A Whole New Level of Cranky

We aren't exactly sure what was going on with Mira all day today, but she was extremely irritable. This morning she was fine for a brief moment in her chair, but her mood turned sour for the rest of the morning. An hour later, it progressed into a full-on wailing at the top of her lungs, with intermediate whimpering and sobbing, for the entire morning. She finally quieted down right before lunch time, then took a nap for over four hours. Yes, a four hour nap. She finally woke up before dinner, had a repeat performance of wailing and crying for another hour or so, then when back to bed. She has been drinking plenty of fluids all day, doesn't have a fever, and no other visible symptoms, but obviously, something was seriously bothering her. She isn't constipated and her hands and feet were fine. No big seizure activity at all - some isolated 'lighting' jerks on occasion, but nothing else. She wanted nothing but to be back in her bed - no racing around the house or even walking around.

The Winds of Change

Mira had a much better day today - a drastic change from yesterday. She didn't have a ton of patience after breakfast, but then again, that is pretty much the norm for her. She drank a fair amount and wanted to be back in her bed. Apparently, she didn't get enough sleep, because she ended up taking a 2-hour nap shortly thereafter. We only went for one walk today, which Mira was super excited about - kicking her feet and vocalizing most of the way down to the store. It was incredibly windy outside, so we didn't end up going out after lunch, but Mira didn't seem to mind. She was content hanging out with us watching a little football and cleaning up the house. She was really only fussy in the morning for a bit and then once late after dinner, but both times, it was very brief and probably because she was tired.

Just Keep Walking

Mira has been irritable again today and the only remedy for her crankiness is going for walks. She was in a decent mood this morning for a few hours, but right after lunch, she ramped up the irritability. We went for our first long walk, down to the post office and the grocery store, then came home and she took a nap. After she woke up, she was cranky again and wanted nothing to eat, so we went out on another excursion, just around the neighborhood. We seem to do a fair amount of walking on the weekends, to try and break up her boredom or whatever is ailing her. It's always fun to track steps on my phone - after finally checking it late today, it seems today was an active day. Counting some errands this morning, I ended up at around 20,000 steps. Fortunately, the weather was tolerable and we were able to get outside and actually go for a few walks. It was a little chilly at 50 degrees, but we bundled Mira up and she was very enthusiastic about being outside in the sunshine. I'm crossing my fingers for similar weather tomorrow.

Rough Week Ending

Mira has been really off the last few days, riding the roller coaster up and down, irritability wise. She has been having really big seizures at school too - one Wednesday and one on Thursday, both in the afternoon, both around the same time. Despite not having the toy, she is still having seizures, which isn't a surprise, I suppose. We haven't seen any involved tonic-clonics at home for nearly a week, but obviously, her toy is not the primary issue. She still finds a way to have seizures. The last three days, she has come home from school either sleepy or irritable, sometimes both. Today was her last day at school until after the new year, but it wasn't a good day - she was fussy off and on for the entire morning and by the time she got home, she was a wreck. She must have been having stomach woes because she is having a ton of BMs lately too. Just a whole lot of poop - not sure where all of this activity is coming from (or whether it's the most riveting topic of discussion for her blog), but it's just reality. I hope this isn't a preview of what to expect for the next 17 days at home, as we are all destined to lose our sanity. There are some days I wish we lived somewhere warm, where we could at least occasionally shatter the inevitable cabin fever we will all soon experience, by getting outside and take Mira for a walk or something, just to get outside in the fresh air. Kansas City weather doesn't always cater to our needs - 25 degrees one day, 60 and raining the next day. Time to move to southern California for awhile.

Toy Withdrawal

Mira has been very up and down today. She was irritable when she woke up - no seizures and not even any myoclonics that I could see - just fussy. She has had a few 'lightning' jerks throughout the day, but hey were very brief and random. Her teacher said she had  good day at school - she was even giddy with excitement when it was time to go out for recess. She tolerated the Kidwalk at school and overall, had a decent day. This afternoon at home however, she has been on a roller coaster. At times she was wailing, with tears streaming down her face. She definitely misses her toy and is going through withdrawal not having it for the past few days. It's going to be a long road ahead.

