Dysphagia

[Riversiderunner]

Our DD (11) has been diagnosed with this. She was born with a cleft palate, and has always had poor muscle control around the mouth, swallowing issues etc, but somehow this has only been diagnosed now.

We've been told she's at risk of potentially fatal choking. Scary.

Can anyone advise on anything to do with this? Does your child have it? How do you manage? Any good docs (we're in London)? How do you manage?

I'd love to hear from anyone with any experience or insight as this has slightly rattled us.

Thanks

I am aware of it though I don't have any personal experience, although I know it's serious and can be scary, so hopefully someone useful will come along.

The SN boards aren't always very busy so do give your thread a bump if you don't get any replies.

I don't have a specific recommendation, but it sounds as though a paediatric speech and language therapist who is trained and experienced in working with dysphagia (not all are) is what you need.

If you are looking for somebody independent you can look on the ASLTIP (association of SLTs in Independent Practise) website here:
www.helpwithtalking.com
There is a search function to find people with relevant experience in your area.

Or you could go back to your GP and ask for an NHS referral.

Very best of luck. I know it's a scary diagnosis, but generally very manageable if you have good advice. (I am also an SLT).

Thank you both, v helpful - and reassuring, thanks SingySongy!

You definitely need a aped speech and language therapists. I know a great one specialising in this area if you are in the north west!