To think a tongue tie is the cause?

[halloumi1]

Hi,

Lots of people here were very helpful in pushing me to go to A&E a few weeks ago for what they thought was a pulmonary embolism which turned out to be right, so hoping I can gain some experiences on another matter as somewhere with traffic.

Baby I mentioned in the post is now 4 weeks old, will be 5 this week. For over a week now, she’s been having awful, screamy crying episodes which can last hours. She will occasionally stop and it seems like she’s settling but quickly starts again.
Nothing consoles her and tending to each possible need doesn’t help either. Moving positions, white noise, cuddling - nothing. She writhes about, doesn’t give a lot of wind and seems overly uncomfortable.
We thought it might be colic which the HV agreed with so advised trying Infacol. We did but it has seemed to do nothing at all so stopped and things aren’t any worse. I’ve messaged the HV this update but no reply yet.

Recent pattern seems to be, she’s fine on a night, will take her bottles and sleep. I’m not sure if this is just because she’s so tired. A lot of the time, she will also take her first morning feed then fall asleep but any other daytime feeds after that, all hell breaks loose. However, the other night she was awake from 8.30pm until near midnight and has had other evening episodes too.

The other day she was awake from around 10.30am until 4pm when DH came back and could get her in the car. Today she woke up at 09.30am and has only just settled asleep (12.40pm). She started wanting feeding less than 2 hours after her last feed so I fed her and she drank a full 4oz but then the crying started again.
She can’t stand being laid on me which she used to love but just makes her furiously scream now and only semi settles when you stand up to constantly rock her and keep moving her about which is difficult when you’re trying to recover and keep stress low! She will barely take a dummy - usually refuses it/spits it out or just seems to get angrier. She also makes really loud slurpy noises with it.
She may sleep sometimes in the pram but the second it stops, she wakes up. She turned herself nigh on purple the other day so I had to get her out and carry her screaming from a shop. I feel trapped as I’m scared to take her out and can’t have visitors as it’s impossible to speak over her crying.

I’ve honed in on her feeding as this seems to trigger episodes and it made me wonder about a tongue tie as I read that can cause colic symptoms but a lot of them say it’s breast feeding symptoms and she’s bottle. When she feeds she often has to pause and sounds out of breath, she might cough, she spills a lot, she makes a tongue clicking noise as if the suction has gone really frequently, she gets to a point where she starts wriggling and seeming uncomfy and she will often get hiccups after feeding which makes her more cross. I looked at her tongue today when crying and it seems to stay quite flat but the edges curl up.
Does this sound like a tongue tie to anyone and if so, how do I get her assessed to see if it is? Will the HV help?

It’s heartbreaking seeing her like this and feeling at a loss as to what to do. I feel like a horrendous parent and I’m starting to dread every day. I know babies are hard as I have a 3 year old but never experienced anything like this and my gut is telling me something is wrong. In my irrational moments in the thick of it, I convince myself she hates me and we haven’t bonded which makes me feel worse.

You can ask your HV if there's a tongue tie clinic in your area. The nurse (?) will assess it and if there is a tongue tie you'll be referred to a consultant who will do the tongue tie division at the hospital. The procedure itself takes less than a minute.

Both my babies had tongue tie and I may be remembering it wrongly, but I think it's supposed to be an issue only if you're breastfeeding. When bottle feeding the milk will flow out by itself anyway so the tongue tie isn't an issue.

I'm sorry you're having such a hard time and hope it gets better soon. My first baby was an angry crier the first 2/3 months of her life... we never could pinpoint the reason but she did grow out of it eventually.

DD has both tongue and lip tie. The tongue was cut, but the lip continued to create issues such as those you describe. Because of her tip lie she couldnt' position her lip to get a good seal.

It's funny, I can so clearly see it on babies now, I've unofficially diagnosed several babies with lip and tongue ties just by watching them latch on and not once been wrong, as they've all been exactlythe same as her. When DD was a baby the NHS didn't "recognise" a lip tie though, so they wouldn't do anything about it. It was very frustrating and I hope things are different now. Eventually it snapped itself which does tend to happen, although now (9) she has a large gap between her front teeth which, again, it common for children with lip ties.

anyway, if your baby is bottle fed I think you can get bottles that are better for this, those that release slower. Otherwise lots of winding to help her get rid of all that air she swallows. It does get better with age though, as they get stronger and have a better developed digestive system.

This sounds really hard OP, I hope you've got good support.

Breastfed babies are more affected by tongue tie, but that doesn't mean bottle fed babies can't be. My 13 week old had tongue tie and we ended up seeing someone privately as the waiting lists were long.

Definitely worth seeing your GP, there's some things you say that make me think of reflux?

Listen to your gut, if you feel somethings not right, keep pushing.

You've probably tried all of these things but just in case I've linked a purple crying leaflet below www.hey.nhs.uk/patient-leaflet/prolonged-purple-crying-in-babies-information-for-parents-and-carers/

It sounds like when DD had tongue tie. She was breastfed then topped up with bottles. Breastfeeding was like razor blades and she clicked really bad on bottles due to loss of suction.
She had a posterior tongue tie that was missed numerous times and finally diagnosed at 3weeks and cut on the nhs at 5 weeks. She used to scream for hours on an evening before it was cut. I used to put her in the sling and pace up and down from 6pm until midnight when she finally settled. She was generally a fractious baby. Infacol helped a teeny amount.
We switched her top ups from mam bottles to dr browns because the teat is longer and is easier for her to latch.

Contact your health visitor and find out next steps. In our area they only refer breastfed babies for snipping on the nhs, bottle fed babies need to be referred by gp but it's probably different in other areas. You can get it cut and assessed privately for around £200.

I would agree, sounds very much like tongue tie. Does her tongue look heart shaped when she cries?
My dd had posterior TT which was missed by god knows how many professionals (she was prem) when picked up by a midwife we had to rush the referral through as she was almost 6 weeks old and in my area the NHS don't snip them after 6 weeks of age.

I could have written this myself!
My baby is 11 weeks now. Bottle fed, tongue tie diagnosed at 3 weeks and waiting for the NHS appointment since then. We received a letter last week and he has an appointment in 4 weeks. We went privately and the confirmed it ,(thick and low tongue tie) but the lady said he needs an ENT specialist. My baby is so gassy and windy. Really struggles with bottles. What works for us when he cries is squats! Up and down, up and down. He stops crying. And the sling is magic, he does all his naps there. He is a bit grumpy at the beginning but after a few squats and some dummy sucking he is asleep.