Tongue tie? Please help

[AmyandAlice]

Hi, my girl now 7months. Had trouble feeding since day 1. At under 2 weeks she was put on gaviscon. At 6 weeks we went to bottle feeding and prescribed Zantac. At 13 weeks admitted to hospital put on dairy free formula and put on omeprazole classed as failure to thrive. Now at 7 months she's still failire to thrive, had every formula going and still refuses all day long. Can take upto 2 hours for 2oz. Slipping off, clicking, dribbling. Tried every bottle, every size teat and 7 sippys. Some days are better than others. Been weaning for 2.5 months and now she refuses the spoon she just can't do it bless her. With finger food she grabs it bring it to her mouth but once it's in her mouth she struggles. It sits for a few minutes and then is spat out or half us spat out and half swallowed. It's very upsetting to see. I have noticed that she has an upper lip tie class 3 or 4. And I think she may have a tongue tie. We saw out doc who said tongue tie can't affect feeding, that's an old wives tale. I do think if it was a tie they would have spotted it but as my mother says, they have never looked in her mouth or done any test.
Any advice would be so greatly appreciated.
Thank you

[SuperStrength]

What a hard time you've had. Can you get a private referal for tongue tie?

[AmyandAlice]

Thank you so much for reply.
No not yet. We have an urgent apt with her ped tuesday. Also a speech therapist is calling me to arrange a visit to see her feed and look at her tongue. If no luck with either, then getting referral to local BMI. If its not a tie them we will find the cause. She's been let down do very badly by all health professionals. So hoping her ped will spot a tie or another cause. Or the speech therapist will xxx

[LindsayS79]

I could honestly have written your post myself. My 7 month old DD has been refusing her bottles since November. I told my HV that unless she refers me to see if it's tongue tie then I won't stop calling her every day. She's writing to a speech specialist next week...
It's so frustrating isn't it? One thing that helps us get more milk down her is distracting her while feeding her. I sit her in her bouncy or lie her down and wave toys above her head. It seems to take her mind off whatever is causing the discomfort. I even resort to showing her a cartoon on my phone at times.

[AmyandAlice]

And I could have written your reply! Yep daddy dances with with the toys and gets all the teddy bears out to help her feed, but the days are long when he's at work. Yes I put lullabies on my phone ( YouTube! ) and play them. I have thought if its a tie them why would distracting help? But if she's struggling (which she is) and if feeding is stressful for her ( which it is) then yes I guess it can help, shes doesnt fall asleep on the bottle her eyes are wide open and arms flapping and waving, she hates it. Frustrating? Oh god I've never known anything like it, always been a worrier but this makes me so sick. My dads even said its me! Though he soon changed his mind when I went to work for a day and my mother had baby, I had to leave work to feed her a couple of times. My dad says its not me and he's sorry bless him, my parents are besotted with baby she's the world to them and it upsets them so much and it's all about destroyed me. Has anybody done any tests on your girl? Have you found a lip tie? Have you seen her tongue tie? If my girl has one I can't even see it as I can't lift her tongue up ( maybe the tie's the reason) I prey this is the answer as nobody has done anything to find out what's wrong. And I'm scared if I can't find the problem nobody else will. Keep strong xx

[LindsayS79]

I did notice that she's got quite a bad upper lip tie this week. I have never seen her stick her tongue out, or up! I'm now convinced that it's tongue tie but ahe won't let me near her mouth to check.
I'm thinking that if they can't move their tongue around properly then it must end up aching. The only things I can get her to eat are super smooth fruit puree and soya yoghurt. Like you, finger foods are played with and spat back out. I get stressed too as I don't want a child with a negative association with food! Please let me know how you get on next week

[AmyandAlice]

Snap!! I only noticed her lip tie on Tuesday. Health visitor never heard of it so sent her some info, saw nurse who couldn't get in Alice mouth after a right hoohaa she finally got a dr but she refused to look saying done affect feeding, I guess you research like be and know that's rubbish! Yes next week is a big deal, I've seen Alice stick her tongue out bit only with her lips tight around it and it points down. Have you looked at the Catherine w henna website? Very useful. Oh yes I will let you know how Tuesday goes, BUT I have very little faith of it being diagnosed even if it is there that's why we really can't wait for speech therapist. Take care over the weekend and I will let you know how Tuesday goes.

