Going against medical advice re giving formula - am I doing the right thing?

[willowstar]

My little girl was 3.47kg when she was born. She dropped 10% of her body weight and only regained it when she was a month old. At 2 weeks the HV referred us to a paediatrician because she was very unsettled and wanted her to be assessed for reflux and milk intolerance. Anyway...the Dr. only saw her slow weight gain and immediately said to top her up with formula. I had read a lot about BF and was adamant that I wasn't going to top up unless I felt it was absolutely necessary so I didn't. Anyway...she went on to develop reflux, she vomits anywhere from 1-5 times a day, usually 2-3. We gave gaviscon and domperidone with no effect so I stopped them after 2 weeks or so.

Anyway...she has now dropped centiles...from 25 at birth to 0.4 now, she only weighs 4kg. So, I had to go back to hospital today and was told to give her formula after every feed because she does not weigh enough. Absolutely no part of me wants to do this.

Here is my take on the situation. She is very tall...91st centile at 6 week assessment, her body type looks just like her dad at this point. She is alert, very very active, and except for the evenings when she can be pretty unsettled, she seems generally quite happy. The reflux won't be helped by giving forumla (from what I have read) and she is going to grow out of it at some point.

I was told to give formula for 2 weeks and if no improvement they would do 'tests'. when I asked what for they wouldn't say.

I honestly don't know what to do. I want to breast feed her, I don't feel that there is anything majorly wrong with her and i don't want to give formula. But, am I doing the right thing? I know only I can answer that, but does anyone else have experiences that might help me?

I have asked them repeatedly what the implications are of her gaining weight slowly but so far I haven't really had an answer. I am trying my best to look after myself, but with no family anywhere near me and my husband out of the house for 12 hrs a day I am struggling to cook decent meals. This is about the only thing I think that could be improved. I am vegetarian too, not sure if that has any relevance!

sorry this is long and rambling but I am worried and just don't know where to turn.

thanks.

I think if it was me, I would top up with formula and see if it helps her with weight gain. But then I had to top up my dd, because she had dropped below her birth weight by 4 weeks. She put on weight when topped up with formula. But my dd was unwell, she was very sleepy due to lack of energy, was not feeding well at all, not enough wet nappies, no poo, not waking up for feeds at all. I had to do something, and I was relieved to do it. It turns out my dd has a tongue and lip tie, so can not latch at all. she is now bottle fed ebm, and is thriving.
I topped her up with formula temporarily.
You need to decide what is best for your dc, but I would top up. I understand your concerns, but a small baby that is dropping so much down centiles, and with such a low weight gain, would have me worried.

I sort of agree with both posts so far but I've no personal experience.

I'd be pushing so much for an explanation as to what this slow gain means health-wise and refuse to talk about bottle feeding supplementation until they talk to you about their concerns adequately.

I think the alertness is a good sign but is DD pooing and producing wet nappies too?

Hi Willowstar. As squashimodo says, I'd be worried about the drop in percentiles.

However, my friend had a similar issue to you with her DD not gaining - she had jaundice. In the end, after countless HV threats that she had to top up "or else" (!), she managed to get weight gain by feeding on demand. This included a marathon 24 hour feeding session (her baby demanded boob a lot!) and making sure she was eating properly.

You say you're a veggie and not having proper meals. I think you need to look at your diet as you need extra decent calories. I'm not saying veggies eat badly but if you're not eating properly anyway, no meat might make it harder. Can you get some easy yet quick recipes? Try and have a decent sized meal for breakfast (eg porridge), lunch and dinner! Eg lots of pasta, fish and veg? I find it hard to eat well but DH helps by making sure we've got decent ready meals that I can have in the day (eg microwave rice and chilli) plus for dinner too (eg waitrose pre prepared foods).

Also drink loads of water!

Good luck

I would ask them to chart her on a personalised chart. My HV wasn't happy with my eldest's weight gain but on a personalised chart she was doing well.

If you didn't stick her on the scales would you think she was OK - does she seem healthy, does she have adequate in put and out put, does she seem dehydrated etc?

Have you thought about or did they suggest expressing and using that to top up? I would worry that it could knock your confidence if two weeks of formula your daughter is suddenly on a higher line, if it's your milk doing it you will have that confidence boost.

Hmmm, this is a tricky situation. It doesn't sound, from what you say, as if your DD is in danger, but it might be worth seeing a breastfeeding counsellor to see what you could do to help your daughter gain a bit more.

Your diet is very unlikely to be the problem. If, however, you are rushing around and not able to take the time to sit down and let her feed for as long as she wants, that might be part of the problem.

So basically they think she's not getting enough milk? Is eveything else ok, wet/dirty nappies, alert etc?

You don't say how long/often she is bf, I would probably try topping up with ebm. This way you can see if she is takng any more and how much when its offered. Any then think decide.

