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?

Hi. I've no experience with tongue tie, but didn't want to read and leave. I had some issues with dd1 being low percentile and topped her up and weaned at 22 weeks. The advice you have been given re high cal formula and early weaning sounds sensible. Are you worried about doing either of these? It's so hard when this happens and easy to blame yourself - please don't! You are not a shitty mother, you are trying to do the best for your baby....

thunksheadontable Mon 12-Nov-12 15:02:29

Thanks. Which one though? She said either/or? I want to do whatever I can to try and keep the breastfeeding going so he is getting as much as he can.

Viewofthehills Mon 12-Nov-12 15:09:21

I would think the high calorie formula would show the quickest results. Starting solids can be a fairly hit and miss affair to start with as regards getting calories in. Also you can then 'top up' with this after a breastfeed in the same way you would a younger baby.

If it was me, I would probably try weaning, but I'm not sure if there are any problems with weaning and tongue tie?

prettybird Mon 12-Nov-12 15:11:54

There all sorts of background information that is needed quite apart from the fact that we can't see your ds

What weight was he at birth?
Is he otherwise happy, healthy and alert?
If you weren't weighing him, would you be worried?
What has his growth curve been like so far?
Is this just a one-off blip?

Weight is only one indicator.

For back ground - but remember all children are different - ds was 91st centile at birth, took 7 weeks to regain birthweight, dropped to underneath to the growth charts before eventually gradually moving back into them and onto the 50th centile (well, just under).

He was happy, healthy and alert and with hindsight was exhibiting "catch down" growth, ie was born much heavier than his physiology was ever going to be (I may even have been borderline diabetic) as neither dh nor I are large, so his growth pattern was adjusting to until his was on the "right" centile.

The good news is that I had loads of support and therefore had the confidence to continue breastfeeding until he was 13 months old.

Have you got anyone to talk to - breast feeding counsellor, HV (if they're any good where you are), friends?

You need to stop panicing and enjoy your baby smile

catkind Mon 12-Nov-12 15:12:54

If it's either/or I'd def go with the formula - much more calorific, and you don't know how much the solid food would get digested or just pass through and take up tummy space that could be used for milk.
I didn't see your other thread, I take it no luck with getting tongue tie help on the NHS? Is it worth seeing GP again with the weight info to ask for referral? It's all very well saying baby's nearly old enough for weaning, but milk is supposed to be a significant part of their diet till nearer 1.
If you'd like to try to express more, have you tried expressing one side while baby's feeding on the other? Have you tried hand expressing? I find I get much more that way.

thunksheadontable Mon 12-Nov-12 15:18:47

9lbs 3 at birth, 11lbs 10 now. He basically hasn't really gained anything at all in the last six weeks, maybe even more - haven't been weighing hm that much as he's my second. Developmentally he's doing fine - rolling 360 degrees and even babbling, lots of tata and bababa which is early enough, really good head control, reaching and grabbing, pushing up on his arms and bringing his knees under him, very active.

thunksheadontable Mon 12-Nov-12 15:20:44

Ooops posted too soon - I KNOW I need to stop panicking and enjoy him, I am having weekly CBT with him at the Mother and Baby unit, I am on meds etc - unfortunately though I am doing well, it's not really a case of just deciding not to panic, it's the nature of the beast.

The CPN will ring me at 4 to discuss it - am sitting here trying to be calm (he is asleep) and not go mental! smile.

Some0ne Mon 12-Nov-12 15:24:27

As has been said, we'd need more background to judge fully. But given the choice, I'd go with the high calorie formula. A baby who isn't established on solids won't get much nutrition from them initially.

DS was off the top of the charts at birth and slid down to the 50th centile very rapidly but thanks to high calorie formula we managed to keep him on a normal growth curve since then, so he's still on the 50th at 9 months.

He has a tongue tie too but the feeding issues have actually been cause by reflux. He was in too much pain to eat. Now that we've got that under control he's back on normal milk. Have you looked into other issues than the tongue tie?

