Tongue Tie Experts - I need your advice again!

[tacal]

Hello

Some of you have given me great advice about tongue ties a couple of times already. I am really grateful for all the advice you have given me so far. The professionals I have spoken to think ds's tongue tie is not the problem and his eating problems are Autism related. I have posted the following in the special needs section and would be grateful to hear your thoughts on this.

My ds (4) who has a dx of Autism has always had a difficult relationship with food. Breastfeeding did not go well. He managed bottle feeding ok but was often sick afterwards and would cry. Moving onto solids was a nightmare for me. The constant gagging and me thinking he was going to choke was awful. I will never forget how scared I felt when trying to feed him. Even now he can gag on certain textures and be sick. I still watch him closely when he is eating apples and carrots (things that are not soft foods).

His diet is very restricted. He eats the same things every day and will not accept new foods. He likes his food to be cut up quite small. He eats fast and does not chew things very well. When he tried eating chewy haribo type sweets he swallowed them whole.

He freaks out when anyone offers him crisps, he cries and is angry. He refuses to be around crisps.

Does all this sound like eating problems caused by sensory issues and/or because he has autism?

DS also has a tongue tie and many of these problems can be caused by having a tongue tie. The doctors/speech and language therapists who have seen ds are saying that his tongue tie will not be causing these problems.

I really dont know whether to push for the tongue tie to be cut or accept his eating problems are not caused by the tongue tie.

I would be grateful to hear other peoples thoughts on this. I want to do what is best for DS and cannot make up my mind about the tongue tie.

What if I put him through the tongue tie operation and it made things worse? Maybe it would be difficult for him to accept the change to his tongue.

Any thoughts on this would be very much appreciated. Thank you

My DS had tt and upper lip tie as you probably know. His diet was definitely restricted. At 4 he would only really eat chocolate, ready brek and cheese sandwiches. He has improved over time but it never occurred to me that it was a sensory issue.

Personally I'd push for it to be divided as it can cause problems later on too but really you need mawbroon

My daughter had a tongue tie op Easter this year aged 2.5. She breastfed ok (though was colicy) and it was only when she started hard foods th problem became apparent. She couldn't move them around her mouth easily so would either spit them out or swallow food whole.

Operation was under general anaesthetic so stressful for us but she coped marvellously. Her speech was a bit off for a few days, a bit sloppy, but she soon got the hang of it. Then after op we just encouraged her to move her tongue with games (eg lightning McQueen wins a race by sticking his tongue out).

Long story short I would say go for the op. Though dds eating problems were subtle and it wasn't affecting her speech we still saw a noticeable improvement afterwards and op itself was quick and dd had no complaints of discomfort afterwards (besides a sore toe! They put the iv line in her foot when she was in the op).

Good luck with your decision

Thank you for your reply JiltedJohns. I am positive my ds's diet is restricted because of his sensory issues. He hates the texture of things he is not familiar with and I think the issue with crisps maybe that he hates the feel of them in his mouth. He also has a very sensitive gag reflex so it does make sense that some of the issues are not tongue tie related.

But the problems he has chewing could be because of the tongue tie. I am waiting on an eating and drinking specialist to contact me about ds's tongue tie. So I need to be clear in my mind if I should push for it to be divided.

Thank you for your advice and it is good to hear your ds's diet is improving

DS1 is NT and although his problems were not identical to your DS's, there is a striking similarity.

I realised he was tied when he was 5yo. He was having gastric problems and I was poo pooed by the docs who said it wasn't related to his tongue tie as it "didn't look that bad". It is bugger all to do with how the tie looks, it's all about the function.

I went private to have his done when he was 6.3yo. The first revision was done under GA (I didn't know any better ) and despite paying £££££ to an "expert" paed surgeon, he didn't revise DS's posterior tie properly.

Later that year, DS1 was almost 7yo by this time, we had it lasered by John Roberts at the Cote Royd Dental Practice in Huddersfield.

Unfortunately, the last I heard, John was only doing under 1s and over 6s, but Malcolm Levinkind in East Finchley is doing all ages if deemed necessary. Both these guys are dentists and were trained by leading expert Dr Kotlow.

