4 year old- leukemia and stroke

[gohogs]

My daughter was diagnosed with leukemia (ALL) a little over a month ago. She subsequently suffered a stroke, probably a rare side effect of one of the chemo drugs. She had right side weakness and lack of speech. Then, she got an infection and ended up in the ICU- the doctors believe that the stroke completed at that time. Now, she has more weakness and cannot answer by shaking or nodding her head like she did pre-ICU visit. This week, she would wake up for short periods of time then sleep, but the last two days she can't stay awake for more than a minute or two. She is not able to start aggressive inpatient rehab b/c she isn't capable of really participating or following directions at this time. There is virtually no information anywhere about childhood strokes... especially with a child who also has leukemia. I know that children have a remarkable ability to recover from brain injuries, and their recoveries are different than adults. Can anyone help us with any information? We would appreciate it so much...

[Luckylinn]

My thoughts and prayers are with your little one and family. I am the sister of a 31 year old strokee. We also found ourselves in a similar predicament in Feb. of 2009. My sister had a massive hemorraghic stroke with no previous warning. She was in ICU for 25 days. After her surgery, she developed various infections, including MRSA and Meningitis. For 20 days, she would only open her eyes for a few seconds but would not stay awake. We waited by her bedside 24/7 and when she finally did "wake up", she was not able to talk. It was two weeks after her waking uo that she finally spoke again, although with very slurred speech. Today, we consider ourselves blessed that she is even alive, and her recovery has been nothing short of a miracle. Although she still has a long road ahead of her, she is now walking with the help of a walker and slowly relearning all the basics of daily living. She is even able to watch her 2 1/2 year old and helps her 7 year old with his homework. I searched the internet daily to find info that would be useful to us, and was surprised how difficult it was to find young strokees. My advice to you is to keep searching, keep looking, don't give up. A book that has a great deal of information on strokee websites and hospitals is called Conquering Stroke, by Valerie Greene. I wish I had ran into this book 8 months ago.
May God be with you on this long and painful journey. You will be in my prayers.
-Luckylinn

[Tina22]

My prayers are with you at this devastating time (hugs). I had a stroke, but was 28 and I don't have much guidance for you. I did learn that the brain was so easy to retrain, but a 4 yr old ... I don't know how you go about that. I have 3 kids under the age of 7, so I cannot imagine it. My 5 yr old broke her arm very traumatically, needed extensive therapy/repair/follow-up etc. and we are still hoping the nerve will heal and begin to work again in her hand, but getting her to cooperate and do her exercises and participate in her healing process has been difficult to say the least. She was obstinate from the moment she was injured. I know how hard it is to deal with a little one that doesn't want to participate.

Is your little one lucid, other than not being able to shake her head? Its hard for me to remember my therapy, but I had to do things like roll pennies or pens in my fingers. My brain thought my hand was something like an 1/8th of an inch off from where it was, so there were all sorts of little exercises. I also had to do vestibular exercises, all of which you can find online. But getting a 4 yr old to do that, is a whole different story. I'm so sorry and I will pray deeply for your family.