Whatever you do though, don't get too down over it. Plenty of us have gotten babies through situations like yours, you're not on your own and you'll get plenty of good advice here. Try not to obsess too much, just take it a feed at a time and remember it'll all be behind you in a few months.

thunksheadontable Mon 12-Nov-12 15:33:37

Did they give you high calorie formula on prescription? I thought 50th was fairly normal, is it just the gaps between where they started and where they get to?

Don't think there is any reflux etc, he doesn't seem unhappy.. wonder will GP look into it.

Again, I wish it were as easy as just deciding not to obsess. It ain't like that for me unfortunately. Doing all my CBT and Mindfuness stuff but the crazy just peeps out from time to time ;)

ValentineWiggins Mon 12-Nov-12 15:44:12

I think you really need to go with the high-cal formula and stop obsessing about the need to give your ds just breast milk. You have done your best to do this but for whatever reason it isn't working. You are lucky - you live in an age where there is high quality formula milk available...maybe it's not as good as breast milk but a baby who is growing and thriving on formula is going to do far better health-wise than a baby who is failing to thrive on breast milk. Use formula and top up with expressed milk so that you get the best of both.

Get the food into him and see if he grows before you worry about all the other health problems that it could be. Although it might just be worth checking on cows milk protein allergy (god-daughter had this and failed to thrive on breast milk as the proteins were coming through from her mother's diet).

prettybird Mon 12-Nov-12 15:55:28

The other thing I meant to mention was that the nature of statistics is such that there have children above and below you on the centiles. all children can't be on the 50th centile - it's a statistical impossibility.

Your ds was very heavy at birth. Are you or your partner small or large? What about your other child? if you looked at the growth curve and shifted it, would he be following a standard pattern? I now realise that that's what the paediatrician meant when he said that at about 4 months old ds would start to move back up the centiles, ie he could see that ds was just adjusting ont o "his" growth curve.

FWIW, ds is now an extremely healthy 12 year old - very fit and active. Still very slim but about average for height, going by his peers (and that's despite both dh and I being smaller than avergae height wise). I have absolutely no idea where he is on either height or weight charts. grin

thunksheadontable Mon 12-Nov-12 16:12:57

ValentineWiggins, it's not about just giving breastmilk. I obsess that there's something wrong with him, not the manner of feeding as such.. then I obsess about contaminated formula, unsterilised bottles etc. So not the usual "my child must have optimum nutrition" obsessions though I do ruminate a bit about this if I'm not careful: it's actual OCD just that this is a trigger. I am actually fairly scathing of discussions where formula is made out to be poison etc because I am very pragmatic in normal life when hormones don't make me obsessional.

Prettybird, thanks very much for trying to reassure me but 0.4 as a percentile means 1 in a thousand are the same as or higher than ds2. Severity wise, anything under 2 is pretty unusual and because he was 91st at birth it's not great. I am tall and a tiny bit overweight, dh is tall and well built, ds1 (who dropped to second centile but not this low) was 75th centile within weeks of starting solids and has maintained that sort of centile since. So sadly I don't think that there's any reason to believe that he is getting enough and this is just a numbers game. He hasn't been gaining and that's not okay.

Thanks for the points and comments about high calorie formula. This seems like the most rational choice.

Does anyone know if there is an optimum way of supplementing to maintain the breastfeeding relationship?

The crisis has passed and my tears have dried up thankfully... just want what's best for all of us.

DS is also 21 weeks. He's dropped from the 98st percentile to the 25th. Had him weighed today and concerned HV told me to give him some steamed broccoli to hold when we make it for ourselves. Not sure what she thinks that will achieve.

I'm ingoring that silly advice and just carrying on as we are. There are no other signs that I am concerned about. He's just a fidget and prefers to practise his wriggling around and pre-crawling skills that feed sometimes and I expect he uses a lot of energy doing it.

If I were you, I would just 'offer' feeds inbetween feeds.

larrygrylls Mon 12-Nov-12 16:24:21


Where is your son on the length/height centiles?

