Vomiting

Perhaps not the greatest topic of discussion...............Mira has been vomiting lately and we are not sure what to attribute it to. Saturday, she threw up late in the afternoon, fortunately she was upright and in her Tumbleform. Tonight though, we had just put her down for bed and we heard her making some funny noises about ten minutes later and she had completely soaked the sheets, getting it everywhere. It could be from the medication or the fact that she has been really congested and it dealing with some drainage or something.

Otherwise, she has been doing very well, even rebounding very quickly from her stomach issues both times. We did see a few breakthrough seizures yesterday, but none today. She has still been in a great mood and is doing well in therapy during the day.

Day 3

Mira didn't have any seizures today either, which makes 3 days in a row seizure-free. This hasn't happened in a long, long time - in the last six months at least. I don't know whether it's the Lyrica or something else, but she has been in a great, great mood the past 2 days! She had a big belly laugh with 'The Bunz' tonight before bed - more animated than I have seen her in a long time.

Pumpkin Patch + More Pictures

I had a few additional pictures from last weekend from the train ride and Maple Leaf Festival and a couple from this weekend's pumpkin patch excursion, just outside of Lawrence. The weather could not have been better, but unfortunately, the pumpkin selection was pretty lean. We managed to get a few decent ones (see Eli sitting on his prize possession above left). Mira also had a good time, enjoying the bumpy stroller ride through the pumpkin fields. Since we were so close to Lawrence, we had to make a pit stop at La Familia for lunch. The sweet salsa is so good, it's almost drinkable. By the time we got home, everyone was sleeping, including Mira, who couldn't muster the energy to play with her pink sponge ball.

Mira started a low dosage (25mg) of Lyrica on Thursday and has been tolerating it very well. On Friday she had 2 intense seizures, but hasn't had one since, which is always promising. She will go up to 50mg on Tuesday and then we will see if she is still tolerating it. The therapeutic dosage for Lyrica can vary, so assuming it is helping, she will probably just hold at 50mg for a while.

Lyrica

We started Mira on a low dosage of Lyrica this evening and we will cross our fingers to see if it will give her some relief. She only had one tonic-clonic this morning, but she has been very irritable, having tons of twitches and small jerks all day, which is sort of where she was back in August, before she started the diet.

Recent Events

Saturday we took Mira out to a PT who specializes in hippotherapy for a consult and a session to see how she is she could benefit from weekly therapy. At first, she was very floppy on the horse, but over time, became used to the rhythm and movement and was much more relaxed after a few minutes. She even giggled a few times. Ultimately, we think it could be very beneficial for her and we are actively trying to get on the therapist's schedule for the spring.

We went to the Maple Leaf Festival in Baldwin City (after Mira's session) on Saturday and had a great time and enjoyed some fantastic fall weather. We rode the train from the old depot, while Eli tried to verbally apprehend several of the 'bandits' (a staged robbery skit/re-enactment they do on the train) by simply scowling loudly at them. It didn't work, but it was convincing.

Unfortunately, Mira has been doing pretty poorly over the past week, having multiple seizures every day, especially over the weekend, when she had a dozen or so. Her seizures have gradually become worse over the past several weeks and we are often seeing clusters of activity. She has become more irritable as well and they are really bothering her much more than before.

We talked to her neurologist about starting Lyrica (pregabalin) which is one of the few medications she hasn't tried, to see if it will help. As with all of the other medications, it either works or it doesn't. We had talked about increasing her Zonegran (she is already on a maximum dosage) or just taking her off of it (could potentially make things worse) so in the end, we decided to try Lyrica and not have any other moving targets at this point.

Past 2 Days

Mira has been off the Ketocal for a few days and her demeanor has improved. Although, yesterday she had another cluster of seizures which Sarah had to use the Klonopin to interrupt the cluster. She had 3 seizures within about 20 minutes. Today was better for her and we were able to get a few smiles out of her before bedtime.

Tomorrow we are going to meet with a therapist to potentially start hippotherapy with Mira every week.

Aspartame + Artificial Sweeteners

Mira is rebounding from a rough few weeks and we have made some changes, starting yesterday. We noticed that she started becoming increasingly irritable soon after starting Ketocal, about two weeks ago. I really hate to sound so jaded, but I attribute her problems directly with Ketocal and what it has in it. It contains aspartame, which is an artificial sweetener. While there is some truly frightening literature out there (read this story or this one and why not another or get the book from Amazon.com, read them and form your own opinions) I can't help but believe that aspartame is a seizure trigger for her or at a minimum, causes some issues with her.

