Good News

*One morning minutes after the kids woke up they helped themselves to otter pops, but because it was too cold they decided to dress the part. This picture was taken in June.

Now back to topic...

We took Quinn to meet with Dr. H on Monday {bio-chemical doc}.

It was down right fascinating.

He went in to incredible detail as to what exactly is going on inside of Quinn's cells.

Bio-Chemistry was never one of my favorite college classes but I was glad I had a basic knowledge of what what he was talking about so that I could do further study at home.

Here is the "dumbed down" version that I was able to understand.

So we start with the process of Glycolosis-the conversion of sugar into ATP (or energy). This is a complex process that happens within the cell in what is known as cytoplasm (or just the fluid inside the cell). The idea is: once the ATP is formed it transfers into the Mitochondria (the power house inside the cell) where it undergoes the Citric Acid Cycle- where more energy is released as well as a bunch of other things including CO2.

Here is where things are going wrong for Quinn:

During the glycolosis process things are going fine until just before the ATP heads into the Mitochondria. For some reason the ATP isn't getting through as well as it should and there are acids that are being released namely Butyric Acid. Normal levels of this acid should be within the range of 0-30; Quinn's levels are at 209. Without question ridiculously high. There are a few other things that are not quite in balance but they aren't as big as this one.

Dr. H believes that these imbalances are the main reason for Quinn's seizures!!!!

I can't tell you how wonderful

it is to have a possible cause to all of the madness!

So the next part of the visit was spent discussing how to fix the problem. He explained it like this:

If your car won't start what is the first thing you do?

Fill up your gas tank.

Once the gas tank is full then you turn on the engine.

The gas tank is the Butyric Acid as well as helping the ATP travel into the Mitochondria.

So the first thing we started him on was Acetyl-L-Carnitine. It will act as a vehicle to help get the ATP inside the mitochondria. The second thing we are starting him on is a Vitamin B Complex. It is derived of B1, B3, and B6. This will act as a huge aid in reducing or neutralizing the acids that are so high {butyric acid}. There is also a vitamin called Folacal which will do the same thing as the vit B. Then of course we will put him on Fish Oil. This one makes me dry heave just thinking about it. The smell...ugh.

He explained that it is going to take about a month to "fill up the gas tank". After a month of being on all of the supplements, we will have his blood drawn for a second look at those acid levels. If they have improved we will then move "inside the Mitochondria" to fix the problem there. He believes that once we are "inside" we will notice a huge difference in seizure control. He also said that once inside, it's smooth sailing; it is the Acids that are the tricky part.

So....now we pray that Quinn's cells will not resist the Vit B. We pray that we can get the levels within normal limits. We pray that this process will help his little cell. We give thanks to God for such a miraculous body he has given to us as well as intelligent drs who can decode it!

WOW! Right? Isn't this so exciting. Now I realize I shouldn't get my hopes up to be let down, but at this point, we haven't had anything this promising which is great cause for excitement!

I am so incredibly grateful for Dr. H for putting in the time and effort to go way deep down inside at the very root of the problem so see what is going on...instead of just putting another bandaid on a bleeding brain just waiting for the saturation to once again spill out.

We are blessed.

here is a diagram of the process i tried to explain!

By way of update: Quinn's seizures are doing so much better! We are struggling to keep the Tonic Clonic (or grand mal) under control. But I haven't seen an absent seizure in 5 days. He is only having 1-3 seizures a day which in and of it's self is miraculous. Just a week ago we were nearing 1000per day. So needless to say Quinn's sweet personality back. We were able to go off the keppra on sunday which was wonderful. This medicine was the personality alterer. It will take about a week to have the keppra completely leave his system but we are so glad to be done with that. He is spunky. His memory is impeccable and I feel that we have regained all cognitive developments. I feel so blessed. It is Wednesday morning and i have not seen anything at all...yet!

Thank you all for your sweet support. I can not tell you how much all of the messages, comments, emails, and phone calls have meant" {even if I don't respond}. We are so so blessed.