April 14, 2006


Yesterday we met with Dr. Bruce from Children's Hospital and we were very impressed with him. He seemed very knowledgeable and was good at explaining the things we didn't understand as well. Oh, and his hands were very steady!

Dr. Bruce was also very good at summing up what we he thinks we should be doing which is pretty much in line with what we've already been told from other doctors and are doing:

--Have additional testing done to see if it's possible to diagnose Evan with Tuberous Sclerosis. This will probably involve testing his eyes, skin, heart and kidneys.

--Continue to increase the dosage of Keppra in the hopes that we will reach a level that will manage the seizures before we max out on how much is safe for Evan to take every day. We should know if this is working in 2-3 months.

--If the medication doesn't control the seizures, Dr. Bruce recommended having a noninvasive test done that can hopefully determine which tuber is causing the seizures. This is a highly specialized test and can only be performed in Detroit. If it shows that one tuber is causing the seizures, he may still be a surgical candidate. This would, of course, lead to many more extensive tests to be certain that surgery is an option, and if so, to make sure it's the best option.

Initially, when we heard Evan may have Tuberous Sclerosis, we thought he would not be a surgical candidate, so it's good to know that nothing has been ruled out yet. Not that we're hoping for surgery necessarily, we just don't want to loose any options.


Anonymous said...

Good news about the steady hands.

Doing the PT at home sounds great too.


James said...

That is good news about Evan. I hope the medication takes care of the seizures. Also good to know that the surgery option is still on.

Know that all of you are loved and we are thinking of you.