In addition to causing irritability issues, the Ketocal was also causing a lot of constipation, which stresses her out. We stopped the Ketocal yesterday and gave her several doses of Miralax over the past day and a half and she has been doing remarkably better than she was yesterday. She still had 2 seizures, but she is in a much better mood and stopped twitching. And yes, she pooped A TON today. If you want details, Sarah and I can provide.

Regardless of whether aspartame is a trigger or not, we are going to stay clear of it (along with other artificial sweeteners) all together and talk to neurology and her dietitian about alternative methods of boosting her ketones.

A Mixed Week

Mira has had some difficulty this week, especially Thursday and Friday. We started seeing a bunch of seizures earlier in the week, which took a toll on her. We saw even more on Wednesday which prompted a call to neurology, since we were afraid that she was going to have another episode similar to last week. They gave us a prescription for clonazepam (Klonopin) wafers, to use as an additional 'temporary' medication to help her get through bad days. Mira had tried Klonopin a long time ago, without success, but now she will use it on occasion if she has frequent episodes or multiple seizures. She can still use the Diastat (Ativan) to stop the clusters, but not in conjunction with the Klonopin - the two have to be used independently.

Mira has also been vomiting some this week. She had an episode on Thursday night and again this morning, as I was posting this, ironically. It might be that she is becoming more ketotic, which tends to mark an increase in nausea, vomiting, and/or diarrhea. Sorry, Mira's diet topics are typically not a conversation to have over dinner.

Speaking of ketosis, we are still working with insurance to move forward on the Ketocal, but have been having difficulty pushing the paperwork through thus far. It is moving along, though.

A Positive Rebound

Since her episode last Tuesday, Mira has been doing significantly better. We don't know what her status seizure could have been attributed to and chances are, we will never know. Her seizures and episodes are so completely random that we quit guessing.

Since last Tuesday, she has only had 3 seizures (in 6 days!), which is fantastic. We think the Keotcal boost has really been helping her, so we stocked up for the next few weeks. We should be getting our first shipment tomorrow. We had to make a run to Children's Mercy this afternoon for another can, just to get us by for the day. Although Mira is only supplementing, we will be going through a can every 5 days, which equates to over $2000 a year, just in Ketocal alone. Thanks to Sat Inder, Karta Purkh, and Auntie G. for contributing to Mira's Ketocal fund!

On a side note, Sarah and I celebrated Sarah turning 29 (for the 4th year in a row.....) at 40 Sardines. We decided to skip our usual favorite locale, Le Fou Frog and try something new. I can't say that I was all that impressed with our choice, which is disappointing, since I had heard rave reviews about the joint. Could have been an off night I suppose. After all, it was 'opera' night at the restaurant and I did win a CD out of the deal by Anna Netrebko. It would be great if I actually listened to opera and could pronounce her name, but I cannot do either. Oh well, guess I'll stick with Thievery Corporation.

Anyway, thanks to Auntie Aura who braved our evening out by watching all four kids!

A Scary Tuesday

We had a very scary moment with Mira on Tuesday afternoon. After a fantastic weekend (2 seizures in three days with none on Sunday) she had 5 seizures within a couple of hours on Tuesday afternoon. After her sixth seizure around 3:30pm, she started twitching and jerking repeatedly for a while afterwards (not uncommon), but then began having what seemed like a status seizure. We are not sure exactly what it was, but it could have been what is referred to as complex partial status epilepticus. She began squeezing and tightening her hands, arms and legs repetitively and consistently every 30-45 seconds.

We didn't want to be too concerned at first, as her breathing wasn't labored and she didn't seem to be in any pain. Although she had been quite distressed after each tonic-clonic ("big") seizure she was really zoned out from the start of this "episode." It became apparent to Sarah after a few minutes that she was having clusters of activity and was staring off repeatedly, tensing her arms and legs over and over.

We called neurology to get a hold of Mira's nurse to try and understand if this was a prolonged seizure or if she was going into status or what. I had left work early and was headed to CMH at that point to pick up Mira's Keotcal and was able to discuss her situation directly with our neurology nurse, Lynn. She told me that it sounded like a status seizure of some sort and recommended administering Diastat regardless, which we have as a rescue/emergency medication. Sarah gave it to her as I was leaving the hospital and her clusters and squeezing stopped almost instantly. This episode went on for about an hour and 15 minutes total.

Needless to say, we have never seen this sort of seizure activity with her before. If there is one thing that is consistent with Mira is that her seizures are inconsistent. Different types, different times, ever changing patterns. We were watching her like a hawk today and ironically, she didn't have a single seizure or episode all day.