By the way 0.4th centile, means that 1 in 250 children are lighter than your son, not one in 1,000. On the other hand, that is pretty light (our first son had reflux and that was his lowest centile).

I seem to remember (it was about 3 years ago) that we just swapped one breast milk feed for the high calorie formula. I think that worked quite well as my wife could go out for a while and I could give him that feed. However, generally with thin babies, all calories are good calories and you have to just supplement whenever possible and do some early weaning (not ridiculously early, though) especially if they seem to enjoy it.

Stop expressing and feed directly. Expressing 'can' mess up the supply and demand thingy.

Are you feeding to a routine/shedule?
How many sides do you offer with each feed?
How often do you feed?

prettybird Mon 12-Nov-12 16:27:56

Sorry I wasn't able to reassure you.

Just to reiterate: ds was 91st at birth, dropped to below the growth curves (ie below the 0.4 centile) and then chuntered along in parallel with but underneath the entire set of centile curves.

Howevver, there were no sudden drops - after the really big initial drop (over a pound) he just gainined weight reeealllly slowly - 50g a week was good grin I was expressing extra and feeding him EBM every second feed, so he could see he was getting plenty. Made no difference to the rate of growth.

Plus, I did have a lot of support from my dh, from the breastfeeding counsellors at the maternity hospital - who did refer him to the consultant paediatrician just in case (but who wasn't interested in the happy, healthy baby in front of him and was more interested in what my dad was up to), from my dad (who had been a radiologist at the same hospital) , who if he had thought that there was anything wrong with his PFBGC (Precious First Born Grand Child) would have had him whisked off to see his former colleagues quicker than a projectile vomit wink

JuliaScurr Mon 12-Nov-12 16:29:20

my friend was told by her doc to feed her twinson carnation mil andmashed po tato at 6 weecs

they were fine


thunksheadontable Mon 12-Nov-12 16:37:21

Prettybird, I'm not supposed to seek reassurance wink - athough it's our normal instinct, reassurance actually sometimes increases anxiety! I never knew this before I had OCD. It's all about exposure to your fears and handling it...

Starlight - I am feeding totally 100% on demand. I am basically feeding him as though he were a newborn. He is with me 24-7, sleeping in the bed with me, worn in a sling. He snoozes on me in the evening and has milk whenever he stirs. No mean feat with a toddler sometimes, ds1 keeps saying: "you've been cuddling him ALL day mummy"! I have been expressing while switchfeeding if that makes sense, so he is always on the breast while I express and I always make sure he gets the last bit on each side. I woud say he has a proper feed every one and a half to two hours round the clock. His weight gain just stopped - literally stopped dead. He was gaining about 5-7 ounces a week until around 12 weeks I think, but he is essentially only a few ounces over that now. So no weight gain since 12 weeks and I've only been expressing for a few weeks.

I don't believe it's a supply issue, I'm fairly sure it's a milk transfer issue.. but the little OCD voice (which believe me I WORK AGAINST) does keep piping up.. but what if? what if? what if?

thunksheadontable Mon 12-Nov-12 16:37:57

Larrygrylls, his hc is 61st and length is 89th. So again, not proportionate.

thunksheadontable Mon 12-Nov-12 16:39:45

Oh and Starlight - I switch about a minute after he flutter sucks, so sometimes he is on the first breast five minutes and sometimes up to ten and then I swap him over.

I only pump at four feeds max (often three) and he has obviousy many more feeds than that.

I have been in touch with Milk Matters but not getting a response.

Iggly Mon 12-Nov-12 16:41:00

Where are you?

I paid £100-150 (can't remember) for a lactation consultant to snip my DD's tie.

thunksheadontable Mon 12-Nov-12 16:44:01

I am up North so well placed but have been quoted £760 for lip and posterior tie. I need to see a lactation consultant really. Dh not very supportive of shelling out as he thinks it's just my OCD. It's really clear in the photos that he has a lip and tongue tie though, very classic.

