Need resources/info about seats for kids with low tone

mamahen

Member
I am working in putting together a presentation for our local Down syndrome support group about choosing the right child restraint. People with Down syndrome are generally short in stature and can have low muscle tone.

I am especially looking for online resources for info as well as recommendations for kids as they grow.

I was planning to encourage extended rear facing and emphasizing their tendency toward atlanto-axial instability. Also encouraging convertible seats with extra head and side support (does anyone have specific brand recommendations for this?).
I don't have any personal experience with restraints beyond the convertible so am hoping you could recommend some high back boosters, which I'm assuming would be the next step after ff in a convertible?

Also any other info, resources, links, feedback, etc. is very appreciated!

Thanks!
And happy Down syndrome awareness month.
 
ADS

jess71903

Ambassador
Re: Need info for kids with low tone

I know the MyRide is great for low-tone kids due to its high sides and natural recline. I'm not a booster guru, so I'll pass on that question for specific seats. If the individual has the mental maturity, they may be a group to encourage RF as long as humanly possible, then go straight to boostering, due to the atlanto-axial instability. That would be a case-by-case thing, though, because I know impulse control can be a big issue, even into teen years.
 

mamahen

Member
(x-post) Need resources/info about seats for kids with low tone

I am working in putting together a presentation for our local Down syndrome support group about choosing the right child restraint. People with Down syndrome are generally short in stature and can have low muscle tone.

I am especially looking for online resources for info as well as recommendations for kids as they grow.

I was planning to encourage extended rear facing and emphasizing their tendency toward atlanto-axial instability. Also encouraging convertible seats with extra head and side support (does anyone have specific brand recommendations for this?).
I don't have any personal experience with restraints beyond the convertible so am hoping you could recommend some high back boosters, which I'm assuming would be the next step after ff in a convertible?

Also any other info, resources, links, feedback, etc. is very appreciated!

Thanks!
And happy Down syndrome awareness month.
 

Jan06twinmom

New member
Re: (x-post) Need resources/info about seats for kids with low tone

For some children, a combination seat might be a good option after the convertible car seat. One of my friends has twins with CP and other medical conditions. She recently bought the Britax Frontiers for her girls so that she can keep them harnessed for longer.

For some children, they may even need to go with a special needs harness seat in order to have the added support over the longer term.
 
V

VanIsleMommy

Guest
Re: (x-post) Need resources/info about seats for kids with low tone

I have little experience with this except for my littlest one who has torticollis and low tone. Angie from here sent me HUGZ which might help some kids, I use them in the car seat, the stroller, etc. They are really handy and used like a rolled blanket. You could also duct tape a rolled blanket I suppose. I also like the britax seat for her although the true fit with padding is ok on the lower slots too.
 

spokaneCPST

CPST Instructor
Re: (x-post) Need resources/info about seats for kids with low tone

Riley Hospital has a great website with lots of information on transporting children with special health care needs. They have a nice brochure specific to DS, but I don't know how long it takes to get them in the mail. Here is the website:
http://www.preventinjury.org/SNTmedCond.asp click on the various links on the left side. They used to have a DS specific area, but I can't find it anymore.


Hope that helps!
Renee
 
V

VanIsleMommy

Guest
off topic... i wonder if that's what bothers ds.. he hates light touch and that is mentioned somewhere. he also hates the harness pads though so :(
 

mamahen

Member
spokaneCPST said:
Riley Hospital has a great website with lots of information on transporting children with special health care needs. They have a nice brochure specific to DS, but I don't know how long it takes to get them in the mail. Here is the website:
http://www.preventinjury.org/SNTmedCond.asp click on the various links on the left side. They used to have a DS specific area, but I can't find it anymore.

Hope that helps!
Renee

Thanks Renee!
 

flipper68

Senior Community Member
Couple of ideas in addition to what you've already planned:

1) Make parents aware of/help them connect with SN trained techs @ National CPS Certification: http://cert.safekids.org/ . Encourage parents to take advantage of this resource. Also, some children's hospitals, therapy clinics, and rehab facilities have "car seat clinics." For a fee (similar to OT/PT session), they can meet with a tech who has lots of experience AND access to a variety of seats to try IRL.

