AAaaaaarghhhh - brick wall GP...where to go next?

[verylittlecarrot]

Quick recap - baby carrot 17 weeks, excl bf, weighs just under 9lb, has been checked out by paeds, healthy baby, but very slow to gain.

Tried ALL recommendations for increasing breastmilk supply (lots of other threads describing attempts) - last resort is domperidone. Have taken it for just under 2 weeks. Baby has gained weight much better since I've been taking it the last couple of weeks, and whether it is the cause, we'll never know for sure. But I want to continue.

The lactation specialist told me she agreed that domperidone may help me, but "you'll never get a GP to prescribe it around here. You'll have to buy it privately and lie about why you want it, but you didn't hear that from me!" In actual fact, I was lucky enough to see a GP who read the material I brought with me, and was happy to prescribe it for a couple of weeks, then see if I wanted to continue.

My first prescription of domperidone is running out. The sympathetic GP who prescribed it was a locum at the surgery and isn't there any more. The normal GP has just refused to prescribe it "I won't prescribe off licence. If you can find a consultant at the local hospital to put in writing why I should prescribe it, then maybe".

No chance of that as far as I can see. How am I meant to get hold of a consultant anyway - doorstep them in the carpark of A&E?

How can I get it prescribed? I REALLY am nervous about ordering it online and hugely aggrieved that I have to take that risk with my baby's health - and mine.

Why does it have to be THIS HARD???? I just want to feed my baby, for God's sake.

[MrsBadger]

can you not buy it over the counter as Motilium indigestion stuff?

[PrettyCandles]

If you are prepared to lie you can buy it over the counter. You will only be able to buy two packets at a time, and will need far more than that, so will have to go to chemist after chemist. If they ask you who it is for, say it is for XYZ man (eg FIL) and yes he's taken it before. You don't knoow anything more about it, he's asked you to pick some up for him.

I have no doubt that what I've just suggested is completely unethical, but I'm not a medical professional, just anoyhre mum who's struggled with bfing, and in any case it's entirely up to you as an intelligent person to make up your mind what you do.

[PrettyCandles]

OTC it's called Motilium.

[Elasticwoman]

Perhaps you should get Sally Inch or Chloe Fisher, breastfeeding experts at the JR Hospital Oxford to back you up. Google Sally to find her email address and ask her. She may know of research evidence to confirm that you need domperidone, or she may counsel that you can do without it after this useful kick-start. Don't panic, but carry on feeding as often as possible; you probably know that milk production is stimulated by the baby sucking. Now baby is a bit older and bigger, the problem may have sorted itself out.

The problem is that not enough doctors know very much about breastfeeding. People like Sally Inch know much more. Not sure if Chloe is still working as she is well into her 70s now.

[bruhaha]

i'm sorry to hear you are having problems - is there another doc in your practice you can go to.

I've been taking domperidone for about 6 weeks and i've been lucky the doc i got has repeat prescribed it. He checked with other docs at the practice as he had never heard of it being prescribed for bfeeding but was happy to go ahead with it.

[mears]

I just bought it over the counter for my friend, however she didn't take it any longer than the 10 days. You really shouldn't need it on a permanent basis VLC. See how you go without it first - it may have produecd a kick start that you now will be able to maintain with breastfeeding alone.

[verylittlecarrot]

Hi everyone - thanks for responding.

Mears: I think Jack Newman recommends keeping domperidone going for as long as breastfeeding continues in cases like mine where breastfeeding is long established, but supply needs a maintained boost. She has only ever had bmilk, never top ups, and we are 4 months down the line. Her weight gain was 2-3 oz a week, but had plateaued for 3 weeks and now has really picked up again since taking it.

So wrt buying over the counter:

weeeelll, yes I suppose so; I take 9 tablets a day, and wanted to breastfeed exclusively to 6 months and then up to a year (or beyond). 10 tablets are £4.20, so that would be just under £240 for the next couple of months, then an annual cost of £1,308 thereafter.

[verylittlecarrot]

Jack Newman:

"Using Domperidone:
Generally, we now start domperidone at 30 mg (three 10 mg tablets) 3 times a day. In some situations we go as high as 40 mg 4 times a day. "

"Most mothers take the domperidone for 3 to 8 weeks, but sometimes it is needed longer than that, and sometimes it is impossible for mothers to maintain their milk supply without staying on domperidone. Mothers who are nursing adopted babies may have to take the drug much longer. People taking domperidone for stomach disorders are often taking it for many years.
After starting domperidone, it may take three or four days before you notice any effect, though sometimes mothers notice an effect within 24 hours. It appears to take two to three weeks to get a maximum effect, but some mothers have noted effects only after 4 or more weeks. It is reasonable to give domperidone a trial of at least 4, and better, 6 weeks before saying it doesn?t work.

How long can I use domperidone?
When domperidone was being used for babies (and now that cisapride is off the market, it is being used again), it was common for the babies to be on the medication for several months. Since the amount of domperidone that gets into the milk is very small indeed, from the baby?s point of view, there should be no issue in the mother taking it to increase milk supply for several months. Our experience with this drug is that short-term side effects are very few and almost always very mild. Worldwide experience with domperidone over at least 2 decades suggests that long-term side effects also are rare. Some of the mothers in our clinic, breastfeeding adopted babies, have been on the medication for 18 months without any apparent side effects. As mentioned in handout #19a Domperidone-1, patients using domperidone for stomach disorders may be on it for many years. I hope you won?t need domperidone for very long, but if necessary and helpful, stay on it."

