Owen had a follow up Genetics appointment on February 7th. We've moved all follow up/maintenance appointments to The Center for Children in Lowell since Owen in doing well, our head geneticist still oversees everything, and it's a lot more convenient to drive 20 minutes rather than 3 hours. Arkansas Children's Hospital flies up different geneticist trough out the month and we have finally found one that we mesh with...Dr. Elizabeth Sellars! She was up to date on the happenings of Owen, knowledgable about VLCAD, and actively listened to our concerns. We still love Dr. Kahler and always will, but it's great to have someone here that we can trust as well.
As usual we met with the geneticist, Dr. Sellars, then the nutritionist, Dallas, and finished the appointment up with Owen's least favorite part...lab work! (He's old enough now and has had enough of these appointments, that he knows what getting "labs" drawn means). Unfortunately the blood work is the main reason we have these appointments so frequently and the only way we can truly know how Owen is doing.
Our main concerns going into this appointment were: 1) Owen's continual complaint of leg pain that frequently wakes him in the night and has become more frequent in the last 3 months 2) Owen's mood swings, which have also become more frequent and consistent 3) Our ongoing battle with insurance to cover Owen's formula (MCT Procal).
The results: They think that it's time to increase Owen's MCT procal from 2 packets a day to 3 packets a day with 1 at breakfast, lunch and just before bed. He has always had it first thing in the morning and again at night, but they are thinking that he may be fasting too long at night....so they are asking that we give the last MCT procal right before bed. They also feel that because he is so active (like every other 3 year old) that additional MCT in the middle of the day would prevent muscle break down and eliminate the leg pain he has been experiencing. As for the insurance battle, the nutritionist and geneticist are writing additional letters of medical necessaity to help everyone better understand Owen's disorder and that the MCT procal is life sustaining not just a nutritional supplement.
Owen will continue on his low fat/high carb diet with a few changes. He will stay at 22-24 grams of fat a day but we are also going to try and add more "complex" crabs.
We got his lab results back about 2 weeks after the appointment....most everything looked good but his cpk levels were slightly elevated supporting their theory that he was having some muscle break down. For now, we are documenting daily activity, keeping a food journal, and documenting leg pain and mood swings to see if there is any correlation as well as battling our insurance company.