2a) Point out that SN car seats are considered durable medical equipment and the approval/acquisition process through medicaid and insurance is a lengthy one.

2b) They will need letters of justification for approval of durable medical equipment AND there are limits on how often a seat can be replaced through this process. While there are other less commercial sites, this one has the info "in English:" http://www.freedomconcepts.com/therapist/funding/justification-letters/

3) Make them aware of ERF and HWH seats that ARE available in the retail market. Let them know which seats have which features and where they might be able to see a particular seat in their community (and see how their child fits/how it fits in their vehicle) before purchase (stores, school, other families, etc.).

4) Give them web links to special needs manufacturers/suppliers:

EZ-on http://www.ezonpro.com/index.shtml
Adaptive Mall http://www.adaptivemall.com/safetycarseats1.html
Merrit http://eztether.com/
Columbia http://www.columbiamedical.com/special-needs-disabilities-products-categories.asp?SubCategoryID=5
Recaro http://www.thomashilfen.us/index.php?option=com_content&view=article&id=186&Itemid=452
Convaid http://www.convaid.com/products-carrot-special-needs-seat-c-1_181_191-l-en.html
 

mamahen

Member
thanks for all the input. It is good to hear the different aspects from you all. Most of these particular kids dont need special seats, just a good commercially available one that RF's them longer.
 

flipper68

Senior Community Member
thanks for all the input. It is good to hear the different aspects from you all. Most of these particular kids dont need special seats, just a good commercially available one that RF's them longer.

I wonder if that is true.

I don't have a ton of experience with people w/Down Syndrome, however, I do know as a group, they tend to:

  • be short
  • have low tone
  • may have concurring behavioral/cognitive issues
  • be heavy/chubby
Any of these could make it more challenging for a child to be comfortable in and successfully use a BPB.

It's also highly likely that their short statue will mean that they will be very late (if ever able) to pass the 5-step test. In that case, they will continue to need some form of support/restraint to provide safe transport well into their teens and beyond.
 

mamahen

Member
I wonder if that is true.

I don't have a ton of experience with people w/Down Syndrome, however, I do know as a group, they tend to:

  • be short
  • have low tone
  • may have concurring behavioral/cognitive issues
  • be heavy/chubby
Any of these could make it more challenging for a child to be comfortable in and successfully use a BPB.

It's also highly likely that their short statue will mean that they will be very late (if ever able) to pass the 5-step test. In that case, they will continue to need some form of support/restraint to provide safe transport well into their teens and beyond.

BPB?

Based on those factors (short, low tone, behavioral issues, heavy), what would be a likely progression of restraints?
 

flipper68

Senior Community Member
BPB?

Based on those factors (short, low tone, behavioral issues, heavy), what would be a likely progression of restraints?


Belt positioning booster - sorry.

The progress would be almost the same as you've already discussed: 1) ERFing, then into a 2) High weight harness (HWH) convertible/combination seat - may want to consider a seat that is more reclined than upright if tone is a concern, 3) determine if a child can ride safely in a booster (defined as maintain proper position for the entire trip) or if a special needs seat is required.

The last decision would depend on several factors: child's tone or motor issues (able to maintain seated position w/o support and does he/she sleep in the car), behavior/compliance/maturity, and size. In addition, the type of vehicle (some seats don't work in some vehicles), transportation needs (Do mom & dad both transport? a caregiver? grandparents? Does the seat need to be moved between vehicles frequently?), and seating needs for other family members (it can be easier to buckle a 5 pt than a booster, or there needs to be access to other seating positions) should be considered

The short stature tendency is a plus - it means that most seats will likely fit for a LONG time. [In my experience, kids almost always outgrown seats by height, not weight - but I have many relatives as well as multiple female friends who are 6' or taller. Their children tend to be tall. :rolleyes:]
 

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