Carnitine

We have been supplementing Ayden Jane with Carnitine Fumarate since she was about 9 months or so. (Shortly after diagnosis) In the beginning, since I had no guidance other than the internet, I researched very carefully the dosages and administration of all the supplements I gave her. It was a bit overwhelming, but in the long run it has been good. I have a decent understanding of what each supplement is for and how it works and what it works with... Since all of that I have gotten a bit lazy. AJ has obviously gotten bigger and her dosages likely need to be revisited. I once was very careful to be sure all doses were split 2 or 3 times a day. Then, over time, it was down to just morning with supplements. Carnitine was one that we had tested in her lab work at the sibling study and sure enough, it is low. It seems to be a pathway that is truly impaired for AJ.

First thing we are doing to correct this is that I am going to stop being lazy and give her the second dose each day. Carnitine is one supplement that definitely is better to split doses as the body can only absorb so much at one time. We are giving her one 500 mg cap in the morning and 1/2 of one at night (250 mg). That is a pretty significant jump, but still not a huge amount by dosing standards. I asked Dr. Miller about adding some acetyl carnitine (ACL) to try to hit the pathway from every angle. She thought it was a great idea and is sending me a script for it. That will be nice so that I don't have to worry about trying to dose it myself or find a good source...

So far, I have given her the night time dose for a couple of nights. She did have an amazing day today! Here are a few highlights. She really got into pedaling her bike. In fact, she went up the hill at the end of the drive and across the really bumpy road with not problem! Until now she would hit the hill and was stuck. She 'self therapized' by doing wall push ups and 'hand stands'. I am having to make her eat. Weird.

And the funny story of the day. Gary and I were talking in the car on our way back from Mckenna's soccer game. Ayden Jane always wants to be a part of the conversation so she tries to keep up or just asks random unrelated questions so we will talk to her. AJ started to call, "Dad... Dad..." When Gary finished what he was telling me he asked AJ what she wanted. Her answer, spoken slowly as to enjoy the center stage, "Well, I don't actually have a question."

We will see what happens when we get both forms of carnitine running! Yikes!