Saturday, January 15, 2005

Too many opinions

My son Braden is 5 years old he has a severe speech problem, and has had seizures and masses in the brain and many other issues enlarged tonsils, right side of his heart enlarged...some of these issues he has overcome but the one thing he has never had is a diagnosis. Talk about frustrating. It seems every doctor has an opinon and each is of course a little different than the last but no one knows for sure what the cause.

Last week we started him on a seizure medication for over a year we have been concerned about staring out spells Braden is having but they said his EEG during the staring spells were normal except for these bursts that mean a seizure could occur but didnt so it was not neurological. Now after months and now Braden is starting to have weakness in his left side and some small issues that were found by his physical therapist now they say um maybe they are neurological and are just coming from so deep in the brain that is why the EEG just showed bursts but not actual seizure activity. The key is "maybe"...ugh I think I could fight this so much better in my mind if I knew what I was fighting give me a word a name I almost dont care if they made it up...well I do but you get my drift I want a word to associate.

I have to say that Braden is our blessing daily as is our daughter Brittney. With Braden from birth (premature born at 28 weeks) he has been a fighter. He has had procedure done on his brain and then used the recovery room bed for a trampoline. He is a fighter nothing gets him down he has a dimpled smile that melts your heart and even though his speech is delayed he can still get his point across and basically let you know what he meant even if he just meets you.

It is just frustrating because I feel that they just have a checklist of maybe's and are crossing them off as they try a new med or a new procedure that doesnt work. Last week's try at medicine had a severe allergic reaction so we are back to the drawing board. As of February we will have a new doctor involved but I am afraid it wont be an answer just another opinion.