More and More seizures. How much more?

Matthew is having more seizures. They look more and more like the Lennox Gastaut seizures. The upped dose on the Keppra worked for one day, one siezure then it was back to 4, now 6 today. 3 of them were the really bad one. I uploaded a video of the seizure. If you want to see it, you'll have to email me and I'll email you the link. It's a seizure, combo, meaning 3 seizures in one.

Life stops for us whenever he has the seizures. If he's eating, we have to wait until he wakes up to finish. It also affects his swallowing. IT's important that he doesn't aspirate and get pneumonia during one of these seizures.

I sent the seizure video to his neurologist and he is suppose to get with us tomorrow. I mentioned the Lennox Gastaut syndrom to the nurse and she said with Matthew's history it is very likely that he's got it. If so, it's kind of good news because then they know what seizure meds might work. THe siezure meds he is on now are not for seizures of LGS.

He's slept on and off all day because he limp and groggy after the seizures. The meds even make that worse. I took him to the doctor to get his ears checked to see if his ears were infected. His right ear was a little red and had some drainage but not enough to increase his seizure activity. He's on antibiotics anyway.

I was telling the pediatrician about the seizures and after we were leaving the doctors office, he had one in the hallway before we even got out of her office. Of course, she was in another room with a patient.

It breaks my heart every time he has a siezure. It drains him and it drains me mentally. I just want to snuggle up with him and not do anything. I have not felt like cleaning or anything the last few weeks. I have to make myself clean. I even try to take him to the pool and he'll have one there and we'll have to leave.

It's time to do something about it. I could live with the other seizures but I can't live with this because it affects his quality of life and his spirit and I can't stand that.

I'll post tomorrow on what the neuro decides. I was asked again about a DNR by our pediatrician. I told her I don't know. I'll have to be in the situation. Her example was, well if he goes into cardiac arrest during a siezure, would I want him revived? I said of course I would but then she said, what if he had to be put on a breathing machine because of aspiration during a siezure and possibly pneumonia. I just looked at her. I can't answer that question until the time comes. He's a tough little guy and he's done a lot more than what they thought he ever would so it's going to be a hard decision. ... I'm also going to take another cpr class soon because these seizures are very scary..
Keep him in your prayers every day.
CHarlotte