New backpacks..........

Salt painting.....

I'll make this entry as brief as possible, as I have a good deal of prep to do for a meeting with Safi's new teacher tomorrow.

After a good week for Safi on the Zoloft we increased her dosage from 12.5 mg to a whole pill, 25 mg.  Monday can only be described as the day that rainbow unicorns danced on clouds made of cotton candy and marshmallow fluff.  It was freaking unbelievable.  In the morning Nixi put her through the paces, they were playing a game with their shoes...shoes were cars, tiny animal figurines were racing in them.  When it came time to clean up so that we could get ready to meet friends at the water fountains absolutely NOTHING could be right for Nixi.  She needed to put certain shoes away, Safi would say to her "Let's do teamwork, you can do one and I can do one."...that wasn't good enough..."Ok, you can put them both away and I'll put away these ones."....nope, now that was a problem..."If we do teamwork we can each do some, which ones do you want to do?"...back and forth, this and that, nothing was going to make it good...."UGH!  Ok, you just put away the ones you want and I'll do the rest."  Then she cheered Nixi on, telling her what a great job she was doing.  RAINBOW UNICORN!!  We met up with her friend Sophia and Emily's kids at the fountains.  Safi ran around, hand in hand, with Sophia laughing and having a wonderful time.  When things got dicey for a moment and it looked like she was going to crumble she put her head down, composed herself, and went her own way with a huge smile and continued to play until she could find a way to reengage with her friends.  COTTON CANDY, MARSHMALLOW FLUFF CLOUDS!  It was just unbelievable.  Breathtaking.  Not only tremendous increase in coping skills and adaptability, but massive leaps in the quality of her speech.

By Monday night I started noticing that she was pretty amped up.  She was still happy, coping well, but a little too intense, too rough, and way to fast.  She looked very ADHD, which is not the norm for Safi.  She woke up the next day, full pill, and again...too loud, too fast, disinhibited, extremely poor impulse control.  By Tuesday night, some behavioral issues....taking things too far in the name of fun, "poking the bear" with sister, typically developing kid stuff but on steroids.  She also had trouble sleeping and wet her bed during tablet time during the afternoon.  She woke early on Wednesday but gave her a full pill just to say we gave it a fair chance, but it was clear that 25 mg is just too high a dose for her.  She was still off the hook, being a smart aleck, and just generally being a butt...but still extremely social and anxiety reduced.  Poor kid also had another "accident", as Zoloft can cause urinary incontinence in children.  I called the psychiatrist and told him what was up and that I wanted to bring her back down to the 12.5mg.  He agreed.  On Thursday I had told the girls we would go to the water fountains.  Safi said to me,verbatim, "Mom, can I stay hom?  I'm sick of the fountains and I don't feel like going today."!!!!   As I  was texting to cancel the fountains with her friend Sophia's dad I heard Nixi yell.  Before I could open the patio door to see what had happened, Safi gave herself a time out for being not so nice to sister!  Temple Grandin, arguably one of the most famous "Autistics", found in her research of the use of SSRI's in folks living with Autism that because they appear to be extremely sensitive to medications they often need on 1/2 to 1/4 of what would be considered "therapeutic dose" for neurotypicals.  She also states that at the first sign of early morning wakening or insomnia to pull back to a lower dose.  Certainly appeared to bear true for Safi.  So, the medication has a half life of 24 hr, meaning in 24 hr after taking a 25mg dose you will have 12.5mg in your system.  So, Safi wont truly be back down to 12.5mg for about a week from the last 25mg pill....which lands squarely on the first day of school.  We have noticed her slowly coming down in energy over the weekend.  Impulse control much better, sleeping fine, no more "accidents", etc.  With that we have also noticed some of her exceptionally complete sentences becoming slightly fragmented again.  We have a psychiatry appointment tomorrow and I'm going to ask if after a month or so we are still seeing that decrease in the really great speech quality improvement if we can perhaps increase to 18.75mg (3/4 of a pill).  But we'll give it the full 6-8 weeks to see first.  

