Bereft - 21 week old ds2 is now 0.4 centile, 2nd last week so heading off the charts..

(76 Posts)
thunksheadontable Mon 12-Nov-12 14:48:51

I posted earlier this week about my tongue tied ds2. Have been trying to get him sorted but have had no contact from Milk Matters and the bill for lip/ptt division privatley is £760 and we are struggling...

I nearly had a panic attack in the clinic, I have OCD about this issue (for real, not a figure of speech) and my heart just sank when I saw the reading. I have been expressing four times a day and giving him an extra 4oz for three weeks.. that's all I can get out.

The advice I've been given is either:
1) go to GP to get high cal formula on prescription and start to top up this way
2) wean him now with high carb things like potatoes, avocadoes and bananas

What do you think I should do? I am totally clueless. Sitting here with him sleeping on my lap with tears streaming down my face trying to sit on my hands to stop me googling horror stories of what might be wrong with him if it's not the tongue tie. Trying to tell myself to get a grip. Just feel like the shittest mother in the entire universe for not realising how far he had dropped and also how crap I am for being so OTT about it when there are others out there whose children have really serious stuff wrong with them... Christ how would I ever cope?

thunksheadontable Mon 12-Nov-12 16:44:28

*another lactation consultant

We had formula on prescription as he was prem and we were using it as a top up . If it was me I would go with top ups rather than weaning just yet. Hope everything goes well whatever you decide.

5madthings Mon 12-Nov-12 16:45:21

If it was me i would go with solids rather than formula actually.

You say your elder ds did this and then caught up once solids were given.

Adding formula may affect your supply, it will fill him up for longer and so you will have a longer gap.between feeds.

Yoi really need the tongue tie sorted!

You know the lack of weight gain is not ok but he serms happy in himself and is giving no othet signs of concern?

How is he re sitting up? Tongue thrust? Intetest in your food etc?

showtunesgirl Mon 12-Nov-12 16:48:07

OP, that sounds like a VERY steep fee for snipping. I would "shop" around as I've never heard of it ever costing that much.

thunksheadontable Mon 12-Nov-12 16:49:08

5madthings, that would be my preference but I don't think he's ready. He can't sit unsupported yet and he does have some tongue thrust. I think he's nearly there but not quite if you know what I mean...ds1 was 23 and a half weeks when we started solids under advice and we did a mix of finger foods and mashed foods on preloaded spoons from the start as he did have all the readiness signs and he just FLEW with it.. but right now even 2 and a half weeks away seems ages, especially as he appears not to be gaining even a tiny bit. I think I feel more cautious because it is Winter and ds1 is at toddler three days a week, very concerned about what would happen if he got a bug with this little meat on him. He appears very skinny. I don't know if that is a rational fear or an OCD one, but it is certainly a fear!

thunksheadontable Mon 12-Nov-12 16:52:05

I will do so showtunesgirl. I think it's because I asked Dr. Roberts in Huddersfield and he is the one with the most experience of treating this in the UK, so I guess he can afford to hike up the prices. Trying to weigh up whether it is worth pushing dh on that money or going with a cheaper anterior snip or pushing on NHS... the main thing is I MUST act soon.

showtunesgirl Mon 12-Nov-12 16:54:06

OP, I've just had a quick google and compared prices and the most I've ever seen anyone charge is £500 due to emergency call out over Christmas. Everyone else charges about the £150 mark. Why are you being quoted so much?

Might it even be worth travelling to get it done cheaper somewhere else if the person near you won't budge on that price?

ValentineWiggins Mon 12-Nov-12 16:54:45

Sorry thunkshead didn't meanto come on so strong. I do sympathies with the worrying - I am the same in that I am completely capable of making a mountain out of a speck of dirt let alone a molehill.

From what you've said it does sound like he is struggling to take the milk from you so I wonder if the solution isn't to bottle feed (formula or breast) so you can measure how much he is getting. Then you will be able to have a meaningful discussion with HV/gp etc.

showtunesgirl Mon 12-Nov-12 16:55:05

X-Posted with you OP!

There's someone near me in Croydon, I know not that near you, who does it for about £150. Might it be worth travelling down?

thunksheadontable Mon 12-Nov-12 16:59:09

It's the liptie that raises the price I think, the tongue tie itself would be about half that but they want you to have a cranial whatsit session too but I suppose this may be optional.. I just might be buying into the idea that the most expensive is the best. Have been leaving messages on the Milk Matters phoneline but not getting anywhere, think they have just opened a clinic in Leeds and would like to go try there for a consultation first.. been leaving messages since Thurs.

