Wednesday, October 31, 2007
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.
Monday, October 29, 2007
Sunday, October 28, 2007
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.
Thursday, October 25, 2007
Tuesday, October 23, 2007
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.
Friday, October 19, 2007
Tomorrow we are going to meet with a therapist to potentially start hippotherapy with Mira every week.
Wednesday, October 17, 2007
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.
Saturday, October 13, 2007
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.
Monday, October 8, 2007
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!
Wednesday, October 3, 2007
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.