Nixi's 4th birthday............

Thanks Aunt Becky for the cool hats!

Lowe's....

Here we are, the last days of April.  This is the last post I'll do related specifically to Autism but I have decided to continue writing the blog for the month of May, as it will be Mental Health Awareness Month.

So, first an update on Nixi.  Called the psychiatrist on Monday and if we were not able to make it up to see him by the following Monday he wanted us to consider taking her to the hospital for inpatient psychiatric care.  Nix and I hoofed it up there on Thursday for a Friday appointment.  By the time we left she was completely gone.  Totally euphoric, bizarre, delusional, and hallucinating.  Once we got to Sacramento and checked into our hotel she continued to get more and more bizarre and delusional.  It became apparent that she was hallucinating, likely a running commentary on what she was doing with the addition of negative feedback leading to her being concerned that Dr. Soulier (the psychiatrist) would be mad at her for putting things in the fridge, brushing her teeth, etc.  She was up until 4am, waking on Friday morning on 4 hours of sleep and major psychosis.  I found a local park for us to visit.  By the time we got there she was becoming more and more irritable, wanting to go home, etc.  At the park she was just bizarre, doing this very loud baby gibberish and running from thing to thing frantically, all the while laughing wildly.  She went under the play structure where another little boy was only to come out a moment later crying, upset, and paranoid that he was doing something to her but I was able to distract her fairly quickly.  As I stood back, taking in the whole scene and context of the day I was startled at just how bizarre and different she looked.  Mike and I don't always notice it because we live in a house of "non typical", and I rarely take moments to step outside of the situation to look at things through other's eyes.  Friday it was impossible not to do so.  Nixi was at a place in her illness that I had never been with her and on some level she was a stranger to me.  It was scary.  She has also begun obsessively scratching herself when she's nervous and Friday it peaked.  She scratched her knees raw, dug her fingers into her palms, and left welts all over her wrists and shoulders.  She was unable to nap due to motor agitation, constantly moving and doing this strange breathing pattern.

By the time we got to the doctor's office and we went back and I tried to show him the damage she had done with the scratching she went, for lack of a better descriptor, feral.  She completely lost it then crawled into my lap and  twiddled my hair until the end of the appointment when she found interest in an infant toy he had on the floor. We conference called Mike and collaboratively decided to skip the mood stabilizer and go straight to an anti psychotic.  Dr. Soulier explained that if her psychosis were a byproduct of her moods and the mood component was her primary issue he'd be in favor of trying a stabilizer.  However, he didn't see that as her primary issue and wanted to give her something that would target the real problem.  We agreed.  We told him that we were afraid that we would "lose" her because we've never really known another Nixi.  With that in mind we all decided that our goal would be to take the edge off of her symptoms and get them into the background but not to make them go away completely.  To do that she would need to be on high doses of medication and it is likely that her symptoms would still not completely disappear.  If that were our goal, we could be endlessly adjusting and adding more and more meds.  This is not what any of us want.  So he put her on the smallest dose of Risperidone possible to see therapeutic benefit (.25mg) and we will call him in two weeks to reassess.  In a month she'll have a blood draw to check blood sugar levels, liver functioning, etc.  We are at comfortable with our decision.  Nixi had her first dose Saturday night and we saw notable improvement...she was less scattered and disorganized, less irritable and moody.  Enough of a change to say we are optimistic.  This evening at 6pm we saw the gains fall away over a span of 15 minutes so we gave her the second dose an hour earlier than we had last night.  We'll see tomorrow if that hold her over for the duration of tomorrow.  The psychiatrist suggested adding a second dose of .25mg after the two week mark to the morning but saw my hesitation so just said we'd talk about it then.  We may have to do that to keep her from teetering in the edge and I'm ok with that.  It is a tremendous relief that she is responding to the medication and seeing the benefits slip away at 6PM just served as confirmation that it IS working.  A wonderful thing.  I had the fear that she wouldn't respond to the first anti psychotic tried.  When this occurs, prognosis is even worse.  Bittersweet as all things in our life seem to be, it is also a confirmation of the diagnosis we left with on Friday.  Nixi is no longer diagnosed with Psychotic Disorder, NOS.  She has been formally diagnosed with Childhood Onset Schizophrenia.  Dr. Soulier, again, encouraged us to get her into the National Institute of Health Early Onset Schizophrenia studies.  She is not eligible until 5 or 6 years of age and it is an inpatient experience lasting up to 9 weeks.  As he said, it is the gold standard of care for a population that has no gold standard due to its rarity.  We have 2 years to decide, and he was good with that.

Poor Safi woke up Saturday morning with a temp of 102, peaking today at 103.7.  She literally fought me today when I needed to give her some Ibuprofen, it was horrible.  All you want to do is make her feel better but due to the taste of the medicine she would rather be ill than take it.  She went to bed peacefully tonight and I'll keep her home from school tomorrow.  Her field trip to Lowe's was awesome!  She had a blast with her friends and kept hugging me and saying "mommy".  We got to build a Kung Fu Panda toy together and it was absolutely sublime.

Today was a good day, relatively peaceful (except for the Ibuprofen incident)...more so than its been in a long while.  I'm trying not to get too excited but its hard not to.  Just think of the possibilities if we can keep Nixi stable....for her AND for Safi.  Yes, things will change and Nixi will need adjustments here and there.  She'll do great until she doesn't and we'll have to take that as it comes.  But tonight I am just really optimistic.  I haven't been able to say that in a long time.  So, I'm going to live in that moment and relish the win.  I'll do my love letters to my daughters and their diagnoses in May....though I don't know that Schizophrenia is going to get much fluff.  Tonight I'm going to enjoy the small things.  I'll save the deep soul searching for another night.

Sarah

Trip to Davis....new hope and new beginnings.