Re: Growth Question Growth hormones

[Guest guest]

Hi Debbie, Doris, and Chip,

Growth hormones were recommended however, going throught the kidney surgeries etc. I could only handle one thing at a time. Kim's growths as well as improvements have always seemed to come in spirts. The big spirt came after the second ureter reimplant, we don't know why. She just started gaining weight and she is a healthy eater. I always had a problem with the growth hormones as my family is very small. I guess I decided to let nature take it's course. I sure am glad I did now because at l40 and 4' I have no idea what the hormones may have done. After thyroid testing that showed all was normal the Drs concluded puberty and the natural hormone process is taking place. She does seem to be slimming down a bit. Well all for now. lydiarivers@...

Lydia mom to Kim,Alia, , and

Deborah wrote:

Hi Everyone

i have been reading the group for quite some time and am blown away by the collective knowledge. It is fantastic!

Anyhow, here is my situation. Devon is 11. He took halotestin for about a year when he was 5. His geneticist wanted him to continue saying that his bones were still at about a 4 yr old range. His endochronologist wanted him to stop talking them stating his bones measured about a 7 yr old range. Devon's growth never had a huge increase. With two professionals that I respected disagreeing, I felt it was safer to stop the halotestin. I didn't want to stunt his growth mucking around with it. It was a difficult decision but I did what I felt was right at the time.

Now the endo wants to start growth hormones as Devon is 11. He is roughly the size of an 8 yr old.

I am wondering if I should let nature take its course and not give him the growth hormones. It has been my experiance with Charge that Devon grows out of some problems.. ex: grade IV, grade V renal reflux, NG tube.. etc etc etc. I mean maybe doing nothing he will just start growing on his own? Or maybe we should start the hormones now as he is signifigantly smaller than his peer group.

I have spoken to the endo and he said its my call. What is the groups experiance with their kids and growth hormones? The endo feels Devon's hormone levels are good but that he doesn't experiance the spikes in growth that other kids do when they have a growth spurt. Devon is slow and steady around the -5 percentile for his age. His peer group is one year younger than him and still tower over him.

Any info would be greatly appreciated.

Debbie

(mom of Jillian 12, Devon Charger 11, Sam 8, 6, Kaitlyn 6)For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Debbie, I have asked s omany endos etc about this as my (13) is really

small too. They (and his internist) agree that as he is not growht hormone

deficient on tests, including a stimulation test where they tested 3x under

stimulating meds, that giving him growth hormones wouldn't do anything

anyway. And the risk is that they will cause the bone plates to fuse before

they are actually finished growing on their own, which permanently stops

growth of the bones. So we have elected to wait and see. If, however, his

friends are all going through puberty and he isn't, then testosterone might

be given. Hope this helps, Barbra M

[Guest guest]

Thanks for the responses. I will let you know what we decide in terms of

Devon's growth. (probably in August). His levels for growth hormone are

good. The dr thinks maybe he doesn't get the spikes most kids get with

growth spurts but I guess sure and steady wins the race.

I am leaning more towards just letting Devon grow at his own pace and not

force things.

Debbie (Jill 12, Devon 11, Sam 8, 6, Kaitlyn 6)

Re: Growth Question Growth hormones

>Debbie, I have asked s omany endos etc about this as my (13) is really

>small too. They (and his internist) agree that as he is not growht hormone

>deficient on tests, including a stimulation test where they tested 3x under

>stimulating meds, that giving him growth hormones wouldn't do anything

>anyway. And the risk is that they will cause the bone plates to fuse

before

>they are actually finished growing on their own, which permanently stops

>growth of the bones. So we have elected to wait and see. If, however, his

>friends are all going through puberty and he isn't, then testosterone might

>be given. Hope this helps, Barbra M

>

>

>

>For information about the CHARGE Syndrome

>Foundation or to become a member please

>contact marion@... or visit

>the CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org

>

[Guest guest]

Hi Debbie, Doris, and Chip,

Growth hormones were recommended however, going throught the kidney surgeries etc. I could only handle one thing at a time. Kim's growths as well as improvements have always seemed to come in spirts. The big spirt came after the second ureter reimplant, we don't know why. She just started gaining weight and she is a healthy eater. I always had a problem with the growth hormones as my family is very small. I guess I decided to let nature take it's course. I sure am glad I did now because at l40 and 4' I have no idea what the hormones may have done. After thyroid testing that showed all was normal the Drs concluded puberty and the natural hormone process is taking place. She does seem to be slimming down a bit. Well all for now. lydiarivers@...

Lydia mom to Kim,Alia, , and

Deborah wrote:

Hi Everyone

i have been reading the group for quite some time and am blown away by the collective knowledge. It is fantastic!

Anyhow, here is my situation. Devon is 11. He took halotestin for about a year when he was 5. His geneticist wanted him to continue saying that his bones were still at about a 4 yr old range. His endochronologist wanted him to stop talking them stating his bones measured about a 7 yr old range. Devon's growth never had a huge increase. With two professionals that I respected disagreeing, I felt it was safer to stop the halotestin. I didn't want to stunt his growth mucking around with it. It was a difficult decision but I did what I felt was right at the time.

Now the endo wants to start growth hormones as Devon is 11. He is roughly the size of an 8 yr old.

I am wondering if I should let nature take its course and not give him the growth hormones. It has been my experiance with Charge that Devon grows out of some problems.. ex: grade IV, grade V renal reflux, NG tube.. etc etc etc. I mean maybe doing nothing he will just start growing on his own? Or maybe we should start the hormones now as he is signifigantly smaller than his peer group.

I have spoken to the endo and he said its my call. What is the groups experiance with their kids and growth hormones? The endo feels Devon's hormone levels are good but that he doesn't experiance the spikes in growth that other kids do when they have a growth spurt. Devon is slow and steady around the -5 percentile for his age. His peer group is one year younger than him and still tower over him.

Any info would be greatly appreciated.

Debbie

(mom of Jillian 12, Devon Charger 11, Sam 8, 6, Kaitlyn 6)For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Hi,

I came across an article when searching PubMed. The abstract states that

their findings indicate that chronic hypoxemia (low o2 sats) has a direct or

indirect effect to reduce serum IGF-1 concentrations and this may be a cause

of the increased growth failure in patients with cyanotic congenital heart

disease.

Interesting as Jack's IGF-1 levels are very low and he also has chronic

hypoxemia.

The article is:

J Pediatr Endocrinol Metab 2000 Apr;13

(4):431-6

Chronic hypoxemia leads to reduced serum IGF-1 levels in cyanotic congenital

heart disease.

PMID: 10776998, UI: 20236756

Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE

Dumfries,Scotland