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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...

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.

>

>

>

>

>

>

>

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I have the Triumph fancy-pants one for my son. We got it about 2 yrs

ago when it just came out, and we really love it. It has held up

very well, too. I can throw the cover in the washing machine & it

comes out fine. Alot of the car seats we've had just fall apart

after you wash them, even though the tags say you can do that. The

big reason we went with the Triumph is it's shorter than the others.

This is a real concern for us, because when it's rear facing it

doesn't stick out as far, and DH is 6'4 so he needs the seat back as

far as it goes. We're just about to get a new car seat for Ava, the

little porker is getting too big for her infant carrier seat. I've

been shopping around, and the Triumph is on sale at Burlington Coat

Factory for $99, I think until the end of the month. The Britax are

nice, like Kori says, but very expensive, like said. I was

wondering if Kori knows a place to get them cheaper? I am a car seat

maniac--been in a few accidents (thankfully before I had children) &

want my kids to be as safe as possible! So I've been known to spend

a pretty penny on a car seat!

, mommy of:

Guinevere, on, Ava 8/4/04 right CF DBB 23/7

> 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.

>

>

>

>

>

>

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Share on other sites

I have the Triumph fancy-pants one for my son. We got it about 2 yrs

ago when it just came out, and we really love it. It has held up

very well, too. I can throw the cover in the washing machine & it

comes out fine. Alot of the car seats we've had just fall apart

after you wash them, even though the tags say you can do that. The

big reason we went with the Triumph is it's shorter than the others.

This is a real concern for us, because when it's rear facing it

doesn't stick out as far, and DH is 6'4 so he needs the seat back as

far as it goes. We're just about to get a new car seat for Ava, the

little porker is getting too big for her infant carrier seat. I've

been shopping around, and the Triumph is on sale at Burlington Coat

Factory for $99, I think until the end of the month. The Britax are

nice, like Kori says, but very expensive, like said. I was

wondering if Kori knows a place to get them cheaper? I am a car seat

maniac--been in a few accidents (thankfully before I had children) &

want my kids to be as safe as possible! So I've been known to spend

a pretty penny on a car seat!

, mommy of:

Guinevere, on, Ava 8/4/04 right CF DBB 23/7

> 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.

>

>

>

>

>

>

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