While Monday at the fountains was magical for Safi, not so much for the Nix.  She was ok until more kids started arriving, at which point she straddled my lap and shut down.  Periods of crying or screaming if I moved "wrong" or didn't have what item she felt would make the world right again.  From that day forward we have spent the week primarily at home or running errands and she seems to be able to tolerate that just fine and has had a pretty good week....I would even dare say the girls and I had a few stellar days by anyone's account!  She's still Nixi, and she still has schizophrenia, but her level of functioning and happiness is just better when she's at home or in the community with purpose and no social pressure.  I can understand now why many of the parents in my online support group homeschool or do severely modified school schedules, like 2 hr of "regular class", and hour in "special day class", then home.  More on this topic next week.  While it is a relief to see her have a somewhat better week, it is a bone jarring reality that she starts school August 12th and she may not be able to handle it.  I attempted to take her to a walk in clinic on Saturday to have a rash looked at while Safi was out doing things with dad.  Her anxiety level immediately increased and with that, her symptoms.  She wasn't sure if I was her mom, calling for me but then unable to answer if I was her mom when I asked.  She physically had a hard time making her body get out of the car.  We checked in and within a few minutes I chose to abort the mission.  It was obvious that she was not going to let the guy near her and I wasn't going to put her through that for a rash so we bid them a-do and headed home.  Her psychiatrist and I have been emailing back and forth all week to get this med change hammered out as its relatively complex and I have no desire to blow it and he's still out of the state.  I won't get into detail on titrating and such but we went with the addition of Cogentin and increase of Risperdal.  All week she's been getting the Cogentin with no Risperdal increase.  She appears to be tolerating the Cogentin wonderfully.  I have noted no side effects.  Last night was her first Risperdal increase by .125mg.  So she is now on a total of .50mg Risperdal and the original Cogentin dose of .5mg is now is split into two doses, am and pm, of .25mg.  After taking the Risperdal increase and the split dose of Cogentin and the 1mg of melatonin she has lawyas taken, she fell asleep during the second TV show before bed.  That has never happened so it was clearly med related and I'm thinking of cutting her melatonin back to .5mg.  A couple of hours after her morning dose of Cogentin she was yawning and by noon she was crabby and looking tired.  At this point we just wait and see.  She had two little crying jags as of this writing (2:45pm) and I'm inclined to think that this is more her body adjusting to the med changes as a whole, making her a little tired, etc. than to jump straight to akathisia...as that was much more extreme and immediately apparent.  But I'd be lying if I said I wasn't holding my breath.  Well, now its evening and despite a decent day, we were not able to escape slamming face first into the medication brick wall.  I think its just a matter of her body adjusting to the changes, I'm not heading for the phone just yet but it was a big meltdown.  Again, leaving her a weeping ball in my lap begging for her mom, confused, and not ok.  She started experiencing some paranoia while doing a craft, not wanting anyone to look at it, etc.  She also has this thing over the past few days where she tells Safi numerous times a day not to say the words "very own", regardless of whether she's saying them or not.  So, seems like the voices or the monsters have a hand in that annoyance.  Either way, it irritates to the point of becoming irrationally angered.  Safi, left confused and bewildered.  Meltdown ended, Safi was able to tell her how beautiful her craft was and life moves on.

Making back to school slide shows, meeting with Safi's new teacher tomorrow, and needing to schedule a meeting with Nixi's teacher.  Its back to school, baby.  Excited, anxious, scared, nauseous...me, that is.  The girls, at least Safi for sure, are PUMPED!!!  And that is WONDERFUL!  Be thinking of the Safi girl on Thursday morning when she puts on her special first day duds and gets ready to OWN the first grade!  

Sarah

This is what Schizophrenia and Autism looks like...salt painting!