4YO with down's syndrome

mrosehughes

New member
A friend of ours has a 4YO little girl with down's syndrome. She is just about to outgrow the harness on their carseat (which is a short one -- evenflo perhaps?) and she is wondering what to get next. Fortunately it sounds like she is willing to keep harnessing her rather than transitioning her to a booster.

My question is basically what to recommend her to get for her DD, given that she has down's syndrome and will likely need to be harnessed longer than a neurotypical child. She is not overly big, so I was thinking if I could convince them to get her a frontier she'd likely be able to ride in that for a long time. Would their insurance likely be willing to pay for a special needs seat? Cost is going to be an issue and a frontier might be out of their price range -- would the harmony defender likely last long enough?
 
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Chely7425

New member
A friend of ours has a 4YO little girl with down's syndrome. She is just about to outgrow the harness on their carseat (which is a short one -- evenflo perhaps?) and she is wondering what to get next. Fortunately it sounds like she is willing to keep harnessing her rather than transitioning her to a booster.

My question is basically what to recommend her to get for her DD, given that she has down's syndrome and will likely need to be harnessed longer than a neurotypical child. She is not overly big, so I was thinking if I could convince them to get her a frontier she'd likely be able to ride in that for a long time. Would their insurance likely be willing to pay for a special needs seat? Cost is going to be an issue and a frontier might be out of their price range -- would the harmony defender likely last long enough?

I would recommend she get a Nautilus if she is on the smaller side while she works on getting a special needs seat approved thru her insurance. In order to get a SN seat approved she is going to need to get a seating evaluation done (usually by a PT or OT) and then they will submit a script and a letter of medical neccesity to the insurance company. Often it will be declined and then you have to appeal it.
 

Shaunam

New member
In my experience, insurance doesn't like to pay for regular seats, only ones marketed specifically for special needs. That's not to say they won't but I don't think it's likely. So I agree with the pp that something like the nautilus would work well until they approve a special needs for her. At that point I'd look at something like the recaro Monza reha, the Britax traveller, or the Merritt Roosevelt.

The new harmony seat looks nice but I know a lot of people are already turned off by how incredibly short the crotch strap is. I think a nautilus is a better bet until they resolve that problem.
 

Chely7425

New member
Insurance will almost never pay for a traditional seat which is stupid.. lol. The seats Shauna mentioned are really nice, the Carrot 3 and Snug Seat Pilot are also good options, although the carrot has a much higher price poitnw hich insurance might not love :)
 

flipper68

Senior Community Member
Insurance will almost never pay for a traditional seat which is stupid.. lol.

It's true that insurance won't pay for a traditional seat, but I don't think that's stupid. . .should insurance (BTW which insurance: health - auto) pay or assist in paying for car seats for ALL children?

Since the child is somewhat small, I would think a Nautilus, Radian, Frontier or most any other HWH seat would be fine for several years.

It's a bit early to judge whether she will be able to use a booster or will need the additional support/restraint of a SN seat in order to ride safely.

Some pediatric OT/PTs have experience with SN car seats and/or tech training. There are also special needs fitting stations in some Children's Hospitals and Rehab facilities. I would suggest looking into local resources.
 

Shaunam

New member
It's true that insurance won't pay for a traditional seat, but I don't think that's stupid. . .should insurance (BTW which insurance: health - auto) pay or assist in paying for car seats for ALL children?

They sometimes pay for "typical" things once children are past the age they'd normally need said item. For example, diapers. Most state insurance pays once the child is 3 or 4, even for regular diapers (huggies, pampers) and not just bigger, special needs diapers.

One could argue that the typical age to use a booster is age 4, and therfore a child needing a harnessed seat past age 4 has a "medical necessity" and whether they only pay for SN seats or also regular seats is up to them, but you'd think they'd want to save money if possible, buying a nautilus or frontier instead of a $1000 roosevelt.
 

nmb

New member
My 7 yr old w/ DS rides in a Nautilus; he's just about 50% for height and weight on DS growth charts now at 43.5" and 43.3 lbs. He wears mostly 4t, some 5t. He's on the top slot of the Nautilus, but only just barely above the next slot down, so plenty of room to grow yet. Your friend could probably get a Nautilus and use it for years yet. ... depending on the size / growth rate of the kid of course. Of course the frontier will last longer...
 

flipper68

Senior Community Member
They sometimes pay for "typical" things once children are past the age they'd normally need said item. For example, diapers. Most state insurance pays once the child is 3 or 4, even for regular diapers (huggies, pampers) and not just bigger, special needs diapers.

One could argue that the typical age to use a booster is age 4, and therfore a child needing a harnessed seat past age 4 has a "medical necessity" and whether they only pay for SN seats or also regular seats is up to them, but you'd think they'd want to save money if possible, buying a nautilus or frontier instead of a $1000 roosevelt.

True - "they" (Medicaid/Insurance) pay for diapers and pediasure /formula and child care for kids once they reach 3-4, thank goodness. Although I've had some experience with Medicaid deciding a family was using "too many" diapers. . .'um, define "too many?"

With all the HWH seats that are readily available, I don't think it's realistic or even necessary to ask for help paying for a $200-300 item. Once upon a time, it took some work to find a 5 pt seat for a 4-5 year old or a 45 lb 3 year old. Now it's becoming more the norm, especially with combo seats that transition to boosters (Nauti, Frontier).

