neck fusion and ERF for "older" SN kids

CaliNanny

New member
Okay so I have an interesting question for techs or anyone else with input:

A friend of mine and her husband are adopting an "older" child fron Eastern Europe. She has Down Syndrome, and just turned 7. She has probably never even seen a car, much less riden in one.

Here's the question: With what you know about neck fusion in children and possible AAI/AAOI (atlanto axial/oxciptial instability), Would you as a parent get a doctor to approve and imported seat to keep your kid RF as long as possible.

If it offers any other insight: The child is not her size for her age,even on the DS scale(probably close to 40" or smaller).non-verbal and not walking and also was recently diagnosed with celiac disease, so not on target for weight.

Thank you all for any imput.
 
ADS

safeinthecar

Moderator - CPS Technician
If she fit rfing, I would put her rfing. She may or may not have been cleared for AAI/AAOI at this point, but she sounds like she needs additional support for sitting. Rfing is the easiest way to offer this support.

It would also be a lot easier to sit beside and comfort a scared child who is facing you.

What do the parents think about their options? Are they looking at car seat options yet, or is that off their radar for the moment?
 

CaliNanny

New member
Thank you for your input. I agree that RF could be their best bet for support and also to help with overstimulation from all the activity of other cars and such. My friend has had some time to look into different seats, but is unsure what she should be looking for because she dosnt know how tall the child is. She has expressed to me how worried she is of the little girls head slumping in the seat and cutting off her airway if she goes ff, which is why i recomended RF for a while.
 

flipper68

Senior Community Member
Shopping for a seat is kinda hard when you don't know the size of the child. . .

I haven't seen it in person, but the Roosevelt has a head support: http://www.eztether.com/about_ez_up.html I think this option would be faster/easier than getting approval to import a seat AND they will probably get more years of use. (Medical care and proper nutrition could spark a HUGE growth spurt.)

:) Your friends are very special folks adopt a child with so many challenges. They have lots of hurtles to overcome.
 

ShumNum

Senior Community Member
If the fusion hasn't been done I think it will be critical to find out about how much extension/flexion of the neck the child can safely have. If her spine isn't stable, it may be necessary to get a cervical collar to keep the child in position during travel. So, long story short, I would almost suggest they get an inexpensive seat like the Scenera (depending on her weight!) and use that RFing until they can get some more info about her needs. Of course this is assuming she is waaay underweight at like 30-35lbs
 

thepeach80

Senior Community Member
This is why I want to take the special needs class. There's bascially no one here outside of the hospital that can help parents w/ this. I put in a Traveller Plus 2 checks ago, but could only talk about what I've gathered from the board etc. I would've felt more comfortable had I been certified in it. Best wishes to your friends.
 

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