Friday, January 09, 2009

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 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 :)

1 comment:

mina said...

Oh Becky, I'm with you. Hoping for a crazy fluke or a funky eye. Sounds better than either of the other options! Thinking of you and Miles.