Tuesday, November 24, 2015

Very Quiet

The past couple of days, Mira has been really quiet and reserved. She has been averaging at least one big seizure at some point during the day. This morning she had one about 15 minutes before the bus arrived, which made her extremely tired all day at school. She had a similar day yesterday at school, without a big seizure. Both days she has been having some smaller seizures and head drops throughout the day, based on her teacher's note, but no major tonic-clonics. We have been avoiding her toy as much as possible, as it has been backfiring every time we think it is safe to give her - her lone seizure we witnessed today, was triggered by her toy. We thought she was going to get upset this evening when we didn't put it in front of her, but she was extremely quiet the entire time. She kept dozing off in her chair and when she wasn't napping, she was just quietly staring into space.

Sunday, November 22, 2015

Slight Improvement

Today was better than yesterday, if for nothing more than not having to administer trazodone. Mira didn't have near the number of twitches and seizures just 24 hours ago, but she did have a massive tonic-clonic about 1:00pm this afternoon. We managed to run some errands before the seizure, which Mira was excited about. Just getting out and about in Target was the highlight of the day. After the seizure, she spent the next few hours in her chair, recovering, as seen in the picture above. She slowly came around late afternoon, but she continued to be groggy the rest of this evening. I suppose the most interesting part of the day was this morning, when Mira was vocalizing quite a bit, just repeating this sort of moaning sound every few seconds. It went on for over an hour. It wasn't seizure activity, since she was scanning the room and flapping her hands every so often - I think she just had a lot to say.

Saturday, November 21, 2015

Rough Trazodone Day

Mira had a bad morning. She started twitching during breakfast, with some periodic 'lightning' jerks, that almost look like an extended startle reflex. Those progressed into some heavier myoclonics, then into a series of pre-tonic-clonics. She kept having this mixture of startles, myos, and near TCs for a solid hour. She had breaks between all of the seizures and her breathing was never altered between each one, but every 5 minutes or so, she would have some combination of seizure activity. This clustering of repetitive seizures is something we have become all too familiar with this year, this being at least the 4th or 5th time since April.

I think this activity has been going on for a few days now, we just hadn't witnessed it this heavily until this morning. I noticed a lot of eye fluttering and eye shifting yesterday during dinner, where she would turn her head, locking her gaze onto her left side, and her eyes would literally shift back and forth a few times. All of this would last about 5-10 seconds - all of it was obvious seizure activity, just a variation we have not seen for awhile.

All this being said, ended up giving her trazodone about mid-morning, because the seizures just would not stop. It kicked in about 45 minutes later and she was finally able to get some rest. She ended up sleeping for several hours, even only on a half-dosage. When she woke up, she was in a miserable mood - wailing and crying, so back in her chair she went to have something to eat. I get the feeling that some of the medications just give her a sort of pharmaceutical hangover, where she wakes up groggy, with a headache, and nauseous. She pushed back three bottles within 15 minutes and started crying to be back in her bed.

Overall, she has had a rough day. This morning, she stepped down on the Vimpat and is now 3/4 of the way through the wean. She is at such a low dosage, that it is probably not doing much of anything. As I had stated in my last post, we are definitely seeing an increase in seizures, but we want to wait until she is fully done with this medication before we start something else. We have literally completely run out of options with AEDs, as she has tried every available one on the market, thus we are trying something different once she is fully weaned, with a low dosage SSRI.

Thursday, November 19, 2015

The Balancing Act

Mira continues to have a consistent flow of seizure activity. She averaged 1-2 tonic-clonics every day this week and had hundreds of myoclonics, even without her toy near her. The irony is, with her weaning the Vimpat (she is almost 3/4 of the way through it) while she seems to be having more seizures, she is much more engaged at school. Her teacher said she is making great eye contact and is very focused at times. I have abandoned all hope that we will ever find a positive balance with medications, seizures, and a consistent level of engagement. It is obvious that with less pharmaceuticals in her system, she is more alert, but we are definitely seeing an increase in seizure activity, at least over this past week. She had a nice bath this evening and didn't complain once, but afterward, really wanted to go to bed.

