ALD-7y.o boy -life After Bone Marrow Transplant
Dear Parents of ALD children.Feed back needed. My son had Bone Marrow Transplant Feb-8-2008. This date is making him just about 5 month old.He have had neurological changes before transplant like: speach problems,swallowing difficulties,gait ataxia/trying to hold on to things to ballance/,bathroom accidents. He stop speacking while going through chemo therapy before transplant.Since he is in rehab for 3 month from 9 weeks in Rehab hospital to 3 hr a day-5 days a week Day-Rehab.His recovery is ,so slow! He is not walkin,sitting on his own or speaking .He has many improvements like short words sometimes-Ok,Hi,Yeh.,he is able to sit without assistance for 10-15 minutes,watch TV /although his attantion span is 5-10 min at the time/.Have any of you had this experience after Transplant? Has any of your boys are beyond 1 year mark and how they are doing? Please share your experiance.I constantly ask around and ,no one knows anything about recovery .Thank you
Posted By: Sammyswish
Posted On: Jun 24, 2008 11:21 pm
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Re: ALD-7y.o boy -life After Bone Marrow Transplant
My son is 14 months post transplant. Although the progress is slow, he is still regaining things that ALD stripped from his young body. Before transplant Jack had limited attention and was having trouble with fine motor control. Through transplant he lost his ability to speak, swallow and serious difficulty walking. He is still not talking (although he can sing) but he now able to swallow and even eats (although we cannot drink). He not only walks now, but runs and jumps. His attention is still limited but he gaining every day. He just now returned to school (for children with significant special needs) and he has had intensive PT, OT and speech therapy for a year.
BMT is not an easy procedure, but we have no regrets. Before his BMT Jack was losing more and more every day. Now his disease has stopped progressing and we feel that he has a happy comfortable future. Please feel free to get in touch.
Jess jctorrey@comcast.net
Posted By: Jesse Torrey
Posted On: Aug 3, 2008 2:38 pm
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Re: ALD-7y.o boy -life After Bone Marrow Transplant
Thank you for responding to my question. Sammy just celebrated 6 month since transplant. He is ,so weak. He lost allot of weight and not eating much. Lately we are experiencing vomiting almost everyday. We had checked his eyesight -it's Ok/thank G-D/, his adrenal gland is OK/ it was alway more of leukodistrophy side/.
If you can please contact me at sammyswish@gmail.com
Thank you for giving us hope.
Posted By: sammyswish@gmail.com
Posted On: Aug 11, 2008 12:05 am
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Re: ALD-7y.o boy -life After Bone Marrow Transplant
Hello. I have/had two sons with ald. One underwent bmt at MN. The other did not. My son that underwent the bmt lost his vision and is legally blind now. He has some learning difficulties but is fairly normal with the blindness being his biggest issue. We are very blessed. We lost my oldest son due to ald. I hope your dear Sammy is doing better. I just found this site and wanted to post. If you would like to email its smithrus5@wcrtc.net
Posted By: gabbiebaby
Posted On: Oct 7, 2008 3:30 pm
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Re: ALD-7y.o boy -life After Bone Marrow Transplant
my son is now 17 yrs out from transplant and medically doing fine. We are still working on his life skills. Good luck with your son.
Posted By: Cynthia
Posted On: Oct 28, 2008 8:04 pm
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