Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 Why did she say she was not RSS/SGA. Does she have the characteristic? 's Dr. H Visit Well, we had our three month check up with Dr. H yesterday. At the end of January weighed 30.2 pounds and was 97.6 cm. Yesterday she was 31.7 pounds and 98.9 cm. Dr. H was happy with her weight gain but not height gain. She told us that 's target height is 5'2 " . She is tracking at 4'10 " . However, she stated that it appears with each time is measured, her height velocity is decreased. She noted a " growth spurt " from 2/04 when she saw her local endo to our first visit with Dr. H 1/31/05. I attribute that to what 's cardiologists all said, that we would see a slight growth spurt but not a catch up after her open heart surgery to close a large hole in her heart on 11/3/03. So that is probably why it looked like she had her best growth in that year. Dr. H said her height SDS has dropped 0.11 SD and her weight has increased by 0.17 SD. Currently her weight SDS is 0.26 SD ahead of her ht SD. is 1.53 SD behind her target. Dr. H wants us to schedule to have a bone age done and a clonidine test. If she fails that test then we should do the arginine test. Whatever that is. If she fails that test as well then the next step is an MRI of her brain to make sure there are no abnormalities. Her blood work from her local endo shows that she is not growth hormone deficient. Her thyroid levels she said were low, however, she does not believe is hypothyroidism. Dr. H said that is definitely NOT RSS or SGA and that her growth has not thing to do with lack of calories, but does not know why she does not grow well. If anyone knows anything about these tests, I would appreciate any information or advice. B 5 and Kelli 2 3/4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 hey jennifer!! call me tomorrow, christopher had both of these tests and the mri of the brain after he failed the tests!! his pituatary gland was fine as per the mri result. but he did fail the other tests. he is not growth hormone deficiant, he just doesnt make enough to grow properly. that is why the other endo put him on ght last feb and at a higher dose (.6). i will talk to you by phone!! ((HUGS)) jodie c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2005 Report Share Posted May 18, 2005 Hey At our first visit with Dr. H her first words were " who said this child is RSS. " Then after doing her examination and going through all of 's medical records, she said that she was not. She noted that she had some of the characteristics - the curved finger, the webbed toes, the high arch in the mouth, slightly broad forehead and slightly low set ears. Then she went on to say that about 5% of the world has the curved finger and webbed toes. I'm not exactly sure what she basis her diagnosis on. At this point, I guess I go with her diagnosis and really it doesn't make much of difference because the treatment is the same. She obviously doesn't agree with the geneticist. Oh well. I must say that when she was like 2 and 3 had more of a look of RSS than she does now. In fact, Jodie Cals has a couple of pictures I asked her to scan and put in the photo section here. I'm sure as soon as she has a chance she will. Now that I have a digital camerca I can easily post a recent picture just not old ones. B 5 and Kelli 2 3/4 --- jamie xxxx wrote: > Why did she say she was not RSS/SGA. Does she have > the characteristic? > > > 's Dr. H Visit > > > Well, we had our three month check up with Dr. H > yesterday. At the > end of January weighed 30.2 pounds and was > 97.6 cm. Yesterday > she was 31.7 pounds and 98.9 cm. Dr. H was happy > with her weight gain > but not height gain. She told us that 's > target height is 5'2 " . > She is tracking at 4'10 " . However, she stated that > it appears with > each time is measured, her height velocity is > decreased. She > noted a " growth spurt " from 2/04 when she saw her > local endo to our > first visit with Dr. H 1/31/05. I attribute that to > what 's > cardiologists all said, that we would see a slight > growth spurt but > not a catch up after her open heart surgery to close > a large hole in > her heart on 11/3/03. So that is probably why it > looked like she had > her best growth in that year. Dr. H said her height > SDS has dropped > 0.11 SD and her weight has increased by 0.17 SD. > Currently her weight > SDS is 0.26 SD ahead of her ht SD. is 1.53 > SD behind her