Jacob's Story-Part 2

September 16, 2010
We rushed Jacob to the nearest emergency room, they gave him a CAT SCAN and sent him to the University of Michigan-Mott's Children's Hospital via ambulance while I was saying my prayers that Jacob would be okay!
He was admitted to the Pediatric-Neurology department and given every test you can imagine: MRI/MRA, CTA, EEG, ECHO, EKG. The tests all came back normal.
The doctor that read the MRI saw a shadow on his brain and thought perhaps it could be a clot or tumor. That turned out to be false.
Then they noticed that his right carotid artery was quite curvy and maybe blood had gotten caught up in it and caused a minor stroke. They couldn't tell for sure since the tests came back normal, but for lack of anything else, they concluded that it may have been a cause of his strange symptoms.
They prescribed baby aspirin for possible cardiovascular causes.
His symptoms soon disappeared and he appeared quite normal, except for his gait. He was still walking funny, as if his legs were stiff and couldn't quite remember how to move correctly.
He was discharged on September 18, 2010 with a follow-up appointment in 4-6 weeks.
So, we gave him his baby aspirin every day. We had to cancel a dental appointment because they didn't want to work on his teeth while he was taking the aspirin. Jacob was in the middle of restorative dental work.
We wondered what was really wrong with him. Did he have a mini stroke? Would the aspirin prevent it from happening again?
It didn't.
All his symptoms came back on September 21, 2010. Same thing. Rush to emergency room, ambulance ride to UM. All the tests plus a spinal tap and a psychiatric evaluation. Everything normal.
Jacob was a mystery! I asked the doctors about Lyme disease, multiple sclerosis, muscular dystrophy, allergies. No, they said. None of those.
It could be complicated migraines, they said.
Really? I looked it up on the internet and sure enough, Jacob had many symptoms of an unusual type of migraine. The speech and walking thing but what about the weakness and the wierd throaty sound?
He was sent home with a prescription for a daily migraine medicine and physical therapy to help him regain his normal gait.
What will the medicine do? Fix his brain? Get rid of whatever it is that causes these strange symptoms? We will have to wait and see. And are migraines supposed to happen every single day?
Jacob got worse. He would have an episode every single day. Anywhere from 1 minute to lasting all day. Sometimes his head would hurt. Other times, he would just fall down and lay on the driveway or wherever he would be and appear to be passed out. His legs would give out on him, he started talking like a baby, he would get restless and jump around like an animal. He would be scared and think the "man" on the computer screen was going to "get" him. He would tell his dad that 'he's mean'. He would growl and throw things. He would cry for 15 minutes at a time. He sometimes seemed spacey and would stare at his hands. He would moan and roll around on the floor. He would scream and bang on the car window with his fists and struggle with the seatbelt until I was worried he would choke himself. Everything was so completely out of character for Jacob.
We would put essential oils on his head, rub his back, and take him for car rides to calm and soothe him. Lenny would end up carrying him to bed when these episodes would end and he would be limp like a rag doll and then sleep all night. At times, we wondered if he was still breathing. He seemed so still. I cried myself to sleep many nights!
The medicine seemed to make him even worse. He started hallucinating and acting like he was choking. It scared us! We took him off of it after starting and stopping a few times with the same choking, hallucinating results! Something was going on inside his body and we didn't believe the medicine was going to help him at all! We wondered if our son would ever be normal again!
Now what do we do? Our poor, little Jacob was hurting and no one was able to help him!
We were on our own!
I cried. And prayed. Dear God, show us how to help Jacob. We don't have a clue what to do!