I know my son doesn't like to travel through the night. I know this about him. He can travel in his carseat all the live long day. But he's used to lying down to sleep at night, so he clearly hates to drive through the night because it's hard for him to fall asleep. Now we know, so we will only be taking road trips during the day.
I know my son hates the hyperbaric chamber. Don't get me wrong, we're still doing it because it's helped him immensely. But he absolutely, without a doubt, hates it. He cries as soon as we get in. He's resorted to crying the entire hour and change...loudly. And as soon as we get out, he stops crying. Doesn't take a genius to figure it out.
I know these things about my son.
What I don't know is what is going on in his brain. Specifically, what is making him jerk.
These jerks and possible seizure activity have been one of the biproducts of Christian's injury that I just can't figure out. It's a puzzle I have no idea how to solve it.
We've had EEG's but they've only been snippets of what is really going on. The jerks didn't show up on the EEG. Not even a blip. These jerks have evolved. They started out with just his eyes jerking up to the right very quickly. Then the jerks included his head. The jerks used to be extremely frequent - a reaction to any sound or movement that was sudden, like an exaggerated startle. Now he's not nearly as sensitive so the jerks aren't as frequent. But they've evolved into something harder. And they bother him. He cries when it happens, even if they only last about 3 seconds.
So the time has come for a 24 hour EEG. This will monitor Christian's brain activity for an entire 24 hours. The good news is he is hooked up to electrodes and then comes home with them attached to his head. So no hospital stay. We like that.
The not as good news is that it isn't a video EEG. It's not the end of the world, it just means a little extra work on my part to mark times and take my own video to correlate with possible EEG findings. But the EEG report won't be ready until next week. Boo. We don't like that. I hate to wait and I'm so impatient, especially when it comes to medical stuff.
As for what we'll do...well, the verdict is still out. The medication, Keppra, that Christian has been on since his PICU stay hasn't done a damn bit of difference, in my opinion. And all the while I've always wondered what Christian's jerks or seizure activity would look like without medication. I wonder this because while Christian was on Versed and Fentinyl, drugs that were supposed to calm him, he was agitated and not very calm at all. When Christian was on Baclofen to relax his tone, he was at his highest tone. My point is that Christian tends to react the opposite way for which the medication is intended. So why not see what happens if we choose not to medicate? If I don't at least try, I'll always wonder.
This would be awesome if it was successful. That would mean Christian was off ALL meds and only on vitamin supplements. And if we chose the opposite - to medicate, whether it was to increase the dosage of the current medication or add a new seizure med in addition to the current medication - we are basically heading toward the spiral of medication hell. I hate this idea. It is my least favorite option.
I'm really pulled to trying our hand at not medicating. But it's really scary. It feels like such a gamble. But, then again, so is introducing more medication, right?
I'm heavily considering not medicating now, but what about after receiving the results of the EEG? What if it's messy? What if it's horrible? What if he's having all of these seizures I can't recognize? What if he's having seizures that cause further damage?
That's my worst fear.
You know, when we were in the PICU, a nurse told me, "It's okay if he has seizures, because you can control those with medication." What a dummy. I know that sounds mean but I don't think she could have been more wrong, as I've discovered.
Usually I have some confidence about where we're going, but I'm admittedly totally lost when it comes to seizures or the possibility of them. They scare the crap out of me and I have no gut feeling about them. So I guess ask me if we'll choose not to medicate after I receive the results. I may feel differently about the whole situation. I'm preparing myself for the worse for self preservation purposes.
Ugh, I'm nervous. We need thoughts and prayers! I'm okay with it being status quo. I just don't want it to be worse.
So if you have a second, please say a mini-prayer for Christian - that the EEG process doesn't horribly agrivate him, and for me - that I can handle whatever results we get and make the right decision for Christian accordingly.
To be continued...
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8 comments:
Sending thoughts your way...I have no doubt, though, that you'll keep making the best decisions and fighting when necessary for your little guy. You rock, Shauna!
