Friday, March 25, 2016

Seizure Action Plan

I guess I spoke too soon when I said Mira was having an uneventful week. The kids had a half day and since my office was closed today, Sarah and I figured we would try and have an early lunch together, while the kids were in school. Lunch was awesome, but as soon as we got back in the car, we received a phone call from the nurse at Mira's school. She said Mira had 5 big seizures this morning and had another 9 or 10 additional seizures a bit later. Of course, we were alarmed, a she just had a similar day, just last week. We had to head home so Sarah could grab the car and pick Jonah up at school (who was getting out in 20 minutes) while I went to pick Mira up at her school. The nurse brought Mira up to the front office and Mira was kicking her feet and happy as can be. I was relieved when I felt her hands, which were completely dry. I was expecting Mira to be a wreck after so many 'big' seizures. As it turns out, the 14 or 15 total seizures she had throughout the day were no longer than 3-5 seconds each. After taking with the nurse, she explained that none of them were true tonic-clonics, but rather just a series of brief myoclonics or very subtle ataxic or dystonic events. That type of activity, in my mind, is not reason for alarm. I explained to the nurse, again, that Mira has a ton of those, every day and those types of seizures are very typical for her. The nurse seem to just want us to pick her up. I feel as though we are all not on the same page.

This is becoming a recurring theme at school. The nurse says shes is having 'a bunch of seizures' or 'multiple seizures' when in fact they are seizures, but nothing to really cause such a concern that we need to rush out and immediately pick her up. It is becoming very frustrating for us, thus we are going to initiate a meeting with the school to get an updated seizure action plan in place on Monday. I don't think the school nurse is used to seeing what we see on an average day at home with Mira and she is taking a very precautionary stance, by calling us whenever she witnesses more than a couple of myoclonics. I wouldn't necessarily call it overreaction on her part, but I don't think it is necessary for her to call us when this type of activity surfaces at school. We never intervene with rescue meds unless she is having multiple tonic-clonics within a short period and usually when that happens, Mira is significantly altered, because the seizures last for 45 seconds or more and they are intense and awful. She becomes visibly affected, clammy, rigid, and extremely lethargic.

The last few times when we rush up to pick Mira up, it turns out that all of the seizures she is having are brief jerks and subtle seizures that are very short - she typically doesn't bat an eye at this type of activity and it is common for her, every day. In the 10 1/2 years that we have been witnessing seizures, Mira has never stopped breathing. She has never gone into respiratory distress. She has never had a seizure that lasted more than a minute and most times, she is periodically breathing 20-30 seconds into it. Those tonic-clonics are terrible to witness, yes. When she has this type of heavily involved seizure repeatedly, yes, it calls for intervention and we know when to intervene. When she has a subtle arm movement, myclonic, or brief altered stare, it is not something you need to react to - she does this a lot and in fact, there is no reason to inform us that we need to pick her up. There is nothing we can do about it - Mira just has them and she has them frequently. It is obvious that we need to all have a sit down and get a plan in place with the school, as it is causing a lot of confusion and unnecessary stress with everyone.

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