Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 Hi there, I've been following your posts about and want you to know that he's in my thoughts and prayers. With the dissaperance of his villi... have you looked into Celiac Disease? It's an autoimmune disease in which the body's immune system fights the villi and destroys them... due mainly to gluten it goes far beyond that with many, many other foods that only have trace amounts in them so aren't listed as " gluten " foods. Sorry if you've already looked into this and have already ruled it out but if not, maybe it's something else for you too look into. This caught my eye because the only diagnoses for Celiac disease is a biopsy to see if the villi are intact or not. Take care! Leah, mom to 10 yrs and Olivia, 5 yrs, 22lbs, 35 " , RSS, OI > > Hi Everyone, > > > > I may be jumping the gun, but I have been reading your posts for a > > few days now, and I feel numb. My son is 13 months old 26 " and 14#. > I > > was diagnosed with IUGR at 32 weeks. I went through the bedrest and > > constant non-stress tests and perinatologist visits for ultrasounds > > until I was induced at 37 weeks. Troupe was born without > > complications weighing 4lbs 3oz, and 16inches long, gestational age > > 38 weeks. He went home 3 days later at 3 lbs. 14oz. He did fine > with > > temperature control, maintaining his blood sugar, and feeding. On a > > freak chance we found out he had a heart defect when he was 5 days > > old, but that has healed on its own. I guess I am posting becauses > I > > really don't know what to do with myself, I feel a million emotions > > everyday ranging from anger, to complete elation for my most > precious > > gift, to utter sadness, to fear of the unknown. No one ever > mentioned > > RSS until 3 months ago when we finally saw a geneticist at the > > recommendation of his new cardiologist (we moved from Seattle to > > Mobile). The geneticist said he wasn't convinced it was RSS, but he > > says he does have some traits (confirmed by the endocrinologist) > like > > a triangular shaped face, below 3 percentile in wt and ht (still), > > delayed bone age of 2 standard deviations below the mean, and a > poor > > appetite (he will chug bottles all day long and graze on solid > stuff, > > but hates sitting in the high-chair for a meal). (I can probably > > count on my hands the number of times he has actually finished a > jar > > of baby food. Although, I have to say, he has a real interest in > what > > we are eating). But he doesn't have any asymmetry or motor delays. > He > > has hit every developmental milestone on target, or ahead. He has > has > > no problem crawling, walking, climbing, or literally climbing the > > walls. The only possible delay is speech, he babbles contantly and > > points " ba-ba " , " ma-ma " , etc. but no discernable words yet. I guess > > it is a little early to call it a delay. So we finally got blood > > drawn for the UPD 7 test and endo stuff last week, and I won't know > > the results of the UPD for about a month. I feel like I'm in limbo. > I > > read all of these things about feeding tubes, appetite enhancers, > and > > growth hormone treatment and I feel like crying. I know that is > > selfish, but I don't know what to do or if I'm even doing enough. I > > can't find any information on adults with RSS, and I know it is not > a > > new phenomenon. What kind of results do they have with growth > > hormones? My endocrinologist said they response with RSS is good, > but > > is that GOOD enough????? Can he still participate in sports and > other > > activities like other children if we're trying to conserve calories > > for growth????? I don't know what to do. Is there a chance it isn't > > RSS, do other children experience this type of growth delay without > > having RSS? > > > > > ------------------------------------------------------------------- ----------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 no I haven't but I certainly will. For now, since I am giving some expressed breast milk, I and he are on very limited diets and the doctor is so strict (It is tough but I like this after years of oh I don't know so do what you think best). At present we can have rice, vegetables and salt - that is all. The assumption is that he could be allergic to milk, soy, wheat, eggs, meat, fish, gluten the whole gammet. I asked about pancreatic insufficiency and lack of some digestive enzymes when last at the doctors (after reading the post here). The doctor said he didn't think had such issues but I shall definitely find out more on this and ask when I go again in June. Thank you. Again, it is so great and shaves heaps off that