target. > > Dr. H wants us to schedule to have a bone age > done and a > clonidine test. If she fails that test then we > should do the arginine > test. Whatever that is. If she fails that test as > well then the next > step is an MRI of her brain to make sure there are > no abnormalities. > > Her blood work from her local endo shows that she is > not growth > hormone deficient. Her thyroid levels she said were > low, however, she > does not believe is hypothyroidism. > > Dr. H said that is definitely NOT RSS or SGA > and that her > growth has not thing to do with lack of calories, > but does not know > why she does not grow well. > > If anyone knows anything about these tests, I would > appreciate any > information or advice. > > B > 5 and Kelli 2 3/4 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2005 Report Share Posted May 18, 2005 hey jennifer!! i know i have been meaning to scan them in for you!! sorry!! i will try and remember to do it tonight!!! jodie c > > Why did she say she was not RSS/SGA. Does she have > > the characteristic? > > > > > > 's Dr. H Visit > > > > > > Well, we had our three month check up with Dr. H > > yesterday. At the > > end of January weighed 30.2 pounds and was > > 97.6 cm. Yesterday > > she was 31.7 pounds and 98.9 cm. Dr. H was happy > > with her weight gain > > but not height gain. She told us that 's > > target height is 5'2 " . > > She is tracking at 4'10 " . However, she stated that > > it appears with > > each time is measured, her height velocity is > > decreased. She > > noted a " growth spurt " from 2/04 when she saw her > > local endo to our > > first visit with Dr. H 1/31/05. I attribute that to > > what 's > > cardiologists all said, that we would see a slight > > growth spurt but > > not a catch up after her open heart surgery to close > > a large hole in > > her heart on 11/3/03. So that is probably why it > > looked like she had > > her best growth in that year. Dr. H said her height > > SDS has dropped > > 0.11 SD and her weight has increased by 0.17 SD. > > Currently her weight > > SDS is 0.26 SD ahead of her ht SD. is 1.53 > > SD behind her target. > > > > Dr. H wants us to schedule to have a bone age > > done and a > > clonidine test. If she fails that test then we > > should do the arginine > > test. Whatever that is. If she fails that test as > > well then the next > > step is an MRI of her brain to make sure there are > > no abnormalities. > > > > Her blood work from her local endo shows that she is > > not growth > > hormone deficient. Her thyroid levels she said were > > low, however, she > > does not believe is hypothyroidism. > > > > Dr. H said that is definitely NOT RSS or SGA > > and that her > > growth has not thing to do with lack of calories, > > but does not know > > why she does not grow well. > > > > If anyone knows anything about these tests, I would > > appreciate any > > information or advice. > > > > B > > 5 and Kelli 2 3/4 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2005 Report Share Posted May 18, 2005 Sorry we missed seeing you! We were there from 9am to 12:30pm so we must have barely missed you. Colin, Hayden and Grant Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2005 Report Share Posted May 19, 2005 I tell you it was hard. When we first heard RSS the geneticist said - it means she will be small. So I said, so you are telling me I have a gymnaist instead of a basketball player? Then we go to the endo and he explains it more and tells us about the Magic Foundation and gh. It was after that when I learned all this from this group. A year after the first endo is when I went to Dr. H and I felt so lost when she told me that was not RSS. I felt like okay, but then why is she not growing and why is she small. With the RSS diagnosis I felt like I had a reason why and that was fine, now once again after my visit with her I'm feeling why? what is it then? I feel like I'm hanging out there. I will definitely send pictures of . I have your address. (I don't have them in the computer) all from as a baby until now. B 5 and Kelli 2 3/4 --- jamie xxxx wrote: > So how do you feel about going from one thing to > another? Can you send me picture of ashley? > > > 's Dr. H Visit > > > > > > Well, we had our three month check up with Dr. H > > yesterday. At the > > end of January weighed 30.2 pounds and was > > 97.6 cm. Yesterday > > she was 31.7 pounds and 98.9 cm. Dr. H was happy > > with her weight gain > > but not