Results

We finally got our results from Cleveland: Mitochondrial Disease with a secondary neurotransmitter disease. The neurotransmitter disease is treatable. Not curable, but treatable. They'll start him on something for that after he has a spinal tap to determine exactly which neurotransmitter disease he has. They'll also be starting him on something called a "mito cocktail" which is basically an assortment of vitamins and supplements meant to try to slow down the progression of the disease. There is no real prognosis with this disease because it's so different for every child. We'll most likely be going back to Cleveland for a muscle biopsy in the next few months.

We went to Mayo at the beginning of the week for Emeric to see the GI and have an endoscopy done. The endoscopy came back essentially normal, just a couple small things there. We did figure out(hopefully) why he's losing weight. He has a bacterial infection in his colon. He's on antibiotics for that for 14 days and then they'll re check his stool. If the infection isn't gone he'll have to be on weeks and weeks of antibiotics so I'm praying it's gone and he'll start gaining more weight.

The girls came with to Mayo and they were thrilled. The Ronald McDonald house was full so they put us in a room for a discounted rate. The hotel had a waterpark so the girls were really excited. I was glad I decided to take them. I think they were getting tired of being left at home all the time.

We took him in yesterday because he's sick. He's running a fever and it came on really suddenly. After 2 chest x-rays, blood work, a strep test, etc. they can't find anything wrong. The doctor was actually more concerned since she couldn't find anything than she would've been if it would've been something obvious like an ear infection, or a cold. They said we could take him home but if he got any worse they wanted to admit him. Thankfully he didn't. Now this morning he's still pretty sick but his fever came down with Motrin so that's good news. Yesterday at the clinic he had 2 myoclonic(jerking) seizures that I'm assuming were from the fever. I'm really hoping that's why and that he's not going to start having that type of seizure now. :(

That's my update for now. The girls are screaming at each other and if I don't go throw them in their cages now they'll wake Emeric up.(that's a joke of course! ;))