Raise Epilepsy Awareness

I’ve joined groups on Facebook and I’ve talked with anyone around me who asks about my daughter’s seizures. I’m trying to make people more aware – and to spread the word that there are different forms of seizures.

The injections we’re giving her are a hormone/steroid thing.; we’ll give her the full dose for a certain period of time, then we’ll wean her off, with the idea that her body should take over production of the hormone.

Well, she has been on the medicine for about three weeks or so and she’s got an EEG scheduled for next week. I think that should be fascinating – she can suddenly walk better, squeal with joy, smile, hold a sippy cup…

It is a hormone/steroid. She’ll get one injection a day for three or four weeks. Basically, we give her the shot for a period of time, hope that it jumpstarts her body’s production of the hormone, and then wean her off the injections. Her body should take over production of it at that point.

We shall see. If this is the problem behind the seizures, her seizures will stop and her EEGs will go back to normal.

She’s had three total now and I swear she’s already talking more and walking better.

Well, encouraging, at any rate. The insurance company approved the hormone treatment that the neurologist requested/recommended. I was so sure they’d turn it down based on cost; apparently I’m far more jaded than I realized!

The medicine is being sent overnight; we’ll have it tomorrow and a nurse is coming to the house to show us how to give our daughter the shots. She will continue her antiseizure medicine for now; the doctor doesn’t want to change that for the time being. These shots SHOULD stop her seizures and return her EEG to normal.

WE’re still going to do bloodwork, but this is so encouraging. I’m so relieved, just that the insurance company is willing to let us do this, to try this.

The results are in: the MRI was fine (though they did find a benign cyst) but the EEG is abnormal. They want to do bloodwork and some other tests.

The doctor also thinks it is possible that she’s not having seizures per se – she might be experiencing infantile spasms. That has its own set of possible problems. I’ve got to look into this more, but it seems that (a) a fair number of children that go through this develop other types of seizures later, and (b) it is also associated with mental retardation.

Anyway, we’ve got to have the tests done, but there are several options to consider, one of which is a hormone treatment that would almost certainly stop the seizures and restore her EEG to normal. The cost? $23,000…per month. Yeah. The doctor said he’d obviously have to clear that with the insurance company – I’m not holding my breath.

I’ll update as I learn more – and when I’m less tired. It was a long day at work today.

Some days are just … rough.

This was one of the worst days yet. Little miss had five or so screaming episodes before 7 this morning, took a long nap, had breakfast, and proceeded to have a day full of both screaming episodes and actual seizures.

This was after two days of almost no activity.

Needless to say, our little girl was exhausted and pretty lethargic all day.

I want to fix it so very badly.

This coming week, she has an MRI and next week a trip to the pediatric neurologist. Hopefully, we will know more after that. Hopefully.

Well, things went better for our daughter today (than the last time). She didn’t throw up all over her grandmother, much to everyone’s relief. She was tested and came through fine, though she was THOROUGHLY annoyed to be disturbed from an apparently blissful sleep at the end of the procedure. My husband and MIL could hear her rage from the waiting room, well away from the action.

Yeah, my bad – she gets that from me, I’m afraid. If I am napping, just DON”T wake me up; let me wake up on my own. Trust me, it is just better that way. :-(

This week, our daughter will have an EEG on Thursday.

Next week, it is the MRI on Tuesday.

The week after that, there is the appointment with the pediatric neurologist. SIgh. And sometime, she needs to visit just your regular old doctor for the standard kid stuff…shots and all.

Poor thing, she’s really going to be poked and prodded this month. At least she won’t remember it!

I even had a chance to educate people at my grandmother’s funeral – well, at events surrounding the funeral. My daughter, unfortunately, had one of her screaming episodes and several of my relatives and friends of the family came up and asked us about her situation. Yes, it was a difficult time, but I welcomed their quetions. I am glad that I can help people understand more about this.

I’m hoping to take part in this next year. I didn’t realize that there was a walk in March of this year.

http://www.walkforepilepsy.org