One door closed, another opened: Stoke vs. MT-APP6

So many tender mercies with what we've found with this new mutation. 

I feel like it has the ability to open new... Maybe better doors? For him.

So as devastating as it seemed to get that news Tuesday...I won't if looking back 10 years from now it will make more sense. 


What I've learned so far about mt-atp6:


1) we've probably made the best medicine decisions for him (depakote is contraindicated for mt-atp6 but was our next choice as it's now considered the #1 Dravet drug 

2) general anesthesia is really hard on his body. Specifically the gasses and propofol, what they would have been using for the trial

3) keto diet is one of the best diets to have him on (soooooo validating) 

4) the investment in Dr. Frye has been  worth it. It's validated everything we've done with him. 

5) sicknesses are so so hard on the body with mt-atp6. This explains so much- the extra seizures, how he is sick twice as long as everyone else and usually needs antibiotics. We *might* now, hopefully get through to our insurance that sub-q igg will help. This will support his immune system. I'm hopeful to say the least


Dravet is a journey. It will never stop, we will always be looking for the best treatments for him. 

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