At 35 I was told I had cataracts but they weren't that bad then, now 10 years later, I have what they call(typical steriod cataracts).I been using reading...
23
preston
preston@...
Aug 2, 2000 6:24 am
My name is Roberta - I have two children with CAH (boys). My daughter (second child) died at age 2 and 1/2 years old. She had a fever and the doctor on call...
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Debbie Doyle
doyle@...
Aug 3, 2000 3:35 am
Dear Roberta: How horrible. I can't even image. Sometimes this board scares me when I read of those sort of things, but I try to use it also as a wake-up...
25
Breezy6692@...
Aug 3, 2000 3:36 am
Roberta, I'm so sorry for the great loss of your daughter you are suffering. Liquid Cortif was not available back in the 50's and thank God it wasn't. From all...
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preston
preston@...
Aug 4, 2000 4:50 am
Did anyone read about the experimental cure for diabetics. They transplant eyelet cells and then the diabetic does not need medication anymore. I wonder if...
27
Anna
almiller@...
Aug 4, 2000 4:57 am
Hello again, and Thank Your for your Kind words in Reply to my post to you... Im writting you again to ask you to please reconsider your decision to stop...
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Debbie Doyle
doyle@...
Aug 4, 2000 4:42 pm
I agree totally. It would be taking another step back. Debbie ... From: Anna <almiller@...> To: <adrenal_hyperplasia@egroups.com> Sent: Thursday,...
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preston
preston@...
Aug 5, 2000 8:30 pm
Anna and Debbie I am not sure what happened, but I your thoughts are very true. On the CAH board (Danny's Carlton started it). I have wrote something and it...
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Jenny
jenannlynn@...
Oct 30, 2000 6:01 am
My little, 8 mo. old baby girl has just been diagnosed with CAH-- after several months of saying to the doctors "something is not right" and the majority of...
31
Robyn
carolecathlynann@...
Oct 31, 2000 10:34 pm
Hello everyone. You are a God send to me. Up until a few months ago I never had a computer. So I had no way of finding any support groups. I live here in...
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preston
preston@...
Oct 31, 2000 10:37 pm
No vomiting is not an reaction to the cortef. She should go into the hospital right away until she is no longer vomiting. Because of dehydration and a...
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Debbie Doyle
doyle@...
Oct 31, 2000 10:38 pm
Jenny, I also have a little girl born with CAH, however, she was diagnosed at birth and started her meds at day 4 of her precious life. I have never ...
34
jenannlynn@...
Nov 1, 2000 1:42 am
Debbie, I SO appreciated your email. Yes, we feel very fortunate that our little girl has done so well considering everything. The doctor's can't believe it ...
35
jenannlynn@...
Nov 1, 2000 9:10 pm
Thanks Roberta for the information. Yesterday was a much better day, and we were able to keep all of the medication down. I think she did not like the ...
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Debbie Doyle
doyle@...
Nov 2, 2000 6:23 am
Exuse my ignorance, but what is "pseudo" and your DNA karotype is 46xx, what does all that mean? No child or person with CAH should ever feel like a "freak"....
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carolecathlynann@...
Nov 2, 2000 9:50 pm
My name is Carole in regards to your question what pseudo means and 46XX. I am a Nonadrenal female pseudohermaphrodite. One of the causes is CAH. I am 58...
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preston
preston@...
Nov 3, 2000 2:44 pm
jenny - I am glad that she is better. How creative of you to put it in her food and her not know it. Mine would know because they watched everything I do (even...
39
jenannlynn@...
Nov 4, 2000 5:54 am
Thank you, thank you, thank you for those websites! They are exactly what I have been searching for, but no search engine gave me them! :) I have a few ...
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Georgianna Copeland
georgiannac@...
Nov 4, 2000 5:55 am
Dear Jenny, That is a good idea...I like that idea. What is the medication that she is on called? I am on dexamethasine (decadron) for mine nightly and they...
41
preston
preston@...
Nov 4, 2000 5:57 am
Carole - I am sorry about your childhood. Were you born with CAH - classical salt wasting CAH? Did you every have an adrenal crisis? Where were you born?...
42
carolecathlynann@...
Nov 5, 2000 8:23 am
Hello Preston this is Carole how are you. As to your questions yes I was born with (CAH) and as for treatment I had a very sick childhood. Like I said in my...
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preston
preston@...
Nov 5, 2000 8:23 am
http://congenitaladrenalhyperplasia.org/mb/page1.htm Jenny - Here is another web site for CAH - this one is a message board for parents for CAH children. Danny...
44
preston
preston@...
Nov 5, 2000 8:24 am
When to give the injection of solu-cortef or triple the cortef ? My ped endo said 101 fever but 100 fever is and can be just as bad. For one thing the...
45
shoppathemaster@...
Nov 5, 2000 8:24 am
i am a 37 year old who was diagnosed with CAH in 1990. does anyone know the statistics of how many people actually suffer from this? i know it is hereditary,...
46
jenannlynn@...
Nov 6, 2000 7:09 am
In a message dated 11/4/2000 12:56:28 AM US Eastern Standard Time, georgiannac@... writes: << What is the medication that she is on called? I am on...
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jenannlynn@...
Nov 6, 2000 7:09 am
In a message dated 11/5/2000 3:26:54 AM US Eastern Standard Time, preston@... writes: <<...
48
jenannlynn@...
Nov 6, 2000 7:09 am
In a message dated 11/5/2000 3:26:54 AM US Eastern Standard Time, preston@... writes: << Print out this pamplet from the National Institute of...
49
Jeffrey Lawson
Laugesen@...
Nov 6, 2000 7:09 am
I am the father of a son, who will be 17 in two weeks. He has CAH and is a salt-waster. I well remember putting my son into the NICU in a New Orleans...
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Debbie Doyle
doyle@...
Nov 7, 2000 7:40 am
Its nice to hear a happy story. I am a mother of a 6 yr. old daughter who was born and diagnosed at birth w/CAH. She has and continues to do beautifully...
