need advice re: one year old with Down Syndrome

aisraeltax

New member
we have 3 seats right now.
1. Britax Chaperone
2. combi coccoro
3. Clek Ffonf

baby boy just turned one and has been in the Britax Chaperone to date. He has been slumping forward the last few weeks (he's approximately 17 lbs). It has concerned me enough that I tried the Combi again, but with same results.
I would like to use the Ffonf; however the manual states not to use with a baby until they are sitting independently. Due to baby boy's low tone he is still not sitting independently, though he does have good head control.

anyone have any suggestions? recommendations?

unlike any of my other boys, this one is great in the car. I am now really concerned about his slumping forward though. I tried to get the Britax to lean back a bit further with the install but I wasn't successful.
 
ADS

MommyShannon

New member
Is he maybe trying to sit up? My kids start fighting the recline as they get more head control and close to sitting up. They like a more upright seat at that point. The NextFit is a really tall, easy to install, and very supportive seat.
 

aept

New member
I would maybe call Clek and see why they don't recommend use until the child can sit independently. Ask them directly about special needs, and give his size, age, and his current level of skill with sitting and head/neck control.
Also, as a pediatric PT, I am quite aware that there's a big range of "independent sitting". Some parents might consider that to be when the child can first sit up, propping with their hands, for a few seconds. Other parents night consider it when they feel the child is safe enough in sitting to be left alone on the floor to play (and not put pillows all around them - lol!)
That could be a difference of quite a few months for most babies!
Also, does he roll independently yet? (That might give me more insight into his tone and strength.)
How much does he weigh now? Where does he fall on a growth curve? Had he had any surgeries (heart or other?)
 

aisraeltax

New member
I would maybe call Clek and see why they don't recommend use until the child can sit independently. Ask them directly about special needs, and give his size, age, and his current level of skill with sitting and head/neck control.
Also, as a pediatric PT, I am quite aware that there's a big range of "independent sitting". Some parents might consider that to be when the child can first sit up, propping with their hands, for a few seconds. Other parents night consider it when they feel the child is safe enough in sitting to be left alone on the floor to play (and not put pillows all around them - lol!)
That could be a difference of quite a few months for most babies!
Also, does he roll independently yet? (That might give me more insight into his tone and strength.)
How much does he weigh now? Where does he fall on a growth curve? Had he had any surgeries (heart or other?)

he has good head control but is not sitting independently without weighted boppies. he cant prop himself up on his hands, even for a few seconds.

he does roll independently. he's approximately 17 lbs. and in the 40th percentile (for baby boys with down syndrome). he has had no surgeries, though he was in NICU for over 5 weeks and in addition to DS also suffered major hypoxic injury to the brain, so unknown neurological issues.

I have consulted with his PT, OT and our family doctor; however, I know from experience that there are tons of very educated people on this board with a variety of experiences and wanted to pick those brains. :) I love our medical providers, but they are simply not car seat enthusiasts as much as I am. This is my first time dealing with a child with special needs (could smack myself for selling the MultiTech now lol).

my next move is to definitely contact Clek; however, im not optimistic they will go against the manual (though I will post if they do).

i will see if reclining the seat less would make a difference for him.
 

safeinthecar

Moderator - CPS Technician
Has his C-spine been evaluated? That's my worry, that he injured it somehow since C-spine instability is commonly associated with Down Syndrome. You could always try him in the Foonf without going anywhere and see if he sits OK in it. I'm pretty sure the age thing is due to the uprightness.
 

aisraeltax

New member
i will discuss that with our family doctor and chiropractor, but my instinct is that nothing has been occurred which could have caused that.
i contacted clek and they have a car seat tech who specializes in special needs children. she wasnt in on friday but will call me tomorrow.
 

aisraeltax

New member
I'm trying to post pictures of my issues. He likes sitting in the fond, but then his head falls forward and I think he runs out of energy to get it back up. Trying to figure out how to post pix in threads from an iPad.
 

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aisraeltax

New member
My problem with the britax chaperone is that he seems to hate the recline so works to get his head up. However, once he gets his head up, I think it just falls forward. I have tried more inclined and less inclined in this seat and can not get it positioned so that it is within the bubble and that he's happy about.
 

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soph's mom

New member
Can the seat be reclined more? Like to a newborn angle? It looks pretty upright...

Eta- just saw your next post about the recline... I guess that's out but that's the only option I see with no head control.
 

tiggercat

New member
I'm trying to post pictures of my issues. He likes sitting in the fond, but then his head falls forward and I think he runs out of energy to get it back up. Trying to figure out how to post pix in threads from an iPad.

I asked a clek rep about SN kids that would never sit independently at a baby show when the seat first came out and was told that the foonf would not be appropriate for those kids. That might have changed, though, maybe ask Trudy at Clek?

That chin to chest is not good, is he unable to pull his head back up from that position?
 

Keeyamah

Active member
Trying to figure out how to post pix in threads from an iPad.

FYI, it can be done, but it takes using another app, like the one for Photobucket, to do it. It adds having to upload pictures to the app before posting here, but if your on Wifi, it's not too bad. I can help you figure out how to do it, if you want.
 

aisraeltax

New member
I asked a clek rep about SN kids that would never sit independently at a baby show when the seat first came out and was told that the foonf would not be appropriate for those kids. That might have changed, though, maybe ask Trudy at Clek? That chin to chest is not good, is he unable to pull his head back up from that position?

He's able to lift it up but I think he gets exhausted after a few minutes and just gives up.

I'm looking at the myride65dlx. I hate to return the Fonff but I'm not sure it's going to work. Even the britax isn't working right now though.
 

soph's mom

New member
Since he's under the 25 lbs can you try the coccoro with the bottom part of the insert in and the head part taken out like they do for some preemies or would that not come up far enough to help?
 

MommyShannon

New member
The NextFit is really cushy, long lasting, and seems supportive because of the high sides. I wonder if something like the Pria would help because of the big headwings to lean against.
 

aept

New member
What about a Radian at a newborn angle?

I think he is going to need the newborn angle temporarily.
My guess is that right now he is at the stage of his motor development when he doesn't really want to be on his back. Babies that can roll independently often start to prefer being on their tummies or in sitting as they can see and do more in that position. It is probably his instinct to be trying to lift his head into a more "sitting up" type position. (Is he resisting being on his back for diaper changes?)

In the pictures you attached, when he lifts his head forward he apparently doesn't yet have the strength or awareness to extend it back to rest against the back of the car seat.
If he is more reclined, he might still pick his head up but probably won't be able to get it so far forward that it gets "stuck." Instead, gravity will eventually win and he will have to rest it back against the back of the car seat and won't be in such a scrunched position.
Now, he might not be too happy about being more reclined, but you might have to choose between a happy baby and a baby who is riding with his head scrunched forward!
It should be temporary as once he gains more neck strength and control he will be able to self-correct and then you could move into the seats pictured (or more upright seats in general.)
 

aisraeltax

New member
Helpful or not it made me smile :)

I have tried 2 additional seats. I added the infant inserts back to both the corrocco and the my ride. Pictures to follow. Both if these seem better but I think I like the corrocco better. It's still a PITA but I'm ok with that if we can get tesla past this awkward stage. One thing driving me crazy is people suggesting FF would produce better results. I can't see how that is possible but definitely not an option.
 

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