Wednesday, February 15, 2006

Intercerebral Hemmorage

I'm not sure how to view the current situation. David got a medium sized brain bleed. We are not sure if it was spontaneous. There was nothing significant that happened to him that would make me think he had a brain bleed. He did play on a trampoline that week, but we are just not sure what caused it. Given that he has low platelets, it is not unusual for children to have spontaneous bleeds in the brain. His platelets were not extremely low (38K).

He came down with what I thought was a stomach flu. We even went to the park that day to get some sunshine and he ran around with his sisters, went down slides, etc. After that, things went down hill for the next 18 hours. He could not keep food down and we became concerned that he could be getting dehydrated. Also, it is not unusual for WAS children to get GI track infections since their immune systems don't function 100%. The Emergency Room at Stanford did a CT scan and found the bleed, deep, the size of a quarter, in the right temporal lobe. That is where memory, emotions happen. Also, it's where seizures could happen. The pumped him full if Dilantin, an anti-seizure med. He was admitted to PICU. Was in PICU for monitoring and he was doing great! No symptoms of a brain bleed! Perfect vital signs, perfect blood tests. They also had to adminiter platelets to stop the bleed. Another CT scan was done to verify the bleed had stopped. Then he was admitted to the pediatric hematology/oncology/BMT wing. The staff has been great. Our stay here at Stanford has been fine. I just took him for a red wagon ride around the third floor, which has huge windows and warm sunshine. He is taking a nap while I update the blog. Our church communities have pitched in a great deal and I know a lot of people have been praying.

David is fine. He is grumpy because of the anit-seizure meds which makes it hard for him to get comfortable. I heard from the neurosurgeon that he may be able to come off the meds in 1-2 weeks. They are planning a third CT scan on Friday and that will help them determine when to release him.

This incident has made us reconsider the BMT and we are all pretty sure that is the best alternative. Considering we do not know how the brain bleed happened, and how easy it is for him to bleed, we do not want to have this happen again. I'm not sure if the BMT is a step forward for backward. It's such a risky procedure, however, it's also risky allowing a boy to live with a serious bleeding problem. We considered a spleenectomy and feel that is a vital organ in the immune system and it should not be removed to fix the bleeding problem. First, it may not work. Second, David's immune system does have some immuno deficiencies and removing a vital organ is illogical. There is a great chance for WAS boys to develop auto immune diseases, so without that vital organ to fight off the disease, it does not feel right to remove it.

1 comment:

Michael McNally said...

The last paragraph seems to imply that having a spleen protects WAS patients from autoimmune disease. It doesn't, especially. The risk of autoimmune diseases for WASP+ patients is fairly high, spleen or no.

David is back from the hospital now! He was released Thursday afternoon. We have consultations with the hematologist and BMT specialists next week, then a follow-on MRI in 4 weeks, and then a follow evaluation with a neurosurgeon in six weeks.

I'm sure Aimee will follow up with more details...