Two days ago, Ren had another seizure. It was around 10:00 in the morning, and she was still in her bed (she is a late riser!), and T had her on the tv – we have a camera set up in her room – though the camera was only showing half of her bed at the time – and he did glance at it at one time and saw her arm moving around, at about 10:15, but he figured she was dancing, something she often does. However, around 10:30 he decided she needed to get up, so he went in there, and discovered her in the midst of a grand mal seizure. I was across the street at my parents’ house, tutoring a boy, and so I wasn’t there to help as he frantically searched around for her Diastat, a valium-type medicine to give if she has a seizure longer than 5 minutes. He called me, and by the time I got over there, around 10:40, he did find it. He handed it to me and I had to read the directions – thankfully the directions were right there with it – trying to stay calm, and administered it to her.
T called 911 still because we think that is what the neurologist instructed us to do if she has a lengthy seizure. The first responders came, but because we had administered the Diastat, they did not do a whole lot except take down information, which they gave to the paramedics when they came. Even though the seizure was slowing down, we thought we should still go to the hospital to get her checked out. I went with in the ambulance, and by the time we left, her seizure was almost gone. However, she had been having it for at LEAST 30 minutes by then. We again had no idea when she actually started, since she was in bed. All three of her seizures have occurred while in bed – Two of them occurred in the morning, and one occurred during her nap time. So, we have not been able to witness the starts of any of her seizures. Supposedly seizures can commonly occur either right as a person is falling asleep, or right as s/he is waking up.
We were only at the hospital about an hour. After getting instructions to increase her seizure medication again, we were discharged. Ren was very weak, tired, and not herself. I know having that big of a seizure is very hard on her body, and the Diastat/valium also mixed up her body quite a bit. That afternoon she slept almost 3 hours. She had a slight fever, and she was unable to keep anything down, not even juice, and did a lot of vomiting. We had her sleep in our room in a pack-n-play, so we could keep an eye on her. The night went well, and she was able to eat and drink some the next day, though she was still not quite herself – very quiet and mellow, and still a little weak and tired.
Finally, today, she is back to her happy self. We are happy to have her back.
Several people have asked me if anyone has given an explanation for her seizures. Well, we’ve had a few theories. The emergency doctor said, she has a seizure disorder, people with seizure disorders are going to have seizures. Another doctor said, she has an infection, and infections can decrease her seizure threshold. (She was diagnosed with a UTI earlier that week on Monday – When we had the urology visit, they took a urine sample and found some bacteria in it, but we had just been informed of it Wednesday evening and had not gotten the antibiotics for it yet. We don’t know how long she’s had the UTI because she was not symptomatic.) I think her polymicrogyria (see previous posts for description) is the main culprit, since I have read that it can be a cause of seizures.
I am very worried about the length of the seizures she has had. A seizure longer than 5 minutes is considered an emergency, so hers of 30 minutes and longer is pretty dangerous. She has not been officially diagnosed as having this, but I have read about status epilepticus (please click on that link and read a brief definition) and I think it sounds pretty much like what she has experienced, and that scares me.
Please pray yet again that she will no longer have these long seizures. Pray that as she gets older, they will not get worse, but instead decrease or be nonexistent. Please pray again that she will not have any damaging, long-term effects from these seizures. And, of course, continued prayers for healing of her legs, improvement in speech, and overall good health are always needed.
Thanks so much….