Friday, March 20, 2009

Miles had an appointment with his neurologist Dr. Fernandez yesterday. His trileptal levels are low again. In January when he had the seizure they were at 5.5 and in February when we followed up they were 3.4 (or 4.3, I can't remember). He is supposed to maintain a steady level between 15 and 35. Dr. Fernandez said that he processes the trileptal through his liver too quickly. He wants to raise the dose again (AGAIN!). So he upped it to 10mls BID - which is 1200mg/day! (Aunt Christy, don't you take 1500mg/day at 32yrs old?) He said there won't be anything to worry about with that quantity of meds in his system (really?) except him being tired. Miles has never really gotten sleepy when he has had his trileptal - well the very first day he took it he got sleepy - in Oct 2007 - and we have raised the dose 10 times since then. With this low level of meds in his system he could really have a seizure at any time. He said it takes 10 days to really get in the system and get a good level. We will check it in 2 weeks and see where we are. I put a call in to the pediatrician to get her take on this. Do we just continue to raise his dose or should we find something else that works for him? The normal dose of trileptal is 25mg/kg and now Miles is at 70.5mg/kg! Almost 3 times the normal dose. CRAZY!

After the appointment we did the labs from Dr. Feig - the renal specialist - he checks a complete metabolic panel every time we go. We saw him earlier this month and couldn't get any blood on the first try. Let me tell you - Alma cream is the bomb! This was the first time we used it and it was great! There were still lots of tears but mostly because of fear of past experience but he did great and they got him on the first stick! Oh yeah, Renal went well. His BP looks great but because of his severe regurgitation we will keep his meds as is because coming off the meds could speed up the timeline to the next surgery and we don't want that.

Went to see Dr. Lai the opthamologist. Still no clue what is going on with his eye. Not nerve palsy, not a tumor, not muscular and does NOT think it is myasthenia gravis :) That is great! What the heck is it? check out the pic. Overall it doesn't seem to bother him except the slight head tilt.

I think that is it...oh, since the undecended testicle surgery in January Miles has grown 2cm! and gained 2kgs!!!!!! very cool!

love to all!

Thursday, March 05, 2009


Sorry I am SO slow at updating the blog! The MRI showed little change from his last MRI which means no brain tumor! (yeah!!!!) He does have hippocampus sclerosis but so do 65% of epilepsy patients, some damage to the nerves in his white matter, inflamation in his paranasal sinus and mastoids and NO 4th cranial nerve palsy.

We saw Cardiology in February - everything looks great! A little more narrowing to his conduit and valve and the valve no longer works but he is tolerating all of that very well and won't need surgery this year! We will see Dr. Justino again next year :)

We followed up with the eye doctor to get his take on the MRI. With no nerve palsy - what the heck is causing his eyes to do that thing? Well, Dr. Lai didn't have any answers for us except that he thinks Myasthenia Gravis is a long shot (thank God!) becasue the symptoms are severe from what he says. He has been the first to say that but he said that Miles' respiratory system would tire out during the night and he would wake up gasping for breath and that he would have extreme fatigue, and his eyes would droop. We don't have any of that so I feel a little better about the possibility of MG. The neurologist is next on the 19th - he was the one that said MG in the first place so lets see where he is on it. Miles had his thymus gland removed during his open heart surgery - which is one of the treatments of MG. I asked that if he has already had it removed could it be possible that he is already being 'treated' for it and that is why we don't have severe symptoms? (Sounded logical to me) He looked at me like I was speaking in another language so maybe I didn't come across. I will ask the neuro the same thing. Anyway, concensus from the eye doc is that we don't know why his eye does this. It isn't muscular, it isn't nerve palsy, it isn't a tumor, he doesn't think it is MG. His head tilt is only about 5 degrees so far and he doesn't complain of seeing double very often. So we live with it for now I guess. We go back in 6 months and if it worsens to the point that his head tilt is about 10 degrees then we can do surgery. My question there is - surgery on WHAT? His eye I know but if it isn't muscular would that do any good to cut and reattach the muscle? (no!) Who knows...I sure don't.

Riley is doing great! Just finishing up his TAKS testing this week (for those of you from KY - that is like the KEST testing we used to do...a baloo is a bear, wuzzle means to mix, a yonker is a young man - you know you remember that!) He is so smart, and so fun and silly (sometimes too silly!) and he and Miles love each other a ton! He is the best big brother and has gone through so much with Miles - often times not getting the attention he deserves. God picks very special children to be the siblings of chronically ill children! He has such a loving heart - we are very blessed!

I will try not to say away for too long...