Mum to son with AA

[sasba]

Hiya all,
My son is 11 and in July 2012 was diagnosed with AA, he was receiving transfusions every week (mostly platlets) and had the ATG in the middle of Oct 2012. still was getting transfusions up until the 14th December and hasn't had any since. after xmas the platlets were going up and then he was taken of his intraconazole and it seemed to interfere with his ciclosporain levels and they had increased it every week from the 11th feb, he is now on 90mg twice a day. im confused as to how long it can take for the platlets to regulate, his other counts have gone up the platlets just seem to be very very slow. in one breath the doc saying the posabilty of a BMT and the other they are sending him back to school. From many stories I have read that it takes a lot of people 9 months after ATG for the bloods to regulate. My son is in great form and eating well the whole way through everything. Please don't reply with any horror stories as im a single mum who suffers from anixity and also trying to support my son through this and his autism/learning disabilities. Im just looking some kind of advise or someone to chat to as I feel very isolated as I don't know anyone else who has or children have AA. im glad I found this site.

[sstewart09]

My husband has AA, so I know that it's a different situation. However, I do know that there are a few Facebook groups that could probably help you. One is called band of mother's in the fight against aplastic anemia and the other is aplastic anemia awareness. Hope these help..

[NLJabbari]

Hello Sasba, from what you've mentioned I'd say your son is doing quite well. He is transfusion free, but platelets are lagging behind? When you say regulate, do you mean within "normal" counts? I don't think it's as important that they reach "normal" levels as it is that they're simply not dropping. Sometimes the upward climb happens quickly and at other times it takes a while. It may vary from patient to patient. Many who are doing quite well never really reach "normal" counts again. Their new normal sometimes is lower and they function and live quite "Normal" lives.

I'm sure your son's Dr. mentions BMT only as an option that is on the sideline should it be needed. It takes time to get things rolling so they try to have all the necessary information, tests, etc. beforehand just in case you have to go to Plan "B". Sometimes finding a suitable donor can take months, so they like to start the search asap "Just in Case" it's needed.

If there's a piece of advice I can share with you, it would be to be patient and take it one day at a time. Thus far you're doing the right thing by asking questions. We're all here to help each other....

Take care

[sasba]

Thanks sstewart09 must search for them.
NLJabbari Thank you for your advice, yes by regulate I mean 'normal' His platlets are sitting at 31 at the minute. I have learnt very much so to take it day at a time. Its just frustrating when we go to the hospital every monday hoping that they have increased. His other counts are going up so im thinking something must be working, just the platlets are maybe taking there time. we are getting a wee break easter week so it will be two weeks before our next appointment, can be a long time when you dont know whats going on in his wee body.

[Karenish]

You are a mummy you will worry, but the first ever hurdle is to get off transfusions, then its a waiting game, my counts did nothing until month 10 then they very slowly climbed all normal now except platelets which hover around 68, but even now, I will never give up , there are lots of stories of the marrow making a slower recovery and plates are the hardest generally to increase. It is a roller coaster, but if your little one is going back to school this is good, life will be relatively normal. Drink lots of water, avoid process foods, fresh is best as they say - and god willing they will go back to normal in time xxxx

[Becca C]

It takes time, be patient and hopeful. My son was diagnosed with AA in Feb 2009 at age 11. He received ATG and like your son he had frequent platelet transfusions for almost four months. After than he had nupugen injections for two months and since then he has been taking cyclosporine everyday and bactrim on the weekends (in addition to blood pressure medicine). His platelet counts:
Feb 2009 = 4(000) on day of diagnosis
Dec 2009 = 21(000)
Dec 2010 = 65(000)
Dec 2011 = 96(000)
Dec 2012 = 115(000)
And he's been between 104 and 115 since then. I think he's finally plateaued but we feel like its a safe level, and all his other counts are great. Hang in there!