We were due...

It has been 5 months since his last but, Miles had a seizure on Sunday and was admitted to TCH for observation. Thankfully he only had Valium this time! He was crazy and belligerent when he woke up initially but went back to sleep for a LONG time. When he woke up again he was such a doll! He was so sweet to everyone and smiled a huge grin when anyone came in the room! He also opened his mouth right up when the doc asked to see his badly bitten tongue (from the seizure) - this tells me he was still drunk! He doesn't open his mouth for the docs normally - not at all!

We were released yesterday around 2:45 or so...well we were released a teeny bit earlier than that but we were in the middle of eating lunch...then we ALL fell asleep! Anyway, this seizure lasted only about 45 minutes with only about half of that with solid convulsions. He starts with this gaze and is still responsive - even while going in and out of convulsing he is responsive to a point. It always scares the crap out of me cause you think he might be completely aware of what is going on and that always makes me incredibly sad. His dad said that the EMTs this time were great which is awesome!

Next week - the 27th - is the MRI...send good thoughts for good results! I am not sure what good results would be yet...MG is progressive...brain tumors suck...Maybe good results would be that everything is clear and the eye stuff is completely unexplainable and won't ever be a problem for him...oh, and one day just clear right up, never to be seen again...is that possible? I hope so!

Myasthenia Gravis or Brain Tumor??

Miles had surgery on the 6th for his undecended testicle. It went really well! We did get the anesthesiologist we requested so that was great - it makes a huge difference for Miles when he is familiar with the doctors, at least it seems that way. He and Dr. Campos went skipping down the hallway to surgery together (not kidding, like really skipping - it was so cool!).

Next on the horizon for my little man is to get this MRI done! We are #1 on the cancelation list which is good. Now I just have to keep him healthy enough to have it done! Lots of breathing treatments should help with that.

I talked to his pediatrician about the eye stuff and this is what was said...Myasthenia Gravis is a possibility. This is an autoimmune disease that attacks the voluntary muscles. It causes extreme fatigue but gets better with rest. It can be debilitating for some but most people live a pretty normal life :) The treatments for it include an immunosuppressant, IVIG (I think that is right) or possibly removing the Thymus Gland. There are others that I can't think of right now. This disease can be exclusively ocular - which might be the case with Miles. We have to test him for it...however...it is apparently extremely rare for children his age to have this disease and we aren't entirely sure which tests can be performed on him just yet. The doc is getting with the rheumatologist to discuss Miles and will get back to me soon. The MRI is to rule out a brain tumor. Frankly, I don't like either of the options and I am praying that it is just a crazy fluke and he just has a funky eye :)