Thursday, December 11, 2008

Killing a Fly with a Sledgehammer?

So remember last week how I took Dovi to the orthotist to discuss his SMO orthotics? And the orthotist took one look at his gait and said we need AFOs? So the orthotist talking to Dovi's physical therapist. And I spoke to Dovi's physical therapist. And now I talk to you guys.

His PT is really not convinced that Dovi needs the AFOs. She compared it to killing a fly with a sledgehammer. As is AFOs are hard core, major orthotics. They are what kids with severe CP who cannot walk wear. She said that "they are really extreme, Sara. I'm not convinced he needs them".

I asked her what she would do if it was her child. That's my rule of thumb when talking to any medical professional when we have a decision to make: "What would you do if it was your child?". So she was really undecided. She said that she wishes that the SMOs had worked but she understands why the orthotist said they wont and his reasoning for wanting the AFOs. But she repeated that they are just...sooo....extreme.

We discussed how FD is progressive, blah blah blah, and as Dovi grows and more demands are put on his itty bitty little feet, his orthopedic issues will increase. That's why he needs orthotics now, and didn't need them, say 3 years ago. In the past year he's grown (Thank You, G-d!) about 2 1/2 inches and gained almost 20 pounds. But his feet have not grown at all. They are a size 13 if I'm generous. More like a 12, 12 1/2. Yes, he's 11. Kids with FD have teeny tiny itty bitty hands and feet. It's that crappy circulation issue again.

So these teeny tiny itty bitty size 13 feet are carrying a 72 pound over 4 foot tall body. And these size 13 feet are not normal, strong size 13 feet. They are size 13 feet with poor circulation (his feet look diabetic to me) and weak muscles. And weak little ankles. And osteoporosis. So his feet need help to literally hold up his body. And it will only get worse.

EDITED: I just realized I haven't summed up Dovi's orthopedic issues: he pronates both feet insanely-he literally walks on the inner sides of his feet. He rotates out his left foot when walking, the PT thinks to give himself more stability. He's unsteady with a wobbly gait. And he keeps his foot in a funky position-see how it's kind of pointed forward? That's his general foot position. Oh and notice his hugely oversized left big toe-you can see it from the side-it's from a displaced fracture that did not heal correctly. Lovely. EDITED AGAIN: to correct. Benjie reminded me: it wasn't a displaced fracture, it was a commutated fracture of the big toe. As in his bone broke into several pieces. And he didn't feel it. It happened like 3 years ago and his toe still looks like that. Frankly, we've got bigger fish to fry.

And Nadine (PT) went on to say that Dovi will use whatever "crutch" you offer him. He's lazy (takes after me). So if we give him AFOs, he'll use them. If we give him SMOs, he'll use them. Are we giving him too much, too soon?

But the orthotist said that there really is nothing to do with the SMOs. We will consistently have issues with blistering and sores, because he has orthopedic needs that are not being addressed by the SMOs. THe AFOs would address those issues, and then some.

It's the and then some that is the issue. It's basically AFOs or nothing. The SMOs are out.

So Nadine is calling Dovi's orthopedist in New York, and I am going to poll the FD parents that I know. Do other FD kids wear AFOs? Have they helped?

Or are we killing a fly with a sledgehammer?


Shosh said...

i cant offer my opinion on the orthotics but i can say....
"He's lazy, takes after me?"
Funniest thing I heard all day, from the least laziest person ever.

p.s. nice seeing u last night. :) But why did I not see you at Jewel in the creamer aisle?

DESJ and Company said...

going in about 15 minutes. all aflutter. have 3 coupons. WOOHOOOOOOOOOOO

BTW I AM lazy. After I finish what has to get done, you'll find me on. the. couch. nowhere. else.

Rachelz said...

Sara it's the "after I finish what has to get done part"

I wish I could only say I realx after everything is done!

Shosh said...

exactly what rachel said. You'll find me on the couch all the time. OR actually in my computer chair. Reading your blog, while the dishes sit unwashed and the laundry sits unfolded. That, my dears, is lazy.

Orah said...

I would say, chances are, none of us are really lazy, JUST TIRED!!! The couch is my best friend.

Chaviva said...

Here's my trick. I fold laundry while sitting on the couch. This is how I delude myself to believe I am relaxing while I'm actually accomplishing something.

Ms. Stephanie said...

I use the "if it were your child" question to all doctors, dentists, teachers, etc - you get MUCH better answers that way.
My favorite was when my 18 month olds still had their pacifiers and my pedi said "After 15 months, it's really hard to get rid of them."
And I said, "When did you child get rid of his?"
"21 months."

(For the record, we were 36 months, but whatever. It's a good question to ask.)

fdmom said...

Hi - ask katie (PT at keshet) what she thinks. She's pretty good. Also, our PT would probably talk to yours if desired.

Michelle has been wearing stuff for years. We stopped the AFO's, mainly because they didn't do anything for her & often caused more problems than it was worth (bruising, etc). She's been wearing an insert for the past year. We just had her fitted for a new pair yesterday. Hope it comes in before the end of the month. I don't htink it's called SMO since I think you typically see the tops of them near or above the ankle. Hers help the foot position so she is able to walk better (that is relative you know) but w/her feet in a better position.

We're now noticing some bunions forming on her foot. Our PT is recommending that the orthotist add to the ones we just ordered that helps with the toes/bunions. We'll see.

Call me if you want to chat.