Sunday, November 15, 2015

Irritable Day

Mira has had some bouts of irritability today. I think I jinxed it yesterday by saying that she has been quiet and subdued the past few days, since today, she was definitely off. She had an average morning - a bunch of myoclonics, a bottle, then wanted back in her bed after about an hour. Then she had a quick nap, waking up in a foul mood - wailing and crying, with tears streaming down her face. After a bath and a couple of bottles, her mood improved briefly. We then went for a walk, which Mira uttered her only laugh of the day, when the wind kicked up and blew her hair around for a few seconds. Later this afternoon, she was again really cranky and nothing satisfied her - she went to bed early and now sounds much happier.

Saturday, November 14, 2015

3,Then 2, Then 1

After Mira's really rough day earlier this week, having 3 multiple tonic-clonics and myoclonic episodes, I suppose she 'improved' slightly be the end of the week, by having only 2 big seizures on Thursday and only one yesterday. She had been fairly consistent with having at least one intense tonic-clonic per day and today was no exception. Mira has been very lethargic and tired all day today, napping at every opportunity. I had to wake her up on both outings today, first to the park for a while, then to run some errands this afternoon. Both trips generated a few moments of excitement for her, but overall, she has been very subdued and quiet. The drool she is producing is non-stop - she is like a faucet. We have resorted to her wearing a hand towel all of the time and when it isn't on her lap, we are constantly wiping her face. She has been drenching her clothes, especially when she is 90 degrees upright in her chair. She just reached the half-way point with the Vimpat wean and really, nothing has changed - it is difficult to gauge her seizure activity sometimes overall, but it doesn't seem any worse than it was a few weeks ago. Her demeanor is strange during the wean - I would expect that she might become more irritable and upset, but what we have witnessed is the exact opposite. She is withdrawn, silent, and tired all of the time. It's actually as though she is more sedated coming off of the medication.

Wednesday, November 11, 2015

3 is a Terrible Number

Mira could not last more than three seconds with her toy today. She was up early and full of energy this morning, but having so many myoclonics before I even got her out of her bed. One right after the next, for a solid 15 minutes, Mira endured so many seizures, all before 6:45am. I waited for another 15 minutes or so after they stopped, right up until the time she started to get fussy and really wanted her toy. I put it on her board and within three seconds, she burst into another string of myoclonics. I went through this scenario, after another 15-20 minute wait, and again, she erupted into another strong myoclonic within three seconds of having her toy in front of her. That was the end the toy for the day. To top it all off, at school, Mira had three intense full-blown tonic-clonic seizures, all within about 90 minutes. She had the first two were about 15 minutes apart, then she had another about an hour later. Her teacher said she was completely out of it the rest of the day. Three seconds; three myoclonic episodes; three tonic-clonics. Mira was so spent at the end of the day, she just fell asleep in her chair. She is exhausted and overwhelmed with seizures this week.

Monday, November 9, 2015

Back to 'Normal'

After Mira had one great day this weekend, she slipped back into her pattern of having at least one tonic-clonic a day, if not more. The past 2 days, she has woken up and had an intense seizure within 20 minutes of being in her chair. The one she had this morning set the tone for her for the remainder of the day - she was completely worn out and spent much of the day sleeping it off. She could barely stay awake through dinner, having zero energy before bed. The Vimpat wean doesn't appear to have much of an impact on her mood or her seizures, but she still has a long way to go.

Saturday, November 7, 2015

Signs of Energy

Mira had a positive day, which was a nice break from the past few weeks she has been having. She had some fussy spells, but we didn't see any seizures after this morning, and she was able to get some quality, uninterrupted stints with her toy. During one of her brief irritable spells this afternoon, we went out for a walk around the neighborhood, and Mira was very enthusiastic about it - she was moving a ton and kicking her feet the entire time. She even enjoyed racing around the house some -  not getting vocal so much, but at least showing signs of energy. She had an enormous appetite today for some reason too, finishing off multiple bottles at almost every sitting. She never refused a bottle until right before bed, when I think she was finally tired out and just wanted to sleep.

Friday, November 6, 2015

No Relief all Week

Mira has had a rough seizure week. She is consistently having 1-2 involved tonic-clonics a day, typically in the morning and late afternoon. This is on top of her steady stream of myoclonics that she has every day. She has been getting zero relief and still unable to play with her toy for any significant amount of time. She had one good stretch earlier this week for almost an hour, but every other time, she just has continuous myoclonics from it and we have to quickly take it away. We are continuing with the Vimpat wean, which has been a little rocky so far. Wednesday she had an awful day at school, with her teacher reporting she was very irritable all day. Earlier that morning, she had an enormous seizure, a long day at school, then had another intense seizure before dinner. As I've said before, it feels as though if she isn't having a seizure, she is recovering from one. Mira is also becoming so much less active at home. She doesn't seem to enjoy racing around the house at all and hasn't vocalized in weeks. She has become much more passive too, not really mustering the energy to do much of anything. Today she seemed very tired, slouching in her chair after dinner, just wanting to go to bed early - she just looks exhausted.

Tuesday, November 3, 2015

500,000 of Your Closest Friends

So in case you haven't heard, the Royals won the World Series, for the first time in 30 years. Just minutes after I hit the 'post' button on Mira's last blog entry on Sunday night, the Royals mounted yet another miraculous comeback in the 9th inning, then completely sealed the Mets' fate with 5 more runs in the 12th. It was truly an unbelievable season for the Royals, after a stellar year, just one season ago when they fell 90 feet short of winning the World Series against the Giants.

In anticipation for the celebration today, most, if not all school districts cancelled school for the day, which I think was a very wise decision. Had any buses tried to come within 10 miles of downtown, they would have been trapped. With a parade starting at noon, followed with a rally at Union Station at 2:00pm, the volume of traffic and fans completely shut the city down this morning. I didn't even attempt to go into work, as I had heard that Northbound I-35, which leads into the west side of downtown, was a parking lot starting at 9:00am this morning. People were literally abandoning/parking their cars on the side of the highway, since there was nowhere to go and traffic was at a complete standstill for hours. People were comparing this surreal scene to something straight out of The Walking Dead. Some had a 3-4 mile walk from the highway to Union Station, based on the pictures I saw. Sarah had considered taking the boys down to the parade and I was going to stay home with Mira, but she quickly reconsidered after discovering the early traffic reports. Around 500,000 people consumed the city - I have never seen anything like it. It was an astounding turnout for the Royals.

Sunday, November 1, 2015

Strange Days

We started the Vimpat wean yesterday morning and while we wouldn't expect to see any differences for another week or so, Mira has been a little off for the past 2 days, but really, she has been off for the past several weeks. She has been very quiet this weekend and sleeping quite a bit. The only time she is even remotely animated is when we are either going for a walk or running errands. Even when we are out and about, she takes every opportunity to sneak in a catnap, with her ongoing exhaustion clearly evident throughout the day. She took an extended 2 hour nap this morning, right after breakfast.

On a positive note, she was able to play with her toy some on both days, without having a tonic-clonic. She had a number of strong myoclonics throughout the day, even when she wasn't anywhere near her toy. When we were on our walk earlier today, she had a few random events, where she would have a myoclonic, then came back to baseline, reaching for her toy, as though it in front of her. I think she is so conditioned to having seizures in front of her toy, it's just a natural reaction for her. It's terrible and saddens me to see her do this - she has been having seizures for over 10 years now and her post-myoclonic reaction is to reach for her toy, after these isolated heavy myoclonics.

The other thing we have noticed over the past few weeks is Mira's drooling. She is almost like a faucet most of the day - we don't think it is sedation per se, since she has been at the same dosage medication wise, for a long time. In fact, we are anticipating less sedation, since she is actually moving down on the Vimpat. Overall, she is moving less, certainly vocalizing less, and drooling more, and we have no idea why. These are strange days. Chalk it up to daylight saving time, the colder weather, or simply exhaustion from relentless seizure activity. 

I am going to finish watching the Royals-Mets game. I'm not too optimistic about this one, with the Royals down 1-0 and the Mets have the bases loaded with nobody out. I have a feeling the series is coming back to Kauffman on Tuesday, which is fine by me.