Monday, June 22, 2009

We *Might* Have Some Answers

This is a copy of Taffi's post to the MOFia regarding our updates. I think it says it pretty well.

We just had a team of like 5 or 6 neurologists come in (I think they were mostly interns, actually) and they had semi-good news. They want to do a video EEG to gather more concrete data, but they believe he has been having little seizures and want to see if they can record one. They believe the seizures are caused by the hamartoma. We asked if the hamartoma has gone from being an incidental finding to being the major cause, and they said yes - but they do want to see the EEG before they say 100% this is it. Good news is, it is treatable with meds for life. Bad news is, they're not sure how he'll tolerate the meds. However, meds are pretty much the only option - the neuro said you would be beyond hard pressed to find a surgeon willing to go in. They said there is a chance he may have some learning disabilities as he grows, but it's too soon to be able to say for sure. Bottom line, this will be life-altering, but not life-threatening.They were really fascinated by him, really. The neuro said that the chances of having a child with a hamartoma along with the vistibular malformations that cause the deafness are more than one in a million.

So, we don't know for 100% sure that this is the issue at the heart of all the problems, but I will say it does feel right to all of us. I have to laugh about the more than 1 in a million chances of seeing a baby with this kind of brain issues. It seems all my kids have rare thing going on. I should call TLC. Maybe they want to make a show about us.


  1. Its always annoyed me that you pay the price to see a doctor (who has actual medical experience) .. and pay the same price to get an intern..

  2. Ya know... TLC is not such a bad idea... lol

    I'm glad that there are some answers in sight. Hopefully the meds will work.

  3. You'd definitely make a splash on TLC's "Amazing Families" documentary! Goodness, at least they are closing in on the cause of the breathing trouble. Our thoughts and prayers are with you guys!