It might be an idea to email Dr Levinkind, perhaps with some pictures (look under his upper lip too) and take it from there.

I don't know exactly how much he charges, but I think it is around the £400 mark, all in.

Revision made a massive difference to ds1 (he's 8yo now, so it's been just over a year) and he is responding well to the early orthodontic treatment which he is having to try and minimise the structural issues that the ties have caused (high narrow palate, restricting nostrils and eustacean tubes and underdevelopment in the mid face - not that you would notice unless you knew what you were looking for).

So, in short, I wouldn't be wasting energy pushing the NHS, I would suggest that you go straight to an expert.

thank you milkjetmum. It is good to hear your positive experience of the tongue tie op. It sounds like it was very successful for your dd. I think it is the general anaesthetic that is putting me off.

Sorry, meant to add that neither of these dentists use GA. A wee bit local anaesthetic is all they use. The patient needs to be awake so that they can assess the tongue function as they go. It is done millimetre by millimetre rather than with one big snip.

DS1 was eating his tea about half an hour after the procedure.

Thank you for your reply Mawbroon. I tried to go private but they gave me the same advice as NHS. Probably because it was the same Consultant! I couldnt believe that I was there to pay for them to do this operation and they wouldnt do it. I just dont understand. I think it must be because DS has the autism dx. I have had a few replies on the special needs board saying that these types of eating problems can be caused by sensory issues.

I am in Scotland, so will try to find out who is the best person to go to for advice on tongue ties.

Thank you for all your advice.

Thanks Mawbroon for letting me know there is an alternative to GA. I will have to look into it all and make a decision.

Tacal, I am in Scotland too. It was worth the 400mile round trip to Huddersfield to get DS1 revised. If he had been your DS's age, we would have made the trip to London. A good frenectomy is worth travelling for.

Most doctors and dentists do not understand about tongue tie.

You need an expert.

Has anyone mentioned the tongue tie babies support group on Facebook? ASk to join, you will find loads of experience and knowledge on there.

Lots of tied kids also have some sensory issues, I know DS1 did. Not just about food, but with clothes and wet and dirt for eg.

There is speculation that in some tied people, the vagus nerve is not correctly stimulated during swallowing, which can cause all sorts of issues. There is no conclusive evidence for this, I think it is a fairly new idea, but it certainly makes sense to me.

Thanks again Mawbroon. I will join the facebook group. I have family in London so would be easy for me to go there.

Very interesting about the sensory issues. I am going to take your advice and email Dr Levinkind. You are right, I need to speak to an expert!

My ds will be 5 soon, so it has been 5 years of feeding and eating problems. Now he is at school it feels worse because he is expected to eat at school parties, birthday parties etc and I am so worried because I wont always be there to help him and keep an eye on him.

I really appreciate your advice x

You're welcome.

Funny you mention Haribos. DS1 could chew them, but he swallowed down so much air when he ate them that he did the biggest, loudest burps I have ever heard afterwards! He was the same as you describe your DS, not chewing any of his food properly and swallowing it before it was properly chewed.

When he was having gastric problems, I basically let him eat what he wanted, so it was all yogurts, custard, sandwiches etc. He was so limited. He eats a much wider range of foods now, though I have to remind myself of this when he complains about not liking his dinner!

My Ds had his tongue tie cut at 12 days but he still had lots of problems with gagging and food getting stuck in his windpipe until he was about 2, I have always just assumed this was normal but now I am worrying he may have other parts of his tongue tied, as his speech is quite unclear at 3.9

Perfectly possible BigFingers.

It is possible to have an anterior tie, (towards the front of the tongue, often quite obvious) as well as a posterior. If the person doing the revision is not knowledgeable about posterior ties, they may well revise an anterior tie and leave a posterior one undiagnosed and untreated.

As I said earlier, not all docs and dentists understand about tongue tie, you need an expert.

A lip tie can sometimes hinder speech too, worth checking under the upper lip and see what's there.

I will be having a good look at him in the morning! No one has ever mentioned to me any other parts of his tongue that may be tied, even though I have seen a SLC with him for his pronunciation issues and I told her he was tongue tied at birth. What am I looking for with a posterior tie? Sorry to ask this on your thread, OP, hope you don't mind

*SLT

there's no sound on the video btw. Might not be quite so easy on an older one though!

