So after several days of being back on Ayden Jane's dose of 500 mg of Carnitine in the morning I have had two observations. First of all, carntine is a very key supplement for her. Her energy has improved and she is back to not being concerned about food much. She just seems to have a consistent energy stream back.
So, of course my next question was should I increase the dose? Basically this thought was brought on by her having a reduction in energy and an increase in hunger/emotion after 4 pm. This late afternoon change is not necessarily new. I just accepted it as part of long school days or just a PWS thing. What I noticed was that with the low dose of CF, her whole day was more like her after 4 day.
I checked with Dr. Miller and at first she said she thought the dose of 500 mg was just perfect for her and I should leave it alone. Yeah... I listen, but that does not mean I don't plead my case. Dr. Miller finally gave me the go ahead to add a second dose of CF at lunchtime and see if it clears up the post 4 pm lull. I didn't ask her what dose because Ayden Jane swallows capsules beautifully but trying to hide CF in food is a pain so I just wanted to give her the full capsule. I also looked back and Ayden Jane was on a dose of 500 mg of CF in December of 2011 and I'm sure she is double that weight now!
So after a couple of days I am optimistic that I am on the right path. The biggest thing we noticed tonight was that Ayden Jane was talking super fast but totally clear. No stuttering or having to stop and think about what she was trying to spit out. She was totally happy and had no worries what so ever about waiting for supper even though it was a bit late. Her energy was also great - evidenced by her skipping all over the restaurant.
We will see what the next few days brings. Tomorrow may well be a long day, as we may hit the beach in the afternoon and horses in the evening.
So, of course my next question was should I increase the dose? Basically this thought was brought on by her having a reduction in energy and an increase in hunger/emotion after 4 pm. This late afternoon change is not necessarily new. I just accepted it as part of long school days or just a PWS thing. What I noticed was that with the low dose of CF, her whole day was more like her after 4 day.
I checked with Dr. Miller and at first she said she thought the dose of 500 mg was just perfect for her and I should leave it alone. Yeah... I listen, but that does not mean I don't plead my case. Dr. Miller finally gave me the go ahead to add a second dose of CF at lunchtime and see if it clears up the post 4 pm lull. I didn't ask her what dose because Ayden Jane swallows capsules beautifully but trying to hide CF in food is a pain so I just wanted to give her the full capsule. I also looked back and Ayden Jane was on a dose of 500 mg of CF in December of 2011 and I'm sure she is double that weight now!
So after a couple of days I am optimistic that I am on the right path. The biggest thing we noticed tonight was that Ayden Jane was talking super fast but totally clear. No stuttering or having to stop and think about what she was trying to spit out. She was totally happy and had no worries what so ever about waiting for supper even though it was a bit late. Her energy was also great - evidenced by her skipping all over the restaurant.
We will see what the next few days brings. Tomorrow may well be a long day, as we may hit the beach in the afternoon and horses in the evening.
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