Re: 8-yr-old son miserable, HELP!

[Guest guest]

http://en.wikipedia.org/wiki/Pervasive_developmental_disorder forgot to add that the anxiety and extreme nervousness has been reported by many parents that did indeed know their child before they were put on this drug and soon developed on and / or after. Tourettes, Guillian - Barr

syndrome along with many other syndromes/ disorders have been reported by Doctor's to parents as well. Many children develop a chewing obsession, shirts, toys, etc................many develop stimming, noises, constant clucking, humming, clapping, hand flapping, etc............Many symptoms are reported as residual, and didn't go away..............Please go over the FDA adverse reactions

with your doctors, it took 10 years to build and it's quite intense. Jeanie To: miralax Sent: Sun, May 27, 2012 9:32:08 PMSubject: 8-yr-old

son miserable, HELP!

Hi, my name is Diane and I am new to this group (heard about it from the NY Times article). My son is almost nine and has been on an adult daily dose of Miralax since he was 2. At the time, his problem was just constipation, but we couldn't seem to get it controlled any other way, so we finally started the Miralax despite the warning that it was not for kids. I have tried repeatedly to wean him off, but every time we have ended up with a cessation of pooping and a traumatic cleanout before he can poop again!

In the intervening years, his gastro problems have just grown and grown. He spent years having severe intestinal pains, sometimes so bad that I felt like I was comforting a woman in hard labor (without any of the upsides of that!) Lots of painful and explosive gas. Then he developed terrible reflux, which ruined an entire summer, and only then became somewhat controlled by Prevacid. (He recently went off after years of taking it daily and now the reflux is starting to come back.) We seem to go through cycles of things being pretty good for a period of months and then getting bad again.

Currently, our biggest problem symptom is the "need to poop" feeling. He will feel an intense sensation of needing to poop, whether he does or not. I have often wondered whether all these other symptoms are actually side effects of the Miralax, or at least having such runny poops all the time.

He has had all the tests and the doctors say there is nothing physically wrong with him. They say it is "psychological" or "behavioral," and maybe it is, but that doesn't mean he is not really suffering. He is already seeing a psychologist for anxiety and was recently diagnosed as PDD-NOS. The folks at Kennedy Krieger who diagnosed him tell me that gastro problems are extremely common in PDD kids. They couldn't explain why. He does have lots of sensory issues, and I wonder if his gastro problems are essentially a sensory problem? He is supposed to start Occupational Therapy soon, but nobody has ever suggested that it is supposed to help his gastro problems.

His last turn for the worse did coincide with both discontinuing Prevacid and discontinuing probiotics, which he was taking both morning and night. His doctor seemed to think that if he ate yogurt, the probiotics were unnecessary, and they are SO expensive and not covered by insurance or even tax-deductible (being OTC). Now I'm wondering if he should go back on?

I apologize for the length of this post. Please, if anyone has any experience they would be willing to share, I would really appreciate it. Even if you don't have answers or suggestions, it would help just to know that someone else is having similar issues! We are feeling very alone with this.

Thanks so much,

Diane

[Guest guest]

There is an ecnopresis yahoo group too I would encourage you to join. Many have had success w/ the program called soiling solutions I would recommend you google and look into. It will involve enemas and/or suppositories. I've not done the program myself, but I do use suppositories off and on if my DD does not have a BM on her own, but it took years to get to where we are today. I would tell you his stool needs to be formed more for him to be able to push it out rather than sloppy like mirilax makes it and lots here will tell you mirilax possible can paralyze the colon to not be able to feel the urge to push. I never had success w/ mirilax and unfortunately my DD experienced rages while on it. I would also not

tell you to discontinue probiotics even us eating yogurt. That sounds like ill advice to me personally.

To: miralax Sent: Sunday, May 27, 2012 9:32 PMSubject: 8-yr-old son miserable, HELP!

