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...
preston
preston@...
Aug 12, 2000 10:32 pm
126
I forget to say that Adam was on the liquid cortef for 11 months and the entire time his blood levels (OH17) were elevated and he was losing weight and not...
preston
preston@...
Aug 13, 2000 5:22 pm
127
Thanks Debbi! I believe the only reason they even mentioned CAH was because of the ambiguous genitalia at birth. They did interview one couple who was going...
Angela Strong
jaade1@...
Aug 14, 2000 12:26 am
128
Oh it's been soooo long since we had the liquid cortef, but I believe the girls were almost 3 when we switched to the pills (about 8 years ago!). I HATED that...
Angela Strong
jaade1@...
Aug 14, 2000 12:30 am
129
Clear DayI was on the waiting list for Adam to attend the daycare at my work. They called me and said he could attend. I was so happy to have him in a safer...
preston
preston@...
Sep 8, 2000 10:00 am
130
Clear DayHi Roberta! Well I read through your packet and I don't see any reason for them to be freaking out. The only thing that would affect them really is...
Angela Strong
jaade1@...
Sep 8, 2000 1:20 pm
131
Here is a web site from Australia with a book to download and print about CAH. Roberta ... From: "Angela Strong" <jaade1@...> To: "preston"...
preston
preston@...
Sep 19, 2000 1:46 am
132
I also gave my son's daycare a print out of this... hopefully they will never have to use it. http://www.med.monash.edu.au/paediatrics/resources/shock.html ...
preston
preston@...
Sep 20, 2000 2:18 am
133
I'm a new member and I have some questions about CAH. My son has the severe salt wasting type, but is doing fairly well. I had some questions about myself...
kelli palmyra
shinning55@...
Nov 14, 2000 11:53 pm
134
Hi Kelli My son is 5 yrs old and also has the salt-wasting type. the first year was rough, but has been so much easier to manage now. Finding other folks to ...
Jim & Debbi Watson
jrwatson@...
Nov 15, 2000 11:14 pm
135
Hi - my name is Roberta Preston. I have two sons with CAH - Stephen age 7; and Adam age 2 years old. I live in Alexandria, Virginia. I had never heard of CAH...
preston
preston@...
Nov 17, 2000 3:40 am
136
Hi, my name is Shelly Stockton. I have a 9 year old daughter with the salt wasting cah,when we first found out there was really no one to talk to other than...
cabowaboshell@...
Nov 17, 2000 4:28 am
137
Kelli, I have twin girls, also with the severe salt wasting type. They are 11 1/2 and are doing very well. For my second pregnancy, we went through the CVS...
Angela Strong
jaade1@...
Nov 19, 2000 11:27 pm
138
Hi! I just wanted to introduce myself since I just joined this list. I am a stay at home mother of two beautiful and wonderful children, Zach--who is 3--and...
jenannlynn@...
Feb 21, 2001 5:06 pm
139
HI, Welcome to the group. I'm Nicole, and I have 3 children ages 5, 4, and 2. My 5 year old son and my 4 year old daughter both have salt-wasting CAH but my...
dennis rice
mosawe@...
Feb 21, 2001 6:22 pm
140
My name is Eileen Wells. I just joined egroups. I have a 9 year old daughter with salt wasting CAH. Amanda has genitoplasty at 8 months of age. She also just...
sistergldnhair66@...
Feb 22, 2001 2:49 am
141
my son is eight weeks and is being treated for hyperplasia except we are not sure if it is hyper or hypo or something else. I was just looking for more...
adele543@...
Feb 25, 2001 2:41 am
142
Adele, I remember the stress when the twins were first born and diagnosed, so I completely understand what you are going through! Since you're not sure of his...
Angela Strong
jaade1@...
Feb 25, 2001 2:58 am
143
I strongly recommend reading the pamphlet as well. They talk alot more about glucose than our doctors do...not sure why. All the information is hard to take...
Jim & Debbi Watson
jrwatson@...
Feb 25, 2001 4:52 pm
144
http://www.medhelp.org/nadf/ Here is a web site about adrenal disorders. Our first child almost died because no one knew he had CAH. He was 5 weeks old and...
preston
preston@...
Feb 25, 2001 4:52 pm
145
thank you very much! that page was very helpful! I am still slightly confused. They did a CT scan of my sons adrenal gland and it wasnt enlarged..it wasnt to ...
adele burich
adele543@...
Feb 25, 2001 5:39 pm
146
and the height is okay because his father ... Is your son seeing a pediatric endocrinologist? As long as he takes his meds daily, his height should be well...
Kathy Partridge
atelierk@...
Feb 25, 2001 5:54 pm
147
Wow! My girls are 12 and I have NEVER given them that shot. We've had fevers and all sorts of things happen (been hospitalized with severe dehydration a...
Angela Strong
jaade1@...
Feb 25, 2001 8:48 pm
148
Another thing.... infrant vaccinations can fever and again a fever can kill your baby (ADRENAL SHOCK). I waited until my son was over a year old so because he...
preston
preston@...
Feb 25, 2001 11:23 pm
149
Hello everyone. My name is Jenny and I just had my second daughter on March 16th. The doctors initally told us that she was a boy. Shortly afterwards they told...
Jenny Humphrey
JHmphr3@...
Mar 23, 2001 4:17 pm
150
Hi Jenny! Welcome to the group. We're a quiet bunch, but questions never go unanswered. My twin girls were diagnosed the day after their birth. They wouldn't...
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