Yesterday was a very long day. Grayson had two doctors appointments where we were set to receive several pieces of big news: the results of the MRI he had in June, and update on his chances of getting in the clinical trial for Epi 743 (the drug currently being tested on Leighs and other Mito patients), and if Grayson will have to be on oxygen.
At our appointment with G’s Mito doctor, we discussed:
- The wonderful, great, shocking (to me) news: The MRI results had not changed since his last MRI in May of 2012! This is amazing because his brain is no more diseased than it was a year ago, even though his symptoms have obviously worsened. Dr. K said sometimes MRI results do not correlate with what is going on symptomatically, and Grayson’s regression might be a result of things happening in other parts of his central nervous system other than the brain.
- The bad (old) news: Grayson’s brain is obviously very abnormal. Dr. K was nice enough to take me to her office, show me the scans, and explain in detail what I was looking at. I saw the lesions and undeveloped white matter, the white spots that are supposed to be dark. It made me sad.
- Since Grayson continues to have seizures every few weeks, we are upping his medication dose. Again.
- Their office is working very hard to get Grayson into the clinical trial. If he is accepted, however, it means a skin biopsy (possibly needing to be done in California), seven trips to Maryland, and lots of blood draws. He would get a placebo for 6 months and the real thing for 6 months (of course we wouldn’t know in what order), and we would have to take him off CoEnzyme Q10, one of the main parts of his Mito Cocktail. So it would be a lot to schedule and deal with; our prayer is if it would really help Grayson and lengthen/improve the quality of his life, he would be accepted, but if not, we don’t want to put him through all that.
- The social worker for the clinic asked if we were interested in doing Make A Wish. Grayson would qualify, but I told her we most likely want to wait awhile, especially if we are going to take a trip. The thought of traveling with my crew right now gives me a lot of anxiety. Maybe in a year or two, when Charlotte is a little older and at least walking, we will start to think about what we would want to do for Grayson.
After that appointment, we hurried to the car and drove across town to Grayson’s pulmonology appointment.
- Grayson is going to start receiving oxygen at night. Dr. J said during his sleep study, G responded well to the oxygen, and since Mito kids in general seem to do well with it, we should try. She said if after 2 or 3 months we don’t see any difference in his sleep, seizures, or comfort level, we can stop.
- Other than that, Dr. J was very pleased with how G looked and sounded. We are so thankful that he doesn’t have any major respiratory issues yet.
It was an exhausting, long day but we went home with good information and a plan going forward. And Grayson took a long nap all afternoon, which was great!