Hi, my name is Diane and I am new to this group (heard about it from the NY Times article). My son is almost nine and has been on an adult daily dose of Miralax since he was 2. At the time, his problem was just constipation, but we couldn't seem to get it controlled any other way, so we finally started the Miralax despite the warning that it was not for kids. I have tried repeatedly to wean him off, but every time we have ended up with a cessation of pooping and a traumatic cleanout before he can poop again!In the intervening years, his gastro problems have just grown and grown. He spent years having severe intestinal pains, sometimes so bad that I felt like I was comforting a woman in hard labor (without any of the upsides of that!) Lots of painful and explosive gas. Then he developed terrible reflux, which ruined an entire summer, and only then became somewhat controlled by Prevacid. (He recently went off after years of taking it daily and

now the reflux is starting to come back.) We seem to go through cycles of things being pretty good for a period of months and then getting bad again.Currently, our biggest problem symptom is the "need to poop" feeling. He will feel an intense sensation of needing to poop, whether he does or not. I have often wondered whether all these other symptoms are actually side effects of the Miralax, or at least having such runny poops all the time. He has had all the tests and the doctors say there is nothing physically wrong with him. They say it is "psychological" or "behavioral," and maybe it is, but that doesn't mean he is not really suffering. He is already seeing a psychologist for anxiety and was recently diagnosed as PDD-NOS. The folks at Kennedy Krieger who diagnosed him tell me that gastro problems are extremely common in PDD kids. They couldn't explain why. He does have lots of sensory issues, and I wonder if his gastro problems are

essentially a sensory problem? He is supposed to start Occupational Therapy soon, but nobody has ever suggested that it is supposed to help his gastro problems.His last turn for the worse did coincide with both discontinuing Prevacid and discontinuing probiotics, which he was taking both morning and night. His doctor seemed to think that if he ate yogurt, the probiotics were unnecessary, and they are SO expensive and not covered by insurance or even tax-deductible (being OTC). Now I'm wondering if he should go back on?I apologize for the length of this post. Please, if anyone has any experience they would be willing to share, I would really appreciate it. Even if you don't have answers or suggestions, it would help just to know that someone else is having similar issues! We are feeling very alone with this.Thanks so much,Diane

[Guest guest]

Diane wrote: the probiotics were unnecessary, and they are SO expensive and not covered by insurance or even tax-deductible (being OTC). Now I'm wondering if he should go back on? It is my understanding, if your doctor prescribes, they are tax deductable, and I believe you can submit to your insurance company.Wellness Practioner's support this area. To: miralax Sent: Sun, May 27, 2012 9:32:08 PMSubject: 8-yr-old son miserable, HELP!

Hi, my name is Diane and I am new to this group (heard about it from the NY Times article). My son is almost nine and has been on an adult daily dose of Miralax since he was 2. At the time, his problem was just constipation, but we couldn't seem to get it controlled any other way, so we finally started the Miralax despite the warning that it was not for kids. I have tried repeatedly to wean him off, but every time we have ended up with a cessation of pooping and a traumatic cleanout before he can poop again!

In the intervening years, his gastro problems have just grown and grown. He spent years having severe intestinal pains, sometimes so bad that I felt like I was comforting a woman in hard labor (without any of the upsides of that!) Lots of painful and explosive gas. Then he developed terrible reflux, which ruined an entire summer, and only then became somewhat controlled by Prevacid. (He recently went off after years of taking it daily and now the reflux is starting to come back.) We seem to go through cycles of things being pretty good for a period of months and then getting bad again.

Currently, our biggest problem symptom is the "need to poop" feeling. He will feel an intense sensation of needing to poop, whether he does or not. I have often wondered whether all these other symptoms are actually side effects of the Miralax, or at least having such runny poops all the time.

He has had all the tests and the doctors say there is nothing physically wrong with him. They say it is "psychological" or "behavioral," and maybe it is, but that doesn't mean he is not really suffering. He is already seeing a psychologist for anxiety and was recently diagnosed as PDD-NOS. The folks at Kennedy Krieger who diagnosed him tell me that gastro problems are extremely common in PDD kids. They couldn't explain why. He does have lots of sensory issues, and I wonder if his gastro problems are essentially a sensory problem? He is supposed to start Occupational Therapy soon, but nobody has ever suggested that it is supposed to help his gastro problems.

