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??

Ps the speech problems my older son had were sorted via 6 months of SALT, luckily easier to get then though we did wait 9 months or so. He was seen 121 every week by a speech therapist who worked on exercising his muscles and teaching him exactly where to put his toungue for each sound. He was 5 though so older and did not have a language delay, only speech. Good luck.

Open mouthed posture, drooling, snoring...I'd want her to see ENT to have her adenoids/tonsils checked out.

Ever any trouble with swallowing? If she developed appropriate ability to cope with textures, without choking/spluttering worries, then that gives quite a lote of reassurance about the mouth/tongue movements.

Sounds as though she needs her adenoids out quick smart.

I was identical to your daughter, constant open mouth, high palat, snoring, unable to pronounce words and snored.

They whipped my adenoids out, added grommets and I was sorted.

Got a brace so nice straight teeth and dont lisp.

OP youe daughter needs a referral for ENT. I think its her adenoids and/or tonsils.

Google them, the cause no end of problems. Behavioural, sleep everything. Fucking nightmare.

I have to say that her speech development sounds like it is in the normal range. Many kids don't have all their speech sounds at 3, most of them start sorting themselves out when they start learning phonics at school. Recent research has shown that oromotor exercises have little effect. I think that an ENT referral would be a good idea to check adenoids/tonsils. It sounds like she might be a bit congested.

Being able to stick her tongue out is no indication of anything; tongue ties can only be felt by palpation (e.g., sticking a finger in a child's mouth and seeing how the tongue moves). That paed didn't know much about tongue tie I would hazard.

But... it might be nothing to do with that. I think tonsils and adenoids are sounding quite likely, or some sort of allergy. Is there any history of asthma, eczema, hayfever in your family?

The protruding tummy can be normal in small children because the spine curves that way. Did you have a particular reason for mentioning that? Is there any history of coeliac disease (or IBS) in your family?

I thought with tonsil/adenoids they had a lot of illness/infections? She doesn't really.

No reason for mentioning tummy other than its really sticky out, particularly after eating.

No allergies/asthma/hay fever in family

We've seen Dr Levenkind too (he also practices in Finchley if that is easier for you) and he cut my daughter's top tie and tongue tie when she was 6. She has an undeveloped lower jaw (breast fed til 2, just genetic unfortunately - OH has same issue). There is also a clinic in Purley that is the only clinic I found who aim to treat young children with a combination of mouth shields, braces and exercises. I would have treated my daughter there except it would have meant 2 days a month off school for regular adjustments, so we went to Malcolm Levenkind instead. It's called the clinic and the consultant is Michael Mew. Hope this helps. X

If you are in the NW I know a fantastic NHS orthodontist who oversees student orthodontists.(works with cancer patients for facial reconstructions) so my DD who sounds similar to yours was easy for him to deal with braces.

DD is now 15 has tongue tie unsnipped,mouth breather and weak lower jaw.
Buteko (spelling?)method for clearing nose,constant reminders to close mouth and chewing gum to build up jaw muscles.Were advised by one specialist to tape her mouth at night but just couldn't do it. Easier when they are older.
Pretty much resolved now.

Adenoids/tonsils if very large will cause all kinds of problems.

Infection is a whole different issue.

For example, large adenoids can stop you breathing through your nose. This can lead to low muscle tone in the jaw, high palet, and if untreated 'long face syndrome'. As far as I know people dont get infections in their adenoids.

Its all about their size.

Did you google it? Your daughter really does tick all the boxes.

Tonsils and adenoids in my sons case too. Your dd sounds very like him except he didnt drool so much as a toddler but his nose ran constantly and he couldnt blow his nose or sniff. His top lip war RAW constantly.
He couldnt breath and pronounce certain things at the same time. He was 4ish before they were dealt with and had now,at 21, the worst overbite Ive ever seen.Gone too far for a dentist to fix.

Definitely push for ENT.

Watch her sleeping and look for obstructive sleep apnoea. If she does this then video it, or at least video the snoring. It'll really help at the ENT review.

Good luck OP.

Tonsils and adenoids are relatively easy to have out privately as well - we considered it for our speech delayed mouth breathing snoring like a warthog constant ear infections DD1. We didn't in the end because at five (as promised by the GP) she suddenly stopped getting ear infections and mouth breathing. Her speech is also delayed due to a receptive language issue, so it's not been a magic cure, but she speaks very distinctly now when she does speak.

