Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 Hi Katy and everyone, I have not posted in a while. I sorta feel out of the loop. Natasha's doctors refuse to allow us to go for another opinion to a doctor that we saw at a Short Stature Symposim who feels Natasha has RSS. Now we are stuck in a hole.... at least that is how it feels. Natasha is barely growing at all. Her own very slow growth curve has fallen off. She has not grown even 1/2 inch in 6 to 8 months... has put on perhaps 2 pounds in a year or so. Well... after reading the last post... freaks me out. Am I not doing enough. We have seen 3 genetist and 3 endocrinologist. She has been followed pretty closely. They will not commit that she is a dwarf... they give no answers. I am still out of my mind a bit I guess. I worry. She is cute and seemingly healthy. Has not been sick in quite a while... has lots of energy,,, is strong physically and very athletic for her size. At least that is how she appears to me. For us,,, diagnosis would put my mind at a bit of ease I think. If I could stop worrying and concentrate on the positive that would be so much better. The not knowing is un nerving. Does anyone have a sugestion? We do not have the recources to pay for a private consult... insurance stuff seems almost impossible for me right now. THat is a whole terrible long story in itself. Thanks for letting me vent. Hugs, Ann,,, Mom to Natasha... 4 years 10 months,,, 35.5 inches,,, 29 pounds soaking wet with clothes on. Many Rss Features,,, no diagnosis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Hi Katy, I haven't heard of anythng similar but it makes sense. You need fuel (food) to grow. If you deplete the fuel your body dips into reserves (fat). I suppose this could cause a drop in blood sugar level and produce hypoglcemia. Thanks for the update. Good luck. Ken M katy badt-frissora on 10/16/2000 01:11:36 AM Please respond to RSS-Supportegroups To: RSS-Supportegroups cc: Subject: Visit with DR. H . Hi Everyone, We had our 3 month visit with Dr. H. It was great to meet S., her husband, Steve and her daughter, ! was beautiful and so brave: it was her first day of GHT...I can't wait to hear from to see how the rest of the week has gone... Anyway, bottom line: Dr. H. was concerned about because: 1) His linear growth velocity rate slowed down (He " only " gained an inch during this last 3 month period). 2) His weight gain was minimal 3) We were describing 's major mood swings, irratibility and sleeplessness to her. 4) had missed 3 doses of GHT at the time we saw her (insurance company mix-up---grrrrrr...another story) She told us she was worried that was not getting enough calories. She was worried for two reasons: First, she said that GHT cannot work in a vacuum. The child must keep the caloric intake up. Second, she said that even though may not have suffered from hypoglycemia in the past, she said that GHT is a double edged sword. Basically, the way I understood her, the body is using up calories at a faster rate. So, ironically, now the brain is even more danger not getting enough sugar. She also told us that the body " gets used " to the GHT as an insulin-level maintaining agent, and that even one day without it can cause the glucose level to spike downward. She said the absolute level may still measure " normally " , but that it is the sudden faster rate of decrease which can cause a child to suffer hypoglycemia or even a seizure. (She upped his Periactin dosage to 5.3cc before dinner/breakfast and also upped his GHT dosage to .44 cc a night). Have any of you heard similar issues with GHT? I'm trying to make sense of it all...I guess we got complacent after 's last growth spurt, and stopped focusing on the calories so much...I also didn't realize that missing one dose was such a big deal. Dr. H. said it really was, not so much for the growth aspect, but for the sugar level problem. Thanks for any info here! Katy Mom to , 3 yrs, 10 months--31 pounds, 38 " --GHT since April; Periactin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Katy What a terrible mess. I am saving this letter for when I go for our next endo. visit for Adam to start growth hormone. Thanks for taking the time to explain what you learned in detail. Adam is hypo-g and I would never have thought there would be a connection. Whatever you find out (if it's via here I'll read it) or anywhere else will you keep us informed so we can " watch " our guys. Thanks Katy Debby katy badt-frissora wrote: > Hi Everyone, > > We had our 3 month visit with Dr. H. It was great to meet S., her > husband, Steve and her daughter, ! was beautiful and so brave: > it was her first day of GHT...I can't wait to hear from to see how the > rest of the week has gone... > > Anyway, bottom line: Dr. H. was concerned about because: > 1) His linear growth velocity rate slowed down (He " only " gained an inch during > this last 3 month period). > 2) His weight gain was minimal > 3) We were describing 's major mood swings, irratibility and sleeplessness > to her. > 4) had missed 3 doses of GHT at the time we saw her (insurance company > mix-up---grrrrrr...another story) > > She told us she was worried that was not getting enough calories. She was > worried for two reasons: First, she said that GHT cannot work in a vacuum. The > child must keep the caloric intake up. Second, she said that even though > may not have suffered from hypoglycemia in the past, she said that GHT is a > double edged sword. Basically, the way I understood her, the body is using up > calories at a faster rate. So, ironically, now the brain is even more danger > not getting enough sugar. > > She also told us that the body " gets used " to the GHT as an insulin-level > maintaining agent, and that even one day without it can cause the glucose level > to spike downward. She said the absolute level may still measure " normally " , but > that it is the sudden faster rate of decrease which can cause a child to suffer > hypoglycemia or even a seizure. (She upped his Periactin dosage to 5.3cc before > dinner/breakfast and also upped his GHT dosage to .44 cc a night). > > Have any of you heard similar issues with GHT? I'm trying to make sense of it > all...I guess we got complacent after 's last growth spurt, and stopped > focusing on the calories so much...I also didn't realize that missing one dose > was such a big deal. Dr. H. said it really was, not so much for the growth > aspect, but for the sugar level problem. > > Thanks for any info here! > Katy > Mom to , 3 yrs, 10 months--31 pounds, 38 " --GHT since April; Periactin > Quote Link to comment Share on other sites More sharing options...
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