His last turn for the worse did coincide with both discontinuing Prevacid and discontinuing probiotics, which he was taking both morning and night. His doctor seemed to think that if he ate yogurt, the probiotics were unnecessary, and they are SO expensive and not covered by insurance or even tax-deductible (being OTC). Now I'm wondering if he should go back on?

I apologize for the length of this post. Please, if anyone has any experience they would be willing to share, I would really appreciate it. Even if you don't have answers or suggestions, it would help just to know that someone else is having similar issues! We are feeling very alone with this.

Thanks so much,

Diane

[Guest guest]

I belong to both groups as my then 4 yr old had enco (stemming from some constipation bouts) but I did not like his reaction to miralax so was searching for more natural alternatives even though our pedi brushed off my concerns by saying it's what all the GI doctors use so it must be okay. I didn't think the crazy stomach pain nor unexplained mood swings (turning to rage) were okay, even for a 4 year old, so I started researching on my own what I could do to help fix him. I don't think there was any ill-will from the pedi, I think I was the first patient to question him on miralax. I used the natural methods from this group (kirkmans chewable probiotics, natural calm mag-citrate powder, fish oil gummies, ground flax seeds, etc...) and combined them with

some of the techniques from the enco group. I did not use Soiling Solutions because it wasn't our style and I didn't feel I had tried everything I could to fix his gut first. I softened his poops, made him healthier with probiotics and tried to give him the confidence to go by himself, which eventually worked for us. They used to have lots of posts about confidence-building - but it has all seemed to turn to miralax and soiling solutions lately. I was ready to take him to a counselor because I heard it's psychological but finally empowering him to go on him own eventually worked (was messy for a while but we worked through it). Make sure to read the enco archives for a full spectrum of what's worked.Best of luck, it's absolutely exhausting. To: "miralax " <miralax > Sent: Monday, May 28, 2012 8:13 AM Subject: Re: 8-yr-old son miserable, HELP!

There is an ecnopresis yahoo group too I would encourage you to join. Many have had success w/ the program called soiling solutions I would recommend you google and look into. It will involve enemas and/or suppositories. I've not done the program myself, but I do use suppositories off and on if my DD does not have a BM on her own, but it took years to get to where we are today. I would tell you his stool needs to be formed more for him to be able to push it out rather than sloppy like mirilax makes it and lots here will tell you mirilax possible can paralyze the colon to not be able to feel the urge to push. I never had success w/ mirilax and unfortunately my DD experienced rages while on it. I

would also not

tell you to discontinue probiotics even us eating yogurt. That sounds like ill advice to me personally.

To: miralax Sent: Sunday, May 27, 2012 9:32 PMSubject: 8-yr-old son miserable, HELP!

Hi, my name is Diane and I am new to this group (heard about it from the NY Times article). My son is almost nine and has been on an adult daily dose of Miralax since he was 2. At the time, his problem was just constipation, but we couldn't seem to get it controlled any other way, so we finally started the Miralax despite the warning that it was not for kids. I have tried repeatedly to wean him off, but every time we have ended up with a cessation of pooping and a traumatic cleanout before he can poop again!In the intervening years, his gastro problems have just grown and grown. He spent years having severe intestinal pains, sometimes so bad that I felt like I was comforting a woman in hard labor (without any of the upsides of that!) Lots of painful and explosive gas. Then he developed terrible reflux, which ruined an entire summer, and only then became somewhat controlled by Prevacid. (He recently went off after years of taking it daily and

now the reflux is starting to come back.) We seem to go through cycles of things being pretty good for a period of months and then getting bad again.Currently, our biggest problem symptom is the "need to poop" feeling. He will feel an intense sensation of needing to poop, whether he does or not. I have often wondered whether all these other symptoms are actually side effects of the Miralax, or at least having such runny poops all the time. He has had all the tests and the doctors say there is nothing physically wrong with him. They say it is "psychological" or "behavioral," and maybe it is, but that doesn't mean he is not really suffering. He is already seeing a psychologist for anxiety and was recently diagnosed as PDD-NOS. The folks at Kennedy Krieger who diagnosed him tell me that gastro problems are extremely common in PDD kids. They couldn't explain why. He does have lots of sensory issues, and I wonder if his gastro problems are

