Salt etc. Starlight's Baby DS. Please help.

[StarlightMcKenzie]

For those that know a bit about my story please help me not to get all shakey over this.

Baby DS has no ASD. Confident and certain in that. However, he does have articulation issues and lack of words. Yes, he is 17 months and I know this.

I also know he has posterior tongue tie (confirmed by LLL tongue-tie specialist but denied by GP and HV) and grade 4 upper lip tie (not denied but significance denied).

I have no idea what, if anything I need to be doing. I think probably I need to build a case for surgery. Possibly I need evidence from SALT.

Now I have called HV. NN phoned me back wanting to visit. I ask why she says to observe and give tips. I say no tips thanks, what next? She says wait until 2.5 development check. I said no thanks to waiting, what next? She said HV come to house to do missing 1 year developmental check. I said what for? She said because they like to do them.

So I asked how that would address issue and she said it would record my concerns but then wait and see until 2.5 developmental check. I asked why we'd have to wait and got the response that they like to do it just before preschool so they are where they need to be to learn.

I asked if she believed no learning could occur before preschool then?

We ended it with her giving up and telling me that a HV would call me tomorrow to book an appointment.

I am not happy with the challenging nature of my side of the phone call. I don't know how to stop it. I didn't attend the 1 year check because I hate their service for the way they have repeatedly let us down, even in baby Ds' early days, forgetting the whole thing with Ds.

There is no self-referral to SALT, though I'm not sure if that would be the right place anyway.

Any kicking into shape will be welcome as well as flowers. I finished the phone all in tears.

Gorgeous boy. I know what you mean about quiet house, I found with dd I was so absorbed in my own little world I hadn't spoken to her nearly as often as I did with ds. I think I was just pleased to have peace and quiet whenever he was out of the house so she got very little proper 1-1 conversation with me iyswim. Once I'd realised this I tried much harder to remember to chat.
Wrt to tongue tie we managed to stretch dd's to the point you can hardly notice it. She started life with a typical forked tongue but bf helped and then I read about giving her a spoon to poke around in her own mouth. She spent hours from then on with spoons and I would ( bad mother alert) give her a good old poke around with a spoon and toothbrush a lot. Some spoon poking from him might help the top lip one too.

Not helpful but just wanted to say he's gorgeous . I'm totally not an expert but he looked at you wonderfully

Going back a few pages now...

Yes, it was Mervyn Griffiths at Southampton that I was thinking of.
I've referred children to his private practise, and he also snipped my son's tongue tie (many years ago now) on the NHS (we were also out of area). His team are suberb.

I think 9to5 is right, btw, that if a child has considerable difficulties with speech, there will be something going on in addition to tongue tie. BUT... you kind of want to rule it out if you can, and if you're going to end up thinking about surgery at some point, it's sensible to do that before you address articulation/phonological difficulties with direct intervention. There's obviously the risk of anaesthesia to weigh up though.

Sounds like you are well and truly on the case.

Update: Saw Senior GP who took me very seriously. Said my concerns were all borderline but that a bunch of borderline concerns was justification for a referral to a Paediatrician who he'd rather coordinated assessments for efficiency and speed.

Issues together were:
Minor speech delay
Tongue and Lip tie
Hearing (and general ENT type stuff including checking palate)
Bowl issues, possibly from not being able to move food around mouth
History of breastfeeding problems
Sibling with ASD

He said that it would be justified to get it all checked out early so that any early intervention needed could begin sooner rather than later.

I was going to ask him where he'd heard that myth but didn't want to undermine his referral or be argumentative.

But overall good news and a relief and I am no longer worried now that I have been taken seriously. Now I know we're in the system I can sit back and safely think that really, he's probably fine.

Very glad to hear you are being taken seriously, what a relief!

I don't add anything yesterday as have been burying my own concerns about my DS2 and I identified a bit too well with what you were saying, (different issues though). However you prompted me to take the plunge and I've started the ball rolling, so thank you!

Glad that you have done it Star. Nothing better than MN to voice your concerns and spur you on to do something.

That's great news, Star. Now breathe!

Glad that your concerns have been listened to, Star.

Can I just hijack a little, reading your thread, I realised that no one has ever checked ds's palate, his tongue is the classic heart shape, but he has no problems pushing it out, due to the fact that he has macroglossia, so his tongue is always out! He also had a lip tie, but that tore when he fell over once. His palate looks high to me, but it is hard to know without comparing. I spoke to his SALT, prompted by this thread, but just wondered whether you would be able to see a sub mucous cleft palate, would I be able to tell?

By the way star, your boy is gorgeous!

Hazey you'd be under the Spires Cleft Centre they run out of the JR and Salisbury. I know that it takes an expert to see one. Might be worth contacting them. I can dig out the number for the Cleft Nurse at the JR for you. She's lovely.

oh well done Star.

Have just caught up - babystar is just lovely! He looks so grown up

good that you were listened to. I will summon up the courage to appraoch someone over the next week or so. I ahve a half decent hv, so will see if she is at clinic next week, as far easier to see her than go via the gp who already thinks I am neurotic...

Thanks. One of the videos I was going to show had a substantial amount of opening and closing doors on it. I thought I'd better not upload that one as everyone would really think I was in denial.

