Toddler with severe open mouthed posture - I have been fobbed off for 2 years!

[CountryMummy1]

I knew there was something wrong with my daughter when she was 9 months old. Her drooling was like nothing I had ever seen before and we got through at least 10 bibs a day. I saw HVs, doctors etc and everyone dismissed it as teething which I knew it wasn't.

I have done years of research and i know that DD has low muscle tone of the mouth and a lip tie. After being given the run around I researched exercises online such as blowing through straws and within a month the drooling had stopped.

However, she still has a very distinctive mouth (think Angelina Jolie on fillers!). Very high arched short top lip and thick bottom lip. Beautiful yes but absolutely useless it turns out for talkimg. I managed to self refer her (a huge amount of badgering) into SALT at almost 2 as she did not say a word. She spent about 10 months being so frustrated at not being able to speak that I could cry thinking about it. The SALT has been pretty useless to be honest, basically everything I was doing already. Said oral motor exercises were a waste of time, just lots of repetiton, talking time etc. Which we do. We see them every 6 months but they don't do any focused therapy until 3.5 years - fair enough.

I managed to get a referral to an oral-facial surgeon. He basically dismissed my worries but told me she also had a double lip(whatever the hell that is - thanks for another worry) and that she'd talk in her own time.

She is talking now at 3 but about 50% is unintelligible. She can't say some sounds and is possibly developing a lisp.

She has always had a permanent open mouthed posture. She never shuts it. Her lips are always chapped as she is always licking them as they are dry. She mouth breathes and snores. Reading about this on American sites has really upset me. It causes so much damage, to the face and the teeth. She already has a distinctive overbite coming on.

We are not wealthy but could afford to take her to see someone privately if they would help. I have also seriously contemplated taking her the America to get seen.

This is the information that has upset me so much.

www.fasttraxortho.com/when_to_begin_treatment.htm

What should I do next??

I'm sorry you are going through what sounds like he'll
I have no advice except keep fighting and I hope you find the help you need.

Have you sought advice from a dentist?

Has your speech therapist ever mentioned developmental verbal dyspraxia or oral dyspraxia? Could you afford a private SALT?

Sorry you're going through this.

I don't know much about this condition but be careful of American websites. Things over there are hugely over-medicalised because of the insurance system, and things that are "treatable" there are just part of the normal spectrum here.

Obviously, that might not be the case here, but if all the medical professionals you've seen have said its nothing to worry about, I would be treading with caution.

Good luck with it all, I hope your daughter gets the help she needs xx

Dentist just says yep she has an overbite and a liptie which is causing a gap between her front teeth but we'll correct that with braces/veneers. Poor little sod, I remember my years of braces hell

Yes Creampie you are quite right so I really don't know if I am worrying needlessly. They are very snip happy in the US and will snip lip and tongue tied at birth. They are fairly relevant to here. Which is the right approach, I have no idea.

I have researched the oral dyspraxia but, to be honest, with the whole mouth thing and the drooling I am fairly convinced it's low tone.

Has her nose been looked at? I wonder if she can't breathe through her nose, hence 'using' her mouth so much. Adenoidectomies can improve speech issues.

Harley Street might be worth a go. I have heard about a Dr Levinkind who specialises in lip ties

No she hadn't seen an ENT, the one we saw was an oromaxi surgeon (or something like that). We definitely try to get an ENT referral.

Sounds like her mouth is open so much as she can't breathe through her nose, so I'd look at ENT first... Your GP should be able to refer you.

I don't know anything about conditions where open-mouthed posture is a symptom I'm afraid, however, I do know about having lip-tie snipped.
I had mine corrected (about age 10 I think) and my gap closed naturally afterwards (over a period of 10 years or so). I used to be able to get a pound coin in between, now I can only fit paper, it's so closed.

Medoc, my husband had his liptie done when he was 10ish. Seems they don't fix them anymore

Well I am sure you are right - parents usually are when they think something is awry IMHO, providing there's no history of health anxiety etc.

Unfortunately speech therapy and SALT seems to focus on the rising school age group; the HV told me as much - my son was referred when he was 2 1/2 and wasn't actually seen until just recently at age 4.

Has stuff like: tongue tie (anterior and posterior); enlarged adenoids and tonsils; any more generalised neuromuscular conditions/ impairments been ruled out?

The reason I ask is because DS had both generalised hypotonia and also a tongue tie when he was very young and I have never ever seen a child dribble as much as he did. He would literally soak through his clothes in 15 minutes. Now at 4 he is much better although still has problems pronouncing some sounds and consonant clusters. I hear you about the frustration at not being able to speak coherently because DS was also like that and got very angry as a result.

You really shouldn't need to take her to the US to get seen, that's a bit extreme, and in any case I'd have some reservations about that. Orthodontists over there are completely enmeshed in a for-profit culture and it is in their interest to recruit more patients. I don't mean to minimise the issue at all, but it is as well to be aware of different cultural contexts.

If you are not happy with the NHS opinions you've been given so far, then perhaps the British Dental Association could recommend someone with a particular interest in this area? You might have to pay but if you can afford it it might be worth it.

x post with lots of other posters ...

Sorry, me again, posting in dribs and drabs.

I believe significant lip ties are also usually associated with tongue tie. I would be suspicious that this was at play here, as it can cause massive dribbling problems and abnormal tongue thrust etc.

Has your daughter had a hearing test? It sounds to me if your daughter might need her adenoids removed. Glue is often made worse by enlarged adenoids.

She has seen a paediatrician who got her to stick her tongue out then said no lip tie. I don't think she has one but can't be sure. She had a general check up and seemed fine. I think she's fine too. She seems ok physically and doesn't seem to have low tone anywhere else although she does have a very protruding tum which they said was weak tummy muscles and common at this age.

Her tonsils, adenoids have never been checked I don't think. Do they just look down her throat for that? If so, then they might have been.

She's had 2 hearing tests. One at almost 2 which was borderline as she was messing about. One at 2.5 was fine. She doesnt appear to have trouble hearing.

It just makes me so angry sometimes. Do you know what the oral facial surgeon's advice was?? Send her to nursesy, she'll have to talk then!! Great advice there! Like she's just choosing to have speech difficulties

What is he receptive speech like? Does she understand what you say? Is you child in nursery? If so, what do they think?

I suggest you ask for a referral to a community paediatrian. They might have ideas that might help.

My son (3) has just has his tonsils and adenoids removed for obstructive sleep apnoea. He drooled hideously, mouth breathed and snored like he had drunk 6 pints. He had no ear or hearing problems.

Following the op, his speech is much clearer - though he has no speech delay as such before (my older son did due to poor muscle development in mouth and toungue)

I would push for ENT referral too x.

Oh, they don't correct them now? I'm sorry. Seems weird if it's causing a problem, after all they correct tongue-tie.

wow- your oral surgeon sounds like a jerk! Of course, children love not being understood. It's sounds extremely frustrating for you.

Try and get added to the "infant tongue tie UK Ireland Europe" group on Facebook. Perhaps post a photo and ask for advice on their. Lots on their have been to Dr levinkind for tongue and lip ties. Did you breastfeed her, or have any problems bottle feeding (just thinking about the not being able to breathe through nose thing and also breastfeeding issues are often tongue for related). No other advice but an ENT referral sounds like the way to go.