Need help deciding on a seat 2.5 year old with Down syndrome

zinkter

New member
My little girl is 2.5 years old with Down syndrome, hypotonia, CAVC repair, profound bilateral deafness, and vasomotor instability. She is 21 pounds and 28 inches tall. We have a britax marathon and Graco all in one. We were advised to FF her due to her deafness and her vaso motor instability. Our issue is now that she is FF we are realizing she is desatting into the 80's when she falls asleep and maintains the mid- 80's until we hit a bump and she readjusts. Then as she falls back asleep and relaxes she desats. again. I can see that her head slumps to the side when she is asleep and have no idea how to fix this. We are looking into seats but can't settle on one. We drive a Ford E-350 Passenger van with a bench seat and a 2013 dodge dart.
 
ADS

jess71903

Ambassador
Welcome to car-seat.org!

I am an OT, so know a little about your little ones' dx, but I'm not that familiar with vasomotor instability and why that would warrant forward facing her. Is it so you can see her in case she....what?

With what I know about DS, I would say rear-face as long as humanly possible. Her low tone and issues you mentioned with her desatting due to head slump make me think that. I know many people with DS also have atlanto-axial instability. Has she been cleared of that? Rear-facing protects the spinal cord, so all of those things make me believe she is more susceptible to injury than a typical child her age in an accident. Could you rear-face with a headrest mirror?
 

zinkter

New member
Forward facing so we can see her in the middle of an "incident" also because she is deaf and being rear-facing she has no way to communicate her needs and see our reply. We have a mirror but she doesn't understand she can see us, and cries when she signs, milk, and potty because she doesnt realize we are replying. She has not been cleared of atlanto-axial instability because they can't get a clear image on x-ray because she is so tiny.

Welcome to car-seat.org!

I am an OT, so know a little about your little ones' dx, but I'm not that familiar with vasomotor instability and why that would warrant forward facing her. Is it so you can see her in case she....what?

With what I know about DS, I would say rear-face as long as humanly possible. Her low tone and issues you mentioned with her desatting due to head slump make me think that. I know many people with DS also have atlanto-axial instability. Has she been cleared of that? Rear-facing protects the spinal cord, so all of those things make me believe she is more susceptible to injury than a typical child her age in an accident. Could you rear-face with a headrest mirror?
 

1mommy

New member
Not a tech or an OT or specialist of any time so take my advice with a grain of salt- have you tried out the Graco MyRide? It often installs very reclined FF which may help with the head slump/breathing problems?
 

Kel

Well-known member
I was also going to suggest to MR. My 4 Yr old DS always liked the recline FFING because he slept do well in it
It's like a big lazy boy chair, lol.
It should last her a long time to which is nice.
 

ketchupqueen

CPST and ketchup snob
Staff member
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.

Is only one of you usually in the car? When possible I might rear face with someone in the back even if she has to forward face sometimes.
 

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