Guest guest Posted April 5, 2000 Report Share Posted April 5, 2000 We took to SLCH to see neurology, genetics and endocrine. I thought we might have time to look you up, . But between the 3 doctors, feeding and our short lunch break, it got to be pretty late. We figured the babysitters would be ready for us to get home to the other 4 kids! Our neurologist is releasing , unless something comes up. Genetics didn't have much to tell us that we didn't already know. But 's endocrine doctor thinks he may have a growth hormone deficiency. She said that would explain why he's gaining weight well but not getting much taller and he's 13 months and doesn't have teeth yet. Also, she said that could explain part of why he is making such slow progress developmentally. Does this sound familiar to any of you? , we also see Dr Tyschen. Have an appt. on April 19, I think. I've been reading all of these e-mails with lots of interest. So much sounds like ! Unfortunately, I don't have a lot of time to post messages, but will try to check in every once in awhile. also had lots of secretions, and when we brought him home after heart surgery, it seemed like he was always coughing. He was able to be off oxygen when we brought him home, but the coughing and congestion is just now starting to be better. His heart surgery was in Sept. I guess it just takes a little while sometimes. That's all the time I have right now! Better get off of here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 The URL for the Magic Foundation is: http://www.magicfoundation.org Another great page for for references to endo problems is 's page at: http://roses8.tripod.com Casey Mom to Dawn 21 HH, Ken 10 ADHD, 8 CHARGE ICQ 728514 AIM ZeeCasey CHARGE Web Page: http://www.geocities.com/Heartland/1220 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Kristie: Our daughter (7 yrs) is growth hormone deficient, and yes, her teeth were very late coming in - and she FINALLY lost her first baby tooth the last week. Seems that deficiency can cause dental problems. One thing we noticed immediately with the start of GH therapy (injections 5X per week) was a tremendous jump in 's stamina and strength. We thought she was growing as well, but the other aspects were first noted. She made great strides developmentally due to those aspects. It's great is gaining weight. gained no weight or height for 18 months, even though she was getting adequate nutrition. (At least according to the docs - Pediatrician, Nurtitionist, and Endocrine doc - she was getting enough. I have doubts since she was only getting whole milk via night drip for so long, even at 3 years old. Now she gets 3 cans Pediasure overnight, plus whatever she tolerates orally during the day - yogurt, pudding, Jell-O, soup, ice cream, etc.) Glad you've already been hooked up to an endocrinologist. That was our biggest hurdle, to get referred to one by any of the other docs. (We finally did an " end run " to Genetics and got to Endo that way!) Anyway, a great source for growth information is the Human Growth Foundation. Their website is: www.medhelp.org/web/hgf.htm. E-mail is: hgfound@.... Another site is the Magic Foundation. I can't put my finger (or mouse) on the address right now, but it is easy to look up in a browser. Friends in CHARGE, Marilyn Ken (10), (7, CHARGE+), and Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2000 Report Share Posted April 9, 2000 Marilyn, I am so please that you have noticed the other improvements with GH. When started GH we were told that it wasnt the reason she was coping better with the day, or eating better, or better in herself, she didnt grow enough so it was stopped despite our argument that is WAS better for her all round. Thanks for the reenforcing of my ideas about GH. Marie austcharge@... > >Reply-To: CHARGEegroups >To: <CHARGEegroups> >Subject: Re: 's Dr. appts. st SLCH >Date: Fri, 7 Apr 2000 09:40:13 -0700 > >Kristie: >Our daughter (7 yrs) is growth hormone deficient, and yes, her >teeth >were very late coming in - and she FINALLY lost her first baby tooth the >last week. Seems that deficiency can cause dental problems. >One thing we noticed immediately with the start of GH therapy (injections >5X >per week) was a tremendous jump in 's stamina and strength. We >thought she was growing as well, but the other aspects were first noted. >She made great strides developmentally due to those aspects. > >It's great is gaining weight. gained no weight or height >for >18 months, even though she was getting adequate nutrition. (At least >according to the docs - Pediatrician, Nurtitionist, and Endocrine doc - she >was getting enough. I have doubts since she was only getting whole milk >via >night drip for so long, even at 3 years old. Now she gets 3 cans Pediasure >overnight, plus whatever she tolerates orally during the day - yogurt, >pudding, Jell-O, soup, ice cream, etc.) Glad you've already been hooked up >to an endocrinologist. That was our biggest hurdle, to get referred to one >by any of the other docs. (We finally did an " end run " to Genetics and got >to Endo that way!) > >Anyway, a great source for growth information is the Human Growth >Foundation. Their website is: www.medhelp.org/web/hgf.htm. E-mail is: >hgfound@.... >Another site is the Magic Foundation. I can't put my finger (or mouse) on >the address right now, but it is easy to look up in a browser. > >Friends in CHARGE, >Marilyn >Ken (10), (7, CHARGE+), and Rick > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
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