Hello Everyone! It's been a while since we heard from anyone out there! I hope that means that everyone's family is doing well. I wanted to drop a line and...
Angela Strong
jaade1@xxxxxx.xxxx
Jun 11, 1999 7:04 pm
79
Hi Everyone Hope your summer is going great!! Out here it went from 65 degrees to 95 degrees in one week. Quite the temp change. It's been nice for my...
bsashmead@xxx.xxx
Jun 21, 1999 10:20 pm
80
Hi, I'm Becky. I will be calling for an appt. for my twin girls, age 11 this week. We have seen 2 endocrinologists who have done some tests and declared them...
bfreeburg@xxxx.xxxxxx...
Jun 21, 1999 10:53 pm
81
Bsashmead@xxx.xxx
Jun 28, 1999 8:32 pm
82
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:...
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