One thing I noticed after ds1's posterior tie was revised was that I could no longer see his tonsils when he opened his mouth. Before revision, I could see them in their entiretly! I always thought they were massive, but I think it was just that I could see them very well!

mawbroon thank you for that, only just had chance to watch it an hour or so ago, and since I didn't understand it, I have now spent the last hour trying to work out what the difference is between anterior and posterior tongue tie, since they both seem to involve the frenulum from what I can work out.

My DS had a Class 1 anterior tongue tie which was snipped at 12 days. So his frenulum was cut to give his tongue a greater range of movement, is what I understood to have happened. But looking at the information about PTTs, have I understood it correctly? :

That a PTT is still related to the frenulum, but is about the thickness and tightness of the frenulum and how closely it holds the tongue to the base of the mouth?

I read on one site that the tongue of someone with PTT would appear rounded or squared when 'stuck out' - without getting DS out of bed to have a look, I am fairly sure his is quite round, whereas mine and DH's would be relatively pointy.

His pronunciation issues are now primarily around 'g' and 'c' noises which are formed by pushing the tongue up at the rear, which he clearly struggles to do. Sorry to be mining you for so much information!! Thank you for anything you can tell me

mawbroon, I just watched the video and will try to check my ds for posterior tongue tie - if he will let me!

bigfingers, I am happy that you are asking on this thread. The more I learn about tongue ties the more I can help my ds. My ds's speech has got much better over the last year. He will be 5 soon.

I found this which is a video of a PTT being 'fixed', which makes me think actually it's not the frenulum but something to do with the muscles under the tongue, so I am still unclear! I will just ask DS to stick his tongue out in the morning and see how far it comes out?!!?

Posterior tongue tie (PTT) is where the frenulum is short or tight and restricts the back of the tongue.

The frenulum can be buried in the tissue at the base of the tongue, so not visible unless you do the manoeuver in Dr Kotlow's video. This is why it is so hard to diagnose. Many HCPs would take a look and see no frenulum, therefore (incorrectly) declare no tongue tie.

What you have read about the tongue being rounded or whatever is not definitive( and neither is sticking it out!!) DS1's tongue looked normal, he could stick it out really far and had great lift at the front but was quite severely tied at the back (posterior). All ties are different and as I mentioned downthread, it's more about function and symptoms than appearance.

I want to mention the tongue tie babies support group on facebook again. There are loads of people who post photos on there for opinions. Obviously not a diagnosis, but worth hearing from people who are experienced.

tacal glad to hear about your DS's speech improvement. Wrt your original post, I don't have any real confidence in my ability to comment on it, but I have a psych degree, and would say my own experiences with three children are possibly relevant, so here's my non-professional comment on it FWIW.

I would guess that his eating issues were probably related to his tongue tie in the first place - my DS also was very nerve-wracking to wean on to solids, and every meal time involved me having to stop him choking. My other two children never had this problem. I never made a big deal out of it, and he has no 'abnormal' issues with food (all children are quite picky about what they will eat ime), though very occasionally he will still gag.

I would guess that those initial problems have been overtaken/exacerbated by his autism, and maybe he has learned to associate certain foods as being a problem and has an extreme reaction. The reaction itself is much more likely to be related to his autism than his tongue tie, as is his decision to reject lots of types of food. From what I understand/remember, rituals like always wanting things the same (cut up small, same foods) are a classic symptom of autism.

I have no idea whether an autistic child would find it harder to undergo the TT release, and I would guess that since each child has their own idiosyncratic responses, you are best placed to judge what his reaction would be. I would have thought he would forget about the physiological change relatively quickly, but maybe the emotional aspect would have longer lasting effects.

HTH, good luck whatever you decide

BTW, I've seen that video before. It is amazing the difference the release makes!

thanks for all the info, mawbroon. So in your opinion would someone who knew what they were looking for only be able to diagnose a PTT or could I work it out?

You could work it out, I did, but I was never 100% sure until an expert confirmed it.