I am going to go to the GP tomorrow anyway and push them to make a referral, the only thing is I know lip ties aren't done on the NHS and ds2 can't flange his lips around the nipple, I have to flange it for him and he slips down. I think that lip tie has to be done by laser dentistry - correct me if I'm wrong anyone who knows better?

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 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


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.

EugenesAxe Mon 12-Nov-12 20:09:02

I got my DDs tongue-tie sorted on NHS. Has your HV diagnosed TT? I went to a local clinic and it was sorted soon after diagnosis. I am in Surrey; don't know if it varies by Health Authority.

If you are worried I would give formula for now - 21 weeks is a great amount of time to have BF for if you can't get back to exclusive BFing. I managed about 9 weeks for DD but sorting the TT came too late for establishing BFing and a good supply.

Personally, I wouldn't wean early.

PosieParker Mon 12-Nov-12 20:09:43

My recommendation would be this:

Be a squeaky wheel
Pop to your GP EVERY week or every day if you need to, learn the names of the ear, nose and throat paed. Get your GP to write a letter requesting an urgent consultation.

Squiglettsmummy2bx Mon 12-Nov-12 20:10:08

My DS lost some weight then didn't gain at the beginning & I was pressurised into topping him up with formula. HV threatened me with social services if he didn't gain a specific amount by the net weigh in. I topped up the started weaning & by 6 months he was on 3 meals a day & just breast milk & we are still going strong at 9 months. I know the Tongue tie adds a different dimension to your problem but wanted you to see that topping up doesn't automatically mean an end to bf.

ThisIsMummyPig Mon 12-Nov-12 20:20:44

My DD1 fell underneath the growth curves, but she was only born on the 25th, so she only fell through about 4 before she fell off the scale. I can't tell you how much I worried. In the end the consultant paed told me to wean at 4 1/2 months, and DD1 immediately became more settled.

She is nearly 5, and I think she is back on the curves, but now she is big everyone can see she is healthy, so they leave me alone, and more importantly I leave myself alone.

Would there be any reason why you couldn't do high calorie formula, and then start weaning in a few weeks, while you continue with the high calorie stuff, and of course your lovely breastmilk.

thunksheadontable Mon 12-Nov-12 20:24:15

PS Declutterbug, thanks for reminding me of that, have just emailed my birth story to the supervisor of midwives to thank them for their superb care. Nearly forgot about it! Sent a pic of my boy in his tummy tub, still a water baby at heart

thunksheadontable Mon 12-Nov-12 20:28:31

Sorry - reply went missing! I think I will go to GP and see about high cal formula and hope that can get me through to solids and I see the difference. I will be that squeaky wheel.

CPN never called, no. Which is naughty of her! I like her but she is very disorganised. Though being in the NHS myself I tend to think if you don't get a call it's probably because someone else was more in need so I am not taking it personally!

Declutterbug Mon 12-Nov-12 20:34:04

Aw, water babies rock smile. He sounds a cutie. Let us know how you get on.

OP I can't know what is right for your baby, no-one online can. But I can tell you that I've been through something very similar, and like prettybird, my dd dropped OFF the centiles and was under the charts, and the paediatrician gave me the same options as yours. I chose a different path for dd, and have no regrets.

You can search my old posts from 2007 and 2008 if you like.

Dd is hugely healthy now at 5, will eat any food you care to mention (and I really think she has the healthiest attitude to food I have ever seen in a child. She will try french cheese, snails in garlic butter, wild rabbit - anything at all)
But now, just like then, she takes small quantities and suits her own appetite. She is tall and skinny, just like she was as a baby. She was always destined to eat and grow this way, I think.

It is possible to be different and healthy. One day I think I'll write to the paediatrician to add to his knowledge about this. For him, what he saw was too different, and he felt it needed to be changed to fit the norm. I'd like him to know how things turned out.

It is a huge burden, knowing only you can decide which path to take, given conflicting advice and your own conscience and judgement.
I wish you luck, whatever you choose.

tiktok Wed 14-Nov-12 11:25:47

VLC, who could forget you and the trials and tribulations of little carrot smile smile

You should indeed write - with pics - to the paed.

