Re: constipation and miralax

[Guest guest]

My dd took MIralax for 4+ years & has also been dx'd with High Funtioning

Autism.

I srongly urge you to find a DAN! dr or NAturopath to address the constipation

issues before possible permanent damage is done to your child from Miralax.

I wish that I had known that Miralax is NOT presrcibed for children according to

the manufacturer & that drs that do prescribe it do so " off label " deciding that

it is best to have a child be able to have a bowel movement than not to go at

all.

There are many options to Miralax & we have had great success with PLUM Juice &

a very good probiotic prescribed by a DAN! dr. Please know that to see a DAN! dr

you child need not be autistic. DAN! practice is a conventional medical approach

along with a more Naturopathic(change in diet, supplements, probiotics, etc)

approach as well.

My dd has been seen by several GI drs with little success. All want to prescribe

Miralax. Very sad that none are willing to help to find a better way for her to

go.

HTH,

Yvette

[ ] Re: constipation and miralax

your daughter has been on Miralax since a year old?!! She's

less then 3 and a half years old and on Miralax for 2 1/2 years?

I would highly suggest a second opinion outside of your pediatrician

with a pediatric gastroenterologist and share this. Perhaps a second

opinion from a different pediatrician too!

There isn't as much research on how prescription constipation

medications affect infants or toddlers over years of use. We have

one parent here who's young child was on prescription medications for

constipation for years -most of us have not had this. You can

archive for information about and and even though this

situation is most severe -it's real. This child wasn't just another

name in a grouplist -my son went to Summit Speech School with

and Tanner and him appeared to present the exact same way as

preschoolers. I was hysterical crying when I found out about what

happened to in regards to this and thing is none of us know if

it's because dosage kept going up over the years. But it should be

documented -at least here it is. (two of her messages below)

Thing is back then none of us talked about constipation in regards to

apraxia at grouplists back then as it was considered off topic. But

once I started this group and brought it up it was like the

floodgates opened! I've shared many times about the nutritional

prescription pediatric gastroenterologist Dr. shared with us

for our son Tanner (short version is below). I know first hand how

scary, frustrating and horrible constipation is in a preschool child -

and want all to know you probably can help your child overcome this

without medications -and if you can- why not try? Below is

information about Miralax.

" How long or often should Miralax be taken?

It may be necessary to use this medication for 2 to 4 days before a

bowel movement occurs. It is recommended that Miralax be taken for no

longer than 2 weeks.

Safety in children has not been established "

http://www.gicare.com/pated/Miralax.htm

And here's a message board just for those that have their child on

miralax or glycolax:

" This board originated as a board for those who have had, or their

children have had, significant adverse reactions to, or adverse

events after starting Miralax or Glycolax. A few examples would

include the onset of tremors, tics, changes in personality, etc. I

have been in contact with others who have had adverse reactions to

this product, and decided to create a forum so that individual and

families can post their experience here. I also encourage you to

submit your experience (it can be done anonymously if that's what you

prefer) to the FDA's MedWatch Adverse Event Reporting System. Here is

their link:

http://www.fda.gov/medwatch/ "

miralax/

~~~~~~~~~~~archive from oldworldtile

Re: miralax

Please join the group miralax

<miralax/?yguid=77953181> It's not a

large group but there's a lot of sharing of information. I remember

reading a post regarding a child with seizures - -they were told to

keep

the magnesium to 300mg per day. That amount with 3000 mg vit c might

be

enough to get your daughter off the stuff. I don't understand all the

chemistry involved -- but the miralax that is absorbed is converted

into

oxalalic crystals -- which are very damaging to the body. My belief is

that in the case of a damaged gut the % of PEG absorbed is much higher

than they say. Also, Dana has a page on Dana's View - Miralax

<http://www.danasview.net/miralax.htm>

I am amazed at how well my son did after getting him off of the stuff.

~~~~~~~~~~~~end of archive from oldworldtile -start of archive about

Dr. Adam's " prescription "

I would highly suggest a second opinion outside of your pediatrician

with a pediatric gastroenterologist and share this.

And again -an archive about what the traditional gastroenterologist

Dr. " prescribed " for Tanner which is working (just wish he

didn't have to drink nectar every day!):

" This also may have to do with some signaling problem or motor

planning aspect. Not sure -but who cares when anyone just about

anywhere can pick up pear nectar or Dole papaya fruit and gel

bowls! This works -and we love Dr. !!

> Today I took Tanner to see pediatric gastroenterologist Lawrence

> MD from Palm Beach Florida for Tanner's problem with

> constipation which we have been trying to help him with now for

the

> past 5 years or more with various MDs (Tanner is now 7) Up till

now

> nobody has wanted to put Tanner on medications -and since we've

> moved we haven't taken Tanner to see his NJ/NY MDs. I highly

> recommend Dr. if you are in Florida in that he took over an

> hour with us -was excellent with Tanner (very funny) and was very

> open to discussing off the wall theories on constipation in

apraxic

> children -a best kept secret even though it's known for autism.

