Fairly sure ds2 has posterior tongue tie - HV says can't be treated. 19 weeks and dropped to 2nd centile from 91st - HELP!

[thunksheadontable]

Ds2 is 19 weeks, was 9lbs 3 when born has plateau'd at 12lbs and is not gaining AT ALL since three month check. He is now second centile.

He has a lip tie and it affects the seal, he clicks when feeding, loses milk from his mouth and my nipples are bent out of all shape with a white crease on my left one, he keeps falling off the latch. I have taken to expressing on one side while he is feeding and refeeding it to him because I wanted to build up supply and make sure he was getting something but it is not really making any difference. Growth wise he is fine in terms of length/head circ. This is EXACTLY what happened with my ds1 at exactly the same age and it made 4-6 months hell on earth. I can see it going the same way.

Ds2 feeds two hourly - I switch feed 5/5/5/5 or until he comes off or seeks the other breast which he does frequently sitting up to get. Goes a bit longer at night - say three hours. I pump at four feeds and he clusterfeeds all evening but obviously not to much avail!

Ds1 had tongue tie with a corniculate tongue and the anterior tie was snipped and he rallied but we just never managed a three month growth spurt and it started to career down the charts. On HV advice I supplemented with one bottle of formula at 4oz which gradually rose between 4 and 6 months and later I always thought that it was because of this I had issues.. yet now ds2 who hasn't had a drop is following the same pattern.

Ds1 went back up to 75th centile within ONE month of starting solids.. so I feel confident he really was starving. I have a video of him eating and he looks like a starving child!

How could I get this lip tie/tongue tie thing sorted if HV says it can't be done? I hear online he's not too old but is he? Should I just top up ds2? I don't want to have him starving, I suffered IMMENSE guilt over this last time, got postnatal anxiety, suffered it in pregnancy etc. I am now much much better but I need to take action, it's not okay to have a tiny baby not getting enough food I think.

Please help!

It can be done. I am sorry you are having trouble accessing prompt treatment. Here is the link to NHS locations for treatment www.unicef.org.uk/BabyFriendly/Parents/Problems/Tongue-Tie/Locations-where-tongue-tie-can-be-divided/ Not all HVs or GPs are fully aware or educated about tongue tie and the various ways it present ...so you if you want to be referred on the NHS you may need to push for this or find a more sympathetic and informed GP. If you wish to see a private lactation consultant this is also possible and does give the advantage of breastfeeding support and advice as well after the division.

PS - just be aware that not all NHS providers necessarily divide POSTERIOR tongue tie so this may be something you should check out before attending the appointment....and then find someone else who does if necessary!

Hi. We had a PTT here too. V often missed and HCPs v divided in their response. We took matters into our own hands. A private Lactation Consultant came to the house when PFB was 4 weeks old & snipped it. Made a world of difference. I don't know if a LC would snip it at home at 5 months. I know the paeds will only snip after 6 mo under general so will only treat if really impacting on health. So I suggest you hurry! Cost us about £120 in London.
Milk matters have a great fb bf support page & run a bf consultancy. I think they are near you so perhaps they could advise?
Good luck. My dh was happy with the route I chose and I was keen to point out there was more than bf at stake. What about the joy of licking ice cream & snogging?!?

Not sure my experience is relevant, but I'll share anyway. My ds was only diagnosed with TT when he was 5. I'd taken him to the docs because his speech, which had always been a bit lispy, was getting worse. The gp had a look and diagnosed a TT and gave us a referral to the hospital. The consultant examined him and decided he needed the op, which was done under GA as a day patient. He was in theatre for about 20 mins and we went home about 4 hours later. He had no pain at all with it, it was followed up a couple of months later with a session of speech therapy and now he's fine. This was all done on the NHS and from seeing the GP to having the op was about a month, so really quick, and this was 2 years ago.

If I was you I'd be taking both dc's back to the GP and ask for a referral. I've always found emphasising the impact the problem has on children is what the gp needs to justify the referral.

I hope you get the treatment that is needed.