Tuesday, April 21, 2009

I desire your opinion.


Miles has seizures.

I hate that he has seizures and I’ve prayed that he would never get them and I’ve prayed for him to not have them anymore, but he still has seizures.

After trying different medications, doses and combinations for the last two years I’ve found a regiment that significantly reduces his seizures. He could have up to 15 or 20 seizures a day, but with the medication he may not have any at all for weeks or months. Sickness plays a lot into how many seizures he has.

He takes two different seizure medications twice a day.

Well, last Wednesday I called in a refill for most of his medications and a couple of the refills had ran out so the doctor had to be faxed to renew the prescription. This is normal routine. That’s why I usually call ahead a day or so in case that happens. Usually the doctor renews the prescription on the same day and I’ve never had any trouble before. This week was different. The doctor in Ft. Worth did not fax the prescription until just yesterday. I called the pharmacy several times to check on the refill. I went over there twice. I called the doctor, Miles’ neurologist to refill the prescription and finally yesterday evening I was able to get his medicine.

That was just the background to what I wanted to say.

Here’s the thing. Miles was out of that medication for 4 and a half days. As soon as the next morning without a dose his body was affected. His arms would jump involuntarily and he would twitch. He had several mild seizures during those days. The fourth day he had a couple of harder seizures; the twitching was still going on and loud noises made him a little over stimulated. It seemed like the sudden loud noises scared him.

BUT, he was so alert! He was very alert those four days. He didn’t take naps all day long. He was awake, alert and happy. He did have seizures during those days, but they only range from about 10 seconds to 30 seconds, and he doesn’t cry after most of them. It’s freaky, but we’re all used to it around our house.

Here’s the thing. He got his medicine last night at 9:00. He got it again this morning. It’s now 11:30 in the morning and he still has not woken up. I knew this was going to happen. I knew since he didn’t have the medicine for a few days that it would knock him out, but it’s not just that. It really showed me how dazed he usually is because of the medicine.

The medicine will regulate in a few days and he won’t be in a coma like state anymore, but he also won’t be who he really is either.

So, this is my question that I would really like your opinion on: Which is better, to be medicated and almost seizure free or to have seizures and twitches but not dazed? Please give me feedback on this issue.

2 comments:

Marissa said...

Hey Brandi, it's Marissa, Cynthia's friend. I love reading your blog! You are so encouraging.

Here is my opinion, if the seizures are harmful to him then I say stick with the medicine. If they put his life in danger more than taking the medicine does, I'd keep doing it. I know that is kind of a duh statement, but maybe him being aware was so exciting that this thought slipped your mind. I think that I would keep my child on the medicine for the sake of my fear that just one bad seizure could really hurt him.

I think you are such a great mom! Every blog I read I think, "Gosh I want to love my kids this much, and be thankful for them as much as she is"

Hope you are all doing well!

Marissa

CALL ME MCKEE said...

THIS IS A VERY HARD BLOG TO LEAVE A COMMENT ON MISS BRANDI. I HAVE TRULY DO NOT KNOW WHAT TO TELL YOU HERE BUT TO FOLLOW THE VOICE OF FATHER.AND YOU ARE AN AMAZING MOTHER....
YOU ARE SUPER MOM IN MY BOOK, I THINK I NEED TO MAKE YOU A BLINGY CAPE FOR YOUR B-DAY....WINK WINK