Valentine, that's quite alright. I have very little sympathy for my own worrying, it really pisses me off. In "real life" I am a pragmatic sort but baby stuff makes me silly indeed... I am at the point where I can see it is all nonsense but my body stil reacts with extreme panic as though I were in a flight or fight situation. Very irritating.

5madthings Mon 12-Nov-12 17:11:42

thunk they change quickly at this age so one bottle of the high calorie formula for a week or two when he may be ready for weaning and then yoi could mash stuff up with the high calorie formula and do a mix of mash and blw and do away with the bottle? It would only be for a few weeks as they do develop quickly at this age and would give him a bit of chub for wintet so.you can relax a bit? Xx

aamia Mon 12-Nov-12 17:44:18

I would go with formula so he is still on milk only until six months. I mix fed for weeks and still now top up with the odd bottle at growth spurt times. My supply is fine so I wouldn't panic too much about that.

mawbroon Mon 12-Nov-12 18:57:49

Thunk, is that the price you were quoted at Huddersfield? We paid £300 in total for ds1 to have his lip and tongue done. It was broken up as £50 for the consultation, £200 for the frenectomy and lip release and £50 for the cranial osteopath (optional but recommended).

Were they quoting for doing your older dc as well maybe? I would be really surprised, in fact completely astonished if the prices had changed so much since we were there in September.

Declutterbug Mon 12-Nov-12 19:18:17

Thunks -what evidence have you been shown that lip tie (in general) has any impact on breastfeeding? Are there even any studies?

You have a few issues to resolve here:

(1) Is the weight and growth tradjectory a problem or is it just normal for your baby?
(2) If it is a problem, is it something related to feeding, or another underlying cause?
(3) If the feeding is a problem, exactly what is the issue? Is it milk intake? Is it related to supply or purely transfer? If it's transfer, has positioning been optimised first? Is there an anatomical issue (e.g. tongue tie)?

Can you break down the problem by chunks? Has question (1) been addressed? Usually after a downward weight tradjectory crossing two centile spaces on the chart a referral to a paediatrician is in order. Have you had one? They can rule out problems unrelated to feeding (unlikely).

Then, what does your baby's behaviour tell you? Are they happy & smiley? content at the breast? Weeing and pooing? Seeming ill? All of these can give you a clue as to whether this is just your particular baby's normal pattern. Whilst it is unusual for babies to cross more than 2 centile spaces in either direction, for some it can still be normal, in the absence of other signs of a problem. Weight is an indicator, a symptom -not a problem in itself.

Then you get onto the feeding. Even if there is a possibility of tongue tie, the starting poing is getting the best possible attachment. There is plenty of free help available with this, no need to pay. Try ringing the national breastfeeding helpline (0300 100 0212) or one of the bf charities. They might even be able to help you find free face-to-face help.

I am sorry you're having such a rough time. I remember you from the various discussions with those midwives from another forum just before your baby arrived smile

thunksheadontable Mon 12-Nov-12 19:21:14

Just looked at the email again and I think I made a mistake, I thought they said £330 for lip and £330 for tonue but no, you are right, it is just one. And not £330 either. Need to have my eyes tested. Might make it easier to sell to dh!

Mawbroon, did you have any dealings with Mik Matters? I can't get onto them at all. Apparently they have a clinic now in Leeds but I've left several messages and have heard nothing back. I wanted to see them first as they would come to my house...

tiktok Mon 12-Nov-12 19:22:44

OP, feel very concerned for you.

I am really uncomfortable about you seeking definitive guidance on the internet.

People are contradicting each other on this thread, which is in the nature of the beast.

You need information, and someone in RL whom you trust to help you decide.

The price you have been quoted is very high. Snipping tongue ties is definitely evidence based. Cranial osteopathy is definitely not. Lip ties the jury is out, but experienced people do believe snipping is effective.

High calorie formula will be better at getting calories into a baby of this age than solids, which tend to replace milk - not what you want.

If you are worried about bugs and so on in formula, you can get high-cal formula in ready-to-feed.

But I have no idea - and nor does anyone else here - know if your baby needs to gain more weight. It is possible to be healthy and on the .04th centile, and to have fallen that distance. But no one here can say if this applies to your baby.