[mears]

I understand what you are saying but it might be worth seeing what happens without it. You mighht not need it.

If you can demonstrate that weight gain diminishes again, I am sure that you would be able to get a prescription from a hospital consultant if the GP refuses. Did you give the GP all the blurb from BNF? What about a different GP?

[mears]

I understand what you are saying but it might be worth seeing what happens without it. You mighht not need it.

If you can demonstrate that weight gain diminishes again, I am sure that you would be able to get a prescription from a hospital consultant if the GP refuses. Did you give the GP all the blurb from BNF? What about a different GP?

[mears]

Can you take that info to the GP?

I still would see what happens without it - even Jack says not all women need to stay on it. You might be worrying needlessly.

[verylittlecarrot]

Mears - I took that info to the first GP, hence the precription. The second GP basically refused over the phone to turn it into a repeat prescription, and despite my giving him references to this information - he appeared to be a complete jobsworth about it all.

I'm trying with a 3rd GP on Friday.

Regarding trying to see how we get on without it; well, I have 15 weeks of doing without it, where she gained less than 3 oz weekly, ending with a plateau with no weight gain at all for 3 weeks. And then in the last couple of weeks whilst taking domperidone, she seems to be gaining at least 3 oz a week again. The protocol suggests giving at least 6 weeks for maximum effect before judging results. My hope is that after that time she will begin to gain something more aproaching a "normal" weight gain, and eventually move out of the failure to thrive zone. Maybe she won't. But this may be helping, so why stop it?

There would be no point stopping now. And it feels wrong to experiment with her weight to prove a point to my GP...ie I'll withdraw the drug which may well be helping dd to gain, and oh look, she's not gaining again, look Mr GP at my poor little baby and stressed out mummy...please feel sorry for us...now please prescribe it??? pleeease???

[verylittlecarrot]

sorry if my tone was a bit off on that post - I am very grateful for the help and support, I couldn't do without it.

Just frustrated and anxious, and cross that I can't get the help I need for my tiny baby.

[verylittlecarrot]

Has anyone bought this online from a retailer they trust?

[duchesse]

Hi V little carrot.
I remember you from your feeding thread back in October. I am glad to hear that minicarrot is growing, albeit slowly. Would you like to make contact with the mum of another dinky baby, who held out against the powers? If you would, I will ask my friend whose baby is now just over a year if she would email you about her experiences.

I know that Canada has relaxed rules about shipping drugs, and will ship over the internet. It might be handy if you had a relative in the US or Canada as it makes it easier.

[mears]

I can understand your frustration about it all.

If your 3rd GP is not supportive then I would buy the tablets over the counter at the chemist to last till the 6-8 week period.

I would then try feeding without it. You may well not need it as Jack Newman himself has said
"Most mothers take the domperidone for 3 to 8 weeks".

You may not need it after that. Why continue with a drug that may not actually be necessary?

I don't mean to sound like a broken record either but you seem to have decided you will not be able to produce enough milk without it but you have no evidence for that. We have mothers expressing for their babies in SCBU on domepridone and they do not need to have it long term.

As you know I do advocate it's use here on mumsnet. I just think you need to be sure you need it for the rest of your breastfeeding career IYSWIM?

BTW - out infant feeding advisor has written to GPs in the past to have domperidone prescribed. Is there a feeding specialist at your hospital? Is that the lactation specialist you were talking about? If so, why can't she write a letter - seems odd to me.

[callmeovercautious]

I think I may be missing something in your past threads but it is very common for exculively BF babies to stop putting on wieght between 4 and 6 months. Perhaps you should try without the drugs for a few weeks. It is hard going as they feed constantly (or so it seems!) but it is possible!

Hopefully the D has boosted your natural supply and things will be OK now?

[welliemum]

vlc, I also had supply worries and a baby that was slow to gain weight (dd1).

I found that bf really changed at about the 4 month mark in all sorts of ways, but especially, that it suddenly got much easier to build up supply by frequent feeding. I don't know what changed, I just know that it did.

And bf at 6 months is different again, and at a year, etc.

Based on that, I'd second mears' advice about having a go at bf off medication at some stage.

I know, believe me, how precarious this can all feel and that you don't want to rock the boat, and obviously you shouldn't do it til you feel ready to, but I wouldn't be surprised if your own body is now doing more of the supply-boosting than you think.

I so admire you for keeping going with bf because I know all too well what the pressure is like.

By the way, dd1 is now 3, still tall and skinny, smart, loads of energy, and the early struggles just seem like a lifetime ago. You'll get there too!

[verylittlecarrot]

I know my frustration probably came out expressed as if I've decided that I really "need" the domperidone, as if I'm sure my supply isn't enough. That isn't what I believe though. I'm not totally convinced I have supply issues. What I DO know is that my poor baby has only gained a couple of ounces or so each week of her life, and is the skinniest, lightest baby I know. Even the very kind reassurances of other mumsnetters about their tiny babies leave me a little nervous as I still don't know of any other mums whose 4 month old babies weigh less than 9lb.

I believe that without this medication, we'll carry on as we have, excl bf, gaining 2 oz or probably less each week. But I think taking it will do no harm, and may well do some real good.

I've only been taking it for less than 2 weeks - I think I really need to try it for the full 6-8 weeks (which may cost me a couple of hundred quid