Please help!

zactayaus · Jan 23, 2013

I received an email today from an occupational therapist about one of her patients.

Here's a copy of the 1st email:
"Leah,
My name is xxxxxxxxx, I am an OT with Weisman Children's Rehab. Hospital. I was recently given your name by xxxxxxxxxx ( you helped her with her daughters carseat and she thought you might be able to help me with some information). I have an adaptive snug seat issued to a family, and mom does not feel comfortable installing it into the car. I sent her to the fire department and she was told that they will not put in or check adaptive seats. Do you know of a place or person certified in adaptive car seat installation?

Thank you so much!"

My Reply:
"Hi xxxxxx,

I am not special needs trained but I do have access to resources that may be able to help this family. Can you tell me which Adaptive Snug seat the family has (there are several models) and can you also tell me the age, weight, and height of the child using the seat. It would be helpful to have the medical diagnosis of the child as well.

Thanks,

Leah"

2nd email:
"Leah,
12-month-old boy with a medical history that includes diagnoses of Dandy Walker Syndrome and Encephalopathy, G-tube, and Trach/Vent. The car seat is the Snug Seat- Traveller Plus model. He currently weighs about 20ish pounds, and the height I am not 100% right now- I have to go into my file and check it out. I really appreciate your help!"

I'm thinking the Traveller Plus is not the ideal seat for this little guy. It has a 22lb minimum weight limit and is FF only. However with all his medical issues maybe he has to be FF?

I can certainly read the entire manual to the seat and learn the installation and then teach it to the family, but he's got a lot going on and I'd feel better with someone certified in special needs. I'm going to reach out to my safekids contact and see if she can help but figured I'd see if I can get some help here in the meantime.

ETA: More info and a question in post #17.

ketchupqueen · Jan 23, 2013

Pm Judi, she knows the TP really well.

zactayaus · Jan 23, 2013

Thanks! I will!

Judi · Jan 23, 2013

I do? lol Yes, it is FFing only. It is basically the regent. I would ask if there is any reason the child can not RF. I don't know all the medical stuff, so that helps me, plus if gets them thinking. You can then talk about why RFing is better IF it is a choice with this child.

Either way, it is best to look at conventional seats, before looking at medical seats. When the child is older, and no conventional seats will work, then go with the medical.

ETA: http://www.adaptivemall.com/brtrpl1.html?ag=Britax&kw=Britax Traveler Plus

TyAndCheyMommy · Jan 23, 2013

I have a special needs child, and she is 5 and the snug seat is still fairly large for her to fit in properly.
I would suggest seeing if the family is open to rear facing their child. There are a lot of great seats that will rear face a special needs kiddo- which it is almost more important for them to rear face as long as possible.

zactayaus · Jan 23, 2013

Thanks guys. I emailed the OT back asking what seat the child has been using up until now. Just so I can see where we stand.

jess71903 · Jan 23, 2013

This http://www.ninds.nih.gov/disorders/dandywalker/dandywalker.htm on Danny Walker syndrome indicates that it would be REALLY SUPER important for a child with it to rear-face to the max (Increased cranial size, excess fluid, motor delays, etc.)

4boysmom · Jan 23, 2013

Yeah I don't know why kiddo would not be able to rf. shaunum's dd has a trach and g tube (several kiddos here are tubies at that i just know her dd has both) and until recently was rear facing certainly well past 1/20. The other Dx comes with larger than average head ratio so even more reason to rf... Perhaps if kiddo was very high muscle tone is all I could come up with but even then i would think kiddo could remain reding past 1/20

BookMama · Jan 23, 2013

I agree that if there is no medical reason for the child to FF rather than RF, then RF would be best. Certainly a conventional seat would be more suited to a 1YO fit-wise, and would be easier for the parents to handle and install. (And the techs at her fire department might be willing to help her.)

Honestly, the Snug Seat is so upright that even if he does need to FF for some reason, there are much better choices for him. A MyRide, for instance, would give him a nice amount of recline even FF.

Did your acquaintance tell you who recommended this seat for him in the first place? It sounds like maybe the person who emailed you in the first place is the one who helped them get the seat, and it also doesn't sound like she understands child passenger safety very well. I wonder if there's any way to (nicely) suggest that her hospital have her trained as a CPST and then special needs trained. It's not expensive, and since she appears to be dealing with the seats anyway, would certainly improve the service they're giving their patients. I work in a major health system (I'm not at the hospital - CPS isn't part of my job, it's just a coincidence that I work at the health system) and all of the people we have who deal with assessing for and acquiring adaptive car seats are trained CPSTs, and I believe most of them have completed the actual special needs course as well.

zactayaus · Jan 23, 2013

BookMama said:
I agree that if there is no medical reason for the child to FF rather than RF, then RF would be best. Certainly a conventional seat would be more suited to a 1YO fit-wise, and would be easier for the parents to handle and install. (And the techs at her fire department might be willing to help her.)