[LindsayS79]

Thanks for that website. I'll have a look. I'm going to start researching going private as I'm not holding out much hope of getting anywhere.
Hope your weekend goes well too!

[AmyandAlice]

Sorry it's the Catherine w genna website. Also I have looked at my tongue compared to my partners and friends, appears I have a tongue tie!! Couldn't believe it

[AmyandAlice]

Oh sorry, on that note, I've contacted a couple of private clinics that deal with tongue and lip ties but the ones I spoke to said because she's 7 months she would need general anaesthetic so wouldn't be able to do it. Keep me posted if you find anything tho. Apparently there's specialists in Kingston and Huddersfield

[Boosiehs]

There's a doctor at Southampton and also a specialist clinic at the Royal Free hospital in London. DS had a posterior tongue tie which was seriously affecting his feeding. He was feeding poorly for about an hour, falling asleep as he had tired himself out bit was waking up about an hour later still hungry.

The tongue tie snip meant he was able to feed much better. Oh and could poke his tongue out fully. Definitely get it done, see a specialist lactation consultant if poss.

[AmyandAlice]

Thank you. So pleased your little one is doing better. I've contacted a specialist in Huddersfield and Yorkshire so will see what they say but hoping her ped will see it on Tuesday, so nervous.

[upyourninja]

Clicking, slipping off, failure to thrive - major indicators of tongue and lip tie. It's appalling to me that so many medicated options are prescribed before this simple thing is checked out. Major sympathy from me.

My DD had clicking, persistent night feeding, a heart shaped tongue, and colic, but nothing like as badly as you describe. However, after 12 months her weight gain stalled and she would put food in her mouth and chew but usually spit it out. I spotted her grade IV lip tie at 15 months and at 16 months she had it revised (she had a posterior TT too which we left, but I wish we'd had it done now).

Having taken nearly 5 months to put on the previous 1lb in weight, she put on 1lb in three weeks after the procedure- she filled out loads and no longer looked gaunt and pale. She coped a lot better with food.

We saw Dr Levinkind in London - no need for anaesthetic with a laser procedure. I think the Dr in Côte Royd in Huddersfield treats children under 12 months.

Good luck - do it and don't look back! And write to every HV, MW, GP and specialist who didn't check for ties to educate them

[AmyandAlice]

Thank you! Every reply means so much. My baby's struggling so much. I pray to god this is the cause that's no 1. But secondly I will be so so very angry that nobody mentioned or checked for this. My baba is the same with solids too. She is so very small and skinny when she was born she was a chubby baby I hate to look at the pictures and see how skinny she is in comparison. I'm hoping to hear back from the provider in Huddersfield, and also found one in Yorkshire so hoping to hear back tomorrow. So glad your lo is doing better. And thank you

[minipie]

We saw out doc who said tongue tie can't affect feeding, that's an old wives tale. I do think if it was a tie they would have spotted it but as my mother says, they have never looked in her mouth or done any test.

Oh this makes me so angry for you OP. This is such rubbish - tongue tie can and does affect feeding and it's impossible to diagnose it without looking in their mouth!

I can give you the name of a surgeon based in Kingston who will check and cut TTs privately for 80 (no referral needed, you just make the appt yourself) but sounds like that is a long way for you. Hope you get somewhere with the Huddersfield/Yorks people.

[mawbroon]

Sorry to hear you have struggled so much. Sadly I am not surprised to hear the bullshit that the HCPs have been telling you

DS1 was undiagnosed until age 5yo, we had a hell of a time.

