Miralax Warning: not for long term use - Mothering Forums
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#1 of 10 Old 04-27-2006, 07:45 PM - Thread Starter
 
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I know it's common that peds put kids on this long term. The package insert says 2 weeks for a reason... because a small percentage of it is being absorbed even by healthy gut kids. Here is a discussion centered on kids with damaged digestion (which personally I think constipation is as well):

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I have a mom friend whose daughter entered an autistic state while on Miralax (she was SID only). She took her to the ER where they diagnosed "Miralax toxicity". She has made friends with a doc who got into the medical journals/studies on PEG and she is going to send me the info on it. Basically about 4 percent of PEG IS absorbed. So if you think of our leaky gut kiddo's -- are they absorbing even more than this? The literature on PEG states that it is nephrotoxic if absorbed by the body. That means it is toxic to the kidneys. Given our kids issues already, it is no wonder that it probably doesn't take much to damage their liver and kidneys even further.

One neurologist hypothesized that the PEG entered the bloodstream, where it drew water towards it, thus pulling salt away from the brain (cerebral salt-wasting condition) and resulted in the neurological changes. Some other reports she has say that when they studied PEG toxicity in rabbits-- they all died of renal failure. So I guess I am fortunate that I put two and two together with Ethan and that he was only on it for two months before something REALLY bad happened to him.
http://www.danasview.net/miralax.htm
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#2 of 10 Old 05-09-2006, 04:45 AM
 
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any ideas for a natural sub?

i havent wanted to even do colace (the doc's suggestion) , let alone miralax (polyethylene glycol)

so far, we're increasing oils in general (flax, fish, olive), upped the fiber, lots of water, lots of exercise, the prunes and all of that, increased magnesium and vite c, probiotics. And we're gfcfsf and being mindful of the disaccharides and polysaccharides. cut out the binding foods too, dont eat junk (well, not much but our junk looks pretty healthy to most pple)

and.... we're still dealing with constipation issues.



ps, thanks for the heads up about miralax, i was thinking about asking the ped about it later this month if things didnt turn around. the buzz on the newsgroups is that it works miraculously, and lots of pple are using it long term

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#3 of 10 Old 05-09-2006, 03:40 PM - Thread Starter
 
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More magnesium, how much are you using and what kind?

Which is still not necessarily a cure, you have any idea what the root cause is?

The people saying it's a miracle now might be facing different problems down the line.
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#4 of 10 Old 05-10-2006, 04:33 AM
 
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Quote:
Originally Posted by JaneS
More magnesium, how much are you using and what kind?
mag citrate, mag oxide and mag hydroxide. the amt varies depending on how much i can get into ds. he's oral defensive, so it's concealed in foods that he'll take (usually pureed fruit popsicles). is there a form of magnesium that's better?

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Which is still not necessarily a cure, you have any idea what the root cause is?
leaky gut, asperger's, and we've been dealing with the whole withholding/encopresis thing. we've started a reward system and things are turning around now, thankfully. i also think a lot of it was stress related and psychological in origin, and we've been working on that. ds has had bowel problems since he was born though, so we're also working on the leaky gut issues.

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The people saying it's a miracle now might be facing different problems down the line.
good point.

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#5 of 10 Old 05-10-2006, 04:44 AM
 
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hum...I haven't read the link yet but I will be...I have been on miralax since '03 (for IBS and some lower colon nerve damage) and my ds is on it as needed which is becoming more and more often. It has been the miracle for us so...off to read
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#6 of 10 Old 05-10-2006, 04:50 AM
 
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Yikes! My 5yo dd has been on miralax/glycolax for 1 year! I have spoken to the nurse who we work with who specializes in encopresis and her pediatrician (who works with encopresis a lot as well) and both have reassured me it's fine for her to take long term. I need to do more research.

Do you mamas have more websites about encopresis in general?

many thanks,
Momalea
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#7 of 10 Old 05-10-2006, 04:19 PM - Thread Starter
 
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Quote:
Originally Posted by moss
mag citrate, mag oxide and mag hydroxide. the amt varies depending on how much i can get into ds. he's oral defensive, so it's concealed in foods that he'll take (usually pureed fruit popsicles). is there a form of magnesium that's better?
Personally I love Natural Calm, the lemon or the plain. It is mag. citrate. Tastes good and completely dissolves in water so it's easy to hide. More on different types of mag. here:

http://www.enzymestuff.com/magnesium.htm

Quote:
Originally Posted by moss
leaky gut, asperger's, and we've been dealing with the whole withholding/encopresis thing. we've started a reward system and things are turning around now, thankfully. i also think a lot of it was stress related and psychological in origin, and we've been working on that. ds has had bowel problems since he was born though, so we're also working on the leaky gut issues.
All of those issues, including Asperger's, has a gut connection. I highly recommend Karen DeFelice's book at the above link. She battled ecopresis with one of her sons (both used to be on the spectrum as well) and it was caused by bacterial issues. Enzymes helped them both.

I've also seen the brain gut connection clearly with DS. And myself in fact. Whether the gut is healthy and working correctly to produce the neurotransmitters for the brain has great effects on behavior, sleep, personality, anxiety, etc, etc.
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#8 of 10 Old 05-10-2006, 04:29 PM - Thread Starter
 
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Quote:
Originally Posted by Momalea
Yikes! My 5yo dd has been on miralax/glycolax for 1 year! I have spoken to the nurse who we work with who specializes in encopresis and her pediatrician (who works with encopresis a lot as well) and both have reassured me it's fine for her to take long term. I need to do more research.

Do you mamas have more websites about encopresis in general?

many thanks,
Momalea
It seems that mainstream medicine is not interested in finding the cause of bowel disorders. The intestinal flora is often the root, but yet, they seem to ignore it.

Seems ridiculous in light of the fact that the flora can weigh up to 3lbs in an adult. It produces digestive enzymes and immunoglobulins ... it is the cornerstone of both the immune system and digestive system. It is like another organ in it's function and we would die if our guts were sterilized.

So that, coupled with the fact that Miralax is not a fix but a symptom reliever (again, like all mainstream medicine seems to focus on), wouldn't make me trust their assurances IMHO. It's like my Ped telling me diarrhea is common and normal in toddlers. Not! It might be common, but it's not normal and we've got the stool tests to prove it.

Check out the Enzymes and Autism Yahoo group for previous posts on ecopresis. Link at www.enzymestuff.com
That is the group Karen runs, I'm sure there is more info there. You don't have to be on enzymes or on Spectrum to participate.
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#9 of 10 Old 05-10-2006, 09:05 PM
 
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Thanks JaneS, I'll give that website a try.

After 3 years of trying to figure out what was going on with my dd, a pediatric osteopath diagnosed her with encopresis. The osteopath she said that her peristalsis was moving counter-clockwise (backwards), which made a lot of sense with other issues she'd had in her life. We've been working with the osteopath to correct that issue and then with an encopresis clinic. It's been slow but her colon is almost back to normal, however, she is pretty dependent on the glycolax still.

Time to do more reseach...
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#10 of 10 Old 05-11-2006, 02:51 AM
 
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Quote:
Originally Posted by JaneS


All of those issues, including Asperger's, has a gut connection. I highly recommend Karen DeFelice's book at the above link. She battled ecopresis with one of her sons (both used to be on the spectrum as well) and it was caused by bacterial issues. Enzymes helped them both.
thx for the book recc, i've been wanting to learn more about enzymes. i just picked up a copy of Enzymes & Enzyme Therapy by Cichoke. it jumped out at me in the bookstore. literally. haha. anyways, thanks for all of your input, Jane, you're a smart mama and we're lucky to have you on the boards.

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