HI everyone The summer must be going well for everyone. I can't believe school is around the corner. We have a new dr at our clinic. He shared somwthings...
bsashmead@...
Aug 17, 1999 10:14 pm
83
I found a place online where you can order meds and it is comparable to what I pay with insurance..not for the florinef..just for the cortef tablets. go to ...
Jim & Debbi Watson
jrwatson@xxxxxxxxx.xxxx
Aug 17, 1999 11:15 pm
84
Hi All! Well it's been an incredible summer for us! But first let me thank Tami for watching out for the list while I was gone! I heard we had a new member...
Angela Strong
jaade1@xxxxxxx.xxxx
Aug 30, 1999 11:45 pm
85
I would like to know of a good doctor to take my girls to. I am considering getting an appointment with Dr. Maria New in New York. I live near Atlanta and...
bfreeburg@xxxx.xxxxxx...
Sep 6, 1999 9:03 pm
86
Hi Becky- The people that I new that lived in Atlanta dealt with the doctors at Scottish Rite. Have you tried them or are they the ones you are not happy ...
Jim & Debbi Watson
jrwatson@xxxxxxxxx.xxxx
Sep 6, 1999 9:52 pm
87
Hi Becky, Well if you're going that far, I would tell you to go to Boston and see Dr. Aleene Ricker. She was in NC when I saw her and is supposedly one of the...
Angela Strong
jaade1@xxxxxxx.xxxx
Sep 6, 1999 9:46 pm
88
... hearing from you....
Angela Strong
jaade1@xxxxxxx.xxxx
Sep 17, 1999 8:49 pm
89
Hi All! Well since we haven't heard from anyone in a while, I'm assuming that everyone is healthy and happy. My girls had their 6 month check-up yesterday....
Angela Strong
jaade1@xxxxxxx.xxxx
Oct 30, 1999 5:10 pm
90
Hi, I am also experiencing girls and puberty. My twin girls turned 12 Thursday. I survived the party last night. We are dealing with possible growth hormone...
Becky
bfreeburg@xxxx.xxxxxx...
Oct 30, 1999 5:32 pm
91
Hi Becky! Not that I'm glad you're having it rough with puberty, but it's nice to know I'm not alone out here! I don't think we've had that particular test...
Angela Strong
jaade1@xxxxxxx.xxxx
Oct 30, 1999 9:04 pm
92
The clonidine stimulation test reminds me of the one for CAH when a baseline blood is drawn, then medicine given and then blood drawn after 30 minutes, 1 hour,...
Becky
bfreeburg@xxxx.xxxxxx...
Oct 31, 1999 1:43 am
93
Sorry to hear your girls have the stretch marks gene, too! I think it is just one of those things. My mom is a teeny thing who seldom has yo-yo weight...
Jim & Debbi Watson
jrwatson@xxxxxx.xxxx
Oct 31, 1999 11:22 pm
94
Hi Debbi! I've never had stretch marks (which is remarkable considering my size) and it just caught me off guard. Kind of like tonight when I put make-up on...
Angela Strong
jaade1@xxxxxxx.xxxx
Nov 1, 1999 1:58 am
95
Hi Becky! The twins are 10 years old going on 25! Young enough to not like boys still! Phewww! Man do I dread that whole part! LOL! Do you have other...
Angela Strong
jaade1@xxxxxxx.xxxx
Nov 1, 1999 2:11 am
96
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...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
