Re: Petition

[Guest guest]

Hi Jeanie-Here is my letter - I hope it is not too late...My son was born with developmental delays. At a year old, he began to experience constipation. We were referred to a GI doctor. The doctor prescribed glycol - a generic brand of Miralax. The doctor prescribed a capful to begin with and to adjust as needed. I called the doctor immediately after I read the recommended dose very concerned. I read the packaging insert and thought the prescribed amount was too much as it was an adult dosage. Also, on the label it said for only a short term use, but the office told me it was safe for long term use in my son's case. My son had been a very happy baby. When we began the Glycol, he experienced long crying episodes. I thought it was the constipation. Consequently, I was told to increase the glycol. He would scream in agony, so badly that I would literally have to hold him for days. My husband couldn't even bear being in the house listening to our son in pain. It was very stressful hearing this day in and day out for years! Fast forward to potty training age, my son wore a diaper until he was 4 years old due to urinary accidents and fecal soiling. Again. I was told to up the Glycol. We saw a behavioral psychologist at Kennedy Kreiger to help with toilet training with some success, but still urinary accidents and fecal soiling. My son still had incredible mood swings, would scream sitting on the toilet or when he had a bowel movement.By chance, I was on a yahoo group discussing our predicament. One mother wrote that her doctors do not prescribed Miralax to children due to side effects - only milk of magnesia. That day, I took my son off Glycol. I put him on Milk of Magnesia. It is like I have my boy back 5 years later! No more urinary accidents and bowel accidents. I am horrified thinking I had him on this medicine for 5 years! Every doctor always recommended this from specialists to ER doctors. I didn't know there were other options and what side effects glycol had.Respectfully submitted, Joanna Brunner

Does anyone have any input? Carol, I was wondering if we could start the letter off like this;My name is Jeanie Ward and I would like to petition the FDA to require that ALL the Nations Neurologists, Gastorinterologist, Urologists, Nephrologists, Endocrinologists,

Pharmacologists, Microbiologists hold a review on the subject of the safety and effectiveness of polyethylene glycol in pediatric and adult patients and the possibility of pulling the medication or black box warning. It appears that there are many parents who have told their medical professionals of their concerns but the medical professionals seem to stand behind the protocol of it being poorly absorbed. This protocol needs to be reevaluated as the number of adverse reactions and deaths are on the rise. If the protocol is incorrect, our own medical professionals will determine that the long list of side effects reported must be coming from some other underlying

condition. In our investigation we've studied the FDA adverse reactions (FOIA AERS reporting system) for a decade and created a yahoo group titled, "Miralaxgroups@..." as a support group and to find others with similar stories, and enclosed is our findings.................