Sunday, May 27, 2012


STP increase.  Yesterday after 3 am seizures this week we decided to go up on the STP.  Now at 500mg in the morning and 500 mg in the pm.  She's pretty cranky in the morning.  But already I've noticed an appetite increase, which would correlate with the increase in Onfi.  When she started the Clobazam (now Onfi) her appetite went up.  She has switched just today from chicken and mayo (I'll bet its been at least 6 months on this spree) back to rice, which I haven't cooked in forever.  So, back to rice. 

Hoping the days get better and the mood is better and the seizures are gone and we don't have to change anything for a long time.  And the appetite slows down. 

And maybe she'd get out of her pj's and get out of the house more than 2x per week.  ugg

Thursday, May 24, 2012

STP week?
As we continue to navigate this new med, with seemingly now little progress, I have to remind myself that perhaps we are not at therapeutic dose yet.  Do we go up?  Do we stay here?  She now has congestion in the sinus's, and we took her to the pediatrician yesterday after another afternoon seizure.  She had one Wed. morning, Thursday morning and then during her nap.  She's sleeping with extreme snoring.  She doesn't feel well, just kinda dopey and not wanting to do much.  Is it the congestion/cold, the seizure meds, or what?  We did start her on amoxicillin, just to be safe.  There are some antibiotics that do not go with STP, so we made sure they scanned those into her chart.  Of course the very young Dr. hadn't heard of 2 of her meds.

So, I think we may go up on the STP.  That first couple of weeks seemed to go so well, its just so hard when the seizures come.

We are also in a caregiver whirlwind.  Started a new one on Tuesday, will start another soon, losing another this summer, its all very stressful on Margaret and I.

I was able to get away to the Tiger Mom's Retreat (for Dravet Mom's.)  35 wonderful women
who have children with Dravet Syndrome, from 22 months old to 24 years old.  We all need to get away, to love on each other, help each other, and know we are not alone.

Dina Nelson, second from the left, put the whole weekend together, her 7th year of doing it.  She uses the gifts she is given to put together a wonderful time for all of us.  We love her. 

I am blessed to have been able to go, Theresa did a wonderful job taking care of Margs.  Thank you.