If we ask/expect insurance to pay for everything, the cost of said insurance/medicaid rises dramatically. "Oh, don't worry, insurance will pay for it," line is BOGUS! WE pay for it, through frozen pay, premiums, co-pays, co-insurance, deductibles, and taxes. It's already expensive enough, thank you.
 

Shaunam

New member
I'm just saying, if insurance is going to pay for something *anyway*, they may as well consider the more inexpensive items. When Charlie turned 3 and Medicaid started paying for her diapers, I requested Kroger brand. I was used to them and liked them. They said they weren't an approved item and insisted on huggies or pampers. So, whatever. :rolleyes:

Another example, sort of different...Medicaid won't help with the costs of feeding a child a blended diet. The initial cost is a $500 blender. After that it's just food, which obviously the family will have to pay for. So instead of supplying a one-time item for $500, they'd rather just supply formula month after month, year after year, for upwards of several thousand dollars a month.

The main issue is they don't think outside the box. We're not talking about typical children here. What may be "only" a $200-300 item seems like no big deal to you, but when Charlie was ill all the time and I couldn't work, or could only work 20 hours a week, and was barely paying my bills, buying a car seat was a hardship. They bought her a traveller which ended up not working for her at all....I traded it to menfusse for a radian. When I got tired of putting her in rear-facing, I had to buy yet another car seat because the radian is too upright. And I *just* got her switched to a blended diet because I didn't have an appropriate blender before...we had one donated to us and I'm forever grateful. $500 just wasn't in the budget. They denied us a full support toilet chair over and over for I don't even know what reason. They'd rather pay for diapers I guess. But guess what, she's already started using the toilet and using less diapers. Not two weeks after they finally decided we could have the potty chair. They will also deny us her Prevacid randomly, even though she's been on it for years. 3-4 days without it and she in the ER vomiting blood. They'd rather pay for an ER visit than a $400 prescription. :confused: They also won't pay for cloth diapers, only disposable. I had to argue to get reusable bed pads instead of disposable, which in the end come out much cheaper. I just think it's odd that they won't jump at the chance to go with the less expensive choice when it's an item they are going to pay for *anyway*.

I honestly feel guilty that I have a costly child. I do everything in my power to keep her Medicaid costs down, without sacrificing what is best for her. But they don't make it easy. :shrug-shoulders:
 

flipper68

Senior Community Member
I'm just saying, if insurance is going to pay for something *anyway*, they may as well consider the more inexpensive items.

The main issue is they don't think outside the box.

I hear you there! Logic/common sense in a government program is an oxymoron.

My point isn't that families whose kids have special needs don't need support in order to care for their child OR that Medicaid is flexible, reasonable, or practical.

Rather I think that by purchasing a "regular" car seat for a child with special needs, such programs would be hard pressed to not extend the same "benefit" for typical/all children [not a bad idea really].

It would be expensive and based on the range of opinions here about what seat is "best" and "appropriate" as well as the fact that there isn't a 1 size fits all solution for CR + kid + vehicles as there is with "everyone needs to see the dentist 2x a year for a cleaning. [If there were, what would we have to discuss here? :rolleyes:]
 

ketchupqueen

CPST and ketchup snob
Staff member
Question: some kids with DS deal with low tone and are easily tired. Is that the case here? If so, the Nautilus may not be the best choice due to head slump issues. I'd look at an Evenflo SecureKid 300/400/Snugli combination seat or a Frontier if that's a possible/likely issue, to reduce the chances of severe head slump.
 

nmb

New member
Oddly enough, my boy w/ DS has far less issue w/ head slump in it than my typical son did... he does have low tone and tires very easily, on top of DS he was significantly malnourished for nearly 7 yrs, and fell asleep almost every single time we got in the car for the first 2 mos home... Now, that's purely anecdotal and not meant to imply another kiddo won't have head slump; or that another seat wouldn't be better (for sure the Frontier85 would be more comfortable and last much longer, but if you can't afford it.....). One thing that is hard w/ the Nautilus is the high armrests, make it hard to get him in there at this size w/out hitting his head, and it's hard for him to climb in the seat, he's very uncoordinated. He *can* get in by himself but it takes awhile.

Some pictures of my son riding in the Nautilus here, including a couple of him sleeping in it: http://s66.beta.photobucket.com/user/nmb_01/library/E in Nautilus
 

mrosehughes

New member
Question: some kids with DS deal with low tone and are easily tired. Is that the case here? If so, the Nautilus may not be the best choice due to head slump issues. I'd look at an Evenflo SecureKid 300/400/Snugli combination seat or a Frontier if that's a possible/likely issue, to reduce the chances of severe head slump.

Thank you for bringing this up! I dont think this is the case but I don't know the answer for sure -- I will mention it to mom.
 

christineka

New member
I'd recommend the frontier, if she can afford it. It will last the longest. Imo, it's better to buy the frontier now, than to buy some other seat, then have to jump through hoops for insurance to pay for one or to buy a frontier later. In class, we were told that kids with ds tend to start out smaller, but grow larger than average when older.
 

bethng

Active member
:yeahthatlove: my vote is for a frontier 90. 20.5" top slot if I am not mistaken. Higher then the nautilus. Will last her longer and no head slump. I am generally not a nautilus fan. My 8 year old is still harnessed in his FR85 and has about an inch left of growth. He is 50% in height and weight.
 

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