We were told, things will "change" (aka: potentially get worse) as Tessa grows. Specifically regarding seizure activity as her brain grows and develops. Initially you think, brain develop is a good thing, right? Well, it is, in so many ways...but when you have calcifications on your brain due to congenital CMV, brain growth and development can mean the opening up of the mysterious world of epilepsy even wider.
A Recap:
Tessa had her first significant seizure this summer on June 9th. Then just about a week ago, on Friday November 1st, she had what we believe to be another significant seizure. By 'significant' I mean, unusual behavior lasting 20-30 minutes...behavior that doesn't stop or change until appropriate medicine is administered. We already had a follow up appointment scheduled with Tessa's neurologist for Monday November 4th. We were able to talk through the events of the 'seizure' that Friday evening and what led up to the decision to use a diastat dose for the first time.
Tessa's first big seizure in June started out with inconsolable crying and then got to a point where she vomited, her arms were twitching, she had lost consciousness and she was struggling to breath. During this most recent seizure, things did not ever escalate to the point they had in June...but the inconsolable nature of it all steadily got worse over about a 30 minute time period. Just two minutes after giving Tessa the diastat, she was at peace and finally able to sleep. The doctor agreed with our decision to use the medicine. We'll probably never know for sure if it was a seizure, but during our conversation with the neurologist, we began to feel comfortable with the fact that the medicine can be used to A.) stop a seizure that has gone on for several minutes or B.) help prevent a seizure from happening if the child is under an intense amount of stress. The situation that Friday night definitely called for some intervention for the amount of stress Tessa was experiencing.
The new approach since June, is to routinely check how Tessa is metabolizing her Trileptal (daily seizure med) so that we can more aggressively stay on top of dosing adjustments. They did blood work at the appointment to check her levels and I got a call at the end of the week that her levels were low, only at 12.8. This meant we would need to increase her daily Trileptal doses from 3 mLs twice a day to 4 mLs twice a day. I asked the nurse what the range was for the levels, and she said it's between 8 and 35...they like them to be as close to 35 as possible. After Tessa's seizure in June, we had her levels checked and they were 19.6...so 12.8 was significantly lower. The other thing we learned at her appointment last week was that she has gained 3.5 lbs since June...weight gain and growth spurts are very typical reasons for medication dosing adjustments.
So, needless to say, our world and knowledge of epilepsy is evolving. It would not be my choice, but it is what it is...and as of today...it has evolved even more.
I had some really good snuggle time with Tessa Saturday morning.
by Saturday afternoon she was still very sleepy and rather cranky.
We didn't sleep Saturday night and by Sunday evening
this is what things had come to...
None of us slept a wink last night. Tessa's congestion was severe and when bedtime rolled around, the drainage had become more than her tummy could handle. She began throwing up around 1 or 2 a.m. and continued until about 9:30 or 10:30 this morning. We already had a well-child visit scheduled with her pediatrician at The Children's Center this afternoon...the plan was to discuss her medications in general and get her a flu shot. With the turn of events over the weekend, we were very thankful to already have an appointment.
I stayed home with Tessa through the morning...Darin and I had already planned to go to her appointment together since we knew we had quite a bit to discuss. The morning was strange. I could barely keep my eyes open after such a long night, and yet Tessa was incredibly restless. This cycle of sickness for her is relentless...coughing and crying and throwing up, then coughing and crying and throwing up. I knew she was exhausted and yet she seemed unable to relax. Around 10:30 she did something very strange...after she coughed a couple times and cried, her arms suddenly made this huge bear hug movement, her legs shot straight out and for a moment, she wasn't with me. I had seen a video once, on a blog I follow, of a short seizure...similar to this one Tessa had seemed to just have. So much for hardly being able to keep my eyes open....from that moment on, my eyes were glued to her. It was surreal. To see your child doing something you had really only ever heard about.
I knew why she could be having seizures...her body was completed depleted...but still they were like nothing she's ever done before. For the next couple of hours I would watch her do this very same pattern of movement over and over again. It seemed to be every 10 minutes or so but only lasting a several seconds. It got to where every time she coughed, sneezed or cried, it was followed by this short seizure. I took a few videos because I kept thinking she was going to stop them at some point, but I still wanted to be able to show Darin when he got home. Literally as I'm showing him the videos, she has one in front of him....well, she had several. I hate to say I was thankful...but I was thankful that he saw them and saw exactly what they looked like.
Here are a few of the videos I took. They are hard to watch, but I feel like they're helpful to see.
One thing about them that is familiar is that, for always, when Tessa is experiencing stress, pulling on her onezie is something she'll do. We rarely dress her in shirts (onezies stay in place so much better), but I was out of onezies after all the throwing up throughout the night...so we ended up putting a regular jammy shirt on her. I know it's strange in the videos that she pulls up on her shirt...but this is actually something I'm used to seeing with her when she's experiencing some kind of stress.
From everything I could tell, the seizures started at the time her arms went up in the air and didn't end until after she quit moving her head back and forth and pulling up on her shirt.
In this one, I had just missed the beginning bear hug part of the seizure, but you can tell she's still it; lifting her shirt and turning her head side to side. I think it ends right after I pull her shirt down.
So hard to sit watch and and just wonder what in the world it's like for her to go through this.
You can tell she's still in this one at the beginning when I'm patting her belly and rubbing her check.
She comes out of it just right after that.
Don't ask me why I waited until 1:00 to call Tessa's neurologist. I guess I just kept thinking the seizures would stop and I didn't know that there was anything else I could do because what I knew was that the diastat was for preventing or stopping a long seizure. And thus, the epilepsy knowledge evolution ensues ;)
The dosage of Tessa's diastat is 7.5 mg...but we happened to have a couple of 2.5 mg ones from back in June. The nurse at the neurology office explained that the diastat is not designed for these short/frequent kinds of seizures (instead we would use something called 'clonazepam'), but that it was important to get them stopped...so for today we were told to use the 2.5 mg dose to help stop the pattern of seizures. If she happens to continue to have these short/frequent seizures (after she gets over being sick), we'll have to work with her neurologist so that we'll have both the clonazepam and the diazepam (diastat) on hand. My prayer is that these seizures today were only due to her extremely weakened state and won't be something we start dealing with moving forward.
This was Tessa minutes after her diastat dose:
The doctor confirmed at her appointment that she was positive for strep. Although not what I was hoping for, it is still always nice to have an answer. We also went ahead and got her her flu shot as planned since she hadn't been running any fever.
This was her waiting in the car at the pharmacy after an exhausting trip to the doctor:
We are really really tired. We are thankful for the medical professionals in Tessa's life. And we are praying for a speedy recovery. We are delighted as Tessa grows, changes and develops and we are coming to terms with the evolution that comes with it.
~Whitney
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