Wednesday, December 28, 2011

Right now I’m struggling with what to think about what the doctors told us just a few weeks ago. We were at neonatal follow up when Benjamin started having seizure after seizure right in front of the pediatrician. I hate it when Benjamin has seizures because there is absolutely nothing I can do for him as he doesn’t even like to be touched. But this time I was thankful that he kept having seizures. For the past 5 months he has been having these new seizures and the doctors weren’t even sure IF they were seizures. I had taken videos of them to show the doctors but no neurologists had ever seen them in person. So we got, “well, maybe they’re seizures, but they aren’t the classical ones so we aren’t sure.” Since they couldn’t even tell us whether they were seizures there was no way to treat them. Well, when we went to neonatal follow-up and he kept having seizures the pediatrician called a neurology resident that was in the same clinic, who called the ER and within a few minutes Benjamin was in the ER hooked up to an EEG. He had about 3 on the EEG and they showed that they are focal point seizures which are stemming out of the right frontal lobe of his brain. Finally a diagnosis of seizures after 5 months! We talked to the doctor and right now are in the midst of trying to find a new medication. He has started one right now but I don’t see any change. The neurologist we talked to also mentioned that he would be a great candidate for brain surgery. That has never been brought up before so it was a bit of a shock. But these past few weeks I have been thinking a lot about it. And now that I don’t see a difference in the medication yet I am really thinking about that option. Benjamin is still not at the full dose in the new medication but usually we can see a bit of a difference. Instead his seizures are becoming more frequent. Although that could be due to lack of sleep over Christmas as well. I find it all a guessing game sometimes. And with him getting further down the list of medications that will work for him I wonder if surgery would be the route to go. But then, we haven’t really discussed it in length with the doctor either so we don’t really know the affects of surgery, etc. For now, we just plod along with the medication and hope and pray it makes a difference for him. At least it isn’t causing rage like another one of his medications he tried did. Please pray for continued strength for Benjamin as I know this is hard on him and really disorientates him having so many seizures.


Martin and Wieska said...

Thinking of all of you... praying for wisdom and strength.

Anonymous said...

Greta, I know you don't know me, but our son has epilepsy. He has also been on pretty much everything there is. He has been on the ketogenic diet, IVIG, and the Vagal Nerve Stimulator was implanted. The VNS was a disaster and had to be removed. This was after 5 surgeries. It has also been suggested that jason have brain surgery. At first they were hoping to be able to remove the L temperal lobe and part of the frontal. However, after after a week long EEG/Video monitoring session, they realized that this surgery wouldn't help him like they had hoped it would. Now they are suggesting a Corpus Callasotomy. We are not prepared for this yet so are still hanging in with meds (that don't work) We understand what you are going through and just wanted to let you know we are always thinking of you and keeping up on where your little Benjamin is at. Take care, and God bless