Rain and Sleep

It has been raining heavily here all day. which usually means one thing - our basement will flood, which it did, in full force today. We live in a 60+ year old ranch house, with foundation walls that leak like a sieve. It is a steady flow, never more than just surface water in a few corners of the house, but enough to be a headache. We put an addition on the house back in 2009, which doubled the size of our current footprint, but we built it with a crawl space foundation, in order to save money. It has not leaked a drop. Our existing foundation however, leaks through the walls, the floor, and everywhere in between. It has become a recurring problem when it rains heavily, which there isn't much we can afford to do about it right now, accept channel the water from the corners to the basement floor drain, and keep everything protected and off the floor. The basement is not finished, so there isn't much down there but storage bins. After 16 years of dealing with this, 2016 might be the time to fix it, if we can afford it. Being an architect, I sort of know what our options are from a structural standpoint - it just comes down to the level of invasiveness we want to take on and how much money do we want to pour into trying to remedy this.

With the rain comes sleep. Mira spent nearly the entire day, sleeping. Today was Day 1 without the toy and Mira voiced her objections a few times, but for the most part, she was completely out of it and in her bed. She woke up after a late lunch, had a few bottles, then went back to sleep. She did the same thing around 6:30pm, stayed up for about an hour, drank a few more bottles, then wanted back to bed. She wasn't up for racing around the house or for just hanging out in the living room with us.

The End of an Era

All good things must come to an end. I was happy to give an update earlier with Mira not having any seizures for almost a week, mainly due to her not having her toy. As the week progressed, Mira became increasingly irritable, until we reached a breaking point and ultimately, gave it back to her. Much to my amazement, she didn't have a seizure the first two times we returned it to her. That was short-lived. The past several times we have re-introduced the toy, her myoclonics became more pronounced with each exposure, and in turn, prompted us to limit her time with it, the moment we felt things were becoming too intense for her. Everything came to a head this morning, when we gave her the toy and she instantly erupted into a huge seizure. Following the seizure, she was completely off for the rest of the day - clammy hands and feet, sweating, and tons of drooling. Unfortunately, the pattern has become so consistent and established over the past 6 months, that she can no longer play with the toy at all. We are forced to retire it permanently. I cannot believe we have reached the point in this journey where we have to keep something from her that has brought her so much entertainment and joy for the past 8+ years.

Caving to the Fuss

Typically, I am starting off every post with Mira's daily seizure count and frequency, but for now, I have nothing to report in terms of seizures. Mira has not had a major seizure since last Friday and not since we started the fluoxetine. She has had some brief morning myoclonics, but nothing more. However, with every medication alteration over the past 10+ years, there always seems to be a negative side to every positive checked box. Mira has been very irritable over the past three days - fussy at school and fussy at home. My first reaction was to chalk it up to the fluoxetine, but I think (and hope) it is something else. I think she misses her toy. As I posted on Sunday, there is the expectation from her that once she is settled in her chair, that toy needs to arrive in front of her on a silver platter (aka her tray) within the first five minutes or there will be trouble. She loves that toy.

Having gone 5 days without the toy and having to deal with a lot of fussing and anxiety, we relented late this afternoon and gave it back to her. I was expecting her to immediately launch into a seizure, but rather unexpectedly, she played non-stop for almost 90 minutes, without so much as a twitch. Mira was balling her eyes out and the second Sarah turned on the toy, her crying came to an immediate, abrupt stop. She stared at it with her mouth open as though she couldn't believe what she was hearing. Focused and determined, she gazed at it for a solid 30 seconds before reaching out to start playing. Five days is the longest stretch she has gone without that toy since it was first introduced to her in therapy, more than 8 years ago. I hope this isn't an isolated reintroduction with it, but history has proven that the toy is a consistent seizure trigger for her, which is the reason we took a break from it in the first place. After playing for 90 minutes solid, I gave her a bath, put her back in front of it, and she continued to play for another 20 minutes, but she was visibly worn out from playing. We will see if giving it back to her will help tomorrow. For tonight, it was the toy for the win.

