Re: New Member Intro & Question

[Guest guest]

To the silvert family, My dd has the same problem with the extreme loads of gas and has never repaired itself after 6 and 1/2 years. I've seen other posts on here where GI doc's can't believe how extended and blown up the colon is. I believe it all came from the miralax, it even states, it's a side affect, but isn't it funny that my child was only on it for ten days and now lives a life of gas and bloating beyond belief. I have found her anxiety declines if i prompt her to pass the gas. It obviously does something or their wouldn't be so many people complaining about the same issues. My Doc said the same thing about swallowing air and I didn't believe it either. I noticed you said your dd experienced hyponatremia, so did mine, what's puzzling about this whole thing is that this med is SUPPOSIVELY not absorbed? So how could they experience hyponatremia? I have 600 FDA reports that people have sent in, including myself, and they arn't pretty. If you want, I'll

send them to you. There are about 10 children who've died on this med and many with seizures, convulsions, etc. Please contact Med Watch and let them know about your adverse reaction. And you can contact the Freedom of information Act asking for any adverse reactions to Polyethylene Glycol like I did, I haven't submitted in about a year, so I would amagine the # is much higher now. I have been rresearching this for 6 years and I am interested in what, Septo- Optic Dysplasia is and microcytic anemia? could you explain? JeanieThe Silvert Family wrote: B"HHello All,I was stunned to find this list, as I believe my daughter may've been damaged by Miralax/Glycolax. Miri is now almost 14 and has Septo-Optic Dysplasia with blindness and panhypopituitarism. She is also severely autistic, but pretty high functioning thanks to many alternative treatments, including the gluten free, casein free diet which we put her on in November 2000. Her story is as follows:Mirjana has a long history of problem BMs; they have been dramatically different at different times in her life. Reglan (.4 cc qid) was prescribed for her severe reflux, beginning at 2 weeks of age. By 3 mos. of age, her Reglan dose was .8 cc and formula was weighted with rice cereal per her MD. At 6 months, her first solid food was oatmeal, since she’d been on rice for weighting, and her Reglan was increased to 1.25

cc qid. Reglan was discontinued about 18 months of age. Beginning about age one year, Miri began to be terribly constipated and had to have a fully bottle of prune juice daily in order to make. (Karo syrup didn’t even begin to have an effect.) Sometime in toddlerhood, her BMs became very mushy and obnoxiously smelly. They contained all kinds of obviously undigested foods and fibers. She would often make just a Tbsp. at a time and often would make many BMs over the course of several hours. This apparent GI involvement was more and more troubling the longer she was not able to be toilet trained. Although this was repeatedly brought to the attention of her pediatrician, it was called “toddler diarrhea” and nothing specific was suggested.Miri also began to have urinary tract infections, beginning in May ’99. The first of these, undetected, precipitated a major adrenal crisis (due to her

panhypopituitarism) for which she was hospitalized for a week at CMH. As time went on, these UTIs became more and more frequent. (A urine flow study, VCUG, completed about this time was normal.) Finally after about 18 months of this, we put her on cranberry extract. (Until recently, she had only one UTI on the cranberry.) During the first 18 month period of frequent UTIs, endocrine crises, and ER visits, Miri had one incident of low sodium (hyponitremia) which required several days’ hospitalization. We don’t know what precipitated this problem. Miri was not toilet trained at all until going on the GF/CF diet in the fall of 2000 (age 8) at which time she became bladder competent in the daytime. (Her lack of training was never a problem of being unable to hold urine; she had difficulty releasing urine into the toilet.) Miri was not able to produce a BM in the toilet at this time, apparently due to

anxiety. She did produce a BM daily however, but this would occur in her pull-up after she was put to sleep. We felt this was contributing to the frequent UTIs when we were not immediately changing her.In the fall 2002, Miri ceased having nightly BMs, but this wasn’t discovered for a few days. (My husband and I each thought the other had changed her.) We gave her a suppository, which produced what must’ve been 5# of feces, very hugely formed. Miri complained that it hurt her, and went another couple of days without a BM. We began a nightly suppository regimen, using the drug-containing type, as the other did not stimulate a BM. Over about the course of 6 weeks we were able to wean her off the medicine and had trained her to make a BM in the toilet nightly.In April 2005, Mirjana was hospitalized (her third time) at Riley for an acute adrenal crisis. The only demonstrable precipitant was

constipation. We, her parents, suspected she’d passed a kidney stone(s), but there was no such evidence on the CT scan. Following a consult with the Gastro team, Miri was placed on Glyco-Lax, 2-17 gram doses daily, which I reduced to I dose soon thereafter, as she began staining her panties. We discontinued using Glyco-Lax in late December 2005, due to concerns about her extreme bloating and flatulence, which seemed to have commenced sometime the preceding summer. (I shared my concerns with the dietitian at CMH who suggested Benefiber as a replacement for the Glyco-Lax, starting gradually, and working up to 5T. daily, which Miri is currently taking.) We also radically reduced the amount of soy products in her diet. It was because of the extreme bloating and flatulence that we started seeing a GI doctor, Strople at CMH in Chicago, who ordered abdominal x-rays, blood work, stool samples,

and dietary analysis in December 2005. These results were not remarkable except for markers for microcytic anemia, and gas distension of the entire intestinal tract. Dr. Strople’s diagnostic impression was air swallowing. We (Miri’s parents) insisted this was not the problem, and Dr. Strople agreed to order a hydrogen breath test. The first test was deemed inconclusive, so a second was ordered. The second was negative, but a third test was done using lactulose instead of glucose, because the glucose test can have false negatives. This test was also negative, so a gastric emptying scan was ordered. This test diagnosed delayed gastric emptying (gastroparesis.) A trial of Erythromycin was ordered, 200 mg. 3x daily. Initially, this seemed to decrease her bloating, but within 2 weeks, the effect ceased. A fresh prescription was obtained, but with no positive effect. At this point, Dr. Strople

suggested a trial of Flagyl, but we were resistive to this idea, due to the high incidence of nausea. (Miri would not be able to control where she became sick…) Dr. Strople also suggested increasing the Erythomycin to four times daily, but we chose first a trial of choline citrate as suggested by Dr. Myrna Trowbridge, Miri’s nautural treatment oriented G.P. We started off with 1300 mg. daily, and saw no effect. This was increased to 1300 mg. twice daily, but we are still seeing no effect.We recently took Miri to Dr. ph Croffie, a GI motility specialist at Riley CH in Indianapolis. He was somewhat agast that a barrium small bowel x-ray series had never been done, so he ordered that as well as repeated blood work, all of which showed nothing remarkable, except that the radiologist noted she became increasingly more distended over the course of the SB study.So, here's my kid who blows up

as much as 5.25" in waist measurement over the course of the day, meaning one set of clothes for morning and another for afternoon. While we knew she had GI issues, we were working on these via diet and her stool samples were showing strong evidence of improvement. Then, she goes on this Glyco-Lax and sometime after that starts up with chronic ab distension and gas...and horribly so. She says her belly always hurts and it seems to be getting worse and worse. Also, we are Torah observant Jews...she used to not blow up on fast days, but now never seems to lose the bloat completely, even after fasting.Anybody else ever have similar symptoms after feeding their child anti-freeze????Thanks,Debra