Question for child with severe OI

jubgulia · Apr 16, 2011

I have an online friend whose daughter has severe OI. She really needs some help figuring out a more comfortable carseat situation as she fractures very often and continually deals with a lot of pain.

"Car seat Question ~ She is having a lot of discomfort even in the custom padded carseat we had built for her several years ago. We borrowed a Britex to try but it caused even more pain. She prefers to be in almost a laying position which does not work too well. I have looked at the strap system that allows they to lay down and maybe if I padded it well she would be OK but I am not real comfortable with that concept. Are others struggling with comfort for older kids? And what are you using?

age 8, severe OI, 35 inches tall"

An Aurora · Apr 16, 2011

I would go for a super-reclined FF seat like the Recaros or the Graco My Ride.

BookMama · Apr 16, 2011

How much does she weigh? At that size, would your friend consider rear-facing her? It would be safer, and kiddo could recline up to 45 degrees.

I wouldn't even consider modified EZ On harness (the lying-down one) for her.

jubgulia · Apr 16, 2011

Okay, here's a little more information:

"She is 34 pounds, 35 inches tall, mostly trunk as she has very short femurs and 90-bowing in her tibias."

An Aurora · Apr 16, 2011

Yeah RF would be ideal but at 8....? Also depending on how long her legs are, it might not be good for them in the RF position.

jubgulia · Apr 16, 2011

Any special needs techs in the Portland, Oregon, area?

jubgulia · Apr 16, 2011

Mom is a wheelchair user as well, so it might be nice to have some help if they need to try some things out.

BookMama · Apr 16, 2011

An Aurora said:
Yeah RF would be ideal but at 8....? Also depending on how long her legs are, it might not be good for them in the RF position.

Just throwing it out there as a suggestion.

The MyRide definitely has about as much FF recline as you'll get in a regular seat. When I'm not on my phone I'll post pics of how reclined it installs in my vehicle.

Judi · Apr 16, 2011

jubgulia said:
Any special needs techs in the Portland, Oregon, area?

I am close. Well 1 1/2 hours, but happy to help. I can take seats up to her, for her to try.

I have:

MyRide
Regent
ProSport
Radian
Marathon
TFP

and one other I can not remember right now.

jubgulia · Apr 16, 2011

That would be great, Judi! I will PM you in a little bit.

BookMama · Apr 16, 2011

FYI, here is the MyRide in my Focus. I had to really work to get it this upright - its natural recline is even more than this.

Brianna · Apr 16, 2011

The MR's natural FF recline in my Cavalier is 40 degrees

Judi · Apr 16, 2011

Yeah, I am thinking MR with some leg support.

An Aurora · Apr 16, 2011

I think MR would be perfect

autumnlily · Apr 16, 2011

I think she should also be referred to Tammy Franks at Legacy (CPST- I/SN) and Judi can bring her slew of seats to try out.

What about the Tomato seat?

Judi · Apr 16, 2011

Already planned on it. Just going to get some info from mom.

Judi · Apr 17, 2011

Ok, got her on my fb. Messaging now.

Judi · Apr 17, 2011

Ok, she is currently in an expired Eddie Bauer seat. Mom likes it because she can RF if needed. It is narrow and easy to carry on her wheelchair (mom's). Turns out she and I know some of the same people, so she wants to come down here. We will try out seats, and they will get a fire department tour.

ketchupqueen · Apr 17, 2011

What vehicle(s) are we talking?

Judi · Apr 17, 2011

Looks like a wheelchair accessible van.

Question for child with severe OI

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