Mitochondrial Disease

Ok... We got some of the results from Atlanta back this week!

It's very complex. I'm in the midst of doing a million things & can't quite explain it all now.

Logen has a Mitochondrial Disease. He also has type 2 muscle fiber atrophy. He will start a mitochondrial "cocktail" as soon as we can find a pharamacy to compound it. There are some financial concerns, the docs say we will have to fight insurance (the doc's office is very willing to write them a letter and do what they can though) and medicaid won't cover this. As far as a specific Mito Disease, we are still waiting on all of those to come in. It could be many months. And, we may never know from what they said. We just know his mitochondria do not function normally. He's "highly probable" to have complex 1 and complex 3- and that's about as much info as we have. It could take nearly 2 years for the meds to kick in b/c they have to get into the muscle. And, there is a chance they won't do anything. As far as prognosis, we don't have one right now.

We are waiting for a big list of precautions from the doc, but were given a few to start with. Things like he can't have a certain type of anesthesia, he can't fast for long periods, no over heating, can't be around people with the flu (b/c it could take him down harder and longer), he may need to be hospitalized for even minor infections b/c of hydration and monitoring.

Please continue to pray for us. Thanks.

St Louis Bound (Again!) & Logen Update

Hey All! Hope you all are doing well... :)

We are on the road to St Louis (again!). Logen has 2 appointments on Monday. He sees the Neuro and Epilepsy Doc this trip.

In the past 2 weeks to 3 weeks he's started having seizures again, so we made a med increase. He's also been having some "quirky" little jerking movements, increased drooling, and just some random things I don't like. So, I was glad it started around the time for our appointments. (If it had to start at all...)

Logen was moved to a new school this year (b/c of injuries last year and lack of progress). So far, so good. He seems to be doing very well. He appears to be happy about staying there and I don't get that "yuck" feeling I got when he was at "the other place".

I will update after our appt! Please pray for good news. Our 3 month post-surgery date is Oct 2, so we *should* be getting something soon! I am getting sooooo very anxious.

Need To Vent!

I spent 3 hours at the doc for myself today. I am so used to doing this for Logen, that I am ok with it. I have accepted that. I have accepted that there's not always good news when we pack up and head to his doctor's appts. It's just how it is. However, when it comes to me- I've expected to go and leave without "bad" or "crumby" news. Today, I went into for my hospital stay follow up. We went through my labs, etc. I kid you not, that stack was forever thick. My labs were so messed up. Things were too high, and too low. So, the doc ordered all of those again today. The one I am most concerned with is the ANA-titer. Mine is too high. Everything else is too low. I guess I just sat there with that, could anything else possibly be wrong? There are several things this could mean. I'm not going there, we will just hope for the best. It has to do with your antibodies though. I got a referral to a Neurologist for migraines (that have been around since before the heart stuff), but I wonder if all of this stuff isn't related in some odd way. like all of Logen's weird stuff??? Doesn't it all have to add up somewhere?!?!
Anyway, that's my deal. I want to be fixed. I'm done with the bad. Oh, Saturday's call... yea, I'm just sick of talking about it. Not what I wanted to hear. A heart procedure is in my future. I will elaborate in the next week.
Our family is in the need of more prayers :) Thanks!