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Sorry! skipped over your previous email.. You answered a lot of the questions there!1 Was the EE a result of miralax? I have never heard of that. Is that something that is only detected with colonoscopy?? Did it cause constipation, or was it a result? Would like to know more!

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Jeanie,

Thank you for this reply and I am thankful too for this group. My daughter always has white blood cells in her urine - but nothing cultures. A urologist said that this was just because some kids always have bacteria trapped "down there".

I am so upset. I was wary of PEG/Miralax when it was first presribed, but 5 separate peditricians and a GI doctor all told me it was fine. One doctor said it was the safest stuff around and you can take it your whole life if need be. And now it is over the counter! I was given the choice to use Lactulose a while back, but the doctors told me PEG was more effective so I stuck with it. I am taking my daughter off of it now. I just hope she doesn't have long term damage. How can this happen? Why don't doctors know any better?

Annedreamjeanie@ comcast.net wrote:

Hi Ann,

there seems to be a pattern here of uti's and uti's that are coming up negative, we think the medication is irritating it and is also making the urine go back up into the kidney's. Urinary reflux. We also think this medication is breaking down into oxalate crystal, since the children are coming up with oxalate crystals in their urine. you can have your doctor simply look under the mircroscope to check. With extensive investigation of this medication, it appears that this medication is breaking down into it's original state or it's byproducts, ethylene glycol. All them symptoms seem to mimic those of EG.

Jeanie

------------ -- Original message ------------ -- From: Anne Reilly <reilly_anne@ yahoo.com>

Hello,

I have a 7 year old daughter who has been on Miralax for 2 years now. She had severe constipation since age 3 and the peditricians perscribed Miralax for it. She would rarely have a BM in the toilet, and when she did it was huge. A GI doctor diagnosed her with megacolon and prescribed cleanouts with Miralax and twice daily doses of Miralax to keep things going.

She also had some behavioral therapy to have a daily BM in the toilet.

She is having daily BMs in the toilet, but also lots of underwear staining. When I try to back off of the Miralax, she gets backed up again. I don't know what to try next. If you have any suggestions, it would be appreciated. One doctor suggested Lactulose. Another doctor told me Miralax was perfectly safe and she could be on it the rest of her life if needed. I just can't accept that my daughter would need this medicine daily to have a BM!

I don't know if she has had any reactions to the Miralax. She has had 4 UTIs and I worry about damage to her kidneys. Are there tests I can ask the doctors for to test kidney function?

I can't believe how hard it is to treat this type of constipation. I have neighbors whose kids were potty trained at age 2 and can sit an have a BM whenever they need to and I wonder what ever happened to us.

Thank you,

Anne

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