With this medication (ACTH) we can have several side effects. One of the effects can be sleep pattern changes. He is up until about 1 AM and sometime later. He's up at 6, maybe 7 if I'm lucky. He sometimes takes naps, but we usually have busy schedules....this has been this weeks:
*Monday~ drive 60 miles each way to get his helmet adjusted
*Tuesday~ physical therapy/dropping grammy Forni off at airport
*Wednesday~ I drove to four pharmacy's trying to get his medication & in home therapy
*Thursday~ physical therapy & lab draw at hospital
*Friday~ pediatrician appointment
Those are just Matthew related things...I worked in between that, unpacked, etc.
We went a week without a seizure. Yesterday we were instructed to decrease his Keppra (ONE of his anti-seizure med) from 2.0 mL to .5 mL. He has been having seizures since last night. It's really frustrating because I thought we were on the right track and then we have a set back like this. I am going back to his 2.0 mL and hopefully we'll be better. Oh and hopefully I'll get to go to sleep soon. But, to see Matthew improving, it's worth it.
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That sounds really frustrating. I guess you just gotta try and enjoy the time in the middle of the night playing with Matthew. Perhaps his doctors and pharmacies would accomodate you and set his appointments for around midnight. :)
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