Last piece of advice hunt down tiktok

I agree with NotQuiteCockney - why don't you try and find a good breastfeeding counsellor and seek their opinion? Obv, depending on the counsellor, this is not a medical opinion per se, but a good one is worth their weight in gold. They might be able to help you improve your feeding technique, give you information on reflux and suggest things for your diet.

Perhaps more importantly, if you do need to top up a bit with formula, they may well be able to help you do it in such a way so that your supply isn't greatly affected and, when your DD has gained a bit more weight, you can return to exclusively BFing. This might be tricky on your own but isn't impossible and could be a good solution for you.

Incidentally, I did top up my DS with expressed milk in the first few weeks and that helped us a lot - but of course everyone is individual.

For a good counsellor, try your local NCT or La Leche league or ask your HV. In my area, I found my NCT one was beyond crap, the La Leche league scared me a bit and the HV one was amazing - she had been a midwife or HV once (can't remember which), had BF three children and had hundreds of tricks and suggestions up her sleeve. Obviously, in another area, in could be a completely different story and it's worth trying to find one that suits you.

National BFing helplines are worth a shot, too, perhaps to start with. Again, I think they really vary, so don't give up with the first one!!

I had to top up my DS for weight loss. I start giving formula initially then replaced them with EBM as I was able to produce the extra milk.

After a short while all the topups were EBM, he put plenty of weight on and I was able to wean off the topups - still BF at almost a year now.

I did feel better that it was all 'my' milk helping him and a bit of formula to start was not ideal but necessary, for us.

It was hard work though! Hope you are able to sort out a plan you are happy with.

Oh yeah - agree with LoveBeingetc - def hunt down tiktok!!

When my ds dropped of the chart he was tested for genetic abnormalities (common ones), allergies, cealiac disease, thyroid function and liver function plus some others that I can't remember. He was having blood tests for other things due to him having a transfusion at birth but I don't know if those tests were much to do with his growth problems.

Your diet will have minimal impact on your bm so try to eat well for your own sake but don't worry about your milk too much.

When ds stopped gaining weight, his head stopped growing. Pead was much more concerned about this that his general lack of weight gain.

I didn't give formula but we did end up being admitted for a couple of days so they could spy on us observe him feeding.

No need to hunt for me - I'm here

willow - I can see all sides to this, and it must be very anxiety-making for you...you say you don't know where to turn.

The reason for the 'top up with formula' thing is so they can rule out 'not enough calories' as a cause of the very slow weight gain. This is sensible, except for the fact that doing this has downsides, which you're well aware of. I think 'doing nothing' is probably not an option - despite the fact you baby does not seem in any immediate danger. Yet she is unsettled, and this could be because she is not getting sufficient to eat (of course babies are sometimes unsettled, for many other reasons).

Being long (you say your baby is on 91st centile for length) is not reassuring - babies should not be long and thin. If they're long they should be long and appropriately wide

So.....it seems to me the people giving you advice are not clued up about bf. There are many other ways of getting more milk into a baby, other than using formula, and a chat with a breastfeeding counsellor would help you work out the practical ones for you. You can then discuss your options with your HV, with a clearer view of what is safe to do.

The bfc will talk about feeding more often, feeding at night, feeding with three or four or more breasts each session, skin to skin, checking attachment at the breast, ruling outr tongue tie, expressing and topping up with expressed breastmilk...just call any of the helplines.

You mention milk intolerance being a possibility, but have you tried giving up dairy in your diet? This made a massive difference to my dc (although weight gain was not an issue for them). I appreciate that as a vegetarian this is unlikely to be easy, but at least if you could manage it for a couple of weeks you would see if it did make a difference or not, and then decide on the next course of action dependent upon the results.

thank you all very much for your replies, it is good to not feel so alone in all of this.

I am not sure if it is the stress of what is going on, but last night/evening she was very unsettled and I don't think I was producing enough milk for her...she had had a very pukey day too which didn't help.

i gave her 40mls of expressed breast milk I had in the freezer for such an occasion. it helped a lot.

today she has had some very big volumes of vomit again which is the crux of the problem I think.

I am going to speak to a breast feeding counsellor so see what they say and we are going to see the consultant on Tuesday.

Thank you all very very much, this is a really horrible time, I feel so responsible!

Willow did they try ranitidine for the reflux?? Ds1 was terrible with reflux and it affected his weight, the ranitidine helped alot!!!

why do you think that a load of strangers on the internet would be able to give you better advice than the people who have studied human bilogy for years and years and years?
get a second, or even third opinion from some medical professsionals. properly qualified people, NOT random people, who havent seen your baby, and have not necessairly got appropriate qualifications.

vvvodka, what an unpleasant post.

