Re: Car Seat

February 23, 2004

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.

January 11, 2005

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.

January 11, 2005

Chances are the bar is too wide. Unless it's a very narrow seat, most

seats accommodate a bar easily. The bar length should be the same as his

shoulders. Either heel to heel or bolt to bolt, whichever works for your

child. The difference is negligible. However much longer or shorter is

uncomfortable for the baby and could cause problems. Take the brace off

and hold it up to his shoulders. If it just fits, it's right. If it's

much longer it's too wide and you need a shorter bar. A 2 mo old should be

in either a 6 " or 8 " bar if it's a fixed length or it should be matched to

his shoulders if it's an adjustable one.

If it's sized correctly for him and still doesn't fit in the seat you may

want to consider moving to a convertible rear facing seat a little

early. The Britax seats are my personal fave, they're very comfortable for

a baby with CF. I just love them in general (so much we have 5!) but

they're the best quality out there, large and comfy and designed with the

Canadian and European safety standards which are more stringent than the

ones here in the US. They're just better!

Kori

(no, I don't work for Britax!)

At 07:20 PM 1/11/2005, you wrote:

>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.

>

January 11, 2005

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.

January 12, 2005

My daughters feet didn't fit in the infant carseat after she started using the

bar as well. And it was adjusted appropriately. But she didn't seem to mind it

sitting sideways so we didn't worry about it. However, she had a relapse and

will need to wear her bar for 22/7 for at least 3 mos and maybe longer depending

on how well her feet are fixed and what Dr. P thinks about things in March.

Therefore when we were purchasing a new carseat for her, we took the bar with us

(she's in casts right now) and found just a few that would fit well with extra

room to grow. All of them are convertibles meaning you can put infants/toddlers

rear facing and then turn them around when they reach the appropriate age and

weight. Kori is correct that britax seats do test out well and are roomy but

man are they pricey. We discovered that the new Evenflo line of carseats (Titan

5, Triumph and Triumph DLX) are also VERY roomy and less costly, and they tested

well with consumer reports. We opted for the Triumph DLX which comes with extra

padding. It also is very easy to adjust the belts so whether she's in her casts

and needs a bit extra or is wearing an extra fluffy coat, we can make her

comfortable while maintaining safety. And no, I don't work for Evenflo! LOL

All that to say: If I were you, I'd take my child to BRU and 'try on' several

carseats to find the one that fits her best and then be sure it fits your car

(they do let you take them outside to test) before purchasing.

HTH,

Chris

car seat

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.

January 12, 2005