Purple Power.
05/02/2013 15:20
Hello All,
So I was going to write about Bullying today. Then my son had a seizure. So now I am going to write a little bit about Epilepsy and the road we've been on so far.
In February of 2008, I welcomed my son. I had a difficult pregnancy and both us nearly did not come home from the birth.
I noticed upon bringing him home that he would have these "shaking" spells, as if he had caught a chill. Pediatricians and caregivers shrugged it off as exactly that and dressed him warmer. Mind you he was born in California.
When he was about 3 months old, I walked in on him in his bassinet completely blue. We went to the hospital, he was tested, he was released about 8 hours later but never admitted.
After moving to Wisconsin around the time he was 6 months old he had another breathing cessation. He was again kept for a few hours and I was given paperwork on sids. I was told he had reflux, he did this, he did that. I had a gut feeling something was amiss, but the doctors couldnt be wrong now could they?!
At 15 months of age. Right after church. He started seizing in his car seat and this time I KNEW.. I didnt just think, I KNEW this was a seizure. I had 9-11 on my cell phone as I pulled into the hospital parking lot, I probably broke at least 100 laws going the 1 mile between my Church and the Hospital.
He seized for 2.5 hours. 2.5 hours at 15 months old. Now a seizure is like getting into a head on collision combined with shaken baby syndrome combined with getting your brains hammered from the inside. They tried to get an iv in him and couldnt. He ended up being put in a temporary medical coma while they administered antiseizure medications. During all of this I was having contractions (I was 9 months pregnant with his little brother)
24 hours later he was discharged and I was told it was a febrile seizure. 48 hours after that, we were playing outside in our backyard. He was playing one minute, the next he was on the ground flopping like a fish. We were back at the hospital. This started a journey that is now almost 4 years in the making with neurologists, occupational and behavior therapists, speech therapists and more.
He is 5 years old. Epilepsy is his life. He has been bullied due to having seizures already. He has lost friends because of it. Not because the friends had an issue, but because their parents did.
He cannot be outside in weather over 70 degrees without a special vest. Neither he or his brothers can have toys with flashing colored lights. He cannot handle large amounts of stress or anxiety. These are all seizure causes for him.
He has Complex Partial Seizures Secondarily Generalized Epilepsy Causes Unknown
This photo was taken at Childrens Hospital in Aurora, Co where he underwent an EMU test. The bear is courtesy of a partnership with www.tgbears.com and https://www.angels4epilepsy.org/
They have a support group here that has been almost my saving grace on some days:
I will discuss this in further detail in the near future.
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