Has anyone heard of Angelman's Syndrome?

Discussion in 'General Parenting' started by mstang67chic, Aug 14, 2007.

  1. mstang67chic

    mstang67chic Going Green

    This should probably be on the Watercooler but I thought I might get better response here.

    I do car seat inspections and installations and today had a lady in that has a son with this condition. He is in a seat now that is fine for his weight but he needs a seat that the weight limit for the harness straps are higher than what he has. I don't really know anything about special needs seats (separate training for that) and I do have a call in to a couple of people who have the training. But I was wondering if anyone here has run into the problem of needing car seats with a higher weight limit on the harness straps, and if so, what brand are you using? I should hear back from my contacts tomorrow but wanted to do some research tonight to see what options I can give this lady. Part of the reason that he needs something like this is that if he's just in a belt positioning booster, he either unfastens the seat belt or puts it behind him. According to his mom, he dosn't have the mental capacity to understand why he can't do this. Also, he has seizures, and mom understandably wants him to have more support than just a seat belt.

    Soooooooo.......anyone here have experience with special needs car seats??? Any help would be greatly appreciated!
  2. slsh

    slsh member since 1999

    Bigger car seats were my life before we got the wheelchair lift van. :wink: Boo had a Columbia Car seat for years, though I'm not sure the belts as are would work for a kiddo with Angelman's, but I'm also *positive* there are ways to secure the straps so little hands cannot undo them because it's not an uncommon problem when you're talking bigger kiddos. I think there's also one by the brand name of Gorilla. Both seats come with adjustable/removable supports for the trunk, neck, and thighs. Also, insurance *should* pay for this with- appropriate documentation from MD and possibly PT; falls under durable medical equipment.

    Weight was never an issue with us, but length was. The Columbia could actually be bolted to the floor of the van/car for heavier kiddos.

    Another resource would be to google "Exceptional Parents Magazine". I'm sure they have resources on there for car seating for bigger kids.
  3. mstang67chic

    mstang67chic Going Green

    Thank you! Actually, you were one of the people I was hoping would respond to this thread. I immediately thought of Boo but I couldn't remember your screen name! lol

    I don't think this boy has an issue with unfastening the actual harness straps although he does loosen them so he can reach them to chew on them. Mom had tried just using his seat as a belt positioning seat with the seat belt and he seems to take exception to the seat belt so he got the harness straps back. There are some products out there that are just the harness (somehow fasten into the set belt buckle) but he really needs more body support than that. He can hold his head up and seems to sit up in the seat well but his muscle control seems to be a little on the spastic side and with his seizures, just needs more support.

    I will look these seats up and see what I can find. Thanks again for the help!!!

    (Maybe I should work with my special needs contacts and start a data base on bigger/special needs seats!)
  4. Marguerite

    Marguerite Active Member

    I would also suggest talking to hospital-based occupational therapists - it's part of their job to find resources like this, they probably have already done the homework you're trying to do now. Try a kids hospital and ask for the Occupational Therapist (OT) or physiotherapy department, then pick their brains.

    We have a facility in Australia, in every state, called Independent Living Centre. They would be the prefect people for this query.

  5. Fran

    Fran Former Site Owner

    There is a catalog that I think is called Abilitations that has an incredible array of equipment. You may find what you are looking for.
  6. mstang67chic

    mstang67chic Going Green

    Between my research and the Occupational Therapist (OT) I talked to today, I think we've got a good list of options for this mom. Thanks for all of the help!