FF with OI?

jubgulia

Active member
Just read another thread that mentioned achondroplasia and it got me thinking. If your child had that or OI (both tend to have larger head and lax joints, etc) or another connective tissue disorder, at what age/size would you be comfortable with them FF or boostered? Would there be a specific type of seat or features that you would want? I guess what I want to discuss is what would you do differently?

BTW: DS3 is doing amazingly well and is smallish, but on the charts! I would probably call him mild/moderate at this point rather than severe and tiny as was predicted. He's not going FF anytime soon of course. This just changes the game plan, in a good way!
 
ADS

safeinthecar

Moderator - CPS Technician
I would rf in car seats for as long as possible while I saved up for a vehicle with rfing vehicle seats and continue to rf whenever possible. Obviously, he'd have to ff as the driver when he is older.
 

brookity

New member
My DD has Type I Mild to moderate OI. Nearly a year ago she had a series of breaks that left her unable to walk until very recently. She was RF until she broke her femur at 3.5 years old. Even using a Hippo seat, she would not fit RF in our SUV. After her SPICA came off, we tried to RF her again in the RN. Unlike most Snowflakes, she is very tall and very leggy and had severe leg pain even on very short rides. So she is FF in a RN with the Safestop. It was very difficult for me to make this decision. Everything I know says that she should be RF but I had to weigh the pros and cons. If there was any way that I could afford to import a seat with more leg room, I would. Right now, though, it is just not feasible. :twocents: (My outlook might change after I take the special needs course at the end of April.)
 

Minnesota

CPST Instructor
If I personally had a child with OI, I would do everything in my power and budget to import a 55-lb RF seat. I'd want them to remain RF for as long as any seat in the world allows.

As a tech, I would advise a parent of a child with OI to seek out the highest RF limits (on US-legal seats), with a goal of RF to a minimum age of 4 years, longer if possible.
 

jubgulia

Active member
My DD has Type I Mild to moderate OI. Nearly a year ago she had a series of breaks that left her unable to walk until very recently. She was RF until she broke her femur at 3.5 years old. Even using a Hippo seat, she would not fit RF in our SUV. After her SPICA came off, we tried to RF her again in the RN. Unlike most Snowflakes, she is very tall and very leggy and had severe leg pain even on very short rides. So she is FF in a RN with the Safestop. It was very difficult for me to make this decision. Everything I know says that she should be RF but I had to weigh the pros and cons. If there was any way that I could afford to import a seat with more leg room, I would. Right now, though, it is just not feasible. :twocents: (My outlook might change after I take the special needs course at the end of April.)

I am so happy you are here! DS3 is big for a snowflake so far as well (he's type IV by DNA). I would be very interested to know what is said about it in the special needs course. Hope your DD is doing well now!

If I personally had a child with OI, I would do everything in my power and budget to import a 55-lb RF seat. I'd want them to remain RF for as long as any seat in the world allows.

As a tech, I would advise a parent of a child with OI to seek out the highest RF limits (on US-legal seats), with a goal of RF to a minimum age of 4 years, longer if possible.

I so wish these were readily available here. I've thought about saving and importing one and using it for DS2 now until DS3 could use it, but then I think, "What if it broke/had a problem/etc?" There'd be no way to get it fixed. Anyway, (when I win the lottery) I would love to be able to gift these to all snowflakes!
 

brookity

New member
I am so happy you are here! DS3 is big for a snowflake so far as well (he's type IV by DNA). I would be very interested to know what is said about it in the special needs course. Hope your DD is doing well now!

I am so glad that your DS is doing better than anyone expected. I am really just a lurker here but have been following your story. DD walked on her own for the first time in a year at the end of November. :D My heart jumps every time she has a slight misstep or trips over her own feet but we are so excited that she can get around on her own again.

