I have a one year old son who was recently diagnosed with Adrenal Insufficiency after a low glucose crisis. We do not have a differentiated diagnosis - autoimmune and genetic tests (DAX-1) have come back negative. Any other parents of young children out there who can share their experiences with managing this condition?
My 8 year old son was just diagnosed on 12/17/07 with Addisons, he’s taking hydrocortisone and fludrocortisone daily. So far so good, we have seen huge differences in his energy level and he would have really bad stomach pains and those have also gone away.
My 4yr son was diagnosed with Addison in Sep’07. He is on hydrocortisone and there is visible difference in his energy levels. But do you have any information on the medical research going in this field or has medical science accepted this as incurable disease?
andy
I am not aware of any research - email me at lzbcs127@verizon.net, if you would like to correspond any further.
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There is research happening but not with the high dollar sponsors and wel=
l
known spokespeople. If you look here http://www.nadf.us/news/index.htm
scroll down a bit you can see a link to the research efforts.=0D
=0D
I guess no one interesting has been diagnosed with Addison’s yet besides =
JFK
who denied it because of the TB references. Cancer is a huge problem in =
the
world but hormone disorders are rampant and folks do not die from
hypocortisolism (low cortisol) they die from natural causes. (no joke)=0D
=0D
Renee=0D
=0D
-------Original Message-------=0D
=0D
From: lzmom=0D
Date: 2/6/2008 3:28:02 PM=0D
To: greyhoundlover@gmail.com=0D
Subject: Re: [addisons] Children with Addison’s=0D
=0D
I was a child with addison’s I was dx at age 18 months old.I am now 38yrs It may not be curable but it definately is manageable. if anyone wants to chat . I am no expert just a pientient i would love to help where I can.
reach me at qpdoll3@hotmail.com write addisons in subject or I might not get it. hope I can help kelly
Forgive me I should have been more clear. What I was trying to say is/was that Addison’s goes undiagnosed for many and claims more lives than it should. It is certainly a manageable disease. I have read message about people like Kelly that have lived 30 or more years.
I am guessing when I posted prior I was angry that a person lost their life in their 20s because of medical professionals mistakes and/or ignorance. (forgot about the need for steroids which happens too frequently IMHO) I had a problem where I got into serious trouble for self medicating because I had gone close to 30 hours without hydrocortisone. I injected myself with my rescue shot in front of a nurse and handed her the vial but I wasn’t willing to be another statistic.
The young person I mentioned above passed away from “natural causes” because she could not maintain a blood pressure. (a classic hypocortisolism issue)
My apologies if I offended or scared anyone.
My son was diagnosed at the age of 6 with Addison’s Disease and Hypoparathyroidism. After 3 days of nausea/vomiting (only once a day)/lack of appetite/stomach pains/very thirsty, dr said it must be the stomach bug. One morning he was unresponsive and foaming from mouth, couldn’t speak just moaning, eyes in a stare we rushed him to emergency room. First drs thought he was just dehydrated. Turns out he had an Addisonian’s Crisis. Sugar and salt dropped to extremely low levels and potassium shot up high. After being life flighted to children’s hospital he was in PICU for 4 days when they gave diagnosis. Dr said if he was not treated he would have went into coma and died. Also had the risk of having seizures but did not as far as we know. It has been a year now and seem to have the Addison’s Disease under control for the most part by taking Cortef and Florinef but now on Norvasc (Blood pressure med). Dr failed to inform me that Florinef can raise BP. Have now reduced dosage of Florinef to 1/2 dose but still taking 2.5 mg of Norvasc. Hate having my 7 yr old on BP medication. Our main concern at this point is keeping his calcium levels in range with regards to Hypoparathyroidism. Still low. Get his blood levels checked often. Look forward to learning from other moms like you. We live in the Atlanta area.
I vas diagnosed at age 34 today IM 56 still going
IM on hydrocortisone and floronef
you didn’t menaced hydrocortisone which is my primary medicine floronef is
only my mineral IM in fort laud Florida please write to me anytime
LENKA GRBAVAC
6000 NE 22 WAY D-3
FORT LAUD FLORIDA 33308
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