Honestly, the Snug Seat is so upright that even if he does need to FF for some reason, there are much better choices for him. A MyRide, for instance, would give him a nice amount of recline even FF.

Did your acquaintance tell you who recommended this seat for him in the first place? It sounds like maybe the person who emailed you in the first place is the one who helped them get the seat, and it also doesn't sound like she understands child passenger safety very well. I wonder if there's any way to (nicely) suggest that her hospital have her trained as a CPST and then special needs trained. It's not expensive, and since she appears to be dealing with the seats anyway, would certainly improve the service they're giving their patients. I work in a major health system (I'm not at the hospital - CPS isn't part of my job, it's just a coincidence that I work at the health system) and all of the people we have who deal with assessing for and acquiring adaptive car seats are trained CPSTs, and I believe most of them have completed the actual special needs course as well.

No, they did not say who recommended the seat. I have sent an email asking what seat the child has been using previously and once I get a response back to that email I will move forward with seeing if we can get this little guy rear facing in a seat that would work better for everyone.

I will be looking into becoming special needs certified asap. This is the third time in less than 6 months? that I have been asked to help with a special needs case (all 3 from different places). Apparently word got out that I'm the tech that knows everything

in my area and if I don't know it I find out. Not a bad thing but I need more expertise in this particular area.

Shaunam · Jan 24, 2013

Charlie would have been absolutely swallowed by that seat at a year and 20 lbs! I have a pic of her in it at about age 3.5 if you are interested. If mom and dad are insistent they want to use the seat after you go over the benefits of rf'ing (including reasons specific to his condition) I'd go ahead and teach them to install it. He does meet the minimums and you can always used rolled blankets at his sides and a washcloth at his crotch. Definitely push rf'ing though. Even a cheapie seat to hold him over another year would be wonderful. Do you have program seats to hand out?

Baylor · Jan 24, 2013

zactayaus said:
No, they did not say who recommended the seat. I have sent an email asking what seat the child has been using previously and once I get a response back to that email I will move forward with seeing if we can get this little guy rear facing in a seat that would work better for everyone.

I will be looking into becoming special needs certified asap. This is the third time in less than 6 months? that I have been asked to help with a special needs case (all 3 from different places). Apparently word got out that I'm the tech that knows everything in my area and if I don't know it I find out. Not a bad thing but I need more expertise in this particular area.

Your personality really makes people feel comfortable. You are kind and warm.I think you rock!

zactayaus · Jan 24, 2013

Baylor said:
Your personality really makes people feel comfortable. You are kind and warm.I think you rock!

Aww, :thanx!:

Baylor · Jan 24, 2013

You are so welcome. I really enjoyed hanging out with you and Lemonade. We need to do that when we are no longer living in the himalayas....

TyAndCheyMommy · Jan 24, 2013

4boysmom said:
Yeah I don't know why kiddo would not be able to rf. shaunum's dd has a trach and g tube (several kiddos here are tubies at that i just know her dd has both) and until recently was rear facing certainly well past 1/20. The other Dx comes with larger than average head ratio so even more reason to rf... Perhaps if kiddo was very high muscle tone is all I could come up with but even then i would think kiddo could remain reding past 1/20

My daughter has extremely high muscle tone. She is as stiff as a board unless you know exactly how to bend her.
We actually had less trouble getting her sitting in a rear facing seat than a forward facing seat. One of the reasons was lack of support for her legs.
Unfortunately she is now to big to rear face at all.

zactayaus · Jan 25, 2013

Shaunum, what do you think your favorite RF seat was for Charlie and do you think it would make a difference that this little one is on a vent?

zactayaus · Jan 25, 2013

Copy of 3rd email from OT:

"He has been using a standard carseat with his 24 hr nurse in the back holding his head!"

So with that info I'm going to assume he was rear facing. What seat do you think would be best for this little guy then. Myride with safety surround to help position his head?

ketchupqueen · Jan 25, 2013

It's quite possible the mom needs an appointment to get the seat installed at a full recline to reduce head slump, and either rolled blankets or yeah, something like the MyRide or MySize/Size4Me/Headwise that has good head padding.

Shaunam · Jan 25, 2013

If it's 45 degrees he shouldn't have head flop. If he needed someone to hold his head back in his regular seat, it was most likely installed too upright.

Shaunam · Jan 25, 2013

zactayaus said:
Shaunum, what do you think your favorite RF seat was for Charlie and do you think it would make a difference that this little one is on a vent?

My ride, hands down. I just hate that they are having so many buckle issues! I really hesitate to recommend any graco harnessed seats these days, and that's a shame.

Of the ones that did NOT work for Charlie rf'ing:

evenflo triumph advance and I'm assuming the momentum too.
radian was not good when she was younger (now it is because her tone has improved)

Britax seats were ok, but iffy
complete air was ok, but similar to the boulevard as far as support, only more leg room.

I assume the recaro euro would be plenty supportive at 45 degrees, but it sure does lack leg room. I've never actually tried her rf'ing in it though.

Please help!

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