Guest guest Posted October 22, 2001 Report Share Posted October 22, 2001 My name is Kim and my son was diagnosed with RSS on Nov. 26. We live in Huntington Beach, CA. is 16 months old, 17 lbs and 28 1/2 in. He was born at 33 weeks gestation weighing 2 lbs 10 oz and 14 1/2 in. We knew he was going to be premature due to uterine fibroids that were bigger than him. It was a very difficult pregnancy. You name it, I had it. has frontal bossing, 3 middle toes partially webbed on both feet, small fingers curved in, small teeth and a very poor appetite. has been on Periactin for 2 weeks(1cc twice a day). Lately, he spits out almost everything he puts in his mouth. He was doing this prior to Periactin. He is on 2 cans of Pediasure a day and that has caused a nice layer of plaque on his full set of teeth. He now has an appointment to have his teeth cleaned. is going to see a GI doctor on Dec 28. They may do tube feedings just at night while he sleeps through a pump. Has anybody had this done before? He was gavaged when he was born and he barely tolerated that. Any specific questions I should ask the GI doc? We also have an appoinment to see a geneticist. We are in the process of trying to get UPN #7 approved by our insurance. Any suggestions of questions or tests for the geneticist? To all those who post messages, thank you. It's been very helpful to learn from other people's experiences and to know we're not alone. Thanks again. Tom, Kim and Quote Link to comment Share on other sites More sharing options...
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