Has anyone got a baby with Dysphagia? Hypertonia? Stiff muscles

Yes! My son has Dystonic Quadriparisic Cerebral palsy he is sometimes very stiff and sometimes very floppy. He is almost two and still is not sitting or walking on his own. He is in a wheel chair. But he recently started trying to crawl.

Ye my little one has hypertonia (floppy infant syndrome) and he's basically still a newborn at 2 years old it's been back and forth to hospital for tests to figure out why but Lucas is a happy little boy he's just slower at progressing and there's been small things he does that show he can progress

What was feeding like and is this linked the issues I mean ?

Also tonight I was getting her changes n her hand did a funny movement then her thumb clicked like a horrible sound I never heard before n I wasn't touching her hand she moved it and it's like it moved out of place I can't explain it but it scared me and she was stiff before it too

@Aleea we have the same chair and it's the only one I found more suitable because of her leaning and she doesn't manage sit me up chairs or highchairs or pushchairs etc

It's linked a little to his condition but it's just because his food goes down his windpipe when he swallows they have 3 criteria for whether they need a tube or not

He gets fed high fibre specialized milk through a pump and it's quite easy but he's gonna be getting a peg in soon through his belly button which is more long term but can be reversed if he ever gets to a point where he can eat safely

What's the 3 criteria ? Also she feeds milk in a bottle ok but it's been a long process of struggles up until recently and I'm just wondering what happens if she doesn't manage the food transition?

As I know under one they are milk focused but noone says what happens after one if they don't manage food and still on bottles milk

I would get tons of therapy and think about Baclofen it's a muscle relaxer. It seemed to make my guy more comfy.

Also our physical therapist wrote us a few different seating options. I can show you.

The 3 criteria I was told was if they get a lot of chest infections, if they can't keep weight on and drop percentiles and if they are coughing after having food so Lucas dropped from 90th percentile down to the 2nd and they gave him a video fluroscopy which was basically an x-ray while eating which shows food going down his windpipe. Can I ask where abouts you are from

East sussex and they have gave a special tomato 1 chair and haven't said anything as in the future plans and what she will need and what to expect. They referred to occupational therapy a while ago but heard nothing.

She can't go in her pushchair so only on floor play or feeding chair n she has nothing else apart from being held or travel cot

She rolls now and gets stuck as her one side of body stays straight n her arm and shoulder always tucks in n gets stuck as she rolls.

We have trouble with bathing as she's so heavy and ling but can't sit up and too big for a baby bath so I have to hold her which I can't for very long and lean over and try wash her but she's so so heavy and no support for her.

I just want to know what they think it might be and what I should expect and what I could do to help her.

Ok so this sounds so similar to Lucas, try being a little pushy for occupational therapy as they were the ones to give all the equipment for us, we have a bath seat for him which adjusts how he sits but also I put my costume on and go in with him so if you have someone who can give and take her from you while getting in and out that will help, there's some exercises you can do to help development, I wish I could send pictures but iv just has surgery so can't get to the files, would you be up for a phone call anytime and I can chat to you about how Lucas has started and where's currently at and more about expectations and even local groups that could help

I also found an email from physio for him so I can send that to you as well