Addisons Disease

[Snowmom]

ADDISON DISEASE

 

Here is something you don't hear much about, and I'm not sure I've really heard of it at all, until it was brought to my attention lately.

 

Do you know someone with Addison Disease?? If you do know of someone, please read the information on the following sites, as you will find a LOT of inforamtion at these sites. It will help you to understand them better.

 

http://www.aldfoundation.org/materials.html

 

http://www.endocrine.niddk.nih.gov/pubs/addison/addison.htm

 

http://en.wikipedia.org/wiki/Addison's_disease

 

http://www.mayoclinic.com/health/addisons-disease/DS00361

 

I haven't read all of the information, as there is a lot there to read, but again if you know of anyone with this, read at least some of the information.

 

 

[mom11]

Thank you so much SNOWMOM! You are the best friend and I don't know what I would do without all your kind and helpful words. We are all so lucky to have you!!!

 

You have made my research so much easier!

 

My son Joseph, as we all know, has been round and round. He is very sick and very thin. He has lost close to 40 lb. over the past 18 months and cries in pain. I have taken him everywhere and been asked if this poor child is "making too much" of this. Last month I took him to Vanderbilt hospital for an ACTH test. This test shows that Joseph has very low levels of cortisol. Yesterday, I took him back for a longer version of the ACTH and the tests will be sent to California. It appears he has some kind of adrenal failure. He has complained and cried and even felt that, as his damaged, little mind says "I thought about unbearing life, because of the pain." I do no know if Addisons is the disease J. has, but my SIL does have it and there is a genetic predispostion to getting it. He is also having some other tests sent to California to look at some genetic disorders that cause adrenal failure.

 

I wasn't going to post about this, but SNOWMOM kindly found all this for me and for anyone here, that may be dealing with this disorder or may someday experience these symptoms. This disease is very serious and very rare. I kind of feel like, it is hard for people to believe one family has all these problems...One of my sons wrote to my precious Aaron and told him, I was crazy and all this medical stuff was made up.

 

I also wonder about all the harsh psychiatric drugs this poor child has taken. When he was in treatment, I asked them not to put him back on Zyprexia. It is a drug which is associated with a lot of metabolic problems...I sure hope this hasn't been caused by Zyprexia. I had him taken off, immediately after I brought him home.

 

Anyway...Thank you SNOWMOM! You keep us all educated! God Bless You!

[Snowmom]

 

Aww, Mom11, I'm happy to do anything I can to help. I just wish there was more I could do. There has to be some way to get this problem with Joseph handled.

 

I'll keep and your family.

 

Glad you are my friend.

[Momo]

Did you know President Kennedy had Addison's? It was kept quiet because there was very little treatment available back then. He probably would not have been elected if this were known publicly. His father had vials of cortisone stashed in safety deposit boxes all around the world for him to use in case of problems.

 

Thank goodness we are making some progress in treating Addison's disease.

[mom11]

Does anyone know about Addisson's Disease? I took my J. back to Vanderbilt this week. He has lost 4 more pounds and has not responded to treatment. He still has severe stomach pain, headaches, and back pain. He is very tired. We are going to be referred to a clinic for diagnostic dilemas. I am also taking all of the chicks to the muscular dystrophy clinic on the 21st. They were actually closed on the day we are coming in, but in order to save me from the "big ole 2008" fresh deductible, they opened up just for my family. I am speechless!

 

J. has been on Prednisone for several months, but he didn't respond as expected. He is now on Fludrocortisone, since he has started losing sodium, and the Prednisone has been switched to Dexamethasone. I have an injectible cortisone, that has to be given, as an emergency if he vomits and can't keep the other meds. down. He can die under those circumstances. It is so serious, that if I draw the syringe back and get blood, I am just to withdraw the syringe and try again, without changing to a clean needle. I have to call 911 anytime I give the injectible meds.

 

Anyone have any thoughts on what else could be wrong with my child? There's no diabetes, no thyroid disorder, although he is at high risk to develop these and other auto-immune disorders. Thanks!

[Jasminegirl]

for your son, that they find something soon.

[Snowmom]

You know I am for him and all of you.