Well it has been a week since my last blog…..the reason being our son Jonathan had an episode at school. The neurologist calls it “tremors”…..but I feel it is seizures.
On October 27th at 11:23 a.m. my son sent me a text that he was feeling weird, his hands were shaking and he was feeling really weak. I told him to get to the nurse. I waited to hear either back from him or the nurse. After 10 minutes I called the school clinic, the nurse informed me the paramedics were on the way there. When I arrived at the school both paramedic and fire trucks were there. Besides Jonathan lying on the cot in the clinic there were at least 6 other firemen in that little room. Normally when he has one of these episodes his body twitches all over, his fingers come together like a crab claw, he can not speak and stares off. But this time there was no twitching and his whole body was contorted and his mouth was wide open. (It was locked in place.) I have never seen him this way before. The paramedics had already started an I.V. and were giving him Valium to try to get his body to relax. He was almost catatonic. I told them he needed to go to hospital and be checked out by the doctor.
I met the paramedics at the hospital. We were there for about 4 hours. Finally they gave him some Ativan to see if that would get his neurological system to relax. Normally an episode could last up to an hour before he would be back to normal. This time it was almost 21/2 hours before anything started to happen.
Yesterday I followed up with the neurologist office. Now this is where I am getting a little upset. We have been going to this doctor’s office since 2013. The nurse practitioner came in and we were good. She checked him over and said let’s get an eeg. I’m like no problem we have done this before. Then she proceeds to read his chart and there is no diagnosis in his chart. She asked why they were giving him the topamax….seriously…..I began to get really frustrated. Then I asked her some questions about what could have triggered it…her answer was probably the sinus infection he was being treated for by his primary care physician. Ok so I asked for information about seizures….she gives me papers on epilepsy…..she says having seizures is epilepsy. She gives me this black folder with all this information (they had never offered this to us when we first began there over 2 years ago).
The following is a paragraph from this packet:
“Epilepsy may develop as a result of brain damage from other conditions such as stroke, head injury, abnormalities that occur during brain development, and metabolic disorders among others. Epilepsy is usually associated with cerebral palsy, neurofibromatosis, tuberous sclerosis, pyruvate deficiency, Landau-Kleffner syndrome and AUTISM.
So now we have to go in 2 weeks for an eeg and return on December 1st for a follow up. Here’s my question if these are seizures….why is he not diagnosed with epilepsy? I think she has just opened a whole new can of worms for our family. I just want answers……