Caregiver & Family
Perfectly healthy kids do have strokes!
On April 19th of 2012 I decided to leave work a little early because it was a beautiful day and I wanted to plant some flowers. My son's father also got off work a little early. It was rare that he was home during daylight! My sweet, incredibly intelligent 4 (almost 5) year old was playing at the neighbors house with his sister who was 7 at the time.
She came running home and said "Jerome can't walk or talk!". I said "Oh, he is just being silly..." She said "NO! Something is wrong with him." His dad and my teenage son ran to the fence and there was my limp baby boy. My teenage son hopped the fence and scooped up his baby brother and handed him to dad. He brought him to our front porch where we stood him up and he fell over, twice. He could not talk. I immediately started asking him questions~ nothing. He drove him to the local ER, it was only 5 minutes away. They saw us pretty fast.
At first they thought he had a seizure and administered Dilantin. He had a reaction (rash) to that. They did some basic test and then decided to send him to Mission Hospital in Asheville. They did test all night and then the next day finally concluded he had a stroke. A STROKE!!!! I thought our world was over. I didn't know perfectly healthy, brilliant children had strokes.
My little man was paralyzed on the right side and his speech was garbled. Hour by hour he started to improve. Speech was getting better, walking but dragging his leg a little, not really able to use his right arm at all. He did not know who his sibling were. He did not remember that we had just been on vacation. He could not remember his favorite music (Adele and Mumford and Sons). He basically lost about 1.5 years of his life.
I would put my iPod on his ears while he was sleeping hoping he would remember something. I am a hobby photographer and take TONS of pictures, I would sit and show him picture~ nothing.
After a few days in the hospital he started to get worse. Crazy speech, almost totally paralyzed on that right side again. An MRI showed that he may have Moya Moya disease. Basically constricting of the arteries and would require brain surgery. Within hours he needed to be flown to Boston Children. After a few day at Boston Children's they ruled out the Moya Moya disease (THANK GOD) and chalked it up as a bad read on the MRI. We remained in Boston for a few days under the care of the Harvard Pediatric Stroke specialist and then were released to come home.
Fortunately we have AMAZING insurance and a really cool center nearby in Asheville, NC, where my son could get all his therapies and specialist appointments. Thank GOD we both have amazing jobs that were totally supportive through all of this. I took a few months off work and my job because making my son better. We were at appointment 4-5 days a week. Everyday we could see improvements in him.
Our Cardiologist here happen to do a echocardiogram at a check up and noticed a little "something" and referred us to an AMAZING doctor in Charlotte . This was just in December, 8 months after the stroke. This doctor in Charlotte did an aggressive bubble study and found a PFO, patent foramen ovale, that typically closes sometime after birth. This had to be how that mean 'ol clot got to my son's brain and in the same procedure, this amazing doctor fixed it with The GORE® HELEX® Septal Occluder.
My son started kindergarten right on time. Just 4 months (!!!) after having a stroke. He tests at and above grade level. Though he has to work a lot harder at everything he does. He is on aspirin as a blood thinner. He still has weakness in his right wrist and trouble finding some words, like if he sees a triangle~ he calls it a pyramid... but that's OK! Emotionally he battles some depression sometimes and melts down easy. We have removed all dyes and processed stuff from his diet and have seen a big difference in the frequency of the melt downs. We fought hard and were able to get him OT in school. His school has one on staff anyways. This way he did not have to miss too much school for OT.
Everyday I try to make someone aware that kids have strokes too!!! But there is hope if your child has a stroke~ believe me!