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Addison's Disease Message Board
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Old 02-08-2012, 11:58 AM   #1
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CmkRed HB User
13 Year old daughter just diagnosed with Addisons!

So after being extremely sick with what I though was just a bad flu... (throwing up a lot, couldn't keep any fluids down)... I finally took my 13 year old daughter to Emergency... After a battery of tests they discovered that she has Addisons... We're still in the process of figuring out exactly what is going on and how much hormone replacement therapy she will need. I guess I just want to know if anyone else out there has any advice for me? Anyone who has been through this with their child/children? I'm stressing and just want my baby girl to be ok! Thanks in advance to anyone who can help with any advice or even just kind words!!

 
Old 04-13-2012, 09:20 PM   #2
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Justineg HB User
Re: 13 Year old daughter just diagnosed with Addisons!

She is going to be fine! I was diagnosed at 20 (am 25 now) and I know my parents still worry about me! If you need any advice on treatment or anything especially from a young female's perspective I am happy to help. E-mail me

 
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wiggins (09-30-2012)
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Old 04-23-2012, 02:21 PM   #3
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Re: 13 Year old daughter just diagnosed with Addisons!

Firstly, I am really sorry to hear that your daughter - and your family - is going through this difficult time. I was diagnosed with Addison's disease at the age of sixteen, after half of year of being extremely ill. I think my parents knew I was not faking, because I couldn't even walk to the bathroom, but they assumed something more traditionally teen (drugs or eating disorders) was causing the symptoms. It was a really difficult time and your daughter has a lot to be thankful for that you've taken her to get help rather than berate her.

Adjusting to a chronic illness at a young age is very difficult. Things are going to change for her, unfortunately. However, that doesn't mean she can't still get what she wants out of life. For me, it was hard adjusting to the fact that I'd need medication all my life. Even in my thirties I get impatient. I'd recommend if she shows any reluctantance or resentment toward the meds, ask her to keep a diary so she can note changes. As they work toward finding her a dose that is ideal, she can keep track and begin to see how meds affect her. This would go a long way in helping her take control of them, rather than feeling controlled by the condition.

As a parent, I'm sure you're worried for her, but Addison's is something that can be managed and dealt with. Just being there and listening is probably the best help you can provide. Addison's can make sufferers extremely tired, so try to understand what's going on if she seems fatigued and don't assume she is lazy. However, encourage her to budget her time and energy well so she can make the most with what she has. One thing I'd recommend is avoid being the overseer of her condition. At first, she may need a calendar or box to help her remember when to take her pills, but don't harp on her for it. My parents did that and it turned into a battle of wills many times. Let her be responsible for her health, with you in a supporting role. Learn all you can about the illness. Believe her if she reports symptoms and problems. Get to know the doctors she sees and make sure they give her the best treatment they can provide. Don't be afraid to ask them questions, even if they aren't warm about it. Your daughter's illness is chronic but it won't cut her lifespan, it doesn't mean she can't do the things she's dreamed, it just means it's harder. As long as you support her and trust her instincts (after a while she will know the condition better than her endos) she will be okay.

 
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Old 04-25-2012, 06:20 PM   #4
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Smile Re: 13 Year old daughter just diagnosed with Addisons!

Bless your heart. I know what you are going through. My daughter was diagnosed at age 12. I was so scared and no one knows what the disease is let alone what she is going through. The good news is that she is 14 now and she has done remarkably well. I thought she was going to be sick with every illness going around due to lowered immunity because of the cortisol, but she has been very well.
Here are some things that we have discovered:
She probably really is tired when she says she is.
She has a low tolerance for heat-take gatorade with you when you will be out in the heat.
Make sure her teachers, PE coach, and administrators know about this and what they should watch for in an emergency. Most will have not heard about Addison's.
Get her doctor to write a note to her PE teacher for her to be able to bring gatorade during PE if needed.
If she takes a middle of the day dose, have her take it at school (with proper paperwork from her doctor) instead of waiting until she gets home-we have discovered that taking her afternoon cortisol earlier is better than later.
Keep an extra calendar to write down unusual or different symptoms. Or to keep up with levels of tiredness. Something that does not seem to be related to her Addison's may be. Take this to the doctor every time you go.
Keep your endocrinologist's number in your cell phone-you will talk to him/her a lot. Don't hesitate to call.
Read as much as you can on Addison's-The terms sounded Greek to me when we started.

My daughter lives a normal teenage life-she really is fine. We just have to make sure she has her meds. If you have any other questions, let me know-I would love to hear from you to see how you are doing!

 
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wiggins (09-30-2012)
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