Re: Latest word from a new doctor

[Guest guest]

thank you for this post. any medication including tylenol can have adverse effects in anyone. some kids need miralax. my son is one of them we have been to the best hospitals all over.. johns hopkins.. etc. and tried everything. sadly the only thing that remotely helps him is the miralax. these message boards have made me crazy for years. i dont know why i keep reading them!

Subject: Latest word from a new doctorTo: miralax Date: Monday, January 11, 2010, 10:17 PM

I met with a new doctor today. He is a gastroenterologist. I went to discuss my son's motility issues and Miralax.

His opinion was the risk I took taking my son on the roads in Michigan today was greater than that which Miralax presents. When I asked for alternatives, although he felt Miralax was the best option, we discussed senna and Lactulose.

There were two other tidbits he shared with me that I found interesting:

First, there was a nurse who administered 17 grams of Miralax via IV instead of orally. It produced no adverse effects. The doctor and I agreed that we hope this person no longer has their nursing license.

I looked for documentation on this online, but couldn't find it readily available. But I did find a study where they are using PeG to treat head wounds in animals. http://www.ncbi. nlm.nih.gov/ pmc/articles/ PMC2474576/

Second, there was a 3 year study where patients with cerebral palsy took miralax. No negative side effects were documented.

We also discussed the 2-4% absorption. I asked "where does it go?" He indicated that it ends up in the urinary system. He said there is a need to be vigilant against urinary tract infections. As my son is on a intermittent catheter program, that is a way of life for us already.

I was also informed that stool is about 50% bacteria, and that is one of the reasons why it is so important to relieve / remove the constipation.

respectfully

Jack

[Guest guest]

Everything in life is a risk and you have to weigh that up. If miralax is all

that works and you have no adverse effects then clearly the risk is less than

that of constant impaction requiring hospital cleanouts and ending in a

megacolon that won't work at all.

Prior to doing the interferential therapy trial with my daughter Miralax was a

non issue for us as it simply didn't work and she flushed through her ACE.

During the trial it became essential, it was the difference between the

interferential therapy working or not. Once she finished and weaned off the ITF

it was still essential but is becoming less so as we transition to magnesium.I

will be very happy to get her off miralax it's true, no one wants to take risks

with anything if they don't have to and i'm no different.

The thing is, without the Interferential therapy and the accompanying

miralax we would never have had that luxury. She would still be flushing through

her ACE or more likely have had a colostomy by now.

So to me the end definitely justified the means.

If you get a bad reaction to a medication and there is an alternative, well of

course you would choose that. But if you don't and there isn't...well, what

choice do you have.

Many on here use diet, and we do too now that my daughters colon operates in

something substantially closer to a normal one. but for kids with congenital

motility disorders food often makes no difference at all. This was the case with

us prior to IFT. All the laxative foods in the world made not one bit of

difference,

It was only when her colon started to function again that we started to see that

food made a difference and now it makes a really big difference, because she is

better.

Rosemary

New Zealand

Mum to and 15, NID,

Appendicostomy/Malone/ACE, Hypertonic

sphincter, Sphincterotomy, Botox Feb 2008, Dyspraxia,

Growth issues. July 2008 Started Interferential Therapy, October 2008….we have

Poop! No more flushes since.

Nov 2008, Scoliosis, pectus excavatum.

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> Subject: Latest word from a new doctor

> To: miralax

> Date: Monday, January 11, 2010, 10:17 PM

>

>

>  

>

>

>

>

> I met with a new doctor today.  He is a gastroenterologist.  I went to

discuss my son's motility issues and Miralax.

>  

> His opinion was the risk I took taking my son on the roads in Michigan today

was greater than that which Miralax presents. When I asked for alternatives,

although he felt Miralax was the best option, we discussed senna and Lactulose.

>  

> There were two other tidbits he shared with me that I found interesting:

>  

> First, there was a nurse who administered 17 grams of Miralax via IV instead

of orally.  It produced no adverse effects.  The doctor and I agreed that we

hope this person no longer has their nursing license.

>  

> I looked for documentation on this online, but couldn't find it readily

available.  But I did find a study where they are using PeG to treat head

wounds in animals. http://www.ncbi. nlm.nih.gov/ pmc/articles/ PMC2474576/

>  

> Second, there was a 3 year study where patients with cerebral palsy took

miralax.  No negative side effects were documented.

>  

> We also discussed the 2-4% absorption.  I asked " where does it go? "   He

indicated that it ends up in the urinary system.  He said there is a need to

be vigilant against urinary tract infections.  As my son is on a intermittent

catheter program, that is a way of life for us already.

>  

> I was also informed that stool is about 50% bacteria, and that is one of the

reasons why it is so important to relieve / remove the constipation.

>  

>  respectfully

>  

> Jack

>  

>  

>