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
97
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
98
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
99
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
100
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
101
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
102
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
103
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
104
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
105
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
106
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
107
DTomb78532@...
Feb 28, 2000 12:47 pm
108
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
109
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
110
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
111
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
112
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
113
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
114
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
115
YOu're welcome Diane :o) ... From: <DTomb78532@...> To: <CAHsupport@onelist.com> Sent: Tuesday, February 29, 2000 6:55 AM Subject: Re: [CAHsupport]...
Bruce Vincent
batmanv@...
Feb 29, 2000 9:20 pm
116
Happy 4th of July to everyone!!! Roberta Preston preston@......
preston
preston@...
Jul 5, 2000 12:45 am
117
Has everyone seen the John Hopkins web site? http://pedsendo.med.cornell.edu/cah/index.html Roberta Preston preston@......
preston
preston@...
Jul 6, 2000 3:25 am
118
Just in case some of you do not check the CAH message board, I thought I would pass on the attachment of the letter, issued by Upjohn-Pharmacia, regarding...
Jim & Debbi Watson
jrwatson@...
Jul 27, 2000 7:47 pm
119
Thanks for passing this along! We use the pills which I find much more effective, less messy, and easier to take along on trips but the girls are older too....
Angela Strong
jaade1@...
Jul 28, 2000 11:54 am
120
No problem!!! Go to http://congenitaladrenalhyperplasia.org/cgi-bin/cahmb/cah.cgi It is a great forum and we get alot of feedback from each other. -Debbi ... ...
Jim & Debbi Watson
jrwatson@...
Jul 29, 2000 12:00 am
121
Hi All! Well this is going to sound terribly naive, but I watched a television program last night "Is it a boy or is it a girl?" and they talked about some...
Angela Strong
jaade1@...
Aug 7, 2000 3:31 pm
122
Angi, I have late-onset CAH which wasn't diagnosed until I was an adult. Looking back, I realize that I did have some feelings of confusion during the time...
Becky
bfreeburg@...
Aug 8, 2000 12:22 am
123
Thanks Becky! I know some of the issues we face are so private for most people....that's probably why I never heard of some of these things. I think I'm just...
Angela Strong
jaade1@...
Aug 8, 2000 3:10 am
124
Just getting back into town and getting caught up on my mail. I saw this program in the spring and found it to be very one-sided. It was clear that they were...
Jim & Debbi Watson
jrwatson@...
Aug 12, 2000 5:53 am
125
I didn't see the TV show, but I can image! Too bad they didn't do one about the cortef oral liquid for infants and its recall. My stupid doctor thought that...
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