Your baby will almost certainly gain quickly on the high-cal formula. You need to think about what the effect on you might be of that - you may be upset and it's sensible to be prepared for that. FWIW, your baby will almost certainly not be harmed at this age by having formula, and of course you can still bf him for as long as you want smile

thunksheadontable Mon 12-Nov-12 19:33:28

I don't know if there are studies Declutterbug, but I can see that his lip is literally not making contact with my breast, it curls right under itself (e.g. all you can see is philtrum) and there is a small lip notch on one side. I can't even flange it, it breaks his lip seal. As you may know from elsewhere (!!) I have some professional background in oral anatomy and feeding (though not amazing, no expert AT ALL, just know a bit about it and have looked inside a fair few mouths of children though not babies!) but I can see myself that he can't manage lip seal. I can also see pretty clearly that his tongue, while it can protrude forward with some effort doesn't follow to the side and he basically can't elevate it, the sides elevate upwards but not the main body of the tongue, which dimples clearly on the first third. He can't maintain the latch, my nipple is misshapen after every feed, he coughs and splutters when I get a letdown and loses mik out the side of his mouth as he can't maintain lip seal, there is a clicking sound when he feeds and he clicks quite a bit anyway. I can even tell from his vocalising and watching that, that his tongue really is quite restricted. Dh has a tongue tie and when he speaks at speed he interchanges certain sounds, specifically /t/ and /th/ and /d/ and the hard /th/ as in though. This makes it hard for some people to understand him. It is unusual for tongue tie to create any major difficulties with speech but this is one of them.

I think they've been conservative about the referral to the paed because of my OCD to be honest, and also because he is rolling 360 degrees, doing some basic babbling, pushing up on hands and knees, sociable, not upset or appearing ill at ease, generally in good health. I will discuss it with the GP and also my CPN because I think she had told the HV to talk to her about discussing things with me and to exercise some caution with the pathway.

I just want what's best for ds2 to be honest.

Declutterbug Mon 12-Nov-12 19:37:27

smile

As I said, a paed referral would be usual to exclude the unlikely possibility of an underlying problem. It's definitely worth asking why this hasn't been done if it hasn't.

Another thing to think about is how he takes milk from a bottle. Are you giving back all this milk you're expressing?

thunksheadontable Mon 12-Nov-12 19:44:25

Yes, I am giving it back to him!

I know that a paed referral would be usual but I suppose they have been weighing up costs and benefits as I really was quite poorly around the time of the birth. There was a time that if a paed referral had even been suggested, there would have been a significant risk I would end up having to be hospitalised and would avoid all contact with ds2. That time has thankfully passed so they will have a CPA meeting for me soon and review my care plan. I know the HV was told not to suggest any onward referrals or intervention without contacting my CPN first. She didn't weigh him at the 3 month check in. I think there may be a bit of hesitation too because I complained about the intervention I got when he was born as I had twice daily visits about feeding/poor weight gain and the care plan said I wasn't to be asked to chart times of feedings etc because of the risk I would become avoidant of my baby but there was very poor communication among the team and people came to the house saying things like "well we're all a bit OCD but how many feeds is he getting?". This resulted in a whole day I couldn't be in the same room as ds2 as I was having panic attacks. Horrible bloody illness. I had a formal apology from the Chief Exec both verbally and in writing.

I'm just so sad that it hasn't gone better than this. I am much, much better. I'm just sorry that it couldn't have all been managed better at the start. Despite my complaint no one came near me again to check how he was doing. I don't think this was a brilliant idea in retrospect.

thunksheadontable Mon 12-Nov-12 19:45:22

Sorry - he hasn't great seal on the bottle either but he does manage it, major jaw action though. Looks like a little puppy shouting at it. Slow feeder from the bottle as well and it makes him v gassy.

thunksheadontable Mon 12-Nov-12 19:49:23

In fact, the only reason this is being flagged up now is because I am pursuing it. It would have just been left at him not being weighed or reviewed... I just got a bit better and decided that he seemed skinny and that I needed to deal with it.

Declutterbug Mon 12-Nov-12 20:00:22

It sounds incredibly hard. What does your DH think? Did your CPN call?

threeinone Mon 12-Nov-12 20:02:50

Any private lc will confirm the ties, you know they are there. Huddersfield is expensive because of the laser and co style extras. Mm use Anne Dobson too, if you wanted you could approach her directly and save the referral fee. You can explore your nhs options again and get referral to different consultant, they do gave different criteria for snipping.

Other than that what tick tock said oh and remember that bm alongside weaning of any sort is important to health outcomes, maybe more important than six months ebf.

Sorry you didn't get better support at the start. Take care

scarlettsmummy2 Mon 12-Nov-12 20:03:19

Do both.

PosieParker Mon 12-Nov-12 20:07:49

How tongue tied is he?

Both of my older boys were tongue tied, one's tongue came out just past his lips and the other would be forked before his lips. We had NHS surgery for both but when they were nearly one.

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