Change can sometimes be a very gradual thing. Generally in life, that makes adjusting to change much easier. Over the last couple of weeks, we have come to realize that "normal" or what they call in the medical world "baseline" for Elise has been slowly changing. This kind of change hasn't been for the better.
As I have discussed before, Elise has a pretty severe seizure disorder. She has myoclonic and drop seizures that have been uncontrolled by all medical methods we have tried. She has single drop seizures throughout the day and clusters together many seizures at various times throughout the day. On good days, when things have been under the best control, she will have 100-150 seizures. We haven't seen those good days in a little while. In December Elise came down with the flu. This originally changed her "baseline" for the better. She even had a couple of days where her seizure count was in the single digits for a whole day! In January she came down with a different strain of the flu. After a sickly couple of months it is not unusual for her to take several weeks to establish a new "baseline". We are quite used to watching her, experiencing new things. and being aware she will slowly return to whatever her new normal will be.
We have been watching and eagerly waiting to see how things will be different. Reluctantly we see that things are different, but we don't like it! We try to count her seizures 2 days per week to keep an accurate record of changes over a period of time. It is easy to say, this has been happening forever because it truly feels that way. But, with the doctor, it helps to be able to accurately say that things began to change on this date and I have the evidence to support that. While Elise was sick we stopped counting seizures and have gotten out of practice for several months. Today, we decided to get back on the horse and count. That isn't always easy to do at 3:30 in the morning when you would rather just fall back asleep and your brain doesn't always want to count higher than five.
I would say that today was an average day. After almost 24 hours, Elise had 405 seizures today. Wow! How was she even able to function? The first seizures began at 3am. Most times she is tired after seizures and willingly goes back to sleep quickly. She doesn't always stay asleep, but she will go back to sleep. Today, that didn't happen. She was up from 3:00 - 6:00 a.m. and then finally decided to go back to sleep. Later this morning I decided to take the girls with me to look for some spices from the KC Barbecue Store. As soon as we were about to pull away from the store Elise had a seizure in the car. I put the car in park and went around to the rear passenger door to hang out with her and try to prevent her puking all over the back of the car. Instead, she apparently either bit her lip or her tongue during one of the seizures and was bleeding everywhere. Between the blood, the drool, and the seizures a joyous time was had by all. Once that cluster was over she dozed a bit in the car, but was up and at it when we returned home 20 minutes later. She had another cluster after we left an event at church this afternoon, other cluster an hour later when we tried to take a nap, and her final cluster at bedtime.
As we discussed it tonight we are always amazed at what you get used to. It felt like she "might" be having more seizures, but double her previous baseline is quite a change. Quite a drastic change really. On top of that, she has been having drop seizures and falling more as of late. Right now, she kind of looks like a prize fighter again. She has a really ugly multi-colored mouse under her left eye, several scratches on her nose, and a very ugly scrape and multi-colored bruise under her chin. It's a good thing she wears a helmet with a face guard isn't it?
One of the biggest challenges we face is in making medicine adjustments for her. For one thing, they rarely ever (could be read never) work and it takes forever to get her back off of a failed experiment or make further adjustments. She has taken dozens of medicines for her seizures, been on a seizure control diet, and attempted chiropractic treatments for seizure control. Usually something new works well for a couple of weeks, but we are back to the drawing board within a month or two at the most. Changes to medicines or routines means more tracking, more record keeping, and more communicating with the doctors office. Having a child with special needs, the last thing you need is to have to keep track of something else or to be given more to do. With the laundry list of specialists that are seen as well, more doctors appointments or phone calls aren't high on our list of desirable activities either.
But, unfortunately, those things are necessary evils. While we don't like it, and are too busy to do it, most of Monday will be spent on the phone with various offices in the midst of all regularly planned activities. Until changes can be made, we will continue to count, wash the blood and puke soaked coat, and take advantage of the "good" times when they are available. Even after a day like today, Elise can laugh and be happy. There is no reason that we cannot do that as well!
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