essentially a sensory problem? He is supposed to start Occupational Therapy soon, but nobody has ever suggested that it is supposed to help his gastro problems.His last turn for the worse did coincide with both discontinuing Prevacid and discontinuing probiotics, which he was taking both morning and night. His doctor seemed to think that if he ate yogurt, the probiotics were unnecessary, and they are SO expensive and not covered by insurance or even tax-deductible (being OTC). Now I'm wondering if he should go back on?I apologize for the length of this post. Please, if anyone has any experience they would be willing to share, I would really appreciate it. Even if you don't have answers or suggestions, it would help just to know that someone else is having similar issues! We are feeling very alone with this.Thanks so much,Diane

[Guest guest]

Hi Diane

My son was on miralax from age 3 to early 4. It's a trial and error to get off

of it -- because each kid is different. Please check out the files section (on

the left hand naviation side). I posted a doc -What Worked for Us that may help

you. Because your son has been on so long, it VERY likely he will have a

buildup of calcium oxalate crystals in his system. The best way to deal with

them as he detoxes is lots of probiotics. I found prescription strenth VSL

worked well (along with the other remedies). If the doc will list IBS as a

diagnosis code the VSL will be covered by insurance usually.

HTH.

In case navigating the files proves frustrating, here's the direct link.

http://f1.grp.yahoofs.com/v1/kB_ET61MqJPHOgr4jtyhNpnShZegJVTvENTDynY32Aj8nWTm5nj\

Jt2RMuFx0jhxsfYGlatTSlte_8EiGc1yIIP-zaxoKY1TR5Egu/What%20worked%20for%20us.doc

BTW - has he had any UTI's? Irritated urinary tract? It's related to the

miralax.

>

> Hi, my name is Diane and I am new to this group (heard about it from the NY

Times article). My son is almost nine and has been on an adult daily dose of

Miralax since he was 2. At the time, his problem was just constipation, but we

couldn't seem to get it controlled any other way, so we finally started the

Miralax despite the warning that it was not for kids. I have tried repeatedly to

wean him off, but every time we have ended up with a cessation of pooping and a

traumatic cleanout before he can poop again!

>

> In the intervening years, his gastro problems have just grown and grown. He

spent years having severe intestinal pains, sometimes so bad that I felt like I

was comforting a woman in hard labor (without any of the upsides of that!) Lots

of painful and explosive gas. Then he developed terrible reflux, which ruined

an entire summer, and only then became somewhat controlled by Prevacid. (He

recently went off after years of taking it daily and now the reflux is starting

to come back.) We seem to go through cycles of things being pretty good for a

period of months and then getting bad again.

>

> Currently, our biggest problem symptom is the " need to poop " feeling. He will

feel an intense sensation of needing to poop, whether he does or not. I have

often wondered whether all these other symptoms are actually side effects of the

Miralax, or at least having such runny poops all the time.

>

> He has had all the tests and the doctors say there is nothing physically wrong

with him. They say it is " psychological " or " behavioral, " and maybe it is, but

that doesn't mean he is not really suffering. He is already seeing a

psychologist for anxiety and was recently diagnosed as PDD-NOS. The folks at

Kennedy Krieger who diagnosed him tell me that gastro problems are extremely

common in PDD kids. They couldn't explain why. He does have lots of sensory

issues, and I wonder if his gastro problems are essentially a sensory problem?

He is supposed to start Occupational Therapy soon, but nobody has ever suggested

that it is supposed to help his gastro problems.

>

> His last turn for the worse did coincide with both discontinuing Prevacid and

discontinuing probiotics, which he was taking both morning and night. His doctor

seemed to think that if he ate yogurt, the probiotics were unnecessary, and they

are SO expensive and not covered by insurance or even tax-deductible (being

OTC). Now I'm wondering if he should go back on?

>

> I apologize for the length of this post. Please, if anyone has any experience

they would be willing to share, I would really appreciate it. Even if you don't

have answers or suggestions, it would help just to know that someone else is

having similar issues! We are feeling very alone with this.

>

> Thanks so much,

> Diane

>