ULT & PTT in 7wo - how can we get it sorted when no-one wants to help?!

[AGnu]

My DS2 has an ULT & I'm suspecting PTT too. DS1 also has ULT & it would make total sense if he also had PTT. We had problems feeding DS1 which we initially put down to a traumatic birth. DS2, on the other hand, started off feeding well but at 5 weeks the green nappies started appearing & feeding was getting more uncomfortable instead of getting better as I was expecting it to.

We're now at 7 weeks & I'm bruised at most feeds, he needs to be re-latched several times due to slipping down the nipple or pulling his tongue back in & almost every nappy looks like cartoon toxic waste! I suspect the initial 'good' feeding was actually simply that I was over-producing & had a very active let-down. I would express & bottle-feed occasionally when the pain got too much & I could easily express twice the amount he'd drink!

We had the 6 week check today & I raised the issue with the GP who was very sympathetic & told me that breastfeeding is really difficult & then suggested I call the local breastfeeding advisor, whose number she didn't have! She also told me that green stools aren't at all concerning & once I explained about fore/hind milk imbalance she admitted that I seemed to know more about it that she does. My health visitor just said "Oh dear" when I mentioned having problems.

I can see DS2 heading the same way as DS1 - he ended up being put on high energy formula for failure to thrive. I'm devastated that we might have to go through all that again especially after I was so relieved that it all seemed to be going well initially & I had been hoping to donate to the local milk bank!

I'd call the breastfeeding advisor & see if she could tell me how to get help but I don't think I'm capable of talking about it without sobbing right now! I might get DH to call & see if she's free to meet up sometime. I'm terrible on phones at the best of times, let alone when I'm upset! Oh, & being upset about this apparently means I might have PND according to the GP... I don't. I'm just disappointed & frustrated that no-one seems to want to help.

Where can I get help if the HV & GP aren't being proactive? I'm in the south west & willing to go private as a last resort! I'm not so concerned about the ULT as a dentist friend says it doesn't look like it'll cause problems from a dental point of view unlike DS1 who already has a big gap so I'd be happy to get the suspected PTT dealt with & hope that's enough to sort it. I'm at the point where I'd consider cutting the tongue-tie myself if I knew what I was looking for! [desperate emoticon]

If you use Facebook group, search for tongue tie babies support group. If you search for IBCLC you may be able to find someone who may be near you who can help.

Jings, there are loads of tongue tie threads at the moment!! I will say the same on this one as I say on the others!!

If they have ULTs, it is most likely that there are also tongue ties, probably posterior. It's really rare to have ULT without a tongue tie.

Ask to join the tongue tie babies support group on Facebook. There are loads parents on there who are dealing with TT and there is a lot of knowledge in the group.

DS1's ties went undiagnosed until he was 6yo. He had all sorts of problems which I later learned were related to his ties and high palate (which is also caused by the tie). We travelled 400mile round trip to have his revised correctly after a local surgeon failed to release it properly. A good frenectomy is worth travelling for.

If I had his baby days again, I would have gone straight away to have his PTT and ULT lasered. There are 2 dentists who trained with Dr Kotlow (google him, he is a leading expert) and use laser. They also do ULTs which I believe hardly anybody will do. They are Malcolm Levinkind in North London and John Roberts in Huddersfield. It costs between £300 - 400, but it is money well spent IMO.

In the meantime, google exaggerated latch and the flipple to help you with latching problems until you can have it revised. Cranial osteopathy before and after revision is also worth doing. Ties can cause a lot of tension in the jaw which can hinder nursing too.

Not sure where in the SW you are but there are two infant feeding coordinators at the RD&E Exeter who are very helpful. Saw one immediately after DS tongue tie was clipped (difference was immediate). Ask your MW or HV for a referral.

Mervyn Griffith at Southamtpon hospital is one of the UK experts on dividing tongue tie

I just had my LOs done in Huddersfield with John Roberts. Lovely practice and was all over very quickly.

As others have suggested it would be worthwhile just going private to get it diagnosed and corrected. In my experience doctors and HV are quite useless in diagnosing posterior tongue ties and even if they did, it would probably take a long time to get a slot with an nhs surgeon to snip it. Have a look on www.tongue-tie.org.uk it will tell you who is registered in your area.