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...
Angela Strong
jaade1@...
Mar 23, 2001 6:31 pm
151
Thank you for responding. It feels really well to know that there are others that are or have been going through the same thing that we are. The more...
Jenny Humphrey
JHmphr3@...
Mar 24, 2001 2:02 pm
152
Hello. This is Jenny H. I just wondered if any of you had any tips on getting your baby to take the sodium chloride supplement. Hunter takes both her steriod...
Jenny Humphrey
JHmphr3@...
Mar 24, 2001 2:24 pm
153
<A HREF="http://www.congenitaladrenalhyperplasia.org/">Congenital Adrenal Hyperplasia dot Org -- A Family Education and Support Networ</A> <A...
jenannlynn@...
Mar 24, 2001 4:01 pm
154
I don't know the link to the book that is listed but here is a good link to a pamphlet about how to give the solu-cortef injection for fever, vomiting, injury...
preston
preston@...
Mar 25, 2001 1:04 am
155
I can not imagine the pain of losing a child. My heart goes out to you. I was shown the injections at the hospital and also was told to triple her prednisolone...
JHmphr3@...
Mar 25, 2001 1:35 am
156
... Endocrinology ... available ... Found that address I was talking about. Several of us have this book and it's really a good one! Angi...
Angi Strong
jaade1@...
Mar 26, 2001 2:56 pm
157
Thank you very much for that site. I just read the book and it is a very good one. I will probably give this to family members wanting to learn more. Thanks...
JHmphr3@...
Mar 26, 2001 3:40 pm
158
I am new to this site. I want to meet people from Texas. We are moving to the Dallas area soon. My daughter is 7 and has salt- wasting CAH....
nackenheil@...
Mar 27, 2001 5:52 pm
159
Hello. Well I'm not in Dallas, but we used to live near there in Irving. My twin girls also have the salt-wasting CAH and we went to the Children's Hospital...
Angela Strong
jaade1@...
Mar 27, 2001 6:02 pm
160
Since you mentioned that you give your daughter a bottle, why not give her the amount she needs in the formula? That is what we did. You will find as she...
Jim & Debbi Watson
jrwatson@...
Mar 29, 2001 5:56 pm
161
I recommend this manual (the chapters on CAH, adrenal insufficiency)from The Pediatric Endocrinology Nursing Society (PENS) is a voluntary non-profit specialty...
preston
preston@...
Mar 30, 2001 2:37 am
162
Hello! I am still looking for anyone who lives in the North Dallas area. I am new to this site and am hoping to meet some new people. My 7 yr old has salt...
nackenheil@...
Mar 31, 2001 9:54 pm
163
I just used table salt. 1/8 tsp of salt in each bottle (8 oz) - my first son with CAH. The sodium chloride is used for breast fed babies. And it is harder to...
preston
preston@...
Apr 1, 2001 12:44 am
164
Right now she is taking 2.7 ml three times a day. It seems like it would be alot easier if I could give it in a bottle. She is bottle fed too. She has a check...
JHmphr3@...
Apr 1, 2001 1:19 am
165
I hope that everyone is feeling better and the baby doesn't get sick. The doctor should have told you about solu-cortef. It is an injection of cortef for a...
preston
preston@...
Apr 3, 2001 1:21 am
166
Yes we have been shown the injections and have some here. But we do not have cortef it is Hydrocortisone Sodium Succinate. She is doing great so far. She had...
JHmphr3@...
Apr 3, 2001 1:54 am
167
FYI- Cortef comes in 5 mg tablets. They can be easily cut in half and administered like the florinef. In case you have problems with the prednisolone ( I...
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