Third Diastat

I think we are going to be doing these often. Another seizure this morning and another Diastat. This was the first one I had to do by myself. It was a little more difficult. I didn't ask Dalan to help because I don't want him to see what we have to do to Jayen with the Diastat, but I have told him about it. He knows what we do, but I just don't want him to have that image in his mind. I want him to look at his brother and not see that. I think Jayen knows what is to come now too. He really didn't want me to pull down his pants or put his leg to the side. I cry just thinking about it. I wish there was something else I could do. I have accepted that fact that I have to do it. I know that research says that seizures under 5 minutes are not supposed to cause any brain damagae, so Jayen's seizures lasting 6-7 minutes are very scary. It is worth it to do the medicine. I'm just scared that they are going to be something we are doing frequently.
Jayen's seizures started again in May and we are now in September. This is the longest we have ever been unable to control them. I worry that we aren't on the right path. I worry that we aren't going to stop these now. I worry about his future. I worry about having a normal life, driving, drinking, playing sports. What will his life be like. This will always be a part of him, but how can I help?

ALWAYS SOMETHING!

Why is it always something with this kid? Jayen woke up this morning at Grandma and Grandpa Kuchta's house with swelling on the back of his left ear. It was so swollen it was pushing his ear out. He looked so silly. I was really worried about what it could have been. Was it infected, was it a bug bite, did he hit it on something, why didn't I see this yesterday? We drove straight to the urgent care clinic in Bellevue. The nurse practitioner thought it was an allergic reaction to some kind of bite, but wasn't sure. She told us to try children's claritin and gave us a steroid prescription and an antibiotic. We were to try the claritin and steroid and if it wasn't better in the morning then do the antibiotic. Put the kid to bed with a few too many meds tonight. Three syringes and eleven pills. Too much for a two year old!!

increase

Jayen had another seizure today. Second time giving Diastat. I HATE THAT STUFF! I don't think Jayen really knows what is going on when he has a seizure, but he grimaces and whines when we give it to him. I called Minnesota and they said to increase the Vimpat to twice a day. Hope this helps.

New Medicine

Doctor's office called back yesterday and wants us to start a new medicine called Vimpat. I'm a little nervous because I think the nurse talked about the side effects for a good ten minutes. I have to keep a very close eye on him since the Vimpat could interact with his Lamictal. I just hope we can find something that works. I'm really getting nervous. We usually can control them relatively quickly, but this time it is taking longer to find the right concoction.
Jayen's current drug regimen includes a B6 vitamin, 50 MG Lamictal in the morning and 100 MG at night, 125 MG Zonegram at night, 2 ML Klonopin, and 25 MG Vimpat at night.

Diastat disaster

After talking with Dr. Frost's office about Jayen's last seizure (on the 6th) we discussed that from now on if Jayen has a seizure lasting longer than 3 minutes we have to give him the Diastat. I'm so nervous, scared, pissed, and all other kinds of emotions. Who wants to give their child a rectal medicine that is supposed to stop a seizure? What are the side effects? What is he going to be like afterwards? What is Dalan going to say when he sees this?
Well a few of my worries and questions were answered today. Jayen had a seizure this morning. At three minutes we gave him the diastat. THANK GOD Matt was still home to help me do it. I don't know that I could have gone through that by myself. Jayen's seizure continued for another 3 minutes then he fell asleep. This is typical behavior, but I wasn't sure how long he would sleep for or how he would act after. Would he be drugged for the rest of the day?
I didn't want to wake Jayen up to take Dalan to school. Matt was able to come get him and take him to school. I emailed his teacher to let her know that if this happens again that I probably won't have anyone to take Dalan to school. That I would have to let Jayen sleep and bring Dalan in when he wakes up. I hope Dalan is going to be loving and understanding about it. He has had to do a lot to help his brother out. I hope he never feels like it is a burden.

Knock on wood again

I called Dr. Frost's office Monday to update them on Jayen. I didn't hear back from them so I called again Tuesday. We decided that since Jayen had been seizure free since last Thursday that we would go ahead and cancel his appointment for Friday. Well aparently I didn't knock on wood because he woke up this morning and had a seizure. I'm thankful that Matt was here and able to help because this was our first time giving the diastat. I'm not sure what it is supposed to do because Jayen seemed to go about like he usually does. He seized for another 3 minutes then slept for about an hour. I need to do some more research to see what the side effects are. THIS SUCKS!!!