Friday, May 6, 2016

8 weeks and still going good

Awesome face painting at the Epilepsy Walk
Cailyn's 9th time participating
We're at the 8 week mark and still good. She's still having seizures, we're seeing one a day but she seems to recover quicker. She's very much awake and family that was visiting a few weeks ago said they really saw a difference in her general alertness. She seems stronger too.

We were hoping to double her dose of oil after week 4 and did blood work to confirm her levels of her seizure drugs Onfi and Banzel. CBD can push Onfi higher and possibly toxic levels and push Banzel lower.

The blood tests have been a debacle.

Sample 1--lab tested the wrong drug and then didn't have enough blood to test the correct drug (they also jerked us around for 3 weeks saying it was coming)

Sample 2--Vein whisperer Nurse Shelby decided it was going to another lab--checked the materials from the lab to make sure she sent the sample in the correct vial--all good--and then it gets to the lab and they said the info in the book was incorrect--wasted sample

Sample 3--that was this Monday--had to stick her twice to get a decent amount of blood in the vial--poor girl is cursed with Mommy's tiny and perpetually rolling veing--they said it would take a week to get results.

So we're holding steady at the .15ml twice a day dose and hoping to get clearance to bump up the dose. It would be awesome if we could get down to one prescription seizure drug and the oil. I think she'll always need to be on some type of seizure medicine but at this time last year she was on 4 and now down to 2. Her neuro and I both said we didn't think that would be possible at her last visit---kinda whispered so we didn't jynx it.

So to recap--we're not seeing any negative side effects so far at this dose. Her sleeping doesn't seem to have increased or number of seizures.

One interesting thing is her body temp has increased to a more normal level. She's generally in the 96-97 range and one side of her body in noticeably colder to the touch (suspected from brain damage from infantile spasms) but now her temp is normal in 98s and her left hand doesn't feel so cold all the time. So we'll see. Maybe other benefits.

Will update again soon.

No comments: