STIRIPENTOL INCREASE

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

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.

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.

2011 New Year, New life to come

On New Years day we got to go visit Baby Eli.  He is Ryan and Ruthie's new son, and Margs loved going to their wedding.

He is a beautiful baby and just so sweet.

On Feb. 15, Margs will be 21.  Her last year of school.  Wondering what the future holds with this girl who can never be alone.  Who has a great service dog that just doen't get seizure work.  The investigation begins on what she can do doing the day.  She will live with us, for as long as we are able and can find great help, like the help God has blessed us with so far.  They maintain our sanity.  So many nights are interruped sleep, I'm not sure how Steve is able to work all day long. 

Last Friday, she had early out from school.  She and Mel were up taking a nap, and I heard the bark.  It was Emma.  I raced up the stairs, cause that's Emma's seizure bark.  Sure enough, big ol seizure, and Emma barked twice.  Monty just lies on the bed and wonders.  So, excitement, treats and love.  Emma gets it, cause she is so treat motivated.  Monty isn't, so he's not so excited.  I'm still hoping it will come. 

Pastor Mike's sermon last night centered on HOPE.  When we lose our hope, we lose everything.

Have a great 2011.

Miss Marino, Molly and Baby Parker visit

Margs was so happy to hold baby Parker.  He is such a beautiful baby, and oh that hair!  He fussed and talked and liked to be jiggled.  Then, when I laid him down he fell right to sleep.  When it was time for them to go, Kim picked him up for a photo shoot, and to let Margs hold him.  He stayed asleep.  There is nothing quite like a sleeping baby.




Miss Marino (Kim) was Margs one-on-one for a while in elementary school, then in the transition to middle school, and then at high school.  She also did respite care for us.  Molly is Kim's daughter.  Molly spent lots of time with Margs, and is actually 7 months younger.  Molly now lives in Phoenix, and has a little girl of her own, Kim.  Margs was so happy to see them all, and all I could see from her was love to these women.  The love of Christ.  No matter what decisions they had made in life, and Molly has made some decisions and done some things that many of us would never condone.  But Margs knows nothing of that, she just sees Molly.  Like Christ sees us.  It was a huge lesson for me.

Special Olympics 2010

A big day at Simpson College in Indianola, Iowa.  A beautiful day, nearly 80 out and breezy.  Margs and Monty went in the bus with her classmates, her teacher and aid, and her PEOPLE PE peers.  Margs helper at this time is Chelsie, she is wearing the red shirt.

Margs was so excited to see Katie, one of our semi retied helpers. who is an aid to an elementary student.









So, I'm not having luck getting the text where I want it, so just read the pics. 

Seizure this week, 4 am on Friday, Monty jumped off the bed and out of the room.  All I can think is he was going to get Emma.  Frustration.  After her seizure a week ago Friday, Paige's dog, Emmie, came in and did the full body sniff.  There is a scent, this confirmed it.  Our dogs just don't get it.