Guest guest Posted August 27, 2000 Report Share Posted August 27, 2000 Hello everyone! I know that there are a few kids out there that are on growth hormone, but I am wondering if any of them also have complex heart disease. " failed " her recent growth hormone stimulation test, and the endo would like to start her on a trial of growth hormone injections to see how they would effect 's growth. She is 6 1/2 years old and is 38 inches tall and weighs 32.5 lbs. She was diagnosed with ASD, VSD, PDA, Pulmonary Stenosis, and hypoplastic right ventricle at birth. She had the Glenn procedure at 5 1/2 months and a Fontan procedure done when she was 2 1/2. Other than a slow heart rate, her cardiac status has been stable the past four years. The endo treats no other kids that have both complex heart disease and growth hormone difficiency, so she does not know how the injections might impact 's cardiac status. She said that would need to be seen more frequently by both the endo and cardiologist. Those of you with kids on hormone injections-what questions should I ask before we undertake this challenge? Any insights you have would be greatly appreciated! Thanks in advance : ) W. Wife to Ken and Mom to (15), Alyssa (10), and (6-CHaRgE) Woodbury, MN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2000 Report Share Posted August 28, 2000 , My son Tim has been on GH for over 1 1/2 years with excellent results. He was also born with very complex heart issues - Truncus Arteriosis, Interrupted Aortic Arch, ASD's, VSD's and PDA. Two surgeries as an infant and one at age 2 1/2. (Most likely another one coming soon) As far as we understand, there are no special considerations for Tim's heart in regards to the growth hormone. Perhaps no more so than say a " typical " child without any heart problems may have. The GH is something his body was lacking and has been " replaced " with a daily injection. He was seen by his Endo for the routine every -three- months check-up and just recently " graduated " to every 6 months. Our appointments were no greater in number than any other child receiving the injections. Same for his cardiology appointments. Have your cardiologist and Endo docs contact one another and discuss what (if any) impact being on the GH would present for your daughter. That's the best way to go about it. You'll be at ease and the Endo doc will too. Donna mom to Tim(14), (13), (10) and (6) Mansfield, NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2000 Report Share Posted August 28, 2000 Hi ! had a large VSD and ASD repaired at 3 weeks of age. He failed all of his GH testing and was started on growth hormone the end of October, 1999. He has had an excellent respons and has grown very well (5 inches in on year with only 10 months on GH). His feet and kidneys had not grown for the previous 2 years and he had been off the growth charts for years. They think that he will be back on the growth charts at his next appointment in October, his feet have grown several sizes (lost track), and his kidneys were back to normal size in 5 months. He sees cardiology next week so we will see if they wish to follow him more closely. So far, has been followed like any other kid on GH-every 3 months for the first year by endo. He wears DAFO splints and of course he outgrew the previous set once he was on growth hormone, but they made a pair extra long to accomodate growth and wearing thick socks to start with so that we can switch to thin ones as he grows. He is now about as tall as and weighs around 37 pounds. Cheryl, , (7), (5, CHaRGE) MI >>> MNWojciks@... 08/26/00 11:08PM >>> Hello everyone! I know that there are a few kids out there that are on growth hormone, but I am wondering if any of them also have complex heart disease. " failed " her recent growth hormone stimulation test, and the endo would like to start her on a trial of growth hormone injections to see how they would effect 's growth. She is 6 1/2 years old and is 38 inches tall and weighs 32.5 lbs. She was diagnosed with ASD, VSD, PDA, Pulmonary Stenosis, and hypoplastic right ventricle at birth. She had the Glenn procedure at 5 1/2 months and a Fontan procedure done when she was 2 1/2. Other than a slow heart rate, her cardiac status has been stable the past four years. The endo treats no other kids that have both complex heart disease and growth hormone difficiency, so she does not know how the injections might impact 's cardiac status. She said that would need to be seen more frequently by both the endo and cardiologist. Those of you with kids on hormone injections-what questions should I ask before we undertake this challenge? Any insights you have would be greatly appreciated! Thanks in advance : ) W. Wife to Ken and Mom to (15), Alyssa (10), and (6-CHaRgE) Woodbury, MN " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2000 Report Share Posted October 2, 2000 Hi! The device is called Inject-Ease and is made by Genentech. receives Humatrope. There are two different companies and the hormone is identical, but the diluents are not. I think that we were told that the other diluent is sterile water with benzyl alcohol, but that it would not be worth the insurance hassle to switch and better to get the diluent separately. We are still happy to get the injections accomplished as quickly as possible because he does not like them! 's feet have grown from size 5 (toddler) to size 9 (that is 8 shoe sizes!) after 9 months of growth hormone and he grew from about 33 to 39 ½ inches. Cheryl, , (7), (5, ChaRGE) MI >>> MNWojciks@... 09/30/00 11:43PM >>> Cheryl, Thanks for sharing your experiences with . We would like to keep the shots as painless as possible for . I will call Em's endo on Monday and discuss the options with her. The nurse in the endo's office set this up with the pharmacy without even explaining all the options to us. I can always count on " expert advice " from all the " experts " on the lists! Thank you! W. wife to Ken and mom to (15), Alyssa (10), and (6-CHaRgE) Woodbury, MN " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
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