Sunday, December 14, 2014

Last night Paloma had her first dose of high CBD oil.  Part of me wants to be very vocal about it because I believe wholeheartedly that it can and will help Paloma but the wiser side of me says to lay low and be quiet about it for the time being.  The law here in Utah makes the use of high CBD for intractable epilepsy legal but there is still a lot of grey area and controversy on how you are supposed to legally obtain the oil.  Many of my friends and family have asked recently if we have started the treatment and if it's "working"   It really depends on what the definition of working is.  I'm hopeful that it will decrease her seizures.  Typically she is having two complex partial seizures a week.  These are normally just blinking and she is out of it, unable to talk or move.  These normally last five to ten minutes.  Then she normally has one or two big seizures a month.  These are usually full body seizures that require rectal Valium or calling 911 to have them stopped. These are scary and put her life at risk.  I would take any improvement. I'm also hoping the oil helps her sleep better at night.  She normally wakes between 1 and 2 am and doesn't go back to sleep until 4 or so.  I am tired, beyond tired. At some point I would like to start decreasing her keppra dosage and hopefully be pharma free. 

This is all new territory for parents like me.  There is no doctor to guide me. I have an experienced mentor guiding me on dosing and how to increase.  We may have to try several different kinds until we find the right fit.  Last night after her first dose she was extremely fussy and cried all night long. Maybe she had too much?  Maybe she is too sensitive to this particular strain?  All we can do is wait and watch.  Thankfully unlike pharmas she can't overdose so there is no need to have that to worry about.  I will give updates as we go along. 

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