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

(30 Posts)
thunksheadontable Wed 07-Nov-12 15:43:32

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!

thunksheadontable Wed 07-Nov-12 15:45:11

PS I get out one - one and a half ounces on the other side from expressing so he is getting EBM top up of 3-5 ounces a day at present.

thunksheadontable Wed 07-Nov-12 15:45:37

Sorry that should be half an ounce to one and a half ounces

Samvet Wed 07-Nov-12 15:47:15

Health visitors are mostly idiots. Look online for a private clinic and pay for it to be treated. He is not too old. Why would you take the opinion of one HV with no actually medical training. An ENT consultant will also be an option.

SchroSawMummyRidingSantaClaus Wed 07-Nov-12 15:52:26

Samvet HVs are qualified nurses or midwives, they do have medical training. hmm

OP, perhaps you could seek a second opinion from your GP?

thunksheadontable Wed 07-Nov-12 15:55:01

I suppose I thought she would know who to refer to and didn't know who elsse to ask, I haven't "taken her opinion", I just didn't know how to go about it as I'm not a professional advising parents on their feeding practices and weighing and charting babies growth so I did assume she might know something!

mawbroon Wed 07-Nov-12 15:55:26

Are you able to get to either Huddersfield or London? There are dentists there who trained with Dr Kotlow and use laser, they will also do lip ties.

If there is a lip tie, it is almost certain that there will be a posterior tie as well.

Huddersfield

London

There is an excellent group on facebook where you can get support from experts. Look for tongue tie babies support group and ask to join.

thunksheadontable Wed 07-Nov-12 16:04:41

Thanks mawbroon, am ooop North so can manage Huddersfield. I will check out that fb page. That's great advice.

Onetwothreeoops Wed 07-Nov-12 16:05:15

Can you ask your HV to refer you to a local breastfeeding clinic? They can assess the latch and refer you on the for tongue tie procedure if they can't do it themselves.

thunksheadontable Wed 07-Nov-12 16:23:14

I pretty much just said to HV "he has posterior tongue tie" (I am a speech therapist so have training about oral structure etc) and she went: "oh well".

That was it.

Not a lot of good!

Onetwothreeoops Wed 07-Nov-12 16:27:45

Can you contact your local breastfeeding clinic directly? It is worth pushing it though and bypassing the unhelpful HV if necessary. I'm sure the clinic would be able to give you better advice even if they need you to go via the GP for a referral first.

McBaby Wed 07-Nov-12 17:17:35

Had my DDs tongue tie cut for second time yesterday (the anterior one had healed and posterior one was missed first time). The pediatric ENT surgeon did it and said she would do it up to seven months without general anesthetic. I

mawbroon Wed 07-Nov-12 17:29:47

You're welcome thunk. Hope you manage to get something organised soon.

I know you probably have loads on your plate just now, but it may also be worth looking into getting your older ds checked out too. It is possible that an anterior tie was done but leaving a posterior one and/or a lip tie. This happened to my ds (aged 6 by this time) and we went to Huddersfield to have it done properly. The team there are really great and will do a good job.

EauRouge Wed 07-Nov-12 17:33:37

If it's TT then there's very little a HV can do (unless they've been specially trained) but it's not very helpful of her to just shrug and not to tell you where else to go for help angry

There are places you can go to get a second opinion.

GPs probably won't be much help but may be able to refer you. Bit hit and miss with GPs though.

Breastfeeding groups may or may not deal with tongue tie directly but they will at least be able to point you in the right direction and share some ideas of how to make things easier in the mean time.

If your hospital has an infant feeding co-ordinator then they should be able to help, some of them can divide TT and if they can't then they'll know someone who can.

There's a list of private TT dividers here.

Good luck!

thunksheadontable Wed 07-Nov-12 18:01:04

Mawbroon I strongly suspect that this is the case with ds1, his tongue still curls up and he can't elevate the tip e.g. when he puts it out of his mouth he can't move it up towards his nose. I didn't realise it for a very long time last time because in my head because it had been done, I discounted it as a reason for ongoing issues.Was it a terrible procedure for an older child? I would be terrified of GA...

Does anyone know what it is like as a procedure for a child of five months? When ds1 had it done as a little one he was still very newborn and asleep the whole time, it was a wee snip in his mouth. I am nervous about what it might be like for a more awake and alert boy.

Is it very expensive privately?

mawbroon Wed 07-Nov-12 19:21:23

How old is your older ds? As far as I know, the dentist in Huddersfield is only doing under 1s and over 6s, or that's what I heard anyway. I don't know if he would evaluate your older ds even if he won't treat him. Worth asking. I emailed the London dentist about ds2 recently and he said he would do any age.