Shauna you are and will continue to be the strongest person I know. If Christian is anything like his mom, which we know his is, then you both will overcome this. Will you have to adapt? Maybe... But that's what you and I do best! So I love you big sis, and prayers for you and Christian and the family everynight as usual!
When I first read your title, I thought to myself "OK, who is picking on Christian and Shauna? I'm gonna come beat 'em up!" ; )
Second, I am sorry about the possible seizures and EEG. Forget mini-prayer, I'm going to be doing some major prayer for good results from this study.
We only had to deal with the possibility of Marissa having seizures one time, way back during the first week she was born. Turns out it was a reaction to medication but we were so scared. Seizures are scary, I don't blame you for reacting the way you are.
Hang in there Mama. I'm thinking about you and your sweet Christian.
You know how I feel about seizures. They're awful, and when Cici started having them is when I really felt over my head as far as what to do. All I knew is that I wanted them to STOP. They were NOT ok. They seriously stopped her development, and made her tired and stalled. It just took the right combination of stuff, and the brand name of the drug to stop them. And now that they're gone (or mostly gone, I think), she's SO much happier (I also blame the seizures for the progression in hip stuff, honestly). Of course, keep me posted. I've seen Christian's jerks, and honestly, they could be nothing at all, just the body trying do to something and failing a little bit. Or they could be a reflex. I really, really, really hope he is not having seizures. And if he is, there is a support network to help you! Every kid is different you know, and what works for one, may not work for another. Anyway, hope it goes well, I hope it has a lot of useful information on it - I found ours very useful. Even if it did show the "bad" stuff. Hugs!
Prayers for a informative, helpful, non-aggravating EEG and for wisdom for you on your next move. I have no doubt you will find the next step to take, as you have so far. I'm sure it's hard to imagine that now, but you've done an amazing job so far - no doubts you will continue doing an amazing job!
I think Momma's instinct may be right here......I'm with ya. I'd be very surprised if it was seizure activity. I'll be saying my prayers too. Don't fret, you're doing everything right!!!!!
I have an "odd" take on the "jerks".
I had some nerves in my hand/ arm cut when I was 13 years old. As I started to gain back some of the movement in my hand, I began getting what I referred to as "spasms". Quick little jerking motions in my arm that I had no control over (even punched a guy in the face one day), as I gained more control they would at times be rather painful. They started off as little almost hourly little "twitches" in my fingers or shoulder. The only answer any doctor ever gave me was that as my body altered the paths that signals were sent, or as broken connections attempted to heal, these "spams", "jerks", or "ticks" resulted.
In the land of the "it's not possible" doctors letting the "I'm gonna make it possible" moms down, I try to pass on the "positives" of my nerve/ brain issues.
I hope and pray that Christian is not having seizures. The 24 hour EEG that you bring home, I think its called ambulatory EEG. The only thing that was hard for my daughter was having a headache. She is non verbal so her crying more was a sign so I gave her tylenol. It helped tremendously b/c the thing on the head is not light.
I totally agree that Keppra does not help. My daughter was on this medicine for one whole year and it didn't help one bit. The neurologist would keep Keppra and add another medicine. It was ridiculous to keep trying new meds that didn't work. We kept hoping may be this med will help or this med. The end result she was still having seizures. She would look to her left and her arms would jerk forward. Then she would cry b/c it was like someone was startling her every ten or twenty seconds. She would have about 40 plus a day after she woke up in the morning. Then we went on the Ketogenic Diet which is mainly fats/low carb diet. I wish the first neurologist we saw told us about the diet and my daughter could take formula. She never mentioned that it could be formula. We thought it was solid food which she can't eat b/c she doesn't have strong muscles to chew. Now, my daughter has been on the ketogenic diet for five months and has been seizure free for only two months. The weird thing when she first started the diet. She would have drop/jerk seizures throughout the day.
So if your son does have seizures which I hope he does not have. You may want to ask about being on the ketogenic diet. If you have any questions, let me know.
Take care and blessings to your family :) When you do the 24 hour EEG, any type of startle or movement, you will question if its a seizure. That's what I did.
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