They’re back…
November 5, 2008 | Updates
Well, Samuels seizures are back - in spades. But at least this time I know what they are and don’t feel like I have to race off to the ER to make sure he’s ok. I still worry about him - tons, though. I’ve been making him sleep with his pulse-ox on each night so I can watch his heartrate and oxygen levels. I swear sometimes his lips turn pale when he’s having the seizures and that DOES freak me out. So, I’ve been watching him close.
The seizures showed back up on Saturday. They are the quiet ones like in the video I posted about a month ago. He just looks completely zoned out. It reminds me of the the description of “locked-in syndrome” where people are completely paralyzed except for their eyes and their minds still work perfectly well. That’s how it is with Samuel. It’s almost like he can’t move a muscle. But his eyes still follow me and he still makes little laughing sounds when I play with him. It’s REALLY weird.
In some ways it makes it easier to take care of him when he’s like this because he’s not so wiggly. But I would rather have wiggly than zoned out because I just feel so awful for him that I end up sitting and holding him as much as I can just so he doesn’t have to be stuck in his little body all alone. Plus, he’s had laughing seizures in the past where he just starts laughing for no reason but I can tell it’s seizure related because his face is a little “twitchy”. But twice now, he’s had crying seizures. And when I say crying, I mean sobbing.
It was a strange thing for me when it happened the first time. I was putting laundry away and suddenly heard him start crying. He has different cries and most of them don’t sound “normal” like other children sound when they cry. When they do sound somewhat normal, then it means he’s in pain. So, of course, I came running. But this was even a different cry. It was completely normal. And he cried so hard and for so long that he was sobbing. There were tons of tears even. It was odd because there was a small part of me deep inside that was thrilled that he could cry just like any other child. Just to know that that part of his brain still existed was incredible. But that faded pretty quickly as the sobbing lasted nearly an hour and there was no consoling him. I finally concluded they were seizures because he would laugh right in the middle of a sob and then go right back to crying. And sometimes, they would turn into convulsive seizures that lasted a minute or two. Luckily, they only happened twice and we haven’t seen them for about 36 hours.
So, here is my plan. I upped his Keppra a TINY bit thinking that maybe since he’d gained back the few pounds he lost a few weeks ago that maybe he needed just a little more. I REFUSE to go up any higher, though. I don’t want a repeat of last time. Then the doctor recommended I also up his Neurontin. So, we started that last night. It probably won’t help. It’s not a very effective seizure med. The doctor said it actually could make the myoclonus seizures worse. Let’s hope it helps instead of hurts.
The second part of my plan is to try a different diet. I know Samuel has digestion problems. So a better diet certainly can’t hurt. Someone posted information about a gluten free, caseine free diet that I read up on and started Samuel on last night. I also ordered a book with information on a similar diet that I’m hoping will arrive soon. Hopefully, something will help. But if we don’t see improvement in the next few weeks, we’ll have to resort to trying some other medications. I have a feeling that before we do that, though, our neurologist will order another MRI just to ensure there isn’t anything bad going on in Samuel’s brain.
So, that’s the story for now. I wish I could say things were back to normal. But, we’re pretty much back to square one. Hopefully, we can find something soon. I sure don’t want to be doing this clear into the New Year. And I’m sure Samuel doesn’t either!
Love,
The Jewkes
P.S. Funny little election story. Wes came home on Tuesday and said, “Mom, all the people voting for Obama must live in other countries.” To which I replied, “Huh? You can’t vote for a U.S. President if you are a citizen of another country.” His response was, “Well, we took a poll in our class at school and everyone voted for McCain. So who in the world is voting for Obama?” I had to laugh. It’s funny how when you’re little you think that the little world you exist in is all there really is. And then I explained to him about how he lives in a Replublican state and that if he lived in California or New York, all the kids in class would’ve probably raised their hands to vote for Obama. Kids sure are cute!
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November 6th, 2008 at 2:21 am, Suzi Searles Says:
I’m so sorry to hear that Samuel’s seizures are back, I can hear the anguish in your post. I will pray right now that God will continue to give you strength and peace during this trying time. I will also be praying that Samuel will have a touch from God and that the seizures will stop. I really believe that all things are possible with God.
Love in Christ,
Suzi Searles
November 9th, 2008 at 3:52 am, Liz and Ashleigh Says:
I am also sorry to hear the seizures are back again. It’s a shame the Keppra had the crying side effects but maybe this time not so bad. Ashleigh is half way through her 3 month changeover from Epilim to Keppra and no seizures for about a month. Don’t give up though in your quest for a seizure free life for Samuel, my husband takes 16 tablets a day for epilepsy and he was 30 when he finally became seizure free. He is on Dilantin, Epilim, Mysoline and Tegretol and tried many many combinations to achieve this. I am not trying to frighten you by saying he was 30 before he had none because he was only having 1 or 2 a month for the 10 years prior to that.
Liz