Doose Syndrome

Myoclonic-Astatic Epilepsy (MAE) or Doose Syndrome is a rare form of childhood epilepsy that contains many seizure types and is difficult to control. Our journey started in January 2012 and this blog is to let family and friends follow us on our journey. I hope this blog also helps educate people about epilepsy and Doose Syndrome.

Michelle

Wednesday, April 11, 2012

Sickness and Seizures

About two weeks ago Joshua developed a fever, was very lethargic and sleepy and would not eat.  He had had a persistent cough that we had checked out previously, but it was not going away.  We took him to the pediatrician and he had a chest x-ray that revealed an upper respiratory infection and sinus infection.  He was put on antibiotics to help. 

Being sick or tired lowers a person's seizure threshold so any amount of sickness is problematic for someone with epilepsy as their seizures increase.  For several days Joshua's seizures were put into over-drive and he was having around 100 per day on some of the bad days.  The Myoclonic seizures that he has when he sleeps were very pronounced and happened often and since he slept so much during those days the seizure numbers really went up.  I held him once during a nap and he must have had a seizure at least every minute or 30 seconds for over an hour.  It is hard to get good rest when you are having constant seizures, but you need that rest so the seizures can be reduced (it is a vicious cycle).  Also during this time period he had a lot of Myoclonic seizures when he was awake and he usually has those when he was asleep so that was new for us as well.  I was EXTREMELY fearful during that week he would have another grand mal seizure because he was having so many of them and he was so sick.  Thankfully he did not, but I didn't get much sleep because I was watching him like a hawk. 

We have to be very careful to not let him get too sick before getting him on the right medication to get better as the added seizures were very stressful for us and very disruptive for him. 

I hope he does not get sick again for a long time!  He is doing better now and seems to be over his virus - thank goodness!

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