Child with a blood disorder?

Katy · Apr 25, 2010

I was looking to find a carseat that would best suit a child with a blood clotting disorder. He's around 4ish and 48lbs Not sure on height but I know he's a bit smaller than average and has short legs. Right now he's in a booster. I originally thought that I should recommend a FR85 or the regent so he can be FF for a very long time since a minor accident could be deadly for him, and at least a harness would spread out the force. Now I'm thinking maybe a RF one for him, but not sure how to find a seat that RF beyond 45lbs. I know the family is very low income and the child is 100% covered though the state's insurance. What would you recommend to do?

Katy · Apr 25, 2010

Another question. My other friend's child survied a train accident 3 years ago! He's now 8.5yrs, tall but only 48-50 lbs. The accident paralized him waist down. He's very mobile though as he goes up and down stairs, does all his own transfers and showers. He rides in a booster sometimes but most of the time but does ride with just the seatbelt. Are there any special recommendations due to his injury beyond the 8/80 law.

carseatcoach · Apr 25, 2010

Most 8yos need boosters, whether they are special needs or not. Keeping him in a booster is an appropriate choice regardless of his injury.

There is no NHTSA-approved seat that RFs past 45#. In order to get an EERF seat, the family would have to import. I do not think they would be able to get a NHTSA waiver to do so. Without a waiver, there's almost no chance insurance would cover it.

Katy · Apr 25, 2010

chickabiddy said:
Most 8yos need boosters, whether they are special needs or not. Keeping him in a booster is an appropriate choice regardless of his injury.

I was checking to see if there was any medical benefit to do a harness system? If not than I'll push the parents to use the booster fulltime. OASN, I just got her daycare kid out of a 3yr expired seat!

There is no NHTSA-approved seat that RFs past 45#. In order to get an EERF seat, the family would have to import. I do not think they would be able to get a NHTSA waiver to do so. Without a waiver, there's almost no chance insurance would cover it.

No way could they import

Is there any other options? I'd rather see him RF and they went along with it but cannot afford it. Maybe we should just go for a FF harness? Would his insurance cover that? Which one would be the most recommended. I'm sure we'd want the one seat that would last the absolute longest.

carseatcoach · Apr 25, 2010

If insurance will cover it, the Merritt Roosevelt. There are no legal options to RF past 45# without getting a NHTSA waiver to import.

flipper68 · Apr 25, 2010

Katy said:
Another question. My other friend's child survied a train accident 3 years ago! He's now 8.5yrs, tall but only 48-50 lbs. The accident paralized him waist down. He's very mobile though as he goes up and down stairs, does all his own transfers and showers. He rides in a booster sometimes but most of the time but does ride with just the seatbelt. Are there any special recommendations due to his injury beyond the 8/80 law.

He might not need a booster if he is tall and riding on a narrow seat. Does he pass the 5 step test: http://www.carseat.org/?

If he still uses a booster, it might be helpful to have a booster that uses LATCH so it doesn't move when he gets in/out.

I was looking to find a carseat that would best suit a child with a blood clotting disorder. He's around 4ish and 48lbs Not sure on height but I know he's a bit smaller than average and has short legs. Right now he's in a booster. I originally thought that I should recommend a FR85 or the regent so he can be FF for a very long time since a minor accident could be deadly for him, and at least a harness would spread out the force. Now I'm thinking maybe a RF one for him, but not sure how to find a seat that RF beyond 45lbs. I know the family is very low income and the child is 100% covered though the state's insurance. What would you recommend to do?

I think it will be quite challenging to get state insurance to provide a HWH seat for this child. Medicaid/CHIP won't cover anything that is not a "medical necessity" and I think it will be hard to justify this as a "medical necessity" according to Medicaid.

How about applying to the Kyle David Miller Foundation or other charitable organization?

Splash · Apr 25, 2010

What is wrong with the child? "Blood clotting disorder" is exceptionally broad. My child has Delta SPD secondary to immune dysfunction, and car seats have never even been a concern relating to his clotting.
Also, insurance will not and should not cover a car seat in this situation. It is a basic expense of having a child. The paralyzed kid they likely would, but not a child with no (or dubious) medical need of an advanced seat.

