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AA Aplastic anemia

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  #1  
Old Fri Jan 12, 2007, 11:34 AM
natrish natrish is offline
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Terrified mom: son using drugs and alcohol on cycosporine

My name is Trish. I have a son that has aplastic anemia and has had 3 ATG treatments in the last 7 years. He is now 17. I took him to NIH in July of 2003 and was told to keep him on cycosporine for 5 years this time due to everytime we stop the med's I about loose him. I am freaking out because he ran away from home last night and does not have any med's with him. He is smoking marijuana and drinking alcohol. Has anyone experienced this or similar situations? I am terrified. Please help me. Trish
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  #2  
Old Fri Jan 12, 2007, 01:01 PM
Ruth Cuadra Ruth Cuadra is offline
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Dear Trish,

If you haven't done so already, you should call your son's doctor for information on how missing his cyclosporine doses might affect him. How long will it take for the medicine to be out of his system? What side effects might he feel if he's stopped cold turkey? I can't imagine that missing a few days or a week will cause his AA to relapse, but you will feel better if you hear it from his doctor.

Call his school, his friend, and the parents of his friends to put the word out that he's missing and needs meds. It's very likely that he's staying with a friend. Teens aren't usually bold enough to actually runaway if they don't have a place to go.

If he's not back in a day, you should not hesitate to call the police. They know a lot about where teens hang out when they run away and can help you find him more quickly.

Please let us know what happens.

Regards,
Ruth Cuadra
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #3  
Old Fri Jan 12, 2007, 03:37 PM
natrish natrish is offline
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Dear Ruth,

Thanks for writing to me. It helped. I called the police yesterday, have talked to his doctors and all of his friends. Have been all over today looking for him and have contacted friends, parents, etc. Unfortunately the police do not take it seriously. They don't realize the impact that aplastic anemia can have on peoples lives. Malachi, that's my son, has relapsed 3 times. The last time they stopped the cycosporine he lasted almost 2 months before his bone marrow was almost totally empty. Doc's didn't know for sure how it would affect him to just stop taking his meds. The order is standing by at the hospital and as soon as I find him or he comes home I'm to take him straight to the emergency room. I have never talked to another that has suffered from this disease or had loved ones that deal with it. I just know that Malachi has almost died a number of times. When they tell you they aren't going to make it through the night...it definitely traumatizes parents.

Thanks again for writing.

Trish
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  #4  
Old Sat Jan 13, 2007, 01:05 PM
Connie Connie is offline
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Terrified mom

Trish, I am so sorry about your son. I am can't imagine how you must feel. I will keep him in my prayers. One more thing I think you might really want to think about when your son gets home, is if you have not already done so, to get him into counseling. AA itself is too much for one to deal with, and since he has been treated so many times, it must be very difficult. He probably could use someone outside the family to talk to about such issues. And of course, being a teen doesn't make things any easier.
I do hope they find him soon or he comes home on his own soon. You are all in my thoughts.
Connie
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Connie, diagnosed with AA in Nov. of 2000. Had ATG treatment with short remission. Then had ALG treatment in 2001. Am in remission as of 10-2007.
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  #5  
Old Sat Jan 13, 2007, 06:39 PM
mo_shane mo_shane is offline
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hi trish,

i too agree with connie. your son could do with some serious counselling. he has clearly been through such a lot and we all cope (or don't) in different ways. it's almost like he's sabotaging his hope for recovery simply because he has witnessed failure - perhaps too often. he's rebelling and who can blame him

through my son being diagnosed with VSAA and going through transplant - we met a few kids on that ward. the oldest on the "kids" ward was a young boy of 16. when we met him, he was going through his second BMT. over the next two years, he was heading for his third - the last chance really. he's been awfully ill - so, i couldn't believe it when i saw him outside the hospital in a wheelchair smoking a cigarette. also bragging about going out to concerts and drinking lots! i wondered why he would do such a thing to his body after his constant fight with leukemia.

if you haven't been through it yourself - you can only imagine what goes through their minds. but for sure, they need help. i'm no psychologist, but i can't help but think your sons behaviour is cry for help - maybe

all the best to you and your family.


gina xxx
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  #6  
Old Sat Mar 10, 2007, 02:42 PM
julia69 julia69 is offline
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We are wishes you the best.

I too have a son with A.A. and that is one of my worst fears is that I loose him and he can't get his meds or that he'll get so feed up with the crap and run away from it all.I know everything will turn out for you and your son .Please keep the forum posted.
Best Wishes,
Julia
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