Need 5 point harness seat recommendations.

mekat

New member
My son is 12 years old. He is roughly the size of an 8 year old and 43 lbs due to growth retardation from his two genetic syndromes. He has been in a Graco Nautilus since 2011. The car seat is coming up on the 6 year expiration so need to replace but he still fits in it without much growing room left. He is getting spinal fusion this summer and that may lengthen his torso height a bit once they straighten his spine. I really need a 5 point harness seat with a taller back. I need a recommendation for a new regular seat but we will also be requesting a special needs car seat soon so I need a recommendation for both kinds. The only thing we need with the special needs one is again 5 point harness more growing room then the Nautilus and swivel bottom option to make transfer from his wheelchair to the car seat easier. The regular one will be in our second vehicle and not used as often. Also I'm not sure how big a deal it is going to be but his orthopedic surgeon said since he is so skinny that his rods they will be fusing to his back will be quite prominent. I don't know if that is going to cause problems or not with seating and positioning. He is my only child so car seats don't need to be narrow since he has the whole back seat to himself.
 

ketchupqueen

CPST and ketchup snob
Staff member
There are a couple of special needs options with a swivel base available, but generally they are boosters with positioning harnesses. Is his bone development and bone age typical enough that a positioning harness under a three point belt will be safe for him? In what ways does his condition affect his transport needs other than size?

Ideally we should help you find a local special needs tech. Can we help with that?
 

mekat

New member
Awesome! Thank you, Frontier was one of the one's I have marked on my Amazon Camel app to price watch.

His hips are healthy. He is able to weight bear enough in a crawling position so he has never had hip dysplasia. He does have a tendency to try and push his hips towards the edge of his wheelchair (Tilite ZRA with custom seating) so he can slouch but has never been able to do that in the Nautilus. He is hypotonic all over and very prone to slumping but the 5 point harness on the Nautilus seems to keep this in check without addition supports. I'm not sure how much he will be able slump after the spinal fusion since the upper 2/3's of his spine will be permanently screwed into metal rods. The orthopedic surgeon said he will lose a lot of upper torso flexibility. We have to use lateral supports in his wheelchair but honestly have never needed them in his car seat. He has no impulse control and can undo his wheelchair hip strap. We had to put a buckle guard on the wheelchair's seat belt to stop him from unstrapping himself falling and getting hurt. He has yet to figure out how to undo the Nautilus seat belt release but there is a possibility that may be a problem down the line.

We will have to go through National Seating and Mobility for his car seat because they are the only DME in the area that can handle pediatrics. When I felt them out about the topic when we were picking up his Hoyer lift they were a bit uncertain.
 

ketchupqueen

CPST and ketchup snob
Staff member
Hmm. It would be ideal to get you to someone who could evaluate him in person and ideally try different seats.

Can you tell us what area you're located in?
 

ketchupqueen

CPST and ketchup snob
Staff member
Looks like there's a team at Children's of Alabama. If you go to http://cert.safekids.org/find-tech and search Birmingham, AL with "special needs" checked at the bottom, you'll come up with their contact info. I would recommend starting there as they may be able to help you with evaluations for a seat and getting one approved. :)
 

mekat

New member
Okay, I will make an appointment with his rehab doctor at the same hospital. He can set up a clinic time with the technicians since he will be the one writing the justification letters and DME Rx's. We need to see Rehab about sleep safety issues and to get his AFO's adjusted anyway so we will just add this to the list. Thank you so much for your time.
 

Brigala

Well-known member
Insurance almost always will only pay for a single special-needs car seat. A Frontier for the less-used vehicle will probably be your best bet, and the super expensive seat for the vehicle he usually rides in. He will probably have several years of growth in a Frontier - in fact, depending on his growth patterns, a 12 year old who still fits in a Nautilus now may *never* outgrow the Frontier. We can re-evaluate his needs for the second vehicle if/when he ever gets toward the upper end of the Frontier's capacity.

Good luck with the SN team at Children's of Alabama. :) I'm sure they'll be able to help you select the right primary seat.
 

mekat

New member
I will consider myself lucky if they pay for even one car seat and I will consider it a down right miracle if we receive this car seat before the end of the year. They deny equipment at least 4 or 5 times before it is approved and then they will only approve one part and deny everything else. They do eventually approve the items and the irony is these denials and delays always cost them more in the long term then if they had just paid the initial claim. He is on a Medicaid Waiver now as well as straight Medicaid through SSI so we do have alternative funding sources but I am far too cynical after seeing the ridiculous decisions they make to have much hope. They once tried to pay for the frame of his wheelchair and deny the seating. So yes, they recognized it was medically necessary they just didn't think it was necessary for him to be able to sit in the wheelchair. Insurance logic, sometimes you have to laugh because otherwise you would cry.

The good news is that I am ordering the Frontier tonight. Amazon has the Slate version of it for $249.99 and my camel app pricing history shows the cheapest they ever offered this version was $235.19 and has risen as high as $339.99 so it is a good time to buy.
 

mekat

New member
Thanks for all the recommendations. The clicktight was big enough and was just what we needed to get through the rest of 2017. Unfortunately, the armrest came up so high that it was hard to get my son in and out of the car but it did help me zero in on the most important car seat feature, one that sits as flat to the seat as possible. When the spine is fused it can no longer bend and a 13 year old has a pretty long torso so to lift him into the seat without tilting him would cause him to hit his head on the top of the doorframe. We finally have the new seat, a Spirit APS by Drive.

View attachment 29744

It is not easy to adjust and I am going to have to reinstall because the chest clip is too low. I am also debating taking off the hip supports because they are too tight and I don't see any way to adjust them wider for his frame. I am also debating about taking out the tilt bar because the seatbelt is so tight even though it is fully extended I can't get it to lay right against the car seat back. He has always done great in mainstream seats positioning wise so I think he will be okay without the hip supports and extra tilt.

View attachment 29745
 

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