Interesting Day

Today was day 2 of starting the fluoxetine and day 2 for keeping Mira's toy on the shelf, thus it was an interesting, mixed day. Mira woke up having some subtle myoclonics, but they didn't last very long - only while I was getting her changed and dressed. She was in a fine mood for about 30 minutes in her chair for breakfast, but then became pretty fussy. I think there is this pattern that she has been accustomed to for so long, thus an expectation that she is going to have her toy in front of her. Disappointment sets in once she realizes it isn't coming. So, I put her back in her bed for about an hour, then a cycle of fussing, drinking bottles, racing in her chair, and going for walks in the neighborhood began, for the next 6 hours. Finally, about 4:00pm, she completely clammed up. She was in her chair, as calm as can be, just looming around the room. It was really strange. She was scanning the room, rubbing her hands together, not making a peep. She sat while we cooked and ate dinner, still not making a sound - wide awake and alert, just not objecting to just chilling out in her chair, hanging out with us. After dinner, I gave her a bath, which usually sends her into a tailspin of irritability, but she continued to be quiet as can be, still not opposing to anything she was subjected to, even the hair washing, which she typically gets really upset about. It was certainly an odd day, like a light was flipped on with her late in the afternoon. She went from needing to be constantly entertained, to being extremely chilled, just going with the flow. Other than the brief myoclonics this morning, she didn't have any other seizures the rest of the day, which makes 2 consecutive days without a tonic-clonic, which is fantastic! If she can't get used to not having the toy and if we can try to keep her busy with other distractions, while perhaps crossing our fingers with the fluoxetine, I hope we might see a significant reduction in seizures.

Fluoxetine

We started Mira on fluoxetine today, which we thought was logical choice, seeing as we could keep an eye on her over the weekend. It is a once a day dosage and has a very long half-life, yet we were told that she would fairly drowsy the first few days. It takes a few weeks in the system to reach its potential efficacy. Starting her on fluoxetine was going with the hope that an SSRI might help her irritable disposition, which is something we deal nearly every day with Mira. I suggested trying it with her neurologist at her last appointment, to address her mood,  but also based this idea on the studies and trials I had read, which used SSRIs for seizure control - fluoxetine in particular. There are numerous abstracts regarding Dravet and SSRIs as well and if anyone is interested, you can search for them through PubMed. One of the more current (very generalized concept on it) is located here.

Mira did not have any seizures today, mainly because we kept her toy from her all day. She wasn't too happy about that, as she a few irritable spells and wanted to spend as little time as possible in her chair, after realizing she wasn't going to play with it. Each time we took her out of her bed, she lasted less than 15 minutes in her chair before she got upset. She did spend a fair amount of time napping and sleeping, but nothing out of the ordinary, especially for the weekend.

The Toy Hiatus

Jonah spent another day on the couch, but slowly broke out of his shell by the afternoon, even wanting to play some hide and seek after dinner. He didn't eat much all day, but finally had a reasonable amount to eat at the table. Eli continued to have chills and sweating throughout the day, taking several showers to try and cool off, when he was warm. By the end of the day, he seemed as though he was turning a corner as well. I hope this round of viruses is short-lived and really hope Mira stays clear of it. Mira was the only one who went to school for a full week, while the boys ended up getting another extended weekend, right after a 5-day stint for Thanksgiving break.

Speaking of school, Mira had a decent day at school again today, which was a nice turn of events from her irritable disposition earlier in the week. We have given some serious thought about abandoning her toy permanently, as it is triggering a seizure, every single time now. Six months ago I would have never through we would be at this crossroads, taking away the one thing that she truly engages with consistently. Unfortunately, it has become a real problem. This morning, she became fussy, probably because she was bored in her chair, so I tried the toy, and of course, she had a massive tonic-clonic within the first 10 seconds. It's too much of a gamble and it's heartbreaking to keep it from her, but it is too much stimulation and consistently a trigger for her now. We are going to take an extended hiatus from it and see where this all goes.

1 out of 3

This week was fairly uneventful, up until this morning. After dinner last night, Jonah kept complaining that his stomach was bothering him, but couldn't elaborate much on exactly what was bothering him. At the same time, Eli was complaining that his head hurt and wasn't feeling well. They both went to bed at their respective bedtimes, then each woke up this morning to different ailments. Jonah had an upset stomach at some point during the night, as he threw up on the side of his bed, yet didn't bother to wake us up to help him - he just went back to bed. Eli woke up to chills and a fever of 102.3. Needless to say, they both stayed home from school, resting on the couch and taking it easy. Jonah hardly ate anything all day, but was able to catch up on a fair amount of Curious George episodes before dinner, then had another vomiting episode before he went to bed. We kept him up for awhile to make sure his stomach was a little more stable and to express to him the protocol for feeling ill in the middle of the night - please wake us up! Eli continued to shiver from chills on the couch, but his appetite remained intact, as he downed an entire pizza in less than 10 minutes at dinner. Ironically, Mira was the only one who went to school today. No fever, no vomiting. However, as history has proven, it's just a matter of time before the rest of us catch whatever stomach and/or flu-like bug(s) that are now floating around the house. I am crossing my fingers I don't get hit, as I have to travel to Canada again the beginning of next week.