NaBloPoMo... day 20
I just realized that I never updated anyone about Justin's seizures... shame on me.
I went back today and read that post. The one that shared the Epilepsy diagnosis. I cried!
I cried even more when I read the comments again.
You guys are so awesome... but you still made me cry!
Anyway... its been about 3 1/2 months since Justin was diagnosed with Absent Seizures. Would you believe that we are JUST NOW getting the medication straightened out? We picked up our first increased prescription today.
We have been given three... he has taken two of them.
Medication #1: Zarontin- Justin was only on Zarontin for about 11(ish) days because he ended up having a severe reaction to it. What started out as "noticeable mood changes and not sleeping well"; turned into severe stomach pain and vomiting.
The day I decided to stop the medication I took him to his pediatrician... I had him checked out head to toe. Had blood work done and made sure there was nothing else to blame this on before I called the neurologist and said that's enough. That morning was the last dose he had. I watched my son double over in pain for a few more days while the medication worked its way out of his system. He didn't even want to play... not even the PlayStation. He also missed 4 days of school.
Medication #2: Lamictal XR - HELL NO!!! When the office called me about the new medication, they said we would need to come pick up a "starter kit". She said she was going to put the directions on it along with some things to look for. Okay!
Anthony drove out there. When I came home from work I started checking out this medication. I was instantly worried that it would take FIVE WEEKS to wean Justin onto it. FIVE! WEAN! FIVE?!
Wean to the point of only take half the dose every other day for the first two weeks.
I called the pharmacist.
I asked her if it takes 5 weeks to wean on... how long before he can get off in the event of another reaction. Yeah! 5 weeks.
The other issue was that it is known to cause a severe rash. As rash that could "cause hospitalization and in some cases death". I was to call at the "first sign" of any rash. There were other concerns... and in the end, my gut said not to do it.
Of course, that was on a Friday. I had to wait until Monday morning, but I called back and told them to give us something else.
Medication #3: Depakote- This is what he "usually" prescribes for this kind of seizure, but one of the side effects is rapid weight gain. The doctor didn't want me to have to deal with Justin gaining a ton of weight because of Diabetes. When I asked "how much"... he said "like 10 pounds in a month".
When it came down to it I said, "I will take my chances with the weight".
We've been on the Depakote for about two months now. We recently had to increase the dose because Justin was still having seizures. So far there has been no bad reaction and the increase seems to be working. Thank God!
As for me... I'm trying to plant that smile. I am okay if I don't talk about it. I am okay if I don't tell you the story about the mall parking lot. I am okay if I don't tell you about taking pictures(flash bulbs) over spring break . I am okay if I don't think about it at all.
Kind of in an "avoidance" stage, I guess. I have pushed it so far to the back of my mind that I forget its there until its time to take the medicine or he has a seizure.
I know it could be worse... but he is MY baby and it hurts when he is faces with these challenges.
Here's to no more surprises; and if there are... please let me coincidentally have another bottle of wine. Then again, I might need something a little stronger if anything else sneaks up on me.