Last night sucked

>> Thursday, September 18, 2014

By 10:00pm Bug was still all sorts of hyper. Clapping his hands, jumping up and down, spinning toys incessantly. So, we broke out the melatonin.

Before you criticize, let's recap:

Bug has a Folate Autoantibody, Bug has Cerebral Folate Deficiency as a result, he does not produce enough serotonin on his own. Serotonin converts to Melatonin and that helps us sleep. Bug does not get enough to help him sleep.

He needs melatonin every so often. We try not to give him it every day anymore, now that he is getting the Leucovorin, he seems to need it less, but last night...MAN...did he need it.

By 11:00 it was helping him and he would drift to sleep. For about 10 minutes and then he would sit up suddenly and clap and chirp and be all....happy. It got old by Midnight.

At Midnight he fell asleep and at 12:10 he had his first seizure. Mild but there it was.

He slept next to me all night and he tossed and turned a little and if I moved AT ALL he would wake up and clap. At 3:30 he had another seizure, 10 second tonic.

4:45 he had another and again at 6:00.

It was a restless night. What was different you may wonder? Nothing apparent. This just happens. This is epilepsy. This is Autism, this is a non-verbal child that will never tell me how he feels. It may be he drank a lot of water, it may be he didn't get enough vegetables. We don't know. And living with that, takes adaptation and understanding and an amazing amount of patience. Especially at 3:00am.

He made the bus, and seemed to be happy. Nothing to do but see how the day unfolds and try not to think about it all the time.

Sign me up for nap.

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Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

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