Medical Update

Dear Son had another seizure today before school. The seizure kept escalating and normally, I'll use the magnet on his wrist to activate his Vagus Nerve Stimulator* and that action will send a charge through the VNS typically stopping the seizure. Well, that didn't work today. The seizure started in his bedroom as I was getting him dressed for school. The seizure continued in the wheelchair, and then as we waited for the school bus. I thought at different times, it was lessening however I couldn't get the seizure stopped. We were waiting outside for the bus and when it started getting pretty bad, I went inside to grab my phone in case I needed to call 911. The nurse who rides his bus was there so I had her come inside and help me get him into his bed so I could give him some Diastat (a type of rectal valium used in emergencies to stop seizures).

As we got inside, the seizure was getting a lot worse. I was trying to use the hoyer lift to lift him out of the wheelchair to get him into his bed when I realized I was running out of time. I ordered the nurse to grab the Diastat from the drawer in his nightstand and I lifted his 182 pound body out of the wheelchair and onto the floor where I administered the Diastat. Things still weren't getting any better and I thought for certain I was going to have to dial 911. Things eventually improved and I called him off of school. By the time the seizure was stopped, and I had him back in his bed, it was over an hour later. Not a good way to start the day for either of us. It was a nerve wracking day.

A week or so ago he had a bad seizure so I called Ped Neuro Nurse to see if we had got the diagnostics back on his VNS. As you may recall, in early March, they took some diagnostics from his VNS to send to the manufacturer to see if the battery was getting low. The battery has a life of 7-11 years however Dear Son's settings are so high that they thought the battery might be getting low. She e-mailed the manufacturer and I learned that the battery only had 2-3 months left. Well, the diagnostics were taken on March 11th, so his VNS was coming near the end of it's battery life. I had been worried about the VNS stopping and was afraid Dear Son might die if this device wasn't working. I spoke with her again on Wednesday and she had started the insurance approval process. Once that was complete, they'd check with neurosurgery to see when we could get Dear Son scheduled.

Once I had that news, I had to call the school nurse to inform them that the battery may not work. As part of Dear Son's emergency plan, they are instructed to use the magnet three times within three minutes prior to calling 911. I told them that if it's not working, they may need to call 911 sooner. Well, in order to do that, I needed to speak to the head nurse to make sure that everyone was clear on that and to see if they needed a written letter from Ped Neuro Doc in order to do this. The head nurse said no, that she would inform all of the people who care for Dear Son, of the new instructions. Dear Son has a nurse who rides the school bus (She takes care of Dear Son and another medically fragile student.) and has a CNA/Medical Assisstant that cares for him in the classroom.

After today's seizure, we had to speed things up. The primary insurance doesn't require pre-certification while the secondary insurance does. I called them and we got most of the issues ironed out today. On Monday, we'll get a surgery date from Neurosurgery and then the approval should be done.

The VNS works really well for Dear Son. It was implanted (under his arm) in 2004 and took about a year or so before I really noticed the improvement in his seizures. Since that time, it works pretty well. When he has a seizure, I just hold the magnet over the device which is implanted under his armpit and it will activate it immediately. (The device is on 24/7 and sends charges regularly; in a seizure, holding the magnet will immediately activate it versus waiting until the next charge.) He still is on multiple seizure medications, in addition to the VNS, to control his seizures. As you may recall, Dear Son's seizures were caused by a mutation of the ARX gene. With that mutation, children are born without any gaba, a key inhibitory neurotransmitter. He also has a progressive neurological disease. He had been having more seizures over the past few months and in January, his device was increased to the "rapid cycling" to give him better seizure control.

I have been a little on edge lately, worried about him. He's been having more seizures, some small and some larger and I guess I worry the most about sudden death. I have read that some kids with seizures can die unexpectedly. I worry his device will stop working and then he'll have a seizure and die. I am not a worrier by nature, and try to stay calm, however knowing how much he needs this VNS and the fact that it's not working very well lately, has me concerned. I will feel a little bit better once the surgery is scheduled. At that time, they will most likely upgrade his device to a newer model, versus simply replacing the battery.

Note: *A Vagus Nerve Stimulator, or VNS, is a device used to control seizures. The device is implanted under the armpit. When activated, the device sends a charge/shock up to the vagus nerve and for some unknown reason, that disperses the seizures. There are many settings on the VNS, and the VNS runs 24/7. A magnet, typically worn on the patient's wrist, is used in an emergency to immediately active the device. A Vagus Nerve Stimulator is like a pacemaker for the brain.