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Is DD posterior Tongue Tie? Anyone have any experience of getting a diagnosis?

5 replies

mummymog · 17/11/2013 21:13

My DD is now 7 weeks old, she didn't gain her birth weight back for 4 weeks and isn't putting on weight very well. We were told to give her formula top ups.

I thought it was low milk supply- so was given a course of Domperidone and did lots of double pumping (getting up twice at night to pump after her feeds). I take fenugreek and drink a half pint of guiness every night.

Thing is her feeding isn't great, and I'm now not convinced it's down to low supply. I was giving her top ups through an SNS (incidently does anyone know how to stop it leaking?) and she would eat for a while and then pull off and scream till she was put upright. and then cry when put back to the breast. I thought she must be full, since she couldn't be annoyed at lack of milk because I could see it in the tube. Then she started to refuse a bottle halfway through too. I was pretty pleased because I thought she must be filling up at the breast, but when we got her weighed again her weight gain was poor :(

Then I wondered if it could be reflux (she doesn't spit up and will lie flat in her bed no bother) but infant gaviscon has made no difference apart from making her poo minging.

Then tonight I read about posterior tongue tie and I think she may have that. In fact I hope she may have that because it'll be an easy fix. really struggling here, sometimes she'll refuse both breast and bottle and we have to get the syringe out.

People have poked in her mouth lots, but how hard is it spot the Posterior tie, could it have been missed?

Here's the symptoms I think she has, but they could all be something else too right?

poor weight gain
She makes a loud clicking noise when she eats
lets her lips slide off the nipple.
She often eats well for a short time, then pops off and won't go back on.
I can hear her swallowing loudly sometimes
she gets a suck blister sometimes and the end of my nipple sometimes goes pale after a feed.
when she has a bottle she dribbles milk out of the corners of her mouth
she often has hiccups
frequently falls asleep before full and wakes up when moved stll hungry
sometimes splutters halfway through a feed (like not at let down)
top lip curls in when feeding (I flip it up with my finger sometimes)
she's much worse at eating in the evening, sometimes refusing point blank bottle or boob.

and I'm sure i've never seen her tongue touch the roof of her mouth :(

Also, one of the symptoms I read was that baby is stressed when eating ie. hands near face and fingers splayed. She often does this, but I didn't know it was stress. Does anyones happy baby do this?

Sorry this is really long. I just want someone to tell me how they got posterior tongue tie diagnosed.

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bundaberg · 17/11/2013 21:18

you should ask the health visitor or GP.

there is a list of places, i'll see if i can find it for you in a mo... some of them accept self referrals, others you;ll need to get a referral from gp/hv

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bundaberg · 17/11/2013 21:18
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Flatasawitchestit · 19/11/2013 00:25

Hi my daughter had a posterior TT and had some similar symptoms.

I was never sore, but noticed heart shaped tongue and knew this could be a sign. I asked my midwife to check and she said no. Left it at that then later on at about 8 weeks old after weeks of colic like symptoms, clicking, etc I rang a lactation consultant that I knew and she diagnosed a PTT. I was so relieved yet annoyed it wasn't picked up sooner by myself or colleagues. It was snipped at 9 weeks.

You can look for a local nhs lactation consultant if you have one? I found my local HV useless unfortunately at anything bf wise.

I'm now a big stickler for looking for them at work.

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mummymog · 19/11/2013 04:41

we're off to see the infant feeding advisor at some point this week- but she's already seen DD when she was 3 weeks old and had a look in her mouth. It feels a bit like questioning her professional judgement having her look again but i'm so convinced.

Thanks for saying my symptoms sound about right and it got missed too.

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mummymog · 22/11/2013 22:29

turned out she did have a posterior tongue tie. Her latch seems better already! :)

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