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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?

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.

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.

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.

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.

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.

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.

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.

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.

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).

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.

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.

verylittlecarrot Wed 14-Nov-12 18:36:16

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.

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....

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.

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

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,

verylittlecarrot Wed 14-Nov-12 14:04:19

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 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.

verylittlecarrot Wed 14-Nov-12 11:00:13

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.

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

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

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!

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

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.

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.

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.

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