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!

3 comments:

mina said...

Hmm, I'd probably be thinking about a new medication around about now.....

Sounds like there's quite a lot going on, the eye thing really stumps me. Well, at least all the serious things have been ruled out.

And yay on the growth!

Sarah said...

Goodness... just sounds like such a high dose for such a little guy. So crazy how his little body handles it though. He is such a cutie - I hadn't seen a pic of him in a long time.

GoofyJ said...

It does sound like such a high dose for the little guy. He is adorable! And he has just been rocketing up the growth charts! Yay!