So as usual, I was not satisfied with things going well. I needed to know if they could be even better! I did the math and decided I was going to go for a third dose of carnitine. It will put Ayden Jane at a total of about 46 mg/kg.
For 2 days (today being the 3rd) I gave Ayden Jane a third carnitine dose at supper. I was worried it would be too much. That she would not sleep, or she would get edgy or her mind would race and she would not be able to organize the energy.
I admit, the first night there was not a lot of sleep. She was up several times and was even playing with the dogs during the night. The first full dose day was not as crazy as I thought it might be. She did go supper hard and then fall asleep - not unexpected. Her focus was actually improved though, rather than scattered.She managed to organize 4 other kids at the pool into playing a game of categories with her which was pretty funny to watch.
The second night she slept better, a bit restless - she came in with me while Gary was at work - but better. I was very curious how today would go. She did great! No lull, played independently for a long time with her dolls, took the dogs on a very long walk with me, swam hard in the ocean fighting rough surf and keeping up with some friends for 2 hours, more playing at home, helped clean up and read her magic tree house book wonderfully before bed.
So far, I think that the dose of 46 mg/kg/day is going to be the winner. She is eating 3 meals but honestly not really asking for snacks. Well, other than the fun blueberry/coconut milk push up pops we made today. Her energy has maintained with meals: breakfast between 7-7:30, lunch 11-12 and supper 5-6. If we have been super active, she may have an afternoon snack or choose to have supper early and late snack if necessary. It is wonderful not to have to take food with us everywhere we go!!
For 2 days (today being the 3rd) I gave Ayden Jane a third carnitine dose at supper. I was worried it would be too much. That she would not sleep, or she would get edgy or her mind would race and she would not be able to organize the energy.
I admit, the first night there was not a lot of sleep. She was up several times and was even playing with the dogs during the night. The first full dose day was not as crazy as I thought it might be. She did go supper hard and then fall asleep - not unexpected. Her focus was actually improved though, rather than scattered.She managed to organize 4 other kids at the pool into playing a game of categories with her which was pretty funny to watch.
The second night she slept better, a bit restless - she came in with me while Gary was at work - but better. I was very curious how today would go. She did great! No lull, played independently for a long time with her dolls, took the dogs on a very long walk with me, swam hard in the ocean fighting rough surf and keeping up with some friends for 2 hours, more playing at home, helped clean up and read her magic tree house book wonderfully before bed.
So far, I think that the dose of 46 mg/kg/day is going to be the winner. She is eating 3 meals but honestly not really asking for snacks. Well, other than the fun blueberry/coconut milk push up pops we made today. Her energy has maintained with meals: breakfast between 7-7:30, lunch 11-12 and supper 5-6. If we have been super active, she may have an afternoon snack or choose to have supper early and late snack if necessary. It is wonderful not to have to take food with us everywhere we go!!
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