewanted=all&_r=1&
I second the Oxy powder. A friend's Naturopath recommended it for her daughter and she filled me in after J was put on Miralax for her recent issues. I put off the concern, until your post. She is on a daily dose of "Vitamin M", as the specialist called it, for three months....then down to a half dose for a month.
We are looking into Oxy powder TODAY and throwing out the Miralax.
I'll live life on the edge and keep giving Miralax when my girls need it. I'd rather take a risk with something I know works for my children with no side effects (other than pooping) that millions of doses have been given with few side effects vs. something that is unregulated and largely untested on many many people. Looking at the guy who wrote that article I became more and more skeptical of his motives and credentials (a Russian pharmacists who sells products and books? - targeting a large drug mfg in hopes of selling books and supplements? Really, who is regulating the side effects of his products?) I know how my child felt before she took Miralax. I know how she felt and behaved when taking it. I believe she would not have potty trained as easily with out Miralax. I know that she now doesn't need to take it any more. No regrets at all for giving it to her, and no fear about giving it in the future. It worked wonders for her. I also believe that many of us have sensitivities - some people can be stung by a bee and have horrible reactions, some don't. My daughter and I have been very sick taking probiotics. So we don't take them (apparently you can have sensitivities to them, which was news to me - I had only heard glowing things.) I also have a sensitivity to green tea (makes me vomit too.) But I understand that both probiotics and green tea are helpful to other people. I don't expect everyone else to be afraid of probiotics and green tea just because my chemistry has a sensitivity to it. No doubt some individuals are sensitive to Miralax. We aren't.
I was wondering how this was going for you guys.
Cora has been taking MIralax for over a year, and is 2 now. She had major constipation problems immediately after starting solids, even with a diet of only breastmilk, fruits and veggies. Bad. As in going only once a week, with screaming pain and occasional tearing. We tried prune juice, prunes, probiotics. To complicate things, she has serious food allergies and is an extremely picky eater. So having control over what we want her to take in and what she will is impossible. We started with less frequent, smaller doses, but in recent months she's been taking half a capful daily. THat seems like a lot to me. And she still only goes every 2 days most of the time.
We started Fruit-Eze about 5 or 6 days ago. I can actually get her to eat it in a smoothie (which she just started drinking regularly a couple of weeks ago--prior to that all fluids were only through nursing. By her choice, not mine.)
After the first couple days of her actually taking the Fruit-Eze, I cut her Miralax in half. (And started giving it only every other day). I haven't really noticed a change, but things are fine right now. Although she is currently sick and is boycotting almost all food, including the Fruit-eze, so I've upped the Miralax again.
Sorry for all the info- I just figured it'd be good for other readers to know our reasons for giving her Miralax.
And Becca, not sure how long Sammi has been on it, but when I change the amount of fruits/veggies in my diet like this, it can take a couple weeks for intestinal discomfort to go away and regularity to start up. So I'm hoping that things start looking up soon.
I know we'd all like a solution other than constant Miralax.
Oh my gosh. Boo is on a capful a day! A FULL cap, mind you. To keep her regular. And I use it as a rescue if Allie has too much cheese. It was prescribed by her GI doctor so I blindly followed. But she does so well on it. And hey adding it to her water versus having to do suppositories or giving herself hemmroids I was pleased with the results. I will definitely be asking her neurologist and GI about this. Thanks for the heads up!
Rebecca
I had not seen this article yet and we may be one of very few parents whose little one with ds doesn't have the constipation issue. we are thankful for the little things for ethan. though when he was on the ketogenic diet and became constipated our neurologist told us no miralax said it wasn't meant for little ones and the ingredients just were not good.
we used a probiotic for Ethan at that time and it worked.
Nicole
Ah...I was wondering what the whole Miralax thing was about. I don't really have anything to add on the subject because I don't know much about it. I find it interesting though, glad you posted about it.
Avery also has hisrchsprungs disease so she really has poo issues...and i stopped giving her miralax a LONG time ago after her GI dr told me that we need to be giving her something else so he is the one that suggested fruit eze..and i LOVE that stuff..we give her two heaping teaspoons a day and it works..she just takes it right off the spoon and follows it wit ha big glass of water..if she refuses i just tell her that it helps her go poo and she takes it..she dont like to be backed up....and it keeps her regular and keeps her poo soft too...i love that its all natural..FOr us its a win win situation....Maybe try increasing her dose..since its all natural you cant give her too much..its the same as miralax you have to find that dose that works for her..miralax was the same for us..it took us a long time to find the happy medium dose when we were on it...we've been on fruiteze for years now...good luck!!!:))
What about coconut oil and flax? Sarah Basile uses it for Zoya and it seems to work well for them...
This concerns me too. Lucas was on Miralax for a year then off for a year and now he needs it again. I honestly don't know what to do. I'm pretty sure he won't take fruit-eze. We tried it when he was a baby and he hated it. He is so picky now. It's a frustrating issue, I wish there was more research on constipation and Ds.
Thanks for posting this! My daughter is a very picky eater and get constipated a lot. We have been using Miralax, but I am going to stop giving it to her. Thanks so much.
I have been doing my own research lately on Miralax since Arlynn has been on it for a couple months. It caused her to teeth grind. I know it was the Miralax because the grinding happened after she was on it. I researched Miralax and teeth grinding and sure enough they are related. I have been passing this research to my mother and strongly hope she will take Arlynn off of it,because I have heard a ton of negative things about it. I have been looking for something safer to give her. Going to look into the Fruit-Eze. Thanks for posting!
thanks for all the info, and I am worried too... been on miralex for years... what is the connection to teeth grinding and miralex
I am a Mom and had never heard of giving Miralax to a child. I would not do that because of what happened to me.
I had surgery last summer. They let me go home on day 5 even though I had no BM. Dr said get Miralax. I tried it twice, it made me throw up violently and hurt me really bad. Then I looked at ingredients and looked up on computer. It is made of same stuff as antifreeze. It's a petro chemical called PEG or polyethyl glycol.It hurt so bad, I thought I was gonna' die. I called the doc about my reaction to the Miralax. They suggested Milk of Magnesia (sp?). It was gentle; unlike the Miralax which made me feel like I was having my guts ripped out.
Anyone bothered by petro chemicals should not take this med.
Use liquid magnesium
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