STP week 4

Hard to convey how this med is going.  She was doing well, sleeping better, seeming to be better behaved, and then I added a morning dose.  On a Friday morning.  Then by Sunday we had a wreck of sorts on our hands, very tired, very uncooperative, just really not herself, so on Monday I lowered the Onfi by 5 mg. 

She is sleeping much sounder.  That is a plus, still getting one of us up at one point, but in between she is out.  Her naps have been really all over the map.  On Thursday, the drive to Chicago, she didn't nap at all, which was really worrisome.  Stayed up too late in the hotel. She slept all night, like a rock.  We got her to Children's Outpatient on time for her lab work and to see Dr. Laux.  She is thrilled that she seems more cooperative, she could do more neuro testing (touch my finger, follow my finger, walked and ran) and had not had any seizures since week one of starting the STP.

Dr. Laux and Margaret, and the new bear she got from the lab. :)










 I'm the one who lives on eggshells, wondering what we are doing in this whole mess of med changes.  She did manage a nap on Friday at the hotel after the appt.  Whew.  Had a pretty good night at our wonderful friend's house.  Caytie painted all of her nails, what a saint.  Printed pics off the computer to color.  Loved on all the dogs.  (4 total, even Ohio, the big guy)

CAYTIE painting her nails:

BJ, hamming it up.

She was up at 3:30 am on Sat. morning, pulling at her dressing from the lab work, yelling about all sorts of stuff.   Then at 6 in the morning, blammo, a big old GTC, searching for a magnet in the dark, disappointment abounding.  She hadn't eaten a good dinner, wasn't on a good schedule, all the cards were in the right order for a seizure.  The bubble is burst.  The car ride home from Chicago was horrible, lots of yelling, her eyes looking drugged, wanting to go back to the hotel, back to the dr., back to the lab for another "shot."

Dr. Laux said we would be doing a balancing act the next number of months, trying to get the right balance of STP and Onfi, and if we can, then maybe we can wean the Celontin.  Trading off tiredness for seizure control, until we get the right mix of everything.  If she's sleeping better, maybe getting rid of the nap.  I'm not sure what to do with her all day, the nap gives us all a break.  And she's 22.  Dr. Laux was so excited, because they really haven't had many Dravet adults on the STP, and we are showing that its helping with seizure control.  Is she sleeping better because she's having fewer seizures?  The STP skyrockets the efficacy of the Onfi, so that's why we lower it.  We'll get med levels on Monday, I'm supposed to email her so we can figure out the next step.  The sleepiness should decrease.  Do we increase, or stay on the low dose?  She said it would be great to stay on the low dose, something helpful to know for other Dravet adults.  I think of her as a kid, but she's not, she acts like a kid, has to be cared for like a kid, but she's 22.



Stiripentol/Diacomit

Hello.  We have now started Stirpentol/Diacomit (STP).  A med developed in France specifically for Dravet Syndrome patients.  It was quite a process to get it.  This med is not FDA approved.  Because of the Trust, and our insurance company's denial of coverage, we ordered directly from Biocodex.  The shipment was delayed in Memphis by Customs.  Once more information was given, forms filled out, we received the med and started Margaret on a low dose on March 30.  So far, so good.  She has had 2 morning seizures since we added the STP.

For the curious, she is currently on Depakote ER(Valproic Acid) Celontin (methosuximide) and Onfi (Clobazam) in addition to the STP.  I have been consulting with a good friend whose daughter has been on STP for a number of years, and she also suggested we even out her med doses.  For years we have been loading her up at night and giving smaller doses in the morning.  This morning I have changed all that, and now the only difference between am and pm meds is the STP.  Keeping my fingers crossed.

This past year has been a challenge.  There are so few programs available that are social based for adults like Margaret.  A friend and I have helped start at program in West Des Moines called the YAC.  Young Adults Clug.  We have started slowly, with the help of the West Des Moines Human Services Department, and they are offering a place to gather and have an activity from 10-12 on Thursdays.  Its a start.  Margaret is loving it and calling the director, Sue, her teacher. 

On Wednesday mornings she goes to the Jester Equestrian Center and has her one hour on the horse, which she loves.  She loves the volunteers and the director, Deanne.

On Thursday nights she goes to the Access Bible Study at Lutheran Church of Hope.  She really likes the teacher there, Cindy.  Once a month they play basketball and she really enjoys that.

So basically every week she has 3 things to do that are scheduled.  I have been so blessed thus far to have wonderful young women to come in and play with her, take her to Taco John's or their homes, and keep her entertained.

The dogs are doing well.  Emma barks at every seizure, Monty will jump back on the bed and bark once he sees Emma is getting treated.  He's a slow one, just a mellow, very loyal, loving dog.  Not much for seizure work, though.

I plan to keep this up for those interested in the addition of STP to the med mix.