trudging, slow progress research time when someone on this list pinpoints new ideas. I am very grateful and again grateful also that our children are going through this in the Internet age. When I started out as a Reuters journalist 15 years ago, it was all royal mail, telephone calls (and even telex machines when trying to contact eastern european regimes). Now, although not good for the eyesight I fear, we have so much more information at our fingertips and so many more people we can reach out to wherever we are in the world. There I go putting my two cents in....again. Debi. mother to in Japan, aged 3 years 6 months, 9.0 kilos, 85cm, RSS, GH, dumping, milk/soy protein allergies? allergies? --> Debi Hi there, I've been following your posts about and want you to know that he's in my thoughts and prayers. With the dissaperance of his villi... have you looked into Celiac Disease? It's an autoimmune disease in which the body's immune system fights the villi and destroys them... due mainly to gluten it goes far beyond that with many, many other foods that only have trace amounts in them so aren't listed as " gluten " foods. Sorry if you've already looked into this and have already ruled it out but if not, maybe it's something else for you too look into. This caught my eye because the only diagnoses for Celiac disease is a biopsy to see if the villi are intact or not. Take care! Leah, mom to 10 yrs and Olivia, 5 yrs, 22lbs, 35 " , RSS, OI > > Hi Everyone, > > > > I may be jumping the gun, but I have been reading your posts for a > > few days now, and I feel numb. My son is 13 months old 26 " and 14#. > I > > was diagnosed with IUGR at 32 weeks. I went through the bedrest and > > constant non-stress tests and perinatologist visits for ultrasounds > > until I was induced at 37 weeks. Troupe was born without > > complications weighing 4lbs 3oz, and 16inches long, gestational age > > 38 weeks. He went home 3 days later at 3 lbs. 14oz. He did fine > with > > temperature control, maintaining his blood sugar, and feeding. On a > > freak chance we found out he had a heart defect when he was 5 days > > old, but that has healed on its own. I guess I am posting becauses > I > > really don't know what to do with myself, I feel a million emotions > > everyday ranging from anger, to complete elation for my most > precious > > gift, to utter sadness, to fear of the unknown. No one ever > mentioned > > RSS until 3 months ago when we finally saw a geneticist at the > > recommendation of his new cardiologist (we moved from Seattle to > > Mobile). The geneticist said he wasn't convinced it was RSS, but he > > says he does have some traits (confirmed by the endocrinologist) > like > > a triangular shaped face, below 3 percentile in wt and ht (still), > > delayed bone age of 2 standard deviations below the mean, and a > poor > > appetite (he will chug bottles all day long and graze on solid > stuff, > > but hates sitting in the high-chair for a meal). (I can probably > > count on my hands the number of times he has actually finished a > jar > > of baby food. Although, I have to say, he has a real interest in > what > > we are eating). But he doesn't have any asymmetry or motor delays. > He > > has hit every developmental milestone on target, or ahead. He has > has > > no problem crawling, walking, climbing, or literally climbing the > > walls. The only possible delay is speech, he babbles contantly and > > points " ba-ba " , " ma-ma " , etc. but no discernable words yet. I guess > > it is a little early to call it a delay. So we finally got blood > > drawn for the UPD 7 test and endo stuff last week, and I won't know > > the results of the UPD for about a month. I feel like I'm in limbo. > I > > read all of these things about feeding tubes, appetite enhancers, > and > > growth hormone treatment and I feel like crying. I know that is > > selfish, but I don't know what to do or if I'm even doing enough. I > > can't find any information on adults with RSS, and I know it is not > a > > new phenomenon. What kind of results do they have with growth > > hormones? My endocrinologist said they response with RSS is good, > but > > is that GOOD enough????? Can he still participate in sports and > other > > activities like other children if we're trying to conserve calories > > for growth????? I don't know what to do. Is there a chance it isn't > > RSS, do other children experience this type of growth delay without > > having RSS? > > > > > ------------------------------------------------------------------- ----------- > Quote Link to comment Share on other sites More sharing options...
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