Having talked at length with paeds and others about this very issue, I have sympathy with them. The majority of slow growing skinny babies are ok - no doubt about it. Once you have ruled out rare metabolic diseases, underlying conditions affecting growth like heart or other organ problems (all of which have other symptoms, and within a short time of birth, too - but it's one of the reasons why docs will listen to the baby's heart when checking out a slow-to-grow baby)....anyway once you have ruled those things out, you are left with 2 possibilities: this baby is meant to be this way and giving more food is neither a good thing nor necessary; this baby prob needs a bit more to eat and would flourish with it. Differentiating these 2 causes is very difficult.

I do sort of sympathise with the paeds - a little - although it would be easier if they demonstrated a good understanding of breastfeeding to begin with. If they haven't deemed it important enough to actually learn about breastfeeding and its importance and impact on the babies they care for, it's harder to accept their advice. I remember my paed dismissing the bf baby weight charts (which I gave to him and which are commonly accepted now) and him asking questions about how long each feed was and how many times she fed, (I couldn't possibly answer) and talking about analysing my milk content(!).
Even then I knew he thought bf was a nicety that could be easily overruled, and I felt neurotic trying to explain why it mattered so much.

He wasn't the worst paed in the world, but oh my, I desperately wished he was Jack Newman instead. Now if he had given me advice it would have carried more weight. No pun intended.

Littlecarrot is phenomenal. Amazing, spectacular child. IMHO grin

And thanks again for your incredible support.

tiktok Wed 14-Nov-12 16:19:45

I think your analysis is spot on VLC - some paeds and other HCPs are very good about bf but others totally give the game away with questions about how long, how often, and are you sure you are eating enough oily fish or whatever smile

And yes, some totally do not get it that for some mothers, bf is an important part of what they want to do for and with their babies, and it goes beyond a mere 'lets get milk into this baby' agenda,

prettybird Wed 14-Nov-12 17:35:07

I have to say, I must have been lucky with the consultant paediatrician I saw. He put me under no pressure, despite the fact that ds, by that point, was under the growth charts (think it was at about 7 weeks, when he had just regained birthweight). In fact, he told me to stop the faff of expressing and just to enjoy my baby (and no, he didn't mean "give him formula instead" grin)

He accurately predicted the growth chart that ds would follow.

I have to say, like LittleCarrot, ds (now 12) still doesn't eat much but seems to be healthy. He's slim but energetic, even though I swear he lives on air. He wouldn't be able to able to play rugby and cycle competitively if he wasn't getting enough nutrition! smile

thunksheadontable Wed 14-Nov-12 18:28:16

Reporting back - it has quite literally been an unbelievable two days.

Went to GP. GP said ds2 was "wasted" and undernourished, he didn't think tongue tie was the issue (didn't look in mouth) and referred to Paed and wouldn't refer to have tongue tie divided, he wanted Paed to make call on that - waiting time 12 weeks. Said to just keep going and hope solids sorted him, developmental norms all okay etc.

Freaked out after I left. Decided to go to Mother and Baby Unit as had lost mobile and was afraid that I might lose it. Cried all the way in on the bus, arrived crying and saying someone needed to help me sort ds2 out quickly... what if there was something wrong etc... lots of support there, they were brilliant at calming me down, I rallied fairly quickly and just wanted to spring into action.

Said I wanted referral to lactation consultant and for someone to see about tongue tie. CPN said she would ring HV and GP to see what they thought as one had said solids/formula and GP had said solids no formula and I didn't feel either of them were particularly sure.

GP confirmed that it was routine referral - all milestones okay but significant drop. HV said she was very worried but hadn't wanted to tell me. She needed to see advice first... she felt she had neglected me and CPN said "well no there was a risk Thunks would disengage if you pushed it" (!!!!!!). They were worried it wasn't caught earlier. I had been busily having my anxieties challenged and was doing things like sitting there doing mindfulness exercises about how the issue wasn't that he wasn't thriving it was that I was WORRIED he wasn't thriving, the issue wasn't his weight gain, it was my WORRY about his weight gain and guess what? There was a real issue... man...