Dr.

> has many patients with special needs -some with severe CP

> whose parents have to blend fruits for their constipation that

they

> can put through their feeding tube.

>

> Here is a brief summery from the prescription he gave me:

>

> Diet: Nectars (fruit juices) Papaya, pear, apricot (if he can

> stand it -can mix with others but try plain nectar first)

> * prune juice -can be mixed with orange juice (since most kids

don't

> like it)

>

> exotic fruits- figs, dates, apricot, papaya (papaya underlined

> twice) (if he can stand it -like the nectars -these work wonders

he

> said)

>

> limit -banana, apple, rice, dairy

>

> Milk of Magnesia 2-3 tablespoons with glass of water any time he

> skips 1 day. Works 4-8 hours.

>

> Behavior Modification -10 minutes daily -no distractions. Use

> calendar stickers -every week reward for amount of BMs

> 2/ week something small

> 3-4 medium

> 5-7 large reward

>

> Dr. said that there is a chance that the problem could be

> motor planning -but he can't fix that -his goal is to get Tanner

on

> a schedule for a long period of time so that he starts going

> automatically. He doesn't want me to use the Nature's Tea due to

> the senna in it -said it can cause dependence in long term use,

and

> said that due to what I reported with Tanner's regression with too

> much fiber not to use high fiber either. He said it is possible

> that the fiber is cutting short the fatty acids in the gut. "

~~~~~~~~~~end of archive about Dr. -start of 's about

Miralax may have nothing to do with her son's condition -but we all should be

aware of the lack of research in this area.

Thu Dec 11, 2003 8:19 am

" D. Rothweiler " kdr2@...

constipation

Hi

We seem to have so much in common.

has had a constipation problem since he was born. He's been on

Miralax for over a year now and it's the same thing as you, it makes it

watery so he just has accidents all day long. It's very true that their

rectums get stretched out so it's better to keep them flowing than let them

get constipated. You don't want any stool to put pressure on the rectum

wall. My frustration is that he can't control it and has accidents all day

long. He tells me it just comes out too fast and he doesn't have time to

get to the bathroom.

Good luck! I hope it goes well for you.

formerly in NJ, now in MA

Mon Dec 15, 2003 9:26 pm

" D. Rothweiler " kdr2@...

constipation

Hi W

Thank you for your concern regarding my post about Miralax. I actually have

an extenuating circumstance that I've been meaning to post to this group to

see if anyone can relate to but this is all recent news to me and it's quite

painful to talk about. I'll take this opportunity to ask anyway because

someone here may be able to provide me with some info.

My son was just diagnosed a few weeks ago with Pseudo Obstruction

Syndrome. Basically, none of the nerves & muscles in his colon that are

supposed to work together to move the stool through are working. He has

zero motility in his colon. Because of this, the only way at all to get his

stool to come out is by having it leak out watery. It's a pain to live with

but the alternative is that he gets impacted. I've tried and tried to

adjust the dosage and if it doesn't come out like water, it doesn't come out

at all. My poor son has had every test in the book over the past 3 years in

NJ. In June, we had to move to Massachusetts so I went into a specialist in

Boston who is supposed to be internationally known, well published, etc..

and within one visit, he had it pegged that it was a motility problem. I

have a lot of anger for my old dr. who had put my son through every test in

the world and couldn't figure it out. My last visit with him before he left

ended with him telling me that I had to get a lot of fiber into him and to

get him to sit on the potty more often and that some kids were just

chronically constipated. Meanwhile, my son's stomach is so distended that

he looks about 8 months pregnant. Anyway, that's why I have to keep the

Miralax so strong.

My question to the group is: 1. Has anyone ever heard of or known someone

with Pseudo Obstruction? 2. My son will have to have a Cecostomy for

several years and I'm wondering again if anyone knows anyone with a child

with a cecostomy so I can pick their brains? My surgeon told me it's

basically the same type of port used as a feeding tube. If the cecostomy

doesn't do what we hope, he'll have to have a colostomy. I'm quite freaked

out about the whole thing. Never in my wildest, worst dreams did I imagine

that my son's constipation could be something so serious. I also hesitated

to post this because I don't want to scare anyone out there who has a child

with constipation. My new gastro. told me that the reason my old dr. didn't

catch this is because it is quite rare. If I could suggest one thing

though, it would be that if you have a child who is unresponsive to every

conventional type of constipation remedy as my son is (nothing ever worked),

just ask your dr. if he has ruled out a motility disorder. There are many

different types (as I'm learning) and I wish I had known more before.

Sorry so long but I've got a lot on my plate here. If anyone can share any

info. with me on Pseudo Obstruction or cecostomy's, please let me know.

Thanks in advance!

in MA

kdr2@...

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