7 month old with no head control help!!!

zinkter

New member
Our daughter is now 7 months old, is 14 pounds 8 ounces and 23.5 inches. She has absolutely no head control and is very floppy. If we attempt to sit her on our laps at any type of incline she screams and pushes herself flat. She also has a slew of medical issues including Down syndrome, obstructive sleep apnea with central sleep apneic events, heart surgery 5 months ago, and currently has a peg tube type G tube. Which brings me to my question, she screams like it is the end of the world in her carseat. We have seen two physical therapists now and one says she is having sensory issues the other it is likely she is screaming to keep her airway open from the incline. We have her in one of the new Graco click connect 40s and she hates it! We are told due to her size there is no other option for her because she is too large for 2 of the car beds (or will be soon) and because she can't have pressure on her G tube the hope car bed won't work. Does anyone have a suggestions on what may work? As of now we even have a wedge under the base of the carseat putting her at a near level to the ground angle and she stills screams every time, it wouldn't be such a deal but we drive to the children's hospital 1.5 hours away 3-4 days a week.
 
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joolsplus3

Admin - CPS Technician
Welcome to the board. I'm so sorry you're having a hard time finding a way for your wee one to be comfy :(
One seat that might work well for her is the new BabyTrend Inertia... http://www.babytrend.com/car_seats_inertia/CS58743.html
We already have it at our Babies R Us, and I'm *amazed* how reclined it is. I would have suggested the cc40 due to just looking at it in the store, so I'm sorry it's not working out for you guys.
 

DaniannieB

Ambassador - CPS Technician
I agree that the BabyTrend Inertia may be the way to go for now.

In the meantime, try contacting the manufacturer of the Hope car bed. I thought they had different types of inner restraints for different types of needs. I know they mentioned it working for an omphalocele, so you would think it would work for a g-tube, too.
 

CTPDMom

Ambassador - CPS Technician
Thinking out loud here, so you SN techs tell me if this is just wacky but...

Would a wedge under baby's bottom, like the kind in the Hippo seat, possibly work to help make her feel more 'straight'?
 

trippsmom

CPST Instructor
Thinking out loud here, so you SN techs tell me if this is just wacky but...

Would a wedge under baby's bottom, like the kind in the Hippo seat, possibly work to help make her feel more 'straight'?

I'm thinking the same thing, a la Coccoro. Maybe?
 

tiggercat

New member
A couple of thoughts:

Is there a seat of any kind that she can tolerate? Bouncy chair? Swing? Take a look at the shape of that and try to look for a similarly shaped carseat.

It might be stressful, but could you take her to a store and try her in a few seats to see of you can find one she can tolerate?

I wonder if a straight backed convertible reclined to 45 degrees might work better than a more bowl shaped infant seat? Ex. Radian? Then you'd have more transfers in and out, though.

Last question, when you say you have her reclined to level to ground, do you mean the seatback is literally horizontal? I understand your reasoning, but that would be very dangerous in a crash.
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zinkter

New member
There really isn't any kind she tolerates well, she screams and arches trying to lie flat in a bouncy (we have 4) and her swings (3 of these). We have a tumbleform but she barely tolerates it at a 5-10 degree angle from the floor. We have really tried about everything we canto have her sit some but she isn't happy unless she is 100% flat.

As for trying different seats we have thought about it because when I got off the plane from flying to adopt her she was just way to snail for our infant seat and we went straight to babies r us to buy the cc40. I just loathe taking her in public more than necessary but it looks like our only option.

As for the wedge and the seat it about 15 degrees parallel to the floor. We know its not safe but I don't know what else to do because we must protect her airway at all costs.

We actually got a card bed about an hour ago from a friend (still within the 6 year window) and she loves it and is actually in the back seat fast asleep right now (we are parked). I just don't know what to do when she hits 20 pounds which will be in about a month because she puts on about a pound a week.



A couple of thoughts:

Is there a seat of any kind that she can tolerate? Bouncy chair? Swing? Take a look at the shape of that and try to look for a similarly shaped carseat.

It might be stressful, but could you take her to a store and try her in a few seats to see of you can find one she can tolerate?

I wonder if a straight backed convertible reclined to 45 degrees might work better than a more bowl shaped infant seat? Ex. Radian? Then you'd have more transfers in and out, though.

Last question, when you say you have her reclined to level to ground, do you mean the seatback is literally horizontal? I understand your reasoning, but that would be very dangerous in a crash.
Sent from my iPod touch using Car-Seat.Org
 

DaniannieB

Ambassador - CPS Technician
Would it be possible to get some kind of padding that would then decrease pressure on her g tube which would allow the Hope bed to work? Did you try the Hope bed IRL (both the bag and the 3 pt restraint options)? Have you emailed Merritt Manufacturing to see if they have another solution? If she needs to lie down it seems like the Hope is probably the best option once she outgrows the car bed you're borrowing.
 

ketchupqueen

CPST and ketchup snob
Staff member
The Hope can most definitely accommodate a g-tube, it has options to do so. :) Definitely call Merritt or find someone familiar with it near you and they can explain the options.
 

CTRS4peds

New member
I also suggest the hope car bed, I use it at work and the kids have g-tubes. No problems




Also check out the coccoro, the insert is great and may help her feel like she is flat.
 

Chely7425

New member
I agree that the hope can definitely accomodate g tubes. Merritt is amazing at working with parents and customizing their products to fit individual needs.
 

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