Anyway, there was a lot of discussion about what was the issue - I kept saying I wanted lac consultation - they said you need to do what the HV says and give formula, there is no room for discussion. I said no bother, I will, I have no issue with that. I also want lac consultation as I really want to keep bfing.... then they started saying was that my emotional need to bf vs what was right for ds2... erm, no, but yes, it is important to me and there's no need to stop.. said tongue tie thing - "no one else is worried about tongue tie but you" - yes, but I am a speech therapist - "but not here, this is your worry" etc etc. Round and round and round. "You will need support to go to Paediatrician and I think this time you need to take it and have someone go with you." I cried about my guilt that I was starving him and CPN said "you cannot afford to feel like this, you cannot afford to go there, you need to focus on now and that you are going to give him formula and trust that is right".

Eventually it came to this... "we need to be honest with you now. It's good you came to this realisation by yourself as if we don't take action now that's when we would have to involve outside agencies and that can be very uncomfortable".

I got very upset... understandably! Social services etc dancing in my mind, what was going on etc... I just sobbed and sobbed... the action plan agreed was that I wouldn't seek any further advice on his heath but accept formula was the best thing.

LUCKILY I had CBT booked anyway for afterwards - talked it all through with me. He made me write down everything I've done, how hard I've worked, all the evidence that I am fully engaged and making progress and he said it might be helpful to have a professionals meeting. We also covered whether my fears were rational or obsessional and the need for balance. I said I was very, very angry and felt it was a slap in the face and NHS arse covering and that they all needed to pull their fingers out and sort this out as they had dropped the ball and it WASN'T my responsibility to do any more than I have done. I've taken him to the GP, to the HV, I've not weighed him on advice as they said it was compulsive etc etc.... Worked it through and I decided I would take him to A and E to have an immediate Paed review. Explained to Paed in A and E I wasn't worried about growth but I was worried that it was being made out that this had happened because of me and my actions when I have never done anything to suggest I would avoid contact with health professionals or disengage and I wanted a speedy referral. Paed reg was fantastic and said - yeah, he seems fine, it's probably the breastfeeding but it is important not to leave it any longer. She advised solids but said she wasn't a Consultant Paed and I should discuss with my HV about referral to lac consultant.

I have since talked to CPN and HV and outlined why my concerns are rational and made an appointment with Milk Matters to have him seen privately by a lac consultant on Saturday. HV very supportive. CPN initially defensive but had to back down and admitted eventually she really did think my worry was anxiety and that his weight was not an issue and she didn't have any evidence I would disengage.

I feel I can breathe again. I honestly thought I was going nuts and that I was seeing him as skinny when he wasn't and that was OCD and I wasn't getting any better. Now I can take real action instead of just worrying and the relief is IMMENSE.

thunksheadontable Wed 14-Nov-12 18:31:57

Oh and I have told CPN that we need to have a multiprofessional review of my care and that dh needs to be involved as he hasn't really been supported at all and if they were worried about ds2 they had a duty of care to him that they should have informed my husband about....

Oh my gosh, I'm so sorry you are going through this. And I'm very angry that at one point you were effectively bullied into agreeing that "I wouldn't seek any further advice on his heath but accept formula was the best thing."
I don't know whether formula is or isn't the best thing in your situation but being threatened to do it and not seek further medical help can not be right.
You do need a lactation consultant, or breastfeeding counsellor to give you proper advice and help support you and your baby in your breastfeeding.
You should not be going through this and getting such conflicting advice.
So sorry.

CinnabarRed Wed 14-Nov-12 18:44:31

You're doing brilliantly.

Your post reminds me of that old (Terry Pratchett?) quote: just because you're paranoid doesn't mean they're not out to get you!

(I hope you're in a place to see that as humerous, not as me calling you paranoid.)

All the very best.

thunksheadontable Wed 14-Nov-12 18:48:45

The irony is I have given him formula! 3oz and then 6oz today and some pureed avocado with formula AND I have fed him.

