March Cannabis oil update

Wednesday, April 1, 2015

I haven't said much about our trials with cannabis oil yet. Part of the reason being I wanted to have excellent news to share and honestly its been a rough start. 

 I never got my hopes up that cannabis oil would be miraculous or suddenly heal Paloma but hoped to see some difference considering how hard it was for us to obtain.  So to recap since last July at 13 months old Paloma started having an increase of seizures and new seizures types.  This is around the time we started weaning phenobarbital and she came off of a three month trial of the ketogenic diet.  Since that time she has averaged around seven or eight seizures a month. Normally only two of those were convulsive and required rescue meds or a call to 911. The others were normally just a few minutes of blinking which would stop with essential oils.

 We started the oil Jan 1st.  January and February were tough months because she was extremely sick for two weeks and teething both things cause an increase of seizures.  I really was hoping that with sickness and teething behind us March would give us a better picture of how the oil was working.   While its not been a perfect seizure free month I'm happy to say that in March she only had four seizures total, one being so brief I hate to even count it.  Three of them were from photo-sensitivity, something new which I'm hoping is only from the med wean. I'm trying out the eye patch in the store and outside to see if it helps. 

 I know I could view this month as failure.  One of the seizures was our first in public, and an awful experience.  One was in the middle of the grocery store and I had to run out leaving my cart behind but on the flip side one of the convulsives only required a small amount of rescue meds to stop it, a first.  And she didn't have her dreaded early morning big seizure.  That hasn't happened for an entire year. For the past year at least once a month I was jolted out of bed by the seizure monitor or feeling her body moving beside me and then in a half dazed panic I would try and get the seizure to stop.  Trust me its one of the worst ways to wake up. 

Overall, she is happier minus a few days  when the wean got really bad and she would scream and bang her head on the floor.  One day was so bad the neighbors called the cops on us because they thought we were beating her.  Yep, that really happened.

Best of all Paloma's last little drop of phenobarbital was last week.  The cannabis oil definitely helped her wean go much faster and safer.  I still think back to the three different neurologist who looked me in the eye and said pheno doesn't cause withdrawal effects.  But it absolutely did, usually two days after her last drop.  I'm so thankful to not have to give her that poison anymore.  

So I'm counting March as success.   I was hoping my nuerologist would be equally as thrilled but he only suggested adding another med, just to get a little better control.  A benzo, that does wonders in Dravet syndrome he said.  I polity declined.  I'm hoping that April will bring even better days ahead as we travel to Hawaii for a much needed vacation/visit with family. 

1 comment:

  1. I am thankful for you and your little lady. she is strong and so are you JRR