Monday, April 11, 2011

Unfamiliar Territory: Letters and Lessons and PANDAS

Oh my. :)

When my oldest daughter was little I was so impressed with my little darling's ability and interest in reading and writing. We encouraged every attempt at a list or sentence or story. We thought she was amazing. Then she got to kindergarten. Her teacher looked at me with her eyebrow up and firmly told me that it was clear that our daughter had not been taught proper letter formation and that if we didn't start practicing with her EVERY NIGHT her poor writing would HOLD HER BACK. Then she proceeded to teach me how to write all letters starting with my pencil at the top line. (So the letter A would be formed Top down-Top down-Crossbar. And only this way. Ever.)

I went home shaking in my shoes. I practiced with her the first time right when we got home and went to bed that night with nightmares about her penmanship HOLDING HER BACK...

A few days later I talked with one of my girlfriends whose kids were going to Montessori... I explained all about the dire consequences of improper letter formation... My friend said, "I don't think so." What???? But Mrs H. said.....

My friend said that at Montessori they teach cursive writing before they teach printing because they believe that it's the lifting and placing the pencil on the page that is difficult for kids. "You can't tell me that everyone who ever went to Montessori has failed at life. And don't a lot of people just type? And what about people from other countries? Some languages don't even have an A"

Well yeah... duh!

I progressed eons that day. Let's just say I chose what I wanted to panic about after that--nobody could make me by just saying so!

(You will be happy to know that I can't actually tell you how she writes an A anymore and yet she does seem to be holding her own!)

This happens sometimes. Experts disagree.

What one group of people see as essential another see as superfluous or even dangerous...

This is not new news of course. People change schools and doctors and hairdresses and plumbers all the time.

I have friends who have taken their kids for heart and other surgeries to other cities, because things were available there that weren't here. And I know of kids with various disabilities who have received all manner of treatments or therapies in different cities or even countries essentially because the experts in various places face the same problems in different ways--there is more than one way to draw an A.

While I know many folks who have travelled for the treatments their kids needed, up til now we have never considered it ourselves. The only time we have even talked about an out of town specialist was for an eye issue Jenn has. But she responded to treatment. And recently a specialist has actually moved here (wasn't that nice of them?)

But suddenly things have gotten more controversial...

Jenn has had a change of behavior and an elevated ASO titer and her behavior is improving with antibiotic treatment... some medical practitioners would call that PANDAS... others would not.

Noted experts in one city (mine) don't believe in PANDAS... while experts in other cities do. Some big-name hospitals have PANDAS protocols... ours does not. Both groups are lettered, respected, learned people and respected institutions (I am not being sarcastic, they are.)

And they don't agree.

And all of them can give you a thousand well thought-out reasons why...

Obviously, this is much bigger than how to make an A... there are side effects and consequences on both sides of the equation. And a kid in the middle.

Then add in that no matter what either group of experts HAS looked at, you can bet that neither group has looked at 17 year olds with Down syndrome...

So, it's on us.

So far, I think the antibiotics are fine... she seems to be responding--even acquaintances are noticing improvement--and it's not like the treatments for things like OCD, behavioral disorders, etc will not still be out there once she is off the antibiotics... And strep is going around... Not sure how we feel about transfusions... Can't imagine talk therapy making a bit of difference...

Sure as heck can't leave her where she is.

We have a thoughtful medical team, we read and discuss and discuss and read. We listen... whether we agree or disagree... we challenge (because then they tell us more)... we pray. We take a step.

Rinse. Repeat.

This is my present process anyway... if you have one you like better please share!


Anonymous said...

So sorry I haven't been by lately! Sounds incredibly stressful.... I am so happy to see that you fought for whatever they want to call it.... geesh. So many Dr's see behavior and they assume psychiatric but I am here to tell you that there is alot that they don't know (I bet you know that already so that in this case you would know more than many of them do :)
hugs and best wishes for you and your daughter.

Terri said...

Thank you Starr. It sounds like you have had a straining season as well...

It seems like Jenn is improving very slowly. She is more aware. Still not talking or reading, but able to do more, and clearly aware of the people around her. We are grateful for steps in the right direction (but I wish it would hurry up and go away.)

Forward we go.

Samantha said...

I understand how stressful this must be for you. My mother had to deal with the same thing when she was taking care of me. I have PANDAS as well. There are really good treatments out there. Plasmapheresis is one of them. From what my mother states I was an entirely different person. I went from day and night. Everything was a 180. I wanted to make sure you got this so I tried to post this more then once. I just wanted to help and let you know your not alone.

Terri said...

Thank you Samantha, sorry it took me so long to see this. It is wonderful to hear that you are doing well. My daughter is still improving very slowly. Better than she was when I wrote this... still a long way from pre-illness. I really appreciate your encouragement! We keep on!