MCT Oil Continues to Make Improvements

 I started MCT oil over Christmas break. As I said in previous posts I pushed hard and went up way faster than I likely should have and we did pay with a few consequences.  Mainly Ayden Jane running 1000 mph and then crashing...

I managed to push the dose to where I wanted and then it was time to just let the effects settle in. I have always known that that her brain worked extremely well on fats.  That's one thing that is easy with her, you can see on the outside what effects different things are having on the inside.  When she was little it was avocados, almonds and nut butters.  Later I added coconut oil and was more intentional in what I was doing because I was learning the why's behind the effects. (if you are super interested or just can't get to sleep one night you can go back to the beginning of this 7 year journey and read how it unfolded).

I posted 2 pictures of Ayden Jane's writing. They look much like the comparison of the beginning of school and the end of the year.  They are lists Ayden Jane wrote of her weekly spelling words. Each was done the first night with the new words, so no practice.

Here is the amazing part. The first one was Monday January, 5.  It was the first day of getting Ayden Jane on the full dose of MCT oil.  As the week went on I saw some improvements in her writing which I thought was remarkable enough.  After all, we have struggled with writing for what seems like FOREVER.  (okay, she is only 7, but as AJ would say, "I have worked on this my whole life!")

The second picture was taken January, 12. That's right, just one week apart!! I keep staring at them. The brain/neurological system is fascinating! This shows me once again that the abilities are all in there.  The connections are there if I can just keep finding ways to fuel that brain.

More on MCT

So as I said on the last post, it is recommended to start very low and raise slowly when using MCT oil. I know this to be true because I did not listen!

My biggest concern was with gut issues. Since she was not having any problem there I went ahead and upped her dose quickly to get it where I wanted over Christmas break.  First bump proved to cause a few sleepless nights. Second bump a bit more of the same.

Dr. M told me to slow down or Ayden Jane would get exhausted. Yep. She was right. The big bumps in MCT had Ayden Jane running 1000 mph. Constant activity, over firing brain, running into things, bouncing, squeezing, seeking.... And then the crash. Over emotional. Oh the drama... then crying herself to sleep at 5 pm, woke up at 7:30 and had a bit of supper and asked to go to bed!  She slept through until 6:30 this morning and wow!!  Back into high gear.

I am hoping she was not predicting this would happen over and over... I guess I'll find out!

MCT oil

A while back. I mean a long while back. At least a year back, I tried giving Ayden Jane MCT oil.

Wait, let me start with a little background. MCT oil is a medium chain fatty acid that is derived from coconut oil. Several families have used it with great benefits cognitively and in energy. It also tends to be harsh on the gut so it needs to be started very slowly.

Now, back to my story... Over a year ago I tried giving Ayden Jane MCT oil. I gave her a small dose and she proceeded to fall asleep. Next day? Same thing. And yep, three for three.  It was obviously not giving Ayden Jane the typical energy boost. It just made me uncomfortable so I abandoned ship.

I have been thinking about it and wanted to give it another shot. I decided the two week break where Ayden Jane would pretty much be attached to me 24/7 would be a good time.  I started low. In fact, the first day I only gave her 1/4 tsp. Over the two weeks I have managed to get her up to 4 tsp split out over the day.

I give her 1 1/2 tsp in the morning (actually going to 2 tomorrow). 1 1/2 tsp. at lunch and finally 1 tsp around 3 pm with her after school snack. Getting it in her lunch now that she is at school is a bit tough but until I can get her single doses up to where I can do before and after school, I will just have to figure it out.

So what have I seen as a result? Well, I had to go up pretty quickly because I wanted to get her dose up towards where I wanted in the two weeks. The rough patch came during the second week when she started having a bit of trouble sleeping. Basically her brain just kept going like crazy even at night. She was wide awake and had important questions or vivid dreams that interrupted her sleep. It took a few days for that dose to settle in and I think I like it. She is back to sleeping well and seems to have great mental energy all day long.

I checked with Dr. M about dosing amounts and tips. She said that there weren't really dosing guidelines per se but that she recommends 2-3 tablespoons spread throughout the day. Honestly, I was really surprised she was talking in tablespoons! We are trying to get there. Also, she said that there is some evidence that shows MCT has a ghrelin inhibiting effect. This is an awesome thought for PWS as the levels of ghrelin are know to run high. (thought to be a piece of the hyperphasia puzzle or at least a clue)

Starting tomorrow I should be getting close to 2 tablespoons. Here's hoping it goes smoothly.