Anyone with a child with velopharangeal dysfunction?

[Belleende]

I have a five year old daughter, her speech is very nasal. She cannot say s, all the air escapes out of her mouth. She has been working with a SALT in school but there has been no improvement, if anything her speech is getting worse.

For unknown reasons she has been discharged SALT services during lock down. The school are trying to get her back on the books.

I have long suspected there is an anatomical reason for her speech difficulties, and yesterday did some research and came across VPD. She fits the bill completely.

I am now wondering why the SALT didn't consider this as a possibility (have e mailed the school) and what to do next to get the ball rolling on having the relevant diagnostic tests. Anyone have any experience of this?

Im a children SALT (but don't specialise in palate disorders) I think if you suspect an anatomical problem you need to get a referral to ENT and/or a specialist speech and language therapist who works in the field of cleft/palate disorders so further investigation can take place. If your local SALT department is unable to help with this, I would contact your gp.

Thanks flamingoshoes really helpful. I am wondering why this hasn't been thought of by the SALT already. I flagged when she entered the service that I suspected there was an anatomical cause. She had repeat ear infections and ee went down the route of getting her hearing tested which came back clear (took ages due to covid). I am just struggling to know what to expect of the school SALT and wondering why this has never been suggested.

I will get a GP appointment for the new year. I am getting hints that she is being teased in school for her speech.

Hi @Belleende

My son has velopharyngeal insufficiency so I recognised the term. We were lucky because a SLT picked up that there may be an issue and referred us to a specialist SLT at the dental hospital in our city who arranged for an X-ray by the cleft team, and a referral to genetics as well due to other concerns (it turns out our son has a chromosome deletion).

As @flamingoshoes says, ask for a referral to a specialist SLT - I'm not sure how you'd go about this but ours is attached to dental hospital and cleft team at the children's hospital.

Our son was discharged from SLT in February as they thought he would have an operation but we saw specialist who said it's not currently needed, then lockdown happened. He's back on the waiting list for SLT as he really needs it but they're not seeing anyone face to face. Feel like I should really chase it up.

I hope you see someone soon.

Many thanks @roughtyping. I hope your son is doing well. I had read that chromosomal issues could be the cause of VPD, can I ask does your son have any other issues. Just trying to see if there are any dots to join

Can your child make any non nasal sounds? What about b, p, d, t, g, k? If she can make these plosive sounds which require higher air pressure, she will have sufficient closure and need to practise s through therapy, as it is 'behavioural' rather than anatomical. If not, she may need further investigation.

Hi @Belleende

His other issues are very mild compared to many who have his condition (he has 22q deletion syndrome). He has asymmetric ears (one is cup shaped with an over folded helix) and has always been slower with milestones, when he was a baby and now (he's 5) with social interactions. He never fed well, he couldn't breastfeed and brought milk back up constantly - was diagnosed with reflux but I think now it was possibly due to his structural differences. He has some problems with attention and understanding of language. His sleep has always been terrible, even now still up multiple times a night 💤 . He has some very specific things going on with his eyes but they don't affect his eyesight, and he has very narrow ear canals which is very common but don't cause his a problem. So all quite mild and difficult to put together if that makes sense.

There are many issues associated with his condition and we feel very lucky he's missed the big ones. Common problems are heart problems (a huge variety of them) and immune deficiency. Most kids have a handful of symptoms of the syndrome, there's something like 180 possible symptoms.

Thanks @roughtyping, that is quite a collection of symptoms. I am guessing that having a diagnosis of a chromosome disorder is scary, but maybe a relief to have an explanation? So glad you aren't dealing with the scarier stuff.

@BendingSpoons she can make some of those plosive sounds, t and p are definitely not an issue. But b and d can be indistinct. F and z also problematic. She has never been able to say ssssss. Not even close.

Plosive sounds like t and p require higher air pressure than s. If she can make them, then her palate has a ability to close fully. Which means that when it doesn't, she needs to relearn how to say the sounds. She will need therapy rather than surgery. I would still discuss getting a second opinion from a specialist SLT, but I don't think you will need a referral to ENT as you shouldn't need to go down the surgery route. It does sound like lots of her sounds are affected, which must be hard for her and she shouldn't have been discharged!

Also, interestingly b and d are the voiced sounds (voicebox vibrating). I'm not sure exactly why they are harder, but I would wonder if in the past she has incorrectly heard the voicing and tried to 'replicate' it with nasal emission. Although this doesn't apply to s and f, but hey have a different fricative resonance.

@BendingSpoons that's all really interesting. My son can say b and p independently but they sound the same when they're in words. T, d, g and c all sound the same. He is able to distinguish them (knows the letters to see them, sounds out words and can tell you what they mean etc) so it must be very frustrating!

I think I am not very good at isolating what sounds she can and can't make, I will have to have a harder listen!

Once again mumsnet helps me out. Thanks all really appreciated.