Hoping to go home…
September 24, 2008 | Updates
Most of you won’t even know I’m posting this because I can’t send out emails from the hospital. For some reason, I can only receive them. But, this website is a lot for me to just keep track of things anyway, so I’m going to go ahead with this post.
We got the results of Samuel’s blood and urine tests and EEG back on Tuesday. They did a 35 minute EEG and within that time, Samuel had 12 seizures. They were mostly generalized seizures meaning that they involve the entire brain and not just one section of it. This is important to know when choosing a seizure med. So, they have raised Samuel’s seizure med dose over the last few days. He was getting 1.5 mL’s of Keppra twice a day and 1.5 mL’s of Neurontin twice a day for seizures when we got here. For the last 24 hours, he has been getting 4 mL’s of Keppra twice a day and we are now reducing his Neurontin as is doesn’t seem to be doing him any good and it’s not a great seizure med to begin with.
Last night and today, Samuel seemed a bit better. He is still cycling in and out of the seizures all day long, but he is out of them more often than he has been in the last week. He also is having smaller and shorter ones in his sleep than he was before. When the neurologist did rounds this morning, we decided that if he wasn’t better by tomorrow (Thursday morning), then we would start trying a new drug - Depakote. But this afternoon, we went to a neurology appointment that we have had scheduled for several months now and I think I changed my mind. Our regular neurologist said that it could take up to 2 weeks for the Keppra to be most effective for Samuel. He said he would do whatever I wanted, but in talking to him, it seemed like it might be a good idea to give the Keppra some time before writing it off as ineffective - especially because Samuel is doing a bit better.
We also spent some time going back over Samuel’s prior brain scans. Again, his original MRI showed some slight damage in the basil ganglia portion of his brain. The rest of his brain appeared normal. The MRI a year later showed even less damage in the basil ganglia and a very slight reduction in brain matter. Again, the conclusion was that it is very difficult to find damage to Samuel’s brain on any of his scans. But in looking at him, it is clear that the small amount of damage has had a huge effect on his abilities. In the end, his brain scans simply don’t fit his abilities. But that is often true of children like Samuel. Some children show extensive damage on scans and don’t appear to have any side effects from it. Weird, huh? I guess if nothing else, I just like to think that even though Samuel can’t move like he should, his brain is still intact enough for him to understand us and learn throughout his life.
When we returned to our room, I did some research on Keppra, Depakote and another alternative Lamictal and I feel like Keppra is probably the safest choice of them all. Depakote can cause liver failure and problems with the pancrease. Lamictal can cause fatal skin reactions. Of course, these are not extremely common, but they are common enough that they do blood tests twice a year to test for liver failure with Depakote and if you get any sort of a rash with Lamictal, they take you off it. So, I would rather deal with Keppra if we can get it to work without a lot of side effects - like sleepiness or irritability.
So, my suggestion to the doctors tomorrow will be to let us go home and continue on the Keppra for a few weeks to see how things settle out. If it doesn’t work, I already had my neurologist promise me that he would be available and easily accessible to discuss alternatives. We’ll see what they say about that plan and, hopefully, we’ll head home tomorrow.
Samuel has been a very good boy the whole time we’ve been here. He has been very sleepy - sleeping 19 hours straight the first night we were here - but also smiley when he’s awake. We’ve seen a lot of nurses and therapists who cared for Samuel 3 years ago and they all remembered him right away and couldn’t believe how he’d changed and grown. It’s incredible to see what an impact he had on all of them. And it was a great joy for each of them to get a smile from him when they had never seen his beautiful smile before. Plus, I guess he didn’t have his little freckles back then and everyone is smitten with those as well. He has dealt with all the pokes and prodes and been a really good sport. I could tell he was feeling better today because he was giving the nurses a much harder time. I always enjoy watching them struggle to change his diaper or give him his meds. They always comment how wiggly he is and I just laugh to myself because they have no idea :).
Anyway, I miss my kids and hubby. And…my shower, my private bathroom and my bed…ah, my bed…this little fold out chair in the room is better than the floor, but not by much!
Pray we get to come home tomorrow and we get this all under control soon!
Love,
The Jewkes
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September 25th, 2008 at 12:13 am, Suzi Searles Says:
I had no idea that Samuel was in the Hospital, so sorry. I’m glad to hear that you got an answer to what was going on. I know how frustrating it is not to be listened to, I’m glad you finally got the right Dr.’s on top of the situation.
I will be praying that you will get to come home tomorrow and that you will have the strength that you need to get through another long day.
Love in Christ,
Suzi Searles
September 26th, 2008 at 5:32 pm, Cynthia McKay Says:
Sorry to hear that you are back at the hospital again. We hope you will be home soon, if not already, and that the Keppra will work. We’ll be praying for you guys. Please let us know if we can help in any way. We are ready and willing!
Love,
The McKays