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Epilepsy is not a joke!!!

For anyone who thinks epilepsy is a joke. This is proof that it is not a joke. Superman needs prayers right now. So please continue to pray for him.

Superman has to be put on a ventilator to help him breathe now. He is having hard time breathing because of the seizures medications he has been given to control them. They are placing a central line and al line for needed medication.

Superman did not have a good night!

He did not have good night. He seized all night in his sleep. He is so many different medications right now. Hopefully they start to work on him. So they don’t have to put him on a ventilator.

Superman is being admitted!

He is in sub clinical status right now. That means he is having seizures but you can’t see them.

Back at the hospital again!

We are back at John Hopkins again for a cluster of seizures again. They are doing eeg on him. I had to give him the diastat to stop the seizures. Please say a prayer for Superman.

Superman is finally home!!!

Superman finally got released today. Don’t he looked thrilled to be home. I am one happy mom, but exhausted though. I need at least 10 hours of sleep. So, we still never found out the cause of all the seizures. All the test came back negative. The not knowing the cause is scary but hopefully everything is under control now. Thanks for all the prayers and well wishes for Superman. ❤

Still in the hospital!!

My baby is not having a good day. The seizures are back to back to back again!

EEG

Superman had a 4-hour EEG Friday. It was fun trying to keep him from pulling the electrodes off his head. We will have the results in 2 to 3 weeks. He also started a new medication on Sunday. The medication is called Onfi. So far the side effects have been mild.

Snapchat fun # 2

Superman was at a neurology appointment while taking the pictures. He is getting better at looking at the camera.

Question

This is to do with my son Dylan who has epilepsy. The school wants to put him in a wheelchair just to transport him back and forth to school. I’m the one who has to put him on the bus in the morning and it is not an easy task. The thing is he can walk and I’m not allowing it to happen. They claim it is for safety concerns but we all know they don’t want to deal with Dylan because he can be difficult sometimes but is expected from a fourteen-year boy. I have never been told he needs to be in a wheelchair by any of the doctors he has been to. So my question to you is do you think he should be put in a wheelchair?