If I were to do it all again, my recommendation would be to go to one of the dentists who lasers. John Roberts or Malcolm Levinkind. Expensive, but worth it. And worth travelling for too. We did a round trip of 400miles to Huddersfield after a surgeon here charged £££££££, put DS1 under GA and then didn't release the bloody thing properly Grrrrr

[AmyandAlice]

I've just spoken to the clinic in Huddersfield and they would treat her. I'm damn sure it's a tie.. I'm seeing what her ped says tomorrow if he's as stupid as my dr I'm calling back and she can go to Jon Roberts. I'm very scared, she's 7months. Did you go to John Roberts and was it ok? I'm worried as they said she will be awake but restrained. Everything I've read says at this age she need to have general anaesthetic. I'm scared for her :( if you've been to him can you reply and let me know how it went? And about the restraining? The money is nothing. If her ped agrees with me about her tie but can't do it within the week I'm taking her to Jon Roberts who said they can do it this week. Thank you

[minipie]

Mawbroon is best placed to answer but my understanding is that if a laser is used then it's usually local anaesthetic not GA.

[mawbroon]

John revised DS1, but he was 7yo at the time, so a whole different scenario.

GA is not a great idea for revision. When using laser, they do it millimetre by millimetre and they need the patient awake so they can assess the tongue movement as they go.

The team there were brilliant, and his lip and tongue were done in less than 5 minutes.

Ask to join the tongue tie groups on facebook and maybe ask people to share their experience of laser revision with similar aged child.

[upyourninja]

mawbroon gave me some very helpful advice when I was going through this with DD (under a different username). Hope her advice helps you too!

We saw Dr L but it's the same procedure. A cold laser is used to numb the area and then the laser cauterises as it goes, sealing the wound and preventing too much bleeding or infection. DD was swaddled (at 16 months) and she protested wildly at being restrained. Dr L doesn't allow parents in the room, probably because our panic would be more stressful for the child. DD was fine the moment she was unswaddled and she stopped whimpering as soon as I gave her a cuddle. She had some milk and asked for food as soon as we got back in the car, so within 30 mins or so. I am quite convinced that her (temporary) distress was everything to do with being restrained and very little to do with pain. She is absolutely fine in dentist chairs and medical settings afterwards.

One thing I would recommend is that you continue to do the post-op stretching exercises for longer even than the Dr recommends - we did the two weeks we were told but DD's tie has partially reattached (only at the top). Apparently her tie was particularly fibrous.

I am very seriously thinking about having my own tongue tie revised. I think it's linked to migraine, muscle tension, and general fatigue, in addition to childhood glue ear, bronchial infection, and a host of other stuff. There's no hard evidence on any of this but the anecdotal stories are enough to persuade me to try it.

[poocatcherchampion]

this is very interesting. I think Ive spotted upper lip tie in dd2 who is just over 6 months. not as bad though I dont think.

I hope you get your little one sorted op.

[AmyandAlice]

Thank you so much for the replies. I'm feeling a little better about it at the moment.
So stressed! Just hope her ped will agree with me tomorrow. We will see.
I'm sure if they managed with a 16 month old they will manage my very tiny 7 month old just worrying for us but I'm site she would be fine.
Thank you for sharing your stories

[mawbroon]

If it helps, ds1 was very angry about all the problems he had stemming from tongue tie and most of his anger was directed at me for not having had him revised when he was a baby.

I didn't take it personally of course, because I had never even heard of tongue tie when he was born, far less realise that he had one or that it could cause so many problems, affecting the whole body, not just the mouth.

[LindsayS79]

How did you get on today OP?

[AmyandAlice]

Been told she has a mild tie and referred to ear nose and throat specialist. And referred to Nottingham to have her put to sleep and camera down her throat :(. Before this is done ( probs a long time for referral) I'm going to have her seen by somebody else to check for a tie. Possibly in Huddersfield, I want to rule it out or confirm it before an endoscopy is carrie out.
How are you doing?

[mawbroon]

"Mild tie" might be how it looks, but appearance is irrelevant.

Function and symptoms are what matter and you are clearly having a lot of difficulties

John and the team in Huddersfield are great. If you want my advice, I would say go to them if you possibly can.