They think I am reassurance seeking. It is perfectly good advice not to seek reassurance for irrational fears, it's really important to just accept that the fear is there and deal with the anxiety... but that only applies to NON PRODUCTIVE fear about the future, not fear where you are working towards a goal that is relevant to the here and now.

So it would be reasonable to tell me not to seek reassurance, say, that the weight drop meant he probably had cancer as that is disproportionate but it is not reasonable to tell me not to take action on something for which there is good factual evidence, as there clearly is in this case.

tiktok Wed 14-Nov-12 18:52:32

thunks sad sad sad

What a horrible experience.

It's so hard for you to know who to trust - who really understands about bf and infant nutrition and tongue tie and related issues.

I think this is beyond a breastfeeding counsellor to be honest with you - though we will stand by you and support you! You can't assume every lactation consultant has the clinical knowledge and skills, either.

If it's calories baby thunks needs (if he needs them), then go with the high-cal formula - and continue to explore the TT treatment. My understanding is that hi-cal formula will be more effective at a quick weight gain than solids, which you may find hard to get into him in any great volume (but this is outside my knowledge and experience, too).

prettybird Wed 14-Nov-12 19:08:44

Are we allowed to give you unMumsnetty {{{{Hugs}}}}? smilesmile

You're doing your best by your ds, especially your own MH challenges which are working so hard to overcome, and despite the best efforts of (some of) the professionals you have to deal with.

Hope the meetings/appointments over the next few days go well.

thunksheadontable Wed 14-Nov-12 19:33:21

Tiktok, it will be fine. The anxiety has literally just gone. I've had a lot of CBT and medication and I am really quite well, I just really believed that the outstanding issue was an irrational fear about breastfeeding when ds2 was "clearly thriving".... and when I heard the bad news that he had dropped through the centiles, for a few brief hours I thought: this is it, all my irrational worries are true, I can't trust anyone etc... but you know, no one will ever really know why my kids had trouble bfing. I coud quote evidence and what should have happened til the cows come home but the truth is, it's complicated and no one has ever researched my exact circumstances, there just isn't evidence to say why this has happened.

Basically, I have had years and years of stress in my life and have a history that means I hadn't learned a lot of helpful strategies for dealing with it - alcoholic father, mother who denied it all etc - and a difficult birth and breastfeeding difficulties just put me into overdrive.

I believed - I REALLY believed - that there MUST be an answer, and that a good mother would do anything possible to make it work and that it was totally untrue that breastfeeding wouldn't work if you did everything right. So I thought that the reason ds1 lost weight was because I gave formula too early and I was determined this time not to supplement because if I trusted my body, fed on cue, coslept and trusted my instinct it would all work. And everyone around me supported that and reinforced that as healthy behaviour...

but the truth is, I did need help.. the issues aren't just because of poor advice, though that may be part of it. The issue wasn't just ds1's forceps delivery or the fact I had an epidural or the size of his head or when he was supplemented or the fact I couldn't express... though all may have been a part. There is no answer to this and I've been trying to problem solve a feeling - I've been trying to find an answer to a question that can't be answered. Unfortunately no one actually realised the extent to which the birth and breastfeeding difficulties really did precipitate this. I don't think ds2 has anything gravely wrong with him. I just think that he has lost weight because of poor breastfeeding management, but with the information I had available to me, I did what seemed to be best and everyone else did the same but we were all working on assumptions that have proved inaccurate. There's no blame, it just is what it is.

One of the professionals I spoke to yesterday said that when she had kids, she never told anyone what she did for a living... but she went to groups and thought oh my god all these people are obsessed, I give medication to people who sound like this and they all think they are normal and that all this stuff they are saying is absolute fact... how can this be normal? Which is pretty much where I started off... how can this feeling be normal, why do I feel this guilt about feeding, why didn't I try harder, was I lazy? have I put my needs ahead of my child's, what sort of mother would do that? etc etc.