You can see too that I have not been able to get his hair cut, either professionally or by myself.

So I don't rule out some 'thing', but overall I'm not concerned about autism, at least not in its full dx criteria.

Good luck with getting baby blue checked out. I hope it is easy. I suppose it is also a bit confusing for you given he isn't a girl!?

Thankyou Sallybear.

so far, he is being more girl-like than the girls were

he is far more sociable than either were (dd1 couldn't cope with other people as she knew they wouldn't understand her, and didn't really understand them either; dd2 was fine at first glance, but would avoid other people/eye/contact/freeze and not talk etc to a shocking degree. ds giggles and goes a bit shy, but then seeks out contact/interaction).

he is more independent, but again in an interactive/seeking reinforcement way, so will happily play alone, but bring things over to show, or reference back to check I am still there etc - dd1 was oblivious, and dd2 was either chronically clingy or set on her own path.

he seems the most, erm, normal of the three. but then, what do I know? dd1 has severe ASD and learning difficulties, dd2 almost certainly on the spectrum (except most people won't listen to me), and ds has his moments too.

the most worrying thing so far is that earlier on he fell over and bumped his mouth, and bit his tongue. cue the usual shout and tears. I picked him up and within 2 minutes he was absolutely fine. his tongue was still bleeding a reasonable amount, but it was like he didn't notice at all. dd1 would have been wailing for ever because once she was in an emotional response then it took ages to calm down; dd2 would have been hysterical over the blood (whether it actually hurt or not). not sure what to do with ds' reaction!

"the most worrying thing so far is that earlier on he fell over and bumped his mouth, and bit his tongue. cue the usual shout and tears. I picked him up and within 2 minutes he was absolutely fine. his tongue was still bleeding a reasonable amount, but it was like he didn't notice at all. "

To be honest, at that age, I would say that's a text-book 'normal' reaction. Big wails, a bit of distraction and 'oh look...not such a big deal after all...a ball, cool.'

DD1 was the hardiest of toddlers. She would fall over (again) and no matter how much it hurt she'd jump up and say 'I fine! I ok'. She's the worry with more significant injuries, because her reaction is generally to be quite 'calm' and that's what tips us off that there's something wrong. We do the 'sofa test'. If she stays on the sofa more than 20 minutes, there's something wrong. For minor injuries, she's hysterical - a simple scratch will drive her wild.

DD2 is hysterical with everything. No amount of reason will calm her. She's convinced she's going to bleed to death with even a scratch.

DD3 is quite hysterical and gets angry with the perpetrator (animate or inanimate ) but can be calmed after a time.

Hiya star. Late to the thread: my head is very firmly, but sadly ineffectively, in the sand over our dc3 currently. So anything I say, take with a large cellar of salt, as I don't want to transfer my anxieties to you, when you're already worried abt your dc3 (I'm having similar issues with lougle's threads re dd2...)

Glad the GP is taking you seriously. I'm also mega-impressed with working's post: would make a beautiful curriculum for actively teaching toddler articulation. The suggestion about singing /signing is probably going to be helpful: if a dc can't get the sounds out, but 'knows' what they are 'trying' to say, then the problem is as much yours (not able to understand their speech) as theirs (not able to pronounce it well).

The danger is of them losing the drive to keep trying: "That stupid mummy doesn't understand a word I say to her". So giving a dc the skill of adding in a tune or a sign as an extra clue for the parent is logical.

any early intervention needed could begin sooner rather than later

In all fairness, articulation is one of the few things that tend to be relatively well provided for: it's not mega-easy to get a decent block of direct SLT intervention for it, but it's often not that difficult either. ASD is by far the poorest of the poor-relations in terms of therapies provision.

new DEFINATELY not wanting to play down your concerns but I think the reaction to bump is fairly typical. Babies live from moment to moment and tend not to dwell on things and are fairly resilient to bumps etc.

Dd had her tonsils and adenoids out when she was 3 and I was gutted signing the consent form realising for the first time the level of pain I was signing her up for for the next fortnight. However I only used the prescription codeine twice at night and calpol just a handful of times more I think for my benefit. At that age, distraction and keeping them busy seems to be a very effective pain reliever.

Anyway, why don't we finally meet up and see if our babies talk to each other?

Sorry Maria that you've got concerns too. Hope you figure out a palatable way forward.

Agree working's post was very helpful. It was also possibly one of her shortest

I've started self-funded comprehensive early intervention already: bought an ikea stuffed carrot for bedtime

LOL

I'd love to do a RCT involving that, up against the usual guff!

What would the design look like?

And am doing a sympathetic headtilt while cooing ineffectually at the slightly concerned playgroup staff.

Am enjoying recycling the helpful suggestions 'Have you tried clear boundaries? Or sticker charts? He has very good eye contact you know. They all get there in his own time"

You should put one of those recorded messages up it's bum so that every time you squeeze it is says 'would you like to go on a parenting course?'.

Wouldn't be hard. Difficult to blind for treatment allocation though Unless we used the mini-version.

We could dish out the carrots to waiting list 'controls' along with a specially printed MNSN goose postcard