thank you....is there a number i can call to get more information? yes my son
is on the lupron daily injections. he is also on cortef tabs. he is not a
salt waster but eats large amounts of salt. thank you again for keeping us
informed.
Hello Everyone, My name is Selena. I have a 4 y/o son who has CAH. We are currently with NIH's experimental protocol for his treatment. We live in ...
Selena Vincent
batmanv@...
Feb 27, 2000 8:16 pm
Hi Selena- Just happened to be downloading a looooong program when your e-mail came in. I also have a 4 yr. old son with salt-wasting CAH. I also have a 6 yr....
Jim & Debbi Watson
jrwatson@...
Feb 27, 2000 8:22 pm
Well, Debbi, There's only 1 ped endo in our state and she refused o care for our son because she doesn't agree with NIH. So, our regular ped has agreed to...
Bruce Vincent
batmanv@...
Feb 27, 2000 8:31 pm
In truth, we see our ped endo for work-ups and she analyzes our blood work results, etc. We saw her a lot when Kyle was a baby and has trickled to a more...
Jim & Debbi Watson
jrwatson@...
Feb 27, 2000 8:33 pm
Selena, It's nice to have you join us! I have 11 yr.old twin girls with CAH and an unaffected 8 yr. old boy. I am curious...what is NIH? I don't believe...
Angela Strong
jaade1@...
Feb 27, 2000 8:44 pm
Debbi, The ped endo didn't agree with my son being on Florinef. HE's very dificult to control, his last 17-OHP's were 11,000. He was diagnosed 1 yr ago. ...
Bruce Vincent
batmanv@...
Feb 27, 2000 8:54 pm
I am assuming that since the florinef is optional, your son must be non-salt wasting. I have heard of many other non-salt wasting people with CAH taking ...
Jim & Debbi Watson
jrwatson@...
Feb 27, 2000 8:56 pm
hi everyone....especially selena...we are glad you are here. i too would like to know more about the NIH study....do parents have a say of what drug/dosage...
DTomb78532@...
Feb 27, 2000 11:13 pm
Angi, NIH is a research hospital and there are working on CAH right now. They will follow my son until he is 18. He was chosen for the experimental drugs....
Bruce Vincent
batmanv@...
Feb 28, 2000 2:11 am
Debbi, The study is going good. They are so thorough, it's unbelievable. Selena ... From: Jim & Debbi Watson <jrwatson@...> To:...
Bruce Vincent
batmanv@...
Feb 28, 2000 2:12 am
Diane, Yes your son could still get in. They will give him the drug needed for his cpp (Is it Lupron???). They are very open about what they do and why and ...
Bruce Vincent
batmanv@...
Feb 28, 2000 2:17 am
DTomb78532@...
Feb 28, 2000 12:47 pm
selena, thank you....is there a number i can call to get more information? yes my son is on the lupron daily injections. he is also on cortef tabs. he is not...
DTomb78532@...
Feb 28, 2000 12:50 pm
Well, I have the nurse practitioner's phone number. She will be able to talk with you. Her number is (301) 435-3391. My son is on Cortef and Florinef and 2...
Bruce Vincent
batmanv@...
Feb 28, 2000 2:19 pm
selena, thank you for the number. i will let you know what happens. if you don't mind me asking what are the 2 experimental drugs and what are they used...
DTomb78532@...
Feb 29, 2000 12:09 am
One of the drugs is Flutamide and one is testactalone. One of these drugs is used to treat men with prostate cancer. The other is an estrogen blocker. You...
Bruce Vincent
batmanv@...
Feb 29, 2000 12:40 am
selena, that does sound good. i called the number and left a message. i called this morning but kept getting the wrong phone numbers!? is your son...
DTomb78532@...
Feb 29, 2000 2:06 am
Diane, I absolutely *hate* the Cortef suspension!!! NIH was using it, but now we're on the tablets. My son is not suppressed yet, we're working on it though....
Bruce Vincent
batmanv@...
Feb 29, 2000 2:34 am
selena, thank oyu for the info.......again! I will keep you informed. i pray soon your son will be suppressed. my son just had a growing spurt and gained ...
DTomb78532@...
Feb 29, 2000 12:55 pm
YOu're welcome Diane :o) ... From: <DTomb78532@...> To: <CAHsupport@onelist.com> Sent: Tuesday, February 29, 2000 6:55 AM Subject: Re: [CAHsupport]...
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