DS1 had his done in Huddersfield just a month before his 7th birthday. He was really good about it, but he has always been great for docs, dentists hairdressers etc. There is no GA involved. He does it with local anaesthetic. The worst thing is the stretching afterwards to prevent it from healing back together. DS1 was old enough to do it himself which took away a lot of the stress, but I can imagine it might be hard to do on a younger child, but it's an essential part of the process.

We paid £300 which included a session with the osteopath. Ties can cause tensions in the jaw/head/neck and it is recommended that you follow up the revision with some kind of bodywork.

AngelDog Wed 07-Nov-12 20:52:53

Milk Matters do a consultancy service for £26 where they help you understsand if TT is likely and give advice about how to get it properly diagnosed or treated. They also do visits themselves, but only in Yorkshire.

It is worth getting in touch with your local bf group too - we have a local NHS funded lactation consultant (IBCLC) who specialises in diagnosing TT in newborns and referring to the ENT people here.

The FB page mawbroon linked to is great - lots of info and all sorts of people with experience of having TT babies who'll be able to tell you what it's like for a slightly older baby.

My understanding was also that the Huddersfield man only does under 1s and over 6's.

thunksheadontable Thu 08-Nov-12 11:24:31

I've been in touch with the Huddersfield crowd and I think it will be £360 - in tense negotiations with dh about it as he doesn't feel it is necessary and we should just wean/switch to formula. Am trying to convince him that tongue movement is good for other things - like kissing when he's older!

Thanks for the Milk Matters link Angel Dog, I am in Yorkshire (how lucky!!!) so I will get on it.

I am increasingly cross about ds1 as I read up on it because the health professionals around here never even took the tongue tie seriously - even the ENT who divided it said it would make no difference and never gave stretching exercises etc despite him having the classic corniculate tongue etc. GRRRR. He regained his birthweight within days of having it done but issues started again at 4 months as he never had a growth spurt - I wonder now if it had grown back?

I have already made a formal complaint about how they managed weight gain issues and the conflicting advice I was given... I feel another one coming on if ds2 does have ptt..

mawbroon Thu 08-Nov-12 13:36:02

I completely understand you feeling angry about your ds1. I would really encourage you to complain to raise awareness. Knowledge and skills relating to tongue tie have moved on but the docs don't seem to have kept up.

My ds1 had undiagnosed tongue and lip ties which I didn't discover until he was 6. He has had multiple health problems related to his ties including gastric problems (severe reflux and aerophagia), repeated stomach bugs, allergy and intolerance, sleep problems, fussy eating, sensory issues, high palate, mouth breathing, orthodontic issues, ear trouble and hearing loss to name a few. It was miserable for us all with the sleep deprivation and constant illness year after year.

He has been properly revised now and most of the problems are behind us. We are dealing with the orthodontic and orofacial problems, so I finally feel like we are on the right track. I am very angry that nobody picked up on his ties when he was a baby.

show your dh this and tell him about my ds1 and the £££ that we are having to pay out for his treatment which could have been prevented if he had been revised when he was little.

Good luck

RyleDup Thu 08-Nov-12 13:41:18

Go to the gp and get a referral to the hospital.

thunksheadontable Thu 08-Nov-12 13:57:33

They won't accept a referral as he is not dehydrated and is meeting developmental milestones RyleDup. Just slowly starving angry. T

RyleDup Thu 08-Nov-12 14:28:53

Hmmm, I think I would put an official complaint into the surgery then, and send a copy to your health authority. Ask the practice for a copy of their complaints procedure. Its amazing what can be achieved when you show them you mean business.

AngelDog Thu 08-Nov-12 20:36:00

I agree with Ryle.

We got a referral straight away for DS2 even though the lactation consultant described his tongue as 'not really abnormal but not quite right either'. He is gaining weight etc fine - fairly mild discomfort for me was the only symptom. We're off to have it snipped next week.

AngelDog Thu 08-Nov-12 20:43:57

FWIW I strongly suspect DS1 has a posterior tie which I'm hoping to get looked at soon. He also has a lot of the symptoms mawbroon describes - sensory issues, ear problems, fussy eating, allergies, high palate and also poor lateral tongue movement which makes it impossible for him to make certain sounds eg s, sh, ch. He's going to need quite a lot of speech therapy as a result.

thunksheadontable Thu 08-Nov-12 21:16:41

AngelDog, the shocking thing is I already have made an official complaint about bfing support I received - got a verbal and a written response apologising and saying how they would do things differently.. yet still no movement on referral

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