I wish I could say that Raquel's seizures have improved, that's not the case. They have increased quite a bit - and I'm getting very concerned because I can't seem to identify what is triggering them. Simply being overly tired and overly stressed isn't working for me anymore.
She had a pretty good week in school last week, a couple mild seizures again in class, but nothing to the degree where I had to go pick her up. Friday I kept her home from school because she was sick - one of the perks of being back in school as everyone knows - and then I decided to keep her home again today because of the seizure activity yesterday and then again early this morning.
Yesterday's seizure pretty much came out of nowhere. She had a good morning, appeared to be feeling much better (from what I call the ace in my pocket - Frankincense & Myrrh Cold & Flu Prevention Homeopathic Rubbing Oil. I rub 10 drops to each foot at night before bedtime when symptoms start, and, wah-lah, it boosts immunity, and it is all natural.) We did errands in the morning, had lunch and a bath, had her meds on her regular schedule. When I was dressing her after the bath, she got really stiff in my hands and her eyes started to roll back. I immediately layed her on the floor - and, of course, called Gabby. Her face turned red and she began to shake a bit, but remained very responsive to her name and would even follow Gabby's eyes back and forth to keep looking at her.
What happened after this seizure was completely different and concerning. After she "came to", she rolled over on her stomach, which wasn't typical. Usually she gets up and walks around like nothing happened. Yesterday, she layed on her stomach for a minute, still shaking briefly, and when she finally was able to get up and walk around, her head would drop and twitch and she'd lose her balance. This happened maybe 5 times. I'm assuming this is what parents are referring to as head dropping seizures. Not sure.
Last night she slept soundly, and I had every intention of taking her to school this morning. But just as I was getting her changed into school clothes, she checked out on me again, but very briefly. I thought it was best to keep her home and let her rest some more. My respite worker thankfully came so I could go to work, and when she took her on her usual walk, she had another seizure in the stroller. She then slept off and on until I was able to get home later this morning. So frustrating.
Dr. Mower has talked to several neurologists and has reviewed Raquel's medication therapy and tests/results with them and again wants me to meet with the Ketogenic Diet Nutritionist. We've been playing a bit of phone tag, and am waiting to get my initial appointment scheduled. Although I'm very concerned about this diet - from what I've read it's similar to an Atkins thing and exactly the opposite of how I cook - most of the people from the Keto support group report amazing things. I spoke with a mom today whose kid has been seizure free since starting the diet in the last year and is also no longer on any medications. As much as the diet concerns me, I'd much rather, at this point, try something like that instead of introducing another medication and dealing with more harmful side effects. Hopefully I'll get the consultation scheduled soon and can make decisions from there.
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