The carseat situation has been such a struggle. Even though others may have made a different choice, this is the best I can do for her right now. If I could get her to gain even 5 lbs. I would put her in a booster in a heart beat. Part of my decision lies in the fact that she went for 3 years without breaking anything. Then she was diagnosed with Graves Disease and then the breaks started happening. Graves Disease inhibits the absorption of calcium and the doctors think that now that we have the thyroid under control, the breaks will diminish somewhat. Her bone scans show that her skeleton is stronger than it was even six months ago so FF because of her pain doesn't seem so horrible even though I know she would be safer RF. She is also 4.5 yo and knows that she is different and wants to FF because it is normal. Heck, most of her peers are in nbb and she doesn't understand why she can't do the same. It is a delicate balancing act between safety and some kind of normalcy.

I will let you know what I learn in my special needs course. :thumbsup:
 

Jennifer mom to my 7

Well-known member
You asked for opinions. I don't have a child with oi. But, if I did, I think, I would rear face as long as possible with US seats (um the radian I think will rear face most, if not all children to at least 3.5, probably 4-6 years old). Then, I might just go to a booster if the child is 4 and at least 30 pounds. Probably the turbo if that small. If they got to a bigger size and age rear facing, like 4 and 40, maybe the parkway sgl.

Yes, still wondering about the head excursion/neck loads harnessed vs boostered. Makes sense to me.
 

jubgulia

Active member
I would rf in car seats for as long as possible while I saved up for a vehicle with rfing vehicle seats and continue to rf whenever possible. Obviously, he'd have to ff as the driver when he is older.

Are there any vehicles with RF seats other than the Chrysler/Dodge minivan? And not a 1980's station wagon... :p
 

Patriot201

Car-Seat.org Ambassador
She is also 4.5 yo and knows that she is different and wants to FF because it is normal. Heck, most of her peers are in nbb and she doesn't understand why she can't do the same. It is a delicate balancing act between safety and some kind of normalcy.

((((((((((hugs)))))))))) While I am sure every parent struggles with this balance, it has to be especially difficult for parents of children with special needs such as your DD's and the OP's DS. (((((((((((hugs)))))))))
 

jourdysmom

CPST Instructor
Are there any vehicles with RF seats other than the Chrysler/Dodge minivan? And not a 1980's station wagon... :p

I believe that there are Ford station wagons that are newer with a RF 3rd seat...but they are lap belt only with no head rests... :thumbsdown:
 

flipper68

Senior Community Member
I would rf in car seats for as long as possible while I saved up for a vehicle with rfing vehicle seats and continue to rf whenever possible. Obviously, he'd have to ff as the driver when he is older.

Except that (AFAIK), there are NO child restraints that can be used with a rear facing vehicle seat. :(
 

Pixels

New member
Yes, still wondering about the head excursion/neck loads harnessed vs boostered. Makes sense to me.

The other aspect to consider is distribution of force. In a 5-point harness, the loads are distributed over a larger area of the body, meaning no one point is stressed as much.

I don't know the "right" answer, either.
 

jubgulia

Active member
The other aspect to consider is distribution of force. In a 5-point harness, the loads are distributed over a larger area of the body, meaning no one point is stressed as much.

I don't know the "right" answer, either.

How do things like the Radian's Safestop and Britax's Safecell compare to booster? Or do we have that information? If stress on the neck is not much more, then it would seem that would be better.

I was liking the idea of the Cybex that had the shield thing at first (if it ever comes here), but then I was thinking maybe it would be tight on the thighs and not work with bowing or leg splints or things like that.
 

Pixels

New member
We don't have information about neck loading. It's a theory that kids in harness have higher neck loads than kids in a booster, but it's just a theory. No evidence one way or the other. We also don't have numbers about how much the Radian's SafeStop or Britax's Safecell change things. SKJP has been pretty forthcoming with their crash test data, so maybe if you contacted them and explained that you have a SN kiddo and want to know how much the SafeStop reduces neck loads, they will give it to you.
 

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