The OP was seeking support and shared experience, and a boost in her confusion. Many of the people on mumsnet have indeed studied relevant areas of knowledge for a long time anyway (I'd include myself in that).

None of the suggestions here - including my own - included advice to ignore what she had already been told, but to seek further and more detailed advice and/or to ask other opinions...just as you did, but without the sneering

i dont think anyone should seek medical advice from strangers on the internet

if you are unsure or need clarification you must book a face to face consultation and discuss the concerns try allay any anxieties. fact that things are so unclear is naturally alarming you.tests is a catch all phrase you need to specifically know what test and what the implications are. you need clearly identified treatment plan and objectives. i suggest consultation and specific clear understandable treatment aims and options

breast feeding is so emotive on mn, and few are wholly impartial so you may be subject to the strongly held views of strangers.rather than the face to face assessment of your paediatrician

no sneering was intended tiktok. i am prone to being excessively blunt and forthright in my opinions.
willow, hope it all gets sorted quickly.

I had something similar - for the first month or so - but finally got some decent help as it was just my experience but I did not find the helplines, health visits or local midwives much help.

I saw a lactation consultant/midwife out of my area - who gave me a lot of options and a game plan to try for a week (such as expressing, to feed more - especially at night) and if the weight did not improve within a week (which thankfully it did) the lactation consultant was going to refer me straight to a paediatrician.

You need a professional to check you and your baby out. You also need to have confidence in the professionals who you are dealing with.

PS I basically had a week of increased breast feeding - I put everything else on hold - I did not cook a thing for myself or do any housework, nor even change many nappies - so this meant I could spend basically a whole week just feeding. Oh and by the way I did think I was feeding alot before but by cutting down on everything else - including anytime at my PC - it did mean I could try get in long feeds - and so even though the baby was still vomiting up some feeds it eventually meant weight gain resulted. It was very hard going.

I was lucky in that my DH did all that domestic stuff.

I realise how hard it must be for you not to have family around as it is down to me and my DH too. Can you pop around to any breastfeeding cafes?

Good Luck.

Total sympathy. DS was in Children's Hospital for all sorts of things that seemed to land all at once. He was scraping below the 4th percentile, and was a very ill boy. It turned out that he was dairy intolerant, but the point being that they found a cause for his low weight gain. He was also very anaemic which is apparently quite common for babies who are dairy intolerant.

But the dietician said that there was no problem with me breast feeding him as long as I went dairy free. For whatever reason, he was still ill despite being dairy free for 6 weeks, but he's now on hypoallergenic formula.

Have they actually put a 'failure to thrive' on her? Blood tests can rule in/out quite a lot, and they probably wouldn't do any majorly invasive tests initially.

I definitely wouldn't hesitate to get her in for tests.

Just one thing I would like to add, DD is on domperidone and ranitidine for silent reflux (i.e. no vomits, just heartburny pain) and it took about 3 weeks to have any effect.

Hope this gets sorted for you soon.

Hi Willowstar - I'd agree that the consultants don't sound like they have much experience of BFing and to avoid reducing your supply of milk, you could start to express and then use that instead of FF top-ups? I really hope you manage to get a second opinion as they shouldn't be insisting you FF or refusing to tell you what potential tests they'd do! This advice is on the website I've linked to below "Breastfeeding is always considered best for infants with reflux. The mother may be advised to avoid dairy and soy from her own diet for a trial period to see if any improvement occurs. Such practices should only be considered under the advise of a qualified medical professional."

My DS had bad reflux (until 6 months), although luckily he wasn't vomiting enough to affect his weight gain, and a friend's DD had silent reflux (ranitidine helped her put on weight) so I know how hard it can be. I didn't find gaviscon had much affect on it, but he did start taking a carob based one, which I can't remember the name of but it was made by Cow and Gate (I think), which seemed a bit better. I was advised by HV and BF counsellor that if they want to feed straight after vomitting then to let them, as it'll soothe them and to feed little and often to help him keep feeds down.

This website seems very informative.

Good luck!

thank you all again for your replies. I am definately going to implement some of the suggestions and speak to the consultant about trying medication again...maybe I didn't give it long enough last time I tried it. it is interesting so many people have seen an improvement when they cut out dairy, definately worth a try.

thanks again, it really is valuable hearing about other people's experiences.

hi
Im sorry if I missed something in the posts (I have an ill 5 year old dozing on and off next to me!)

the relux you describe doesnt sound actually all that bad,my son had reflux and was sick after every feed and often randomly in between as well. He did still put of wieght though. BUT I cant comment on your particular position because he was formula fed.I would imagine though that with being sick between 2 and 5 times a day you baby should still be gaining a little weight in general.

I would ask them to look for reasons why she isnt gaining wieght BUT at the end of the day I think she is gaining weight very slowly and if she is also tall then the problem is probably more significant than it looks on the chart.

hope you work things out however you want!