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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?

IsletsOfLangerhans Mon 12-Nov-12 14:59:02

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.

IsletsOfLangerhans Mon 12-Nov-12 15:10:03

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.

StarlightMcKenzie Mon 12-Nov-12 16:21:38

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.

StarlightMcKenzie Mon 12-Nov-12 16:22:19

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.

StarlightMcKenzie Mon 12-Nov-12 16:27:50

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?

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