She's not an awful snorer but she does snore. She also grinds her teeth in the night.

I have been watching her carefully today and she never closes her mouth. She also tongue thrusts I think its called when she says some words, it comes right out of her mouth which makes them quite muffled.

We have decided to take her to the children's clinic on Harley Street. They seem to have all the specialists there including ENT, dentists, Malcolm Levinkind who is the expert on ties. Hopefully having everyone in one place will yield a diagnosis. We are in the Midlands so I shall just stay up there for a few days until she has seen everyone she needs to see.
I don't know what else we can do now.

There is something that may be able to help and will look at her whole lower face structure. Off to google to see if I can remember what it's called!

Orthotropics!!!!

Here is a link to one place www.lsfo.co.uk/

My eldest always had problems with her tonsils, mouth breathing etc. and it was finally "cured" by have jaw expansion to sort her underbite. ENT discharged her at 5 saying she'd grow into them - she never did.

Anyway I think these people would be worth a visit as they will look at the whole issue and see what is going on structurally - even if they can't fix everything I think they will be informative and tell you whats what if that makes sense?

Keep talking to people until it makes sense. So much of what you have described is like DD1. Early on we were fobbed off, told she would catch up on speech etc. It took us until she was approaching 8yrs old before we had all the answers for her.

It is not possible to tell you what is happening with your daughter, but in our case my daughter had speech issues due to verbal dyspraxia, she barely moves her lips even now (though speaks well enough considering after a lot of ongoing speech therapy) but she also has other issues that only became more apparent as issues as she got older - autism and auditory processing issues being the main thing, all eventually attributed to a genetic issue that was eventually picked up on testing.

My son had big adenoids and tonsils which caused sleep apnoea. He couldn't breathe through his nose at all and had dry lips and a rash around his month because he was open mouths all the time. He saw an ENT consultant and had his tonsils and adenoids out at 2.8 years.

Defo get your dd to ENT and tell them she mouth breaths and snore and has dry lips.

hope you get some answers and help soon.

My now 8 yr old dribbled until he was nearly 4. He was under SALT did all the exercises nothing helped. I didn't want him to go to nursery soaking his top. In the end I gave him chewing gum, not great but I sat with him while he was chewing. It worked for us, I started when he was 3.5 ish. At 4yrs he was diagnosed with ASD.

Sorry I didn't word that well I don't think everyone that dribbles has ASD I meant the ASD was the reason for his low tone.

Wow that orthotropics is so interesting, I have all the features you are concerned about with your daughter, I cannot breathe through my nose (I run out of air before my lungs have time to fill up) reading about orthotropics is a revelation!
I'm going to book an appt tomorrow for my daughter who has many of my traits but she's 8, and gorgeous unlike me! But she will need braces so this is great.
I say book an appt with them and see what they say

My son constantly breaths through his mouth, he also has a lip tie no tongue tie tho. His tongue is always hanging out not sticking out but hanging out. He can breath through his nose tho as he does when he's sleeping, I spoke to the dentist they said they won't snip his lip tie until he's older even tho he has a gap in front teeth, i also worried he will have an underbite i also seen the ent specialist as when he was a baby he had a cyst on his throat above his airways which was removed successfully and wondered if this was all connected? He's now 2, but the ent doctor said he can move his tongue about well so he doesn't think he has low muscle tone. I spoke to the health visitor about his speech as there was very little but he's improved loads over the last 2omths, so basically they have said the tongue hanging out is nothing to worry about and we will just see what happens it used to really worry me but I've seen and spoke to everyone I can now its just wait till he's older?? It's hard to tell a baby to close their mouth but maybe when he's older he will stop it?? I dunno

Just wanted to reassure you about the open mouth posture.
DS1 was like this, and his overjet aged 12 was 11mm, meaning he couldn't close his mouth because his teeth got in the way.
The functional brace he wore was nothing short of a miracle. Because it is designed to catch the prepubertal growth spurt, we had to wait till he was the correct age which meant having to be patient, but it corrects the problem within months, not years ,and acts to pull the mandible forward, so encouraging its growth. There has been no need to have any adult teeth removed, and he now looks great.

Have you looked at the condition called hidden cleft palate whereby the palates in the mouth haven't fused properly, it's harder to detect because externally the palate looks ok.

www.clapa.com/medical/article/328/

hello @CountryMummy1 i was wondering if you had any update on your child- I am concerned about my sons open mouth posture and unsure what to do.