Hi I'm Chrispy61, My Daughter age 17 was just diagnosis with Addison's Disease :eek: and I'm looking for a support group to learn more about it. She just got out of the hospital being in for 5 days 2 days were in ICU. Any information will be a great help for now. God Bless you all :angel: Thank you for your help.


Chrispy61

Sorry to hear your daughter has just been diagnosed, but it is good that she is now on replacement meds to make her feel better. There is so "much" for her to learn to keep herself well & to be sure to increase for illness & any trauma. She will need an emergency shot to carry with her at all times. Info in the manual, or ask about it. Best thing is to join all the support groups you can find & ask questions.

A search for the Addisons Owners Manual would be very helpful for her. I printed it many years ago.

There is too much for me to list, but an important one is to drink at least the recommended amount of water daily to stay hydrated. Avoid very hot weather for long periods.

What meds do they have your daughter on? They normally start high to stabilize & then reduce to lowest dose possible. Is she taking Florinef? If so she should not restrict sodium, but add it. Have bouillon cubes in the house in case she needs extra salt. Eat protein.

Just ask all the questions you want. Someone will be able to answer.

What state are you in? Best Wishes to your daughter.

Wanda (Oregon) :wave:

PS: Missed your header & see you are in NY. The other side of the US from me!! Guess we won't meet for lunch! :)

Wanda

Sorry to hear your daughter has just been diagnosed, but it is good that she is now on replacement meds to make her feel better. There is so "much" for her to learn to keep herself well & to be sure to increase for illness & any trauma. She will need an emergency shot to carry with her at all times. Info in the manual, or ask about it. Best thing is to join all the support groups you can find & ask questions.

A search for the Addisons Owners Manual would be very helpful for her. I printed it many years ago.

There is too much for me to list, but an important one is to drink at least the recommended amount of water daily to stay hydrated. Avoid very hot weather for long periods.

What meds do they have your daughter on? They normally start high to stabilize & then reduce to lowest dose possible. Is she taking Florinef? If so she should not restrict sodium, but add it. Have bouillon cubes in the house in case she needs extra salt. Eat protein.

Just ask all the questions you want. Someone will be able to answer.

What state are you in? Best Wishes to your daughter.

Wanda (Oregon) :wave:
Hi wonda Cyndi is on 2 meds Hydrocortisone as Cortef 10 mg PO BID and Florinef 0.1 mg a day. I got the kit already. They NADF ( National Adrenal Diseases Foundation) as well. She was 2 day away from going into a coma And kidneys shutting down. I was Scard ****. she is home now after 5 day in hospital. How long have you been diagnosised with this?
Chrispy61 L.I. NY

Chrispy,

I don't know what the PO BID means. Her condition was very serious. People are actually still dying from not being diagnosed in time. Very sad.
Give us the "time" of day she takes the Hydrocortisone & amount for each dose. I don't do well on Cortef so use Hydrocortisone which is generic for Cortef. We are all so different & have to find what works best.

She may find later that 1 Florinef is too much. Watch for weight gain & high blood pressure.

Great that you already have the kit. Some people have to fight to get it.

I was diagnosed in 1998. Haven't had a crisis since. Everything's crossed!!

Wanda

Yes she was almost in a coma. The hot weather here is what did her in. other wize We wouldn't have known. Hydrocortisone which is generic for Cortef is what cyndi is taking I will watch for the BP not to go high. That's Great you havn't had a attack since 1998. I'll say a Prayer for ya to stay that way.

Chrispy61