Sunday, July 31, 2016

Myoclonic Clusters

Mira has been having an increasing amount of myoclonic clusters, at all times of the day. When I went to get her out of bed this morning, she started having a series of episodes - curled toes, eye deviations, rigidity, etc. Her breathing is never altered or anything, but it's all seizure activity nonetheless. She had one of these episodes in the middle of the afternoon yesterday, and again the day before. There never seems to be any pattern to it, as with most of her seizure activity in general.

Friday, July 29, 2016

Both Ends of the Spectrum

Mira spent the beginning of the week being in a very cranky mood - she was super irritable during the day on Tuesday and Wednesday, with nothing making her happy. Things have lightened up quite a bit since then, capping the week with Mira laughing and giggling today. We experienced both ends of the spectrum this week. She has been in a great mood today, maybe due to the fact that we have been doing serious amount of walking, all of it in the house. Walking around kept her smiling, so long as we were in a constant state of motion. I think we ultimately wore her out - she is in bed snoring right now.

On another note, my back did not improve after this weekend, in fact, the pain became unbearable, Sarah took me into the ER Monday afternoon, to see if there was something else going on. I scheduled an appointment with my PCP for Tuesday, but the pain was so bad I needed to try and manage it sooner, thus a visit to ER was warranted. They gave me some painkillers, which helped enough for me to get to my doctor the following morning and I was able to get a little sleep. After a steroid injection, a muscle relaxer injection, x-rays, and some additional stronger pain meds, things are feeling much better. I am still very sore, but at least the pain is manageable. I have had this happen before, just from transferring Mira, but had never experienced pain quite like I did earlier this week. As Mira is getting heavier and taller, I need to be more cognizant of how exactly I am picking her up, Transferring her chair into the van is typically what causes one to bend into an awkward position - her chair weighs a ton and is extremely difficult to get into the van with just one person.

Sunday, July 24, 2016


If there is one positive attribute with Mira's episodes (her most recent one last Wednesday - see the post before this one) is that they typically never last more than 24 hours. This latest one was no exception. By the time we put her to bed Wednesday evening, she had already been slowly coming around a bit beforehand and by the morning, she was back to baseline. Her fussiness and irritability has subsided over the weekend, with a minimal amount of seizure activity since. However, randomly this afternoon, she was laying in her bed and started having a series of strong myoclonics, one about every 15 seconds and the pattern went on for about 45 minutes. This is also not an uncommon occurrence these days. Rarely do they happen in the middle of the afternoon, but today they did - typically she has these right after waking up. I suppose today has been a different day in general for her - after having a couple solid weeks of irritability, she was very quiet and content all day today. She did spend a fair amount of time in her bed just chilling out, only getting up to race around the house and to have something to drink. She has loved racing around today (it was miserably hot today (hitting 98 degrees, so going outside for a walk was not an option) even if it was just around the house - she never seemed to tire from it and the only reason we stopped was because it was actually wearing me out. Sarah and I have been taking turns transferring her, as I again strained my lower back, either from transferring her chair into the van yesterday or from sitting awkwardly on the couch, hunched over my computer - not sure which. Either way, today I have had some serious pain that no amount of Advil seems to combat. This happened a few months ago and it look almost 2 weeks to fully get over it.

Wednesday, July 20, 2016

Very Rough Day

Mira had a really rough day today. I went to wake her up this morning and it was obvious that she had just had an intense seizure. She was laying in bed in a sort of post-ictal position, one that is reminiscent of the aftermath of one of her involved tonic-clonic seizures. Her arms were stretched outward and she was still having some small spasms with her arms. Her back was completely soaked and she was staring at the ceiling. I can tell it had just happened, at least within the past 10 minutes. Unfortunately, it is not uncommon for her to have a seizure when waking up, but it is always disconcerting nonetheless. I got her changed, dressed, and in her chair, but based on her expression, you could tell this was potentially going to be an off day for her. It's sometimes difficult to tell immediately after a seizure, so we decided to send her off to school, keeping in mind that with limited summer hours, she was only going to be gone for a portion of the morning.

Sending her off to school was probably not the best decision and I should have read the signs better, as she had another big seizure on the bus. The driver and para told her teacher, who in turn told us. Her day didn't improve much after that, as she was off the entire morning and was having a ton of twitches and jerks at school, throughout most of the morning. We could barely get 1/3 of a bottle in her before her bus arrived, which was red flag that things were not going to go well - Sarah couldn't get her to drink anything the rest of the day. She was either completely rigid or very lethargic, or both, the entire day. We finally managed to get her to drink a full bottle at about 7:00 this evening, which took her about 20 minutes to actually finish. You can tell from the pics above, that her arms were tense, her feet extended and crossed, and she was very clammy - her temperature was completely off. She was extremely quiet and altered, not responding to much of anything visually or any motion. Most of the time she will react to her chair moving, but today she was motionless and void of any recognition with every turn of her chair.