height gain. She told us that 's > > target height is 5'2 " . > > She is tracking at 4'10 " . However, she stated > that > > it appears with > > each time is measured, her height velocity > is > > decreased. She > > noted a " growth spurt " from 2/04 when she saw her > > local endo to our > > first visit with Dr. H 1/31/05. I attribute that > to > > what 's > > cardiologists all said, that we would see a slight > > growth spurt but > > not a catch up after her open heart surgery to > close > > a large hole in > > her heart on 11/3/03. So that is probably why it > > looked like she had > > her best growth in that year. Dr. H said her > height > > SDS has dropped > > 0.11 SD and her weight has increased by 0.17 SD. > > Currently her weight > > SDS is 0.26 SD ahead of her ht SD. is 1.53 > > SD behind her target. > > > > Dr. H wants us to schedule to have a bone > age > > done and a > > clonidine test. If she fails that test then we > > should do the arginine > > test. Whatever that is. If she fails that test > as > > well then the next > > step is an MRI of her brain to make sure there are > > no abnormalities. > > > > Her blood work from her local endo shows that she > is > > not growth > > hormone deficient. Her thyroid levels she said > were > > low, however, she > > does not believe is hypothyroidism. > > > > Dr. H said that is definitely NOT RSS or > SGA > > and that her > > growth has not thing to do with lack of calories, > > but does not know > > why she does not grow well. > > > > If anyone knows anything about these tests, I > would > > appreciate any > > information or advice. > > > > B > > 5 and Kelli 2 3/4 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2005 Report Share Posted May 20, 2005 That has got to be hard. Well good luck keep me updated. I wonder how Dr.H is going to respond to Tori She really has not been that sick and if she has had some other underlying problems we have not noticed, there has been times where she has complained of headaches, that her chest hurt and she was tired. She also gets diarrhea allot. She is a pretty good eater most of the time. She was seen by a gastrontologist And he had said that she had toddlers diarrhea that it would last for 18 or months but she still has it every once in a while. Talk to you soon. 's Dr. H Visit > > > > > > Well, we had our three month check up with Dr. H > > yesterday. At the > > end of January weighed 30.2 pounds and was > > 97.6 cm. Yesterday > > she was 31.7 pounds and 98.9 cm. Dr. H was happy > > with her weight gain > > but not height gain. She told us that 's > > target height is 5'2 " . > > She is tracking at 4'10 " . However, she stated > that > > it appears with > > each time is measured, her height velocity > is > > decreased. She > > noted a " growth spurt " from 2/04 when she saw her > > local endo to our > > first visit with Dr. H 1/31/05. I attribute that > to > > what 's > > cardiologists all said, that we would see a slight > > growth spurt but > > not a catch up after her open heart surgery to > close > > a large hole in > > her heart on 11/3/03. So that is probably why it > > looked like she had > > her best growth in that year. Dr. H said her > height > > SDS has dropped > > 0.11 SD and her weight has increased by 0.17 SD. > > Currently her weight > > SDS is 0.26 SD ahead of her ht SD. is 1.53 > > SD behind her target. > > > > Dr. H wants us to schedule to have a bone > age > > done and a > > clonidine test. If she fails that test then we > > should do the arginine > > test. Whatever that is. If she fails that test > as > > well then the next > > step is an MRI of her brain to make sure there are > > no abnormalities. > > > > Her blood work from her local endo shows that she > is > > not growth > > hormone deficient. Her thyroid levels she said > were > > low, however, she > > does not believe is hypothyroidism. > > > > Dr. H said that is definitely NOT RSS or > SGA > > and that her > > growth has not thing to do with lack of calories, > > but does not know > > why she does not grow well. > > > > If anyone knows anything about these tests, I > would > > appreciate any > > information or advice. > > > > B > > 5 and Kelli 2 3/4 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2005 Report Share Posted May 20, 2005 hey jennifer!! give me a call today if you get a chance!! jodie c Quote Link to comment Share on other sites More sharing options...
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