The problem isn't these thoughts, the problem is believing them. That is OCD in a nutshell. I am fine. I just need a bog standard lac consultant visit and to see a Paed and to ensure that this is dealt with. That's all.

I have been one of those NHS professionals who got it wrong. I have thought that a person's fears are anxiety when really they turned out to have a large grain of truth. I have seen this over and over... I was so worried that I had been depressed with ds1 but I wasn't, I was stressed... and everyone kept saying there was no issue but I knew in my heart that he wasn't getting enough mik, and lo and behold he went from 2nd back to 75th centile within weeks of weaning.

Now I can do what needs to be done. Finally.

Texmex Wed 14-Nov-12 19:43:46

Having read this thread I really feel for you. It seems professionals can't agree between themselves the best course of action which has led to so much confusion and anxiety for you, as it would for anyone in your situation.

My situation isn't as complex as yours, but when DD ( now 13 weeks) had her 8 wk check the HV said she had put no weight on since her last weigh in a few weeks previously, and when weighed the week after she still hadn't gained at all and was dropping down the centiles, from 75th when born right down to 0.4. We had to see GP, they were all concerned etc. She was exclusively breastfed, we tried expressing and topping up with that but no change. Decided to add formula after each breastfeed, she took 1 or 2oz after every feed, and is now on the 9th centile and following it, putting on about 5 or 6 oz a week. It seems she maybe wasn't feeding long enough as she was tiring towards the end of a feed. She never seemed hungry after a b/f, but will easily take the extra 1-2 oz formula and still breastfeeds regularly and I intend to continue b/f too.

I hope you get some good advice soon, and just wanted to post our story to make you feel less alone.

CreamOfTomatoSoup Thu 15-Nov-12 08:49:20

I topped up with formula from when DS was 5 days old and I'm still mixed feeding. The trick is to BF first and then give the formula after. DS is 6.5 months now and I've cut down BF by choice in the last few weeks but it still kept up even though I was supplementing with formula.

thunksheadontable Wed 21-Nov-12 16:45:12

Just to update.

Tongue tie confirmed and snipped - 75-84% tied. The difference in feeding is just unbelievable. I am also giving solids and formula because right now I just want to get weight on my boy. He went up 10 ounces which is nearly a centile space just from the first week. I am trying to hire a hospital grade pump as I'd like to try to get more expressed milk into him but I am doing breast compressions as he feeds and struggle to get letdowns without him on a regular pump. Can't work out where to get one though, a lot of the online shops seem to have broken links/not work anymore?

I can't believe the nightmare I've been in. I put some porridge and banana in a bowl today and I turned around to pick up the phone and he'd picked up by the sides and started lapping at it. He is starving.

I thought he wasn't because he was stretching himself to three hours between feeds and he had plenty of access to me, was often in a sling on me etc and so sociable and rolling and babbling and blowing raspberries, that thinking he looked skinny was all my "OCD"... but the HV says now that sometimes when they are really undernourished but otherwise stimulated they just stop demanding as they assume there's a famine on sad.

What a nightmare.

thunksheadontable Wed 21-Nov-12 16:48:27

Oh and it is now totally clear to me that though ds1 had tongue tie snipped it wasn't done properly, I had grown to think the intense suction that I always had was just how bfing was supposed to feel but since this tie cut, I now know what a comfortable latch feels like. I can hear him drinking down milk and I think what? I can hardly even feel him on there. I have breastfed for two and a half years out of the last three in discomfort but thinking it was the way it should be because it was so different to the pain I had experienced before ds1's tie was cut. I remember the ENT surgeon saying oh it's too thin to make a difference, don't expect this will make a difference to his weight but maybe she just didn't cut it enough! GRRRR.

aamia Wed 21-Nov-12 19:11:21

Tongue ties are horrid. So glad things are looking up for you and your DS. His poor gain will soon be just a distant memory.

TexMex Sat 24-Nov-12 15:35:11

I'm so glad you have finally got to the bottom of what was wrong. What a nightmare you've been through. Well done for persisting and I hope all the stress will be just a memory very soon.

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