OI / Brittle Bone Disease

jubgulia

Active member
I was looking up old posts about OI and I'm sure the recommendations have changed since then, so I thought I would start a new thread rather than dragging out an old one.

DS3 has Type IV mild/moderate OI. He's 2.5 months old right now and riding in a Maxi Cosi Cabrio Fix. We love that seat for him, but I know it's not going to last forever. Some people with OI end up being very small, but DS3 is growing very well and his newest doctor says he is looking great and she expects him to be close to full height! :D

I am starting to research (because I am a compulsive researcher) next step carseats and things and wanted to get some expert opinions on the matter. According to his doctor, his problem areas are most likely going to be his femurs (both are quite bowed and one has fractured already) and spinal compression issues.

I'm sure rearfacing is the way to go, but I'm wonding how long as that will affect what seat is going to be best for him. Would RF to booster be better than the progression of RF to FF to booster? What types of seats are going to be most compatible with femur bowing (sharpest angle at the top of the femur), future casts/splints, easy in/out, and least likely to cause/aggravate spinal compression?

We drive an 8-passenger 2006 Toyota Sienna.
 
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carseatcoach

Carseat Crankypants
Yes, I think RF to booster would be ideal, and (this isn't something you'll see me write very often at all!) I think you should consider importing a 55# RFing Swedish seat.
 

Dillipop

Well-known member
I agree with the importing of a Swedish seat. Especially since there are some models that are made to set away from the back seat, offering considerably more leg room than our seats.
 

ketchupqueen

CPST and ketchup snob
Staff member
It might be that he outgrows a Swedish seat (by leg room if nothing else, even though they have more than American seats) before ready for a booster.

In that case I'd consider a Kiddy or other European shield seat, possibly (less risk of spinal compression than a FF harness...) Though that's just a guess, maybe it's something for you to research?
 

safeinthecar

Moderator - CPS Technician
If it were me, keeping in mind crash dynamics and such, and with the thought in mind that SN car seat issues are very much a gray area when you get to the point of having NO best practice solution.....I'd start with the Swedish seat and start saving $$$ for the possibility of buying a Caravan with the swiveling captain's chairs.

You don't know what the future is going to hold at this point. By the time he outgrows a rfing Swedish seat, he may be fine to go into a booster, or he may need wheel chair transport. Take one step at a time and satisfy your need to plan ahead by making sure to set up funds to cover any option you may need.
 

Calleiah

Active member
I agree, I think a Swedish seat is going to be your best bet. I was taking a look over at the Carseat.se ERF gallery to see what seats appeared to have the most RF leg room. Heres the link so you can take a look since you'll know better than I what angles his legs will be most comfortable and safe.
http://www.carseat.se/gallery/
You might talk to Adventuredad as well, since he's most familiar with the available seats, and can also help get you set up with what you'll need.
 

jubgulia

Active member
Thanks everybody! I really like the BeSafe Izi Combi one becaue it has a rebound bar, support leg, and doesn't have to be tethered, but it only goes to 40 lbs and the price is outrageous. Also, I'm guessing I can't use the Two Way because it has to rest on the dashboard or back of the front seat. The Multi Tech looks like it doesn't have the leg space that some of the other have. So... Mobi?

Also, what do people do for travel, because you sure ain't fitting one of those on an airplane? Vest? Gate check it? :eek:
 

Carrie_R

Ambassador - CPS Technician
If you can afford it financially, I might buy a Radian as a backup/travel seat (if your family travels often.) Of course the idea of a $200-300 seat as backup makes me want to vomit a bit... Maybe if you have two cars, he could use it in the secondary vehicle for now and a Swedish in the primary?
 

jubgulia

Active member
Yow! It's all so expensive! What if we just did a RNXT (or whatever the to 45 lbs one is and maybe without the chest clip?) until he outgrows it or gets uncomfortable and see from there? Maybe by then we will have something better available in the US? And now I'll just start bugging Clek or someone to make a seat that RF to 60 lbs w/ their retractable rigid LATCH and has a foot prop to use over a certain weight or something like that. :whistle::D
 

amyd

New member
Yow! It's all so expensive! What if we just did a RNXT (or whatever the to 45 lbs one is and maybe without the chest clip?) until he outgrows it or gets uncomfortable and see from there? Maybe by then we will have something better available in the US? And now I'll just start bugging Clek or someone to make a seat that RF to 60 lbs w/ their retractable rigid LATCH and has a foot prop to use over a certain weight or something like that. :whistle::D

