The rough road of new medication.

>> Monday, June 23, 2014

Some people may find this weird, and unless you have walked that 500 miles in my shoes you may not understand the reason for the new medication when the CBD Oil I fought for is on the horizon. Well, let me detail a bit:

Bug has a folate autoantibody. Boo Hiss. Folate is VERY important to our day to day operations as human beings. ANY folate he gets can be rejected in spectacular ways. Any folate his body produces gets partially rejected and definitely misused. He has to take an analog folate supplement to ensure he gets enough folate to his brain. It crosses the blood/brain barrier so rapidly, his body does not get the chance to reject much of it. He is doing VERY well on it VERY well indeed.

BUT, his number one medication that has helped him, blocks folate binding. Oh goodie. The Lamictal BLOCKS folate. So although it reduces his seizures (GREATLY) it also makes what cause the seizures worse. So we are treating him with one thing that makes treating him with another not as effective. It sucks.

We needed to change the Lamictal. Vimpat is our choice.

Vimpat also is a sodium channel drug. It has similar properties to Lamictal but without the folate issue. Over the last 2 weeks we have been bringing up the Vimpat.

It has be sucktastic at times and interesting.

Starting dose: 50mg at night

His vision was funky. We know this because he was squinting and turning his head a lot. Two hours into the med, it seemed to stop or he adapted, either way, it got better. He still had a few seizures, one after the medication. Bummer.

The next week we upped him to 100mg a night. Again, the vision issue returned and again, it disappeared. He was still having seizures but they weren't any worse and his vocalizations stepped up. Happy humming for a week now.

Then, he accidently got a 100mg in the morning and it was a pukefest. Zofran and reduction of Vimpat later, he was OK by that evening. He did NOT get any that evening.

But the next morning, Daddy gave him a full Vimpat. And true to form, Bug puked.

So two days ago I kicked everyone out of the medication dispensing and got him stable on 100mg in the evening again. Last night, he had his 100mg of Vimpat and everything else and still had two seizures after administration. Not cool.

Today, he had a 50mg in the morning (a day passed his regular bump up) and the Lamcital, Luecovorin and Zofran.

He is cheerfully humming and spinning and sitting on me. I have one of his long legs over my arms as I type, one leg on my leg and he keeps looking at me and smiling alternating watching SpongeBob.

I have not seen any seizures today so far. Knock on wood.

We sit stable at:

Morning -

200mg Lamictal
25mg Leucovorin
50mg Vimpat
Calcium Phosphate
4mg Zofran

Anxious to see how he does tonight. Fingers crossed.


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