Evolily · Apr 25, 2010

I would recommend a Evenflo Generations for the 4 y/o if he fits with growing room. I wouldn't recommend importing a seat (chances of getting a waver are slim to none) and it would be expensive. If the child doesn't have growing room in the Generations I'd suggest a Nautilus, because the more expensive seats (Frontier 85 and Regent) are likely outside of the families budget.

For the child who is paralyzed it all depends on the degree of disability. Can the child sit upright or does the child need recline? How much recline? Does the child need to lay flat? Etc, etc. The child will likely need a special needs seat and it should be covered by insurance..

Katy · Apr 26, 2010

Making this a quick one handed reply....

I got more accurate info from the grandma, she cares for him fulltime. He's 4yrs with his birthday in Oct. 47in, about 70th% has longer torso and short legs. She couldn't find a tape measure for torso height. He was 37.3 lbs a few weeks ago when she took him in. His specialist did recommend a RF seat! He has Fibrogenemia.

So he'll fit in a XTSL! I'm going to fit him in my kid's seats to see what slot he's on. Not sure how the funding will work though.

I'm not sure if this is allowed... so please edit if it's not. For a later solution does anyone know of a Swedish seat that can be bought 2nd hand from a trusting safe parent...maybe a tec here?

You were talking about needing a waiver and we wouldn't get one. Why? I see other parents here and else where without special needs in Swedish seats. I understand insurance not covering it.

Thinking we'll see what we can do to get the XTSL, but if not I'll check into getting a roosevelt covered. If all else fails we'll pick out a reg extend harnessed seat they can afford. Will insurance cover a XTSL since it is not a medical seat? The grandma said she'll take him to his ped specialist right away if it makes a difference.

Also he rides a school bus. He's in headstart this year and next. In morning he rides a little bus with just a seatbelt, in afternoon the big bus with nothing. She now wants to get him in a seat on there too! How do we approach the school?

carseatcoach · Apr 27, 2010

Katy said:
You were talking about needing a waiver and we wouldn't get one. Why? I see other parents here and else where without special needs in Swedish seats. I understand insurance not covering it.

Those parents are making a choice to use a seat against their state law.

Katy · Apr 29, 2010

bump

mykidsmom · Apr 29, 2010

Katy said:
Making this a quick one handed reply....

I got more accurate info from the grandma, she cares for him fulltime. He's 4yrs with his birthday in Oct. 47in, about 70th% has longer torso and short legs. She couldn't find a tape measure for torso height. He was 37.3 lbs a few weeks ago when she took him in. His specialist did recommend a RF seat! He has Fibrogenemia.

So he'll fit in a XTSL! I'm going to fit him in my kid's seats to see what slot he's on. Not sure how the funding will work though.

I'm not sure if this is allowed... so please edit if it's not. For a later solution does anyone know of a Swedish seat that can be bought 2nd hand from a trusting safe parent...maybe a tec here?

You were talking about needing a waiver and we wouldn't get one. Why? I see other parents here and else where without special needs in Swedish seats. I understand insurance not covering it.

Thinking we'll see what we can do to get the XTSL, but if not I'll check into getting a roosevelt covered. If all else fails we'll pick out a reg extend harnessed seat they can afford. Will insurance cover a XTSL since it is not a medical seat? The grandma said she'll take him to his ped specialist right away if it makes a difference.

Also he rides a school bus. He's in headstart this year and next. In morning he rides a little bus with just a seatbelt, in afternoon the big bus with nothing. She now wants to get him in a seat on there too! How do we approach the school?

First, I would contact the transportation department and first ask what the guidelines are for a child safety seat. For example, our district requires a child safety seat for all kids under 40 pounds.

Also does he have an IEP? If so, you could see about getting something added to that about a car seat or restraint for the bus.

Child with a blood disorder?

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