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Re: Car Seat

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My Daughter Maggie also has Leigh's and also has no head control we kept her in her regular car seat until she was 20 lbs then we turned it around she is in a Britex Turnabout and it goes up to 80lbs we then bought a toddler head pillow by Gold Bug and took some of the stuffing out so her head wouldn't wobble to much. This has worked great for us. At one point we had a Columbian carseat made for special needs but never worked for us because it was made for kids who are hypertonic and not hypotonic.

Hope this will help

Valina (Maggies mom 27mos. Leigh's)Tina & Girls wrote:

<snip>My 17 month old son (Diagnosed with Leigh's disease)is finally nearing the 20 pound mark. He has had his (toddler size, convertible) car seat rear facing until now and does not really have any leg room left. <snip>

My son had no head control also. Our therapists insisted he not face forward until we found a seat that would support his head. They contacted our local medical supply store and they got insurance to pay for a car seat that has inserts that support his head and in his case his trunk also. It came with different sizes to accomodate him as he grew bigger and rear thethers that would allow him to be supported up to 150 pounds. He fit very comfortable in this seat, and although not easy could be taken completly apart and washed. We still have the seat and I would gladly send it to you if you think it would work. Wish you the best.

Tina

Mom to Austin (Forever 4)

10 (too busy for words)

Eleanna 3 (nuff saud :) )

Please contact mito-owner with any problems or questions.

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  • 10 months later...

YES! We have a 4 month old and we go through the same thing with his infant car

seat! They look so uncomfortable tilting like that don't they? Someone needs

to make car seats for our CF kids!!! Lori

-------------- Original message --------------

Has anyone had trouble with the bar fitting into the car seat? My

two month old just started wearing the shoes with the bar and now

his feet do not fit in the car seat. They have to be tilted out on

one side or the other.

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I remember that Owen's bar was tilted a bit too in the infant seat.

I just made sure that when I put him in the seat, I lifted the bar

and stuck his bum into the back of the seat first (sort of like

a 'jackknive position if you can picture it)...then I'd let the bar

down and it would rest wherever it lay.

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/24

>

> Has anyone had trouble with the bar fitting into the car seat? My

> two month old just started wearing the shoes with the bar and now

> his feet do not fit in the car seat. They have to be tilted out on

> one side or the other.

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Kori, did you hear about the recall on some Britax car seats?

& Grace

>

>

> >Has anyone had trouble with the bar fitting into the car seat? My

> >two month old just started wearing the shoes with the bar and now

> >his feet do not fit in the car seat. They have to be tilted out on

> >one side or the other.

> >

> >

> >

> >

> >

> >

> >

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Kori, did you hear about the recall on some Britax car seats?

& Grace

>

>

> >Has anyone had trouble with the bar fitting into the car seat? My

> >two month old just started wearing the shoes with the bar and now

> >his feet do not fit in the car seat. They have to be tilted out on

> >one side or the other.

> >

> >

> >

> >

> >

> >

> >

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