She has had numerous episodes like this in the past and you never know when they are going to happen. Fortunately, she only happened to have 2 tonic-clonics, as she has had as many as 10-12 in a single day in the past when these dystonic episodes surface. We have been keeping a close eye on her, as she has gone through the neurological ringer today. Epilepsy sucks, that's all there is to it.

Sunday, July 17, 2016

Another Rough Week

Mira has had a turbulent week, starting off last Sunday by spending the day having continued jerks and an absolute ton of myoclonics throughout the day, which continued into Monday. I had to fly out to New Brunswick on Tuesday morning and didn't get back until mid-day on Thursday. Mira ended up having an enormous seizure Tuesday night in bed, which Sarah said was really awful. That seizure took a toll on her and she was very lethargic all day Tuesday and part of Wednesday - her teacher said she was out of it at school and didn't want to participate in much of anything. By the time I was home on Thursday, she was back to her typical routine, which has been over the past few weeks, just a lot of continued fussing. There has been something bothering her, neurologically, but there is no telling what exactly it is - she has just been irritable and twitchy. On Friday, she seemed to have a better day, even spontaneously laughing on a few occasions, but overall, has not been happy with much. On a positive note, her fancy new sparkly shoes came in (as she outgrew her last pair of Tom's) and she hasn't been able to kick them off yet, not from a lack of trying. These particular shoes are about the only pair she manages to keep on her feet about 95% of the time and of course, they are stylish. She gets so many comments on them!

Monday, July 11, 2016

Continued Fussing

Mira's fussy spell continued through the entire weekend - just like a newborn baby, she would nap, then wake up and start crying until she had a bottle, or two, or three. This cycle started off this morning and was unrelenting the entire weekend. She did manage to sleep solid through the night both nights, but she would pick right back off where she left off the evening before, crying. It never seemed to subside during the day for more than an hour at a time. We did manage to go for a few walks, but it has been so sweltering hot and humid, that it just felt miserable outside most of the time. Getting outside seemed to break Mira's routine temporarily, but she would soon become either lethargic, irritable, or both if we stayed out too long, meaning more than 15 or 20 minutes. She was off school all last week, which may be part of it - she starts back tomorrow morning, so hopefully, things will turn around for her. She hasn't been having any seizures or anything significant - just her few typical random spasms and jolts every so often.

Friday, July 8, 2016

Cranky Week + Biopsy Results

Mira has been very irritable this week. Blame it on the heat, boredom, or seizures - or a combination of all three, but nothing has been keeping her happy these days. Her patience seems to wear thin very quickly, especially in the morning and late afternoon. But then again, at all times of the day she has been known to vocalize her displeasure. I was off this afternoon (thanks to summer hours) and took Mira out for a walk later this afternoon, as an attempt to redirect her when she was pretty cranky. She did great for the first 10 minutes - happy, kicking her feet, and doing some dragons. Shortly thereafter, she started having some strong tonic seizures and movements, where she stiffens up her upper body and her legs, repeating the cycle of seizures for the next 10 or 15 minutes. We started heading back home after I saw this cycle unfolding, so by the time we ended up near the house, she had stopped, but it quickly wore her out. She was quiet the rest of the afternoon - not irritable, yet not doing much at all but resting.

We did talk to her neurologist earlier this week and Mira's biopsy results came back normal. I guess we can check NCL off of the list - the long growing list of things Mira doesn't have. We were told it was a only a very remote chance that anything would surface from the test, so it wasn't much of a surprise that it came back negative.

Saturday, July 2, 2016


Mira started off this month in a sour mood. She did alright this morning for a bit, but we pressed our luck when we tried to go over to Lawrence for lunch. Mira started to get a little fussy in the car, then really ramped it up when we sat down to eat. We only brought three bottles with us, two of which she finished in the car on the drive up, so with only one remaining, she finished off the last one in the first 10 minutes we were sitting down at the table. We were out of tactics and ammunition, so Sarah and I traded off, taking her outside and walking her around, while the other ate with the boys. Sometimes you simply have to pass the baton, and muster through what you hoped was going to be a simple, uneventful outing. It is always hit or miss with Mira and going out, so as far as today went, it was a big miss. That being said, it was incredibly loud in the restaurant and Mira has never been a big fan of noise in general. Then again, she was getting upset long before we actually reached the restaurant, so I have a suspicion it was something else that was bothering her, most likely something neurological. By the time we got back on the road, Mira was happy for a bit, but soon started crying again, until she was back in her element - her bed. She ended up taking a small nap and was in a much better mood the rest of the evening. Some days I feel like we are just better off staying at home and doing nothing, which frankly, is what we do most of the time. It's exhausting going out sometimes, thus we seem to do it less and less as a family now, especially during the summer, when everyone has their own idea of how the schedule is going to unfold for the day. We knew we were asking for trouble when we decided to simply go out to lunch with a surly 13 year old who is impressed by nothing, an 11 year old with severe disabilities, and an 8 year old who is on the spectrum, while they are all simultaneously complaining, in their own way, that they would rather simply stay at home. Three kids - three different agendas.