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  1. #1
    CPS Technician lukensophie's Avatar
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    WWYD: RFing older child with Down Syndrome

    Ok, I have a WWYD for you. This is something I've been contemplating a lot lately. Our youngest child is 5.5 and has Down Syndrome. A bit of background, we brought him home from Bulgaria two years ago at the age of 3.5. At that time, he weighed 16 pounds and was about 30 inches long. He had horrible muscle tone and couldn't even sit unassisted. We brought him home in a Chicco KeyFit. Currently, he weighs about 30 pounds and is approximately 38 inches tall. He's sitting, crawling, pulling to stand, and has much improved tone.

    He rides RFing in a Graco Size4Me and could probably fit that way for a very long time. Due to size and low tone, I've kept him RFing. However, he is 5.5. Thoughts on keeping him RFing?

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  3. #2
    CPS Fanatic 1mommy's Avatar
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    Found this in another special need post about a child with fine syndrome. The post is by KetchupQueen


    One issue you should be aware of when deciding whether to rear or forward face is that around one in three children with DS has atlantoaxial instability. This can't usually be diagnosed until 4 to 5 years old (by imaging) and if present highly increases the risks of forward facing, and of death in a crash forward facing. It's a tough choice, but that is an important reason we recommend children with DS should rear face several more years, generally, so I wanted to make sure you know the prevalence and risks when deciding.
    Mommy to Jake, a.k.a Booger Breath #1- born March 2012 and Sawyer, my little "Soy Bean"- born May 2014

    Playing the Car Seat Shuffle between a True Fit Premier, Guide 65, Graco MySize, Graco Milestone and a Maxi Cosi Pria

  4. #3
    CPS Technician lukensophie's Avatar
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    Re: WWYD: RFing older child with Down Syndrome

    Thanks. I'm aware of the dangers and incidence rate of atlanto-axial instability (it's more like 10-15% http://www.ndsccenter.org/wp-content...nstability.pdf ) and the importance of rear-facing.

    I guess I'm just pontificating on the fact that it's quite possible that this kiddo could rear-face until 8 years old or so. It's just something that I realized recently.

  5. #4
    CPS Fanatic aept's Avatar
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    Are you looking forward to FF for certain reasons or is it not really a big deal to you and your family to keep him RF for quite a while longer? I totally understand wanting to FF for my own convenience despite knowing the benefits of staying RF.
    In this case I think it makes sense to keep him RF for now, but maybe consider FF him whenever you think his "bone age" is equal to that of a four-year-old. Maybe by 6/6.5? Just guessing based upon your description of where he started and how far he's come along developmentally and how much he has grown in height/weight since he has been home with you. (I'm a pediatric PT so my area of expertise would be in development, not bone age.)
    Ann, mom to 3 big brothers and a baby girl:
    DS1 - Aug 2006, 80 lb, 56", incognitos
    DS2 - May 2008, 77 lb, 51.5", Vivo or NBB
    DS3 - June 2011, 46 lb, 43", FF in FR85 or booster training
    DD - May 2015, 19 lb, 29", ) Snugride 30

  6. #5
    CPS Technician lukensophie's Avatar
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    Re: WWYD: RFing older child with Down Syndrome

    No, I'm not really in a hurry to move him forward facing. His seat is second row, driver's side, and his school has a separate carpool area for kids with special needs so that the parents can load/unload the children ourselves.The other kids just use the opposite side of the car to climb in and out (although the 6 year old occasionally climbs in under DS4's seat). I guess I was just thinking out loud and contemplating the reality that he could rear-face a few more years (maybe I should have put this as a "chat" discussion instead of in an "advice" forum).

    As for bone age, it's so hard to tell when he may be an appropriate bone age to forward face. Severe, long-term malnutrition does such weird things.

  7. #6
    CPST and ketchup snob ketchupqueen's Avatar
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    Re: WWYD: RFing older child with Down Syndrome

    Low tone is also common with DS and that is also something rf is much better for.

    With cases of malnutrition in infancy definitely bone age can be affected and is something to consider in deciding what is safe.
    CPST and Mom to Emma, 15, Bridget, 13, Maggie, 11, Katie Sue, 6, Jimmy, born May 2019,
    and Becky, waiting for us as part of our eternal family.
    Our '02 Odyssey, car seats, and seatbelts saved our lives. Now riding in a '13 Odyssey!

  8. #7
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    Re: WWYD: RFing older child with Down Syndrome

    I'd keep him RF for now and reevaluate when it stops working for you or becomes inconvenient. As for bone age, you could have that tested via x-ray if you want to take that into account in making your decision.
    Cutie #1 (12 years) 5-stepping
    Cutie #2 (10 years) riding in a Cosco Topside or Safety 1st Incognito

    Cutie #3 (7 years) riding in a Chicco KidFit
    Cutie #4 (5 years) riding in a Frontier
    Cutie #5 (2 years) riding in a Nuna Rava

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