This is the 200th blog post.  Wow.  When I think of the twists and turns our story has taken since that first post in January, 2010, I am overwhelmed.

This blog was started as a Christmas gift to Mike and my family, none of whom live terribly close, so that they could watch the girls grow up on a weekly basis...be a part of their lives, whether they be hours or states away.  Through Facebook and some other search engines, this blog has slowly been reaching more and more people.  Some are friends, or friends of friends, some are extended family, others I'm sure are here for the pure spectacle factor.  No matter what the reason,  if it sheds a light on neuro diversity and breaks some stigmas along the way...I am content.  Feel free to slow down and rubberneck.....I probably wont flip you the bird, at least not if I'm in a good mood.

For those of you who were here for the first entry, I cannot begin to imagine how you have felt over the past few years.  I imagine somewhat helpless, maybe a little confused, perhaps even sad.  But I also hope that you've found tremendous joy in watching the girls grow up, change, struggle...and overcome.  I thank you from the bottom of my heart for reading every week(and printing every blog entry Grandpa Seifert), even when you know it may be painful or a bummer.  But we are nowhere near the end of this story.  I love a great twist ending and I believe the girls may just pull one out in the end.....we shall see!

With that, the 200th post.....


This week we ended our third summer of the grass roots summer school at the park.  The girls were extremely excited for the graduation and party...so much so that by the time it actually arrived, crash and burn.  They had woken up early and could do nothing but talk about the day's events...for nearly three hours.  Reading books, singing, story time all went well...then the pirate party activities.  I decided to tell the girls about the activities the night before but did not show them any pictures because, frankly, I had none.  These were made up games.  Never underestimate the power of visual supports...EVER.  We brought out a huge sand bin for a treasure dig, pirate coins for a coin toss, and good old duct tape for walking the plank.  It was more than Safi could bear.  I put her weighted vest on prior to the transition from story time to the activities...still no good.  She became extremely overwhelmed, crying and frantically looking for treasure then changing her mind on what treasure she wanted.  It was horrible, one of the moments where she is so internally off that nothing externally is going to be right...and it wasn't.  The other kids, used to this by now, enjoyed themselves and had a blast.  By the time graduation was over, cupcakes eaten, and swimsuits for the fountains on Safi started to come out of it....only to pass the meltdown torch to Nixi.  We got to the fountains and poor kid just lost it.  Luckily, we were able to get through it and do our goodbye song for the last time this summer with no tears.  And if you ask the girls if they enjoyed the last day they will tell you it was the best.  That's good enough for me.

Safi had her appointment with the psychiatrist that I have been seeing.  It went surprisingly well.  Nixi held it together for the most part, only losing at the end when he thought it would be a good idea to do a magic trick with a little ball he had given each of the girls.  Bad move.  Nonetheless, it was a good appointment.  He has put her on a low dose of Zoloft for the anxiety and she has had minimal side effects.  Tummy ache, generally feeling a little crappy here and there, but nothing that doesn't pass pretty quickly and I'm increasing her dose to the end goal very slowly.  While it really needs a few weeks to get a good baseline going, I am noticing that she is coping with consequences better and I even overheard her apologize to her sister for freaking her out during play and asking very nicely if she would come back to play.  Saying "I won't do it again.":  This is HUGE.  Usually, she would just cry and whine that Nixi wasn't doing what she wanted her to do.  I'm extremely excited for her.  I think this may just be what she needs to help with some of her social difficulties.  Perfect timing with 1st grade around the corner.

Nixi.  Oh, Nixi.  I don't have the emotional energy to give a play by play but she continues to get worse.  Her illness, at this point, bears more weight with her than reality.  She took a plastic knife from our take out dinner and hid it under her pillow.  Denied it when casually asked about it then stated, "Do you know why I have that...to get the bad guys."  So, not only is she hiding her symptoms, but she also feels that she needs to protect herself because we can't.  She knows we don't see, hear, or "know" the things that she does.  She is totally alone.  She also has completely lost insight.  If I can see that her symptoms are bothering her I can usually ask her if her brain is bothering her and she'll say "yes."  For the first time, I asked her if her brain was bothering her and she got angry, growling "NO!".  The auditory hallucinations still tell her to "destroy" me, and for the past two night she isn't sure that I'm her mom.  She stands there, screaming and crying "I want my mama", and when I say "I'm right here.  Am I your mama?", she screams back in total despair "I DON'T KNOW!".  Her appointment up at Davis was cancelled due to her psychiatrist testifying in a trial that has been extended.  Worst timing ever.  Friday we had a phone appointment.

His first option, which he offered gently, was to hospitalize her on an acute psychiatric floor.  He already knew the answer, but asked if we would consider even a 24 hour stay.  No, we wont.  Not now.  She's too little.  Not that there aren't tremendous benefits from psychiatric hospitalization.  The big one for psychosis is that they can try different meds at higher doses than would be feasible on an outpatient basis, look for side effects and counter them quickly if the arise, and switch meds that aren't working quickly.  That's really wonderful, and in many cases means much quicker stabilization for the patient.  But a 24 hr admit, to me, is like a gateway drug.  What can they really do in 24 hr other than tell you that they need more time to observe, try different meds, etc.  Dr. Soulier would never try to trick us or doing anything nefarious, I know he's also looking to have increased documentation for her future.  The more documentation from varying sources, the greater the treatment opportunities, Social Security opportunities, etc.  But he has children Safi and Nixi's age so he "gets" it, and didn't push any further.  Instead, he said, "I think we've been really worried about what these meds will do to her body, and we should be, but I think the time has come that where we need to put her mind before her body."  He's right.

So, he has given us the following options to mull over and will be calling on Monday for our decision;

1) Add Cogentin to combat the akathisia she experiences with Risperdal at a higher dose.  Think Benadryl for an allergic reaction.  His only concern with that is that the Cogentin could worsen her mood symptoms.

2) Add a small dose of Prozac to help with her mood symptoms and negative thinking...but will do nothing to touch the psychosis.

3) Change meds to Zyprexa or Seroquel, though Seroquel is chemically very similar to Risperdal so it wouldn't be his first choice.

He ended by saying that we may need to start thinking about combinations of meds.  It was a sobering conversation.  In previous posts I have talked about prognosis being much better when a child responds well to their first anitpsychotic.  It looks like Nixi isn't going to be one of the lucky ones.  She's going to be one of the one's that likely needs multiple medications, or at least will be changing meds more than we might have hoped as she continues to grow.  So disappointing.  Zyprexa scares me due to the serious weight gain often seen in people, kids especially, taking it.  That may sound like a vanity issue but for me its a physical, visual reminder that I'm losing my child to this illness.  I can get over that, but I won't lie and say that it would be easy.  It also carries the same risks of diabetes, side effects, etc, of Risperdal but at a slightly higher rate due to increase in hunger/weight gain.  It also has a higher incidence of cardiovascular side effects, particularly in children.  Its just a gnarly drug.

I think we've decided to go with the Cogentin/Risperdal combo first, as Dr. Soulier said we would know within a matter of days if it was going to work or not.  From there, I suppose Zyprexa.  What's scary is that he said he wouldn't consider some of the other anitpsychotics because they're less potent.  So, of course, my mind goes to what if the combo doesn't work, and the Zyprexa is a bomb, then we're left with something like Clozaril and that scares the shit out of me.  First, because it would be confirmation that Nixi has medication resistant Schizophrenia.  Very common in Childhood Onset Schizophrenia.  Second, because it is a drug that can cause agranulocytosis, a condition that involves a dangerous decrease in white blood cells that can cause death.  It carries four other "black box" warnings that I wont go into because we're not there yet.  I'm just saying, that's where this all takes my brain.

So, that's where we're at.  The girls had a nice weekend, swimming in the pool with dad, having a tea party, and hanging around the house Saturday (right now Nixi does significantly better at home than the outside world), and hitting the water fountains and McDonald's with me on Sunday.  Safi was bummed about not getting to go to a hotel, and Nixi was afraid this meant Dr. Soulier wasn't going to help her.  I assured both that we would go to a hotel in the future and that on Monday Dr. Soulier would call and we start to get this all figured out.  That was good enough for them!

Sarah

While the girls are SO much more than their diagnoses...there's a dad on Facebook that always posts pictures of his son just being a kid with the caption "This is what Autism looks like" and I love that idea.  Paradoxically breaks the stigma by using it...brilliant!  In that spirit.......