Recoverd AA Patient here for support.

[Denny54017]

Hi my name is Dennis Brunkhorst I am here to give to support to patients and familes dealing with AA. I was dignosed with AA at the age of nine. I was fortunate enough to recvie a BMT from my identical twin brother.

[Marlene]

And thanks for offering your support. How long ago was your BMT? My husband has a twin also but he's not identical. So do you have to deal with GVHD being that you brother's BM is identical? I would think this the ideal scenario for anyone getting a BMT.

Marlene

[Ruth Cuadra]

Welcome, Dennis! Thank you so much for offering to share your experiences with AA. It means a lot to patients and families who are struck by this disease to be able to hear first-hand from someone who has survived. I hope you'll feel free to jump into any threads you see where you can help.

Regards,
Ruth Cuadra

[Lisa V]

Originally Posted by Marlene

So do you have to deal with GVHD being that you brother's BM is identical? I would think this the ideal scenario for anyone getting a BMT.

You'd think so, Marlene, but do you remember Gina, who sometimes posts here and on Aplastic Central? She is the mother of identical twin boys and said that initially they rejected her son's twin as a donor because it would increase his chance of relapse. She was floored because she had assumed, as we all would, that it was a no-brainer. They did say that the risk of GVHD was practically nil, though. In the end they went with it because there was no other suitable donor. Last I heard he was doing well, but we haven't heard from her in a while. Maybe she will check in here.

Dennis, I read on another thread that you are 35 now, so I guess you didn't relapse! It's always good to hear of long term successes.

[Marlene]

I vaguely remember.....I know if John had an identical twin they would have seriously considered a BMT even though John was 50.

I saw your post on AA central and I was glad to see Ken doing so well and stable.

M

[Denny54017]

My BMT was done in 1985 at the U of M in Minnesota I didnt have to take any meds for the BMT due to the fact that I had the an Identical twin.

[Jenny L]

Hi Dennis:
I have six year old identical twin daughters. The older one Emily was diagnosed last October as very severe AA. She went through BMT last November. During BMT treatment her immune system got the supressed.

Last month, her white blood cell lab test result was 7.8 and this week all back to 4.3. She still needs Red Blood Cell transfusion about one/5-6 weeks Her immune system is still very weak as doctor told us.

I have expected Emily should recover faster since she received Bone Marrow from her twin sister. Can you tell me about your AA recovery Journey?
Thank you in advance.

[Julie Perrotta]

Hi, i'm Julie. In 1999 i was diagnosed with AA, and luckly recieved a bone marrow transplant . I am now 16 and healthy . If anyone needs to talk or if you have any questions, i will try to answer them the best i can.
Julie

[Jenny L]

Hi Julie:
Thank you for offering the supports. My six year old child (will be 7 year old in July) Emily was diagnosed as very severe AA last October and had her BMT 11/20/2007. She got her Bone Marrow from her twin sister. Last week, her white blood count is 6.5 and her hemoglobin is 9.0 and red blood count is 2.9 and platelet count is 210. I think her hemoglobin and red blood count grow too slow. But her doctors told us it is very normal.

This week she was sent to Child Psychiatry and behavior clinic. And doctors would like to see if the past six month intensive treatments have or will have impact on her normal development. We are very worried.

My other concern is about Emily's social development. She is still in isolation stage and has to be confined in the home without contacting other kids. I am thinking if we should hold her back for one year when she returns to school.

[Julie Perrotta]

JennyL,
I’m very sorry to hear about your daughter. Its really good that she received a bone marrow transplant, even better that its from family. I received mine from a women in Ohio, I live in Canada, so it was a pretty far distance. I have dealt with a child psychiatrist, but in my own opinion, he didn’t know much. But I think the reason I had one was because I had really bad stomach pains for a really long time and we didn’t know why it was being caused.
My parents couldn’t decide if I should have been back in the same grade the following year or been held back. But my parents didn’t want me to feel uncomfortable so they put me in the grade that I was originally supposed to be in. But when I got home from the hospital I had a tutor help me refresh my memory for math, and English , only because I didn’t want the hospital teacher to bug me.
But its all up to you, whatever you think would be better for your daughter. I wish you and your daughter all the best and you can message me again if you have anymore questions or anything along those lines.

[ljvoight]

Hi Jenny L.

I also have twin girls but mine are fraternal twins (11y). Danica had vsAA and had to have a BMT, her twin was a perfect match. I know that you are going through a difficult time. Sometimes decisions feel the worst.

I was debating on holding Danica back, for Danica it would have devastating. Because of Bushes "No Child Left Behind", the school district has to provide an education for your child. in our case the school sent a teacher to our house every day (no charge) for 1&1 /2 hrs 1 on 1 and met mandatory requirement. When she went to the hospital they had a program That met school requirement. Danica enjoyed the distraction, plus they gave her very little homework. When she was feeling very sick they let it slide.

Danica was able to stay with her Twin, the school set up a tutorial when Danica came back that if she needed extra help she would get it. I am happy to say that she is doing very well and came up to speed quickly.

I think when you have twins it puts a little twist especial if they are of the same sex. Just food for thought.

[Jenny L]

Hi livoight:

Thank you for sharing your experiences and thought. After Emily was discharged from the hospital in January, she has been getting about 4 hours/week home teaching from the school district. Her doctor told us that she should be able to go to the summer school in June if no infections or other complications happen. How many months out of BMT did Danica return to school? I will be very nervous to send her back to school when Emily won't have a normal immune system. We were told by her doctor that it will take a long time for BMT patient to rebuild a normal immune system. Because of the twin situation, it will be devastating to hold Emily back for her school.

This week, her white blood count is 4.3 and her hemoglobin is 10.2 and her red blood count is 3.2 and platelet count is 220. She has been making slow progress recently. So far Emily looks and feels good it is hard to remember that something as simple as a virus could set her back. She had very bumpy recovery road: just after 20 day’s her BMT, she caught fungal infection in her lung which almost took her away from us.

[ljvoight]

Hi Jenny L.

Danica went back to school about 4 months after her BMT. She was still low on her counts but the Dr's felt that she would be safe. The school was on alert that if any child came down with a sever illness that we were to be notified immediately so that we could pull Danica if we felt the need. The teacher also kept a bottle of hand sanitizer for all her kids when they came back into class.

Fortunately Danica has not been sick except for a minor cold since she has gone back to school." We are currently just starting her vaccinations again since they were wiped out with the BMT" She had her BMT on 11/29/06
Feel free to e-mail me privately if you like.

Wishing you the best,
Linda / ljvoight@cox.net