Update on 12 year old

January 28, 2009 at 6:15 pm

Hi Everyone, I thought that I would give you all an update. Our records have been at Hopkins for 2 weeks. They have reviewed them but have not gotten back to us yet. I plan to follow up tomorrow or Friday.

He was discharged off of the catheter last week! He has also been dry for the past 6 nights and for 8 of the past 9 nights!

His strength is getting close to normal. He still has some abnormal running.

His doctors think they are seeing signs of “upper motor neuron” damage which would make GBS even more unlikey. They are convince that whatever happened, occured to the spinal cord itself. He has something called a babinski sign that is only seen with damage to the brain or spinal cord in anyone over age 2.

They feel he can return to all sports (including contact) once his spinal cord is fully healed. We are hoping that will be in the next month or so.

He is practicing hockey with his team with the exception of contact drills. He obviously sill can’t plaly in games because of contact. It is driving him nuts but he is actually dealing with it very well most of the time.

We go back to our local neuro in a month and physiatry and urology in early March. I am hoping that after that, we will see them again in May for his next series of MRI’s and we can move forward with our lives. Time will tell.

Of course, we still want the second opinion and will seek somewhere else if Hopkins doesn’t get back with us in the next couple of weeks.

His nuero also called and spoke with a lot of other doctors about doing an angiogram. They all agree that the risk of the test is not worth what they will find out diagnostically. She also told me that none of them agree with her about returning to contact sports. They all think it will be fine when he is 100% as does his physiatrist.

I will keep you all updated even though we now know about 99% it is not GBS. The extra 1% is because his neuro was not convinced it was a babinski sign but his pysiatrist was convinced.

Take care, you all are a great group so I am thankful that I found you all despite the liklihood that he has/had a viral spinal cord related illness.