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AKstone4 09-13-2013 11:06 AM

Ten year old son with Addison's Disease ~ Stress Shot Question

My name is Autumn. I am new to this board. I have a ten year old son with Addison's Disease. Having a child with Addison's Disease, I sometimes feel like we are charting unknown waters.

On occasion my son will go on day trips or spend the night with friends.

My question is this, should I send his stress shot with him on day trips with friends? If so what is an easy way to explain Addison's Disease and stress shots etc. to other parents?

PS: He does wear a medic-alert bracelet

Thank you for any advise,

shawntel 09-24-2013 07:40 PM

Re: Ten year old son with Addison's Disease ~ Stress Shot Question
as i am going to be of no help to your question perhaps though u can be to mine. my daughter was just diagnosed with addisons's how old was your son? i also seen that you are out of oregon like us who did you find to take your son to? we find ourselves up in portland. how does he cope with it? and how has it affected your lives as parents?

AKstone4 09-25-2013 01:12 PM

Re: Ten year old son with Addison's Disease ~ Stress Shot Question
We found out that our son Sawyer had Addison's disease when he was seven years old. He had always been very healthy. In the Fall Sawyer came down with pneumonia and was really sick. He ended up getting better but never seemed to fully recover. He started to be tired all the time. His pediatrician and my husband and I thought he was just taking a long time to recover from the pneumonia.

Next he started to lose a lot of weight. I thought he was going through a growth spurt so it did not really alarm me. A few months later he started to look really tan and it was the middle of winter. People would actually say to me "Sawyer looks like he just got back from vacation, he's so tan!" I really felt like something was wrong with him but I just could not put my finger on it. He started being nauseas here and there and also diarrhea. The day that I absolutely knew something wasn't right was when he and I were standing in the kitchen going over his homework and he literally laid down on the hardwood floor and said to me "Mom I'm to tired to stand up." That really scared me!

I kept searching his symptoms on the internet but I really did not find anything that fit his symptoms. Then one day my mom babysat Sawyer and when I came home she told me that she had made Sawyer wash his hands because they had dark dirt on them but that they would not come clean. She said that she had even washed them herself. It hit me that his dark skin was not normal. So I added dark skin to my symptom search on the internet. Addison's Disease popped up and it fit him to a T. Even though it is such a rare disease I took him to the doctor and told him each of his symptoms. He said it could possibly be Addison's Disease but not likely. He is such a great doctor and I think he ordered the Addison's test just to comfort me. It came back positive.

My husband and I were devastated. Sawyers doctor sent us up to Doernbecher's Children’s Hospital to Dr. Boston. Because Sawyer was seven years old and a boy they thought he may have a disease called Adrenoleukodystrophy. We were just floored. We read about ALD after the appointment and were terrified. Dr. Boston tested him for ALD and for antibodies for autoimmune Addison's disease. That was the hardest time of our lives waiting for the results of those tests. Sawyer's test came back that his Addison's was caused by the autoimmune disease and not ALD.

Sawyer has been a trooper in dealing with his disease. Kids are so amazing that way. He does have times where he feels sad about it or gets embarrassed about having to take medicine at school etc. We try to work through each hurdle as it comes along. It can be hard because there are not other kids around that have this disease so everything is new and uncharted for us.

How about you and your family? How old is your daughter and how was she diagnosed? We live in Salem. Are you close to us? I am so thankful to talk to another parent facing the same things that we are!

shawntel 09-26-2013 12:20 PM

Re: Ten year old son with Addison's Disease ~ Stress Shot Question
my daughter is almost 8months. she was born to term a healthy almost 7lbs just like her big sis. Within hours i knew something wasn't right she began to sleep the first day 19hrs she wouldn't wake up they put her on iv fluids right away her sugar lvls where low she couldnt get warm. and she was the most pretty shade of tan olive you could think of but im irish and so is dad.....6days we spent in the hospital on day 7 we got to go home to be put back in 14hrs later she had lost almost 2lbs in that time she was tube fed and still we had no answers. her ped had us go up to portland to the same place as you where we seen and still are working with dr maddison. they still are working on everything its a huge fight down here in grants pass area the lack of knowledge is scary just this past Friday she was rushed to the er with a fever of 103 i could feel her heart racing she couldn't/wouldn't eat she didn't even smile any more 12hrs i fought with the er docs begging them plz listen she has a rare disease that she is going into a crisis and that they didn't have her acth test back yet but had already started meds because of all other tests finally i was able to reach dr maddison who pushed through emergency meds for her. now we are getting her meds set right 4 times a day at this point we go in for an mri and ct scan in two weeks they have. portland is even at a lose with her and we are heading to some doc in Boston in a few months. and beyond that bless his big sis for seeing this and doing nothing but trying to learn more because she said that her sissy needs the very best :). it is nice to talk to someone atleast in the same state!

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