Weird but wonderful

Ok, we have something weird going on here.  We have had periods of really good behavior and genuine happiness with Z. Some of those have been long and we thoroughly enjoy them.  But the last few days have been different.  She is absolutely devouring school tasks with her tutor.  Her reading fluency is better.  And she is choosing to read several books not the usual battle to get through one story. She's using a calculator to do math with ease, rather than an agonizing step by step process.  She is staying with frustrating tasks to the end without behavior.  She is asking to do things that are typically hard for her, like working with the clock. She is grasping new things like learning about plurals and opposites.  She is taking in new signs from the tutor and using more language.  She told Dave tonight that "Riley was sitting on .the bed" and he understood her!  This evening she started singing "5 Little Monkey's Jumping on the Bed", she has not done that since she was 6 or 7 years old.  Those kinds of things have disappeared for her.

She climbed up on the high bar at the gym while the coach and I were chatting and was ready to do a flip up there.  We only had to spot her.  She is swimming under water in our pool.  She's actually skating on one foot and tried to do a spiral and a lunge on her own this week.  She's mastered making her own breakfast including using the microwave.

Weird, right!  I have always spent alot of time thinking about what we can do for Z.  This time is no different.  Do I dare hope that it's a real change or will I be "blindsided" yet again.  So I ask, is this a strange phenomenon of the stars aligning just right?  Or an unusual firing of synapses happening just right?  I think of all the possible reasons like: I stopped the PANDAS meds because we had seen no change and they were making her nauseous. I increased a couple medications slightly. She has been on the folic acid med for about 6 weeks now.  Or Aunt Trish is really sitting on Z's shoulder.  I'm open to any and all thoughts.  You have to think out of the box with Z.

As always, time will tell.  For now, we are loving every minute of our precious girl.

If It's Too Good to be True then...........

It was a long shot but I felt I needed to have Z seen by the neurologist who specializes in PANDAS.  Especially since the doctor was here in Phx (no planes involved)  When I read about PANDAS it seemed to fit but I want answers and hope like every other parent.  So I asked the pediatrician and psychiatrist if I should check it out and they both said yes. It took three months to get the appointment and  I was still thinking that at the appointment the doctor would say "no, Z doesn't fit the profile for PANDAS. Imagine my surprise when the doctor said she thought I was right and Z had enough indicators to start treating her for PANDAS.  Gave me the scripts and protocol and ordered the blood draw that involved 10 vials of blood.  (Z was a trooper during that).

Just when we were feeling really hopeless about her mental health issues that have really taken over our lives, we get a little hope.  I keep thinking "what if.....".  What if this really works and behavior isn't the major focus of her life.  I can't really allow myself to think about it too much because PANDAS is really quite rare.  But like I said to the doctor, Z is just weird enough with so many unanswered issues that maybe, just maybe.

Another glimmer of hope this week too.  There was an interview on NPR about a new diagnosis for a segment of kids with bipolar, called Fear of Harm.  Kids with extreme fears that are manifested by extreme rage and aggression.  A small group of these kids have been treated with Ketamine and it's been a miracle for them.  The Juvenile Bipolar Research has done the study so I got information about it before the interview.  Does that fit Z?  Possibly!  I'd call her behavior on that recent, attempted trip to LA an extreme response, maybe to a fearful situation for her.  But at least it's more hope for kids whose lives are condemned by their extreme behavior.

Might try this trick I heard today, about a young lady who has Rhett's Syndrome.  She has a business size card that she hands out that says she has Rhett's and sometimes her brain makes her have bad behavior.  On the back it explains about Rhett's.  Maybe I can have cards for the next plane ride that I pass out ahead of time as we board the plane, "Hi, I have bipolar disorder and I'm sitting in row 15 and I probably will scream and kick the entire flight.  I'm deaf so I won't know how loud I am.  My behavior will be so bad that you will have to sit in your seat while paramedics and police help my mom get me off the plane when we land.  But sometimes I'm fine.  We're hoping for a good flight. Thanks,  Z   (I will put a very cute picture of her on the card).  I know that's my sick sense of humor but sometimes that and hope from PANDAS keeps me going. 

The Blindside or Blindsided

I started to write this over the holidays when mental health was in the news so much after Newtown.  For those of us that live with someone who is mentally ill,we know that months of wellness are rare.   I think I was "lulled" by how well Z had been doing since she came home last Feb.  She really has been stable and genuinely happy.  Then to see her struggle over the holidays is just heart breaking.  I always have felt that we needed to enjoy those times when she was well and now feeling grateful that we had so many months.  But in reality we have to enjoy the moments because sometimes that as long as it lasts, just moments!  Even though I know that the winter season is always hard, you always wish "this year will be different" then suddenly you are"blindsided".

Today is the last day of spring break and it has not been the break we expected.  Planned a trip to Disneyland, was even optimistic because the last couple weeks it seemed she was getting more stable as spring approached.  I could even handle a short plane trip, even though the last trips have not been good and we don't know why.  What was I thinking?  But armed with extra meds off we go and then "blindsided".  She was violent the entire flight.  She was so happy that morning to be going to Disneyland and staying in a hotel that I did not give the extra meds until it was too late.  Paramedics met our flight and took us by ambulance to the psych ER. Of course, as soon as Z saw the paramedics and police she was adorable, waving and smiling at everyone after I restrained her for an hour and half on the plane.  We got to the ER and I realized that I wasn't even sure where I was, strange city and strange ER.  Everyone was very nice and it came down to: do we zonk her out and I take her back home or do we go on the hotel and hope that next day she will be fine and off to Disney we go.  Opted for the second but we never got out of the hotel.  Tried going to dinner that evening  with the friends we were meeting and I ended up dragging her out of the restaurant and Disney security walked with us back to the hotel.  Blindsided! Thank goodness the hotel had room service.  We could see Disneyland from our hotel window.

The next day it was obvious that part of the problem was that Z was actually sick, congested and throwing up and probably a bladder infection.  I finally gave up and called Dave and he drove over to LA to get us.  I have a harness in my van like on school buses for special needs kids so the trip back wasn't too bad.  A few outbursts but could have been much worse.  Watched six hours of "Make It or Break It" in the van, gymnastics is her current viewing obsession.

I know you're thinking, how long does it take for this mom to learn?  But what you don't realize is that you just keep hoping and hoping that you can create or salvage some moments of normalcy and even fun with your child.  Especially for a child who everything they do is difficult, let's have some fun.  You risk getting "blindsided" just for those few moments of joy and laughter.

While stuck in the hotel room with Z, I was reading a novel that happened to be about a kids' psych unit, how fitting!  In the book a parent said something I have thought but never really wanted to say out loud. I wouldn't wish cancer on anyone but at least kids with cancer have a chance of recovering.  If you have mental illness when your a child, there is not even a chance at a cure or  recovery.  You have to grab those moments of happiness because the future is not bright.  I have said that my goal for Z is that she can stay out of an institution.  And that will be a miracle.  It's bad enough being "blindsided" as the parent, I can't imagine what it's like to be "blindsided" by your own brain at any given moment.  I've seen in Z's medical records that her prognosis is "guarded" which really means "not much hope".  But I keep trying to make her life as normal as I can.  Give her all the opportunities that you would any other child.  Maybe my "Blindside" is that I'm willing to be "blindsided" to grab a moment at Disneyland with Z and Belle.