Reese has been doing good since she was in the hospital. I was actually hoping that she would get off her meds in July when we go back to see the neurologist. Well i was wrong.
A week and a half ago Josh went away for the weekend, and every time he goes away someone gets sick! I even told him before he left, "I wonder who will get sick this time?" Maybe i jinxed myself!
My mom came in that Saturday that Josh was gone so i wasnt entirely by myself with the kids. We just borrowed Wii fit from my neighbor and the kids were playing it. As soon as Reese stepped off the board she had a small seizure. I wanted to crumble. It was a small one, only lasting maybe 10 - 15 seconds. This was a Saturday so i couldnt call the neurologist and he told us at the hospital not to bring her back to the hospital when she has another one. So i had to wait until Monday to call. Well Sunday comes and Josh comes home. It was hot so we brought out the pool and the kids were playing in it. Well at some point that day we think she had another one. We didnt actually see it but we just new she had one when she kept complaining that she was so tired. She gets pretty lethargic after she has one. Of course the longer they are the worse she gets.
So Monday rolls around and i called and left a message for the dr. They called back on Wednesday and told me that we had to up her meds. I told them that the Leapster and Wii might be causing them and she told me to keep her away from them until we can control her seizures with her meds.
She has been on her new dosage for a week now and yesterday she had a pretty good seizure. It lasted probably 40 seconds. Thats almost as long as the one she had when we took her to the hospital. This time her arm had a little twitch in it.
I feel so hopeless. There is absolutely nothing i can do for her when she has them. That is such a hard thing to watch and know that i cant do anything but hold her and let it pass.
We realized that it might have something to do with the Leapster and the Wii. She was playing with the Leapster when she had her big one and then playing with the Wii when she had another one. When you turn on the Leapster is gives you a warning about kids having seizures. It says...Rarely, flashes can trigger photosensitive seizures, read parent guide warnings and cautions before playing.
How nice is that????? So i am thinking about getting rid of all video games.
Just still hard for me to believe that this is happening to her and hard to think that my 3 year old has a neurologist!
**Sorry if this post seems like im rushing through it! I typed up another one and it was probably 3 times longer and then Miss Kinley came up and hit a key on the keyboard and erased the whole thing! So i wasnt to thrilled about typing it all over again! :)**
Reese had her neurology appointment a few weeks ago. It was probably the most uneventful dr appointment i have ever been to. I was very disappointed! I guess going in i kind of knew that she was gonna stay on the meds because she had a few seizures in the last couple weeks, so i knew that wasn't going to change. I wasn't prepared for her to tell me that she has to be on meds for a minimum of 2 years! That was pretty much the only new information i got. I guess i just want more answers and there really isn't any. We just talked about the seizures and they are pretty confident that she will grow out of them. We will need to up her meds as she grows over the next 2 years. Her dosage is based on her weight and right now they have her on a low dosage just to start out.
We have taken away the Leapster. She has only asked for it once and we just tell her that we don't know where it is. We let her play with the iphone, but very rarely. That doesn't seem to bother her at all when she plays it. Now we have taken away the tv's in the car. That seems to be causing her seizures now. She has had a couple of them in the last few weeks and they are always in the car with the tv on. I have tried to look up if it has any effect but i cant find anything! The only thing that i find that has both seizures and portable dvd players is articles about people bringing them with them when they are having an EEG.