I think a 45lb RF Radian is a good idea right now. As Kimberly said, you really have no idea what the future will hold and a 45lb seat will give you lots of time to save, explore what insurance may cover, for new seats to be released in the US, to bug Clek;), etc. Hope you find something that works well for your son.
 

ketchupqueen

CPST and ketchup snob
Staff member
The one thing is that I think the Radian has less leg room than some of the Swedish seats. But it would definitely work for NOW and the straps are close enough together that they'd probably be fine without a chest clip (though the Complete Air's are even more close together, and the straps on that one don't tend to be as far below the shoulders-- they can get really far with the Radians sometimes... Hmmm.)
 

jubgulia

Active member
Does the Complete Air have more leg room than the RN? Which will go taller? I'm assuming the Complete Air doesn't have a RF tether... Sorry, I don't know much about the Complete Air.
 

ketchupqueen

CPST and ketchup snob
Staff member
The CA has about the same leg room, possibly a smidgen more if reclined to the full 45 degrees.

It does not RF tether.

It goes taller because it allows use to the top of the headrest, instead of 1" from top of the shell.

Of course, the Radian might be more compatible with using with straps slightly above the shoulders. Hmmm. Lots to think about.

ETA: for that matter, something with an infinite harness that puts the straps right AT the shoulders might be even better. Doesn't the Symphony have that, and a pretty tall shell, and pretty good leg room? Aren't they soon coming out with a 40 lb. RF version of that?
 

Jennifer mom to my 7

Well-known member
Okay, I was so going to suggest a radian from the start, because of the low sides, low profile, high weight for rear facing. UNTIL.... You see that she has an 8 passenger sienna.

Now, for the lightweight, so for a year or so, the radian will be perfect, but what about later, when the weight of kiddo gets too heavy?

Who has figured out fabulous tricks to keep the radian upright in the sienna second row?

Or, can you remove one middle seat, or not, and put the radian in the third row? I hear that makes a better install.
 

amyd

New member
The CA has about the same leg room, possibly a smidgen more if reclined to the full 45 degrees.

It does not RF tether.

It goes taller because it allows use to the top of the headrest, instead of 1" from top of the shell.

Of course, the Radian might be more compatible with using with straps slightly above the shoulders. Hmmm. Lots to think about.

ETA: for that matter, something with an infinite harness that puts the straps right AT the shoulders might be even better. Doesn't the Symphony have that, and a pretty tall shell, and pretty good leg room? Aren't they soon coming out with a 40 lb. RF version of that?

Yes, the Symphony has the infinite adjust harness like the EFTA. I didn't even think of it because the Evenflo seats have ridiculously low RF weight lots in Canada but I guess they are better in the US. It seems like it has a decent amount of leg room. I think the Evenflo Momentum is a 40 lb RFing seat. Not sure if there's. 40lb Symphony coming or not. The Radian may have lots of leg room depending on how reclined it is in any given vehicle. You're right, though, KQ, the straps can tend to get quite a bit below the shoulders with the Radian. There's an especially big gap between the third and fourth slots.
 
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CTPDMom

Ambassador - CPS Technician
I'd start with an EFTA, or at least try one out. They have great leg room and I agree that the infinite slide harness would be good.

Also maybe wait and see what the Momentum 65 looks like, as that has a 40lbs rf limit. It might have a nice deep seating area like the EFTA.
 

jubgulia

Active member
Well, one of my sisters has a RNXT and the other has a EFTA. So maybe I can try them out in the Sienna and see what looks good. I also just thought, would the RN be better because it has the Safe Stop in case I ever had to FF him later? I'm also really liking the RF tethered or rebound bar seats because I cringe when I think of him in a seat that could rebound completely. :eek: I know normally it's kind of a non-issue, but with him it just makes me a little sick to think about. Is this just me being an overprotective mommy or what?
 

TerisBoys

Well-known member
Well, one of my sisters has a RNXT and the other has a EFTA. So maybe I can try them out in the Sienna and see what looks good. I also just thought, would the RN be better because it has the Safe Stop in case I ever had to FF him later? I'm also really liking the RF tethered or rebound bar seats because I cringe when I think of him in a seat that could rebound completely. :eek: I know normally it's kind of a non-issue, but with him it just makes me a little sick to think about. Is this just me being an overprotective mommy or what?

In your specific case, no, you're not being an overprotective mommy. I shuddered right along with you when you mentioned cocooning.

Also, you should be able to recline the seat-back in the van a little to give him more legroom when he grows. Check the owner's manual of the Sienna to see if there's a limit.
 

ketchupqueen

CPST and ketchup snob
Staff member
I believe the Sienna has specific settings that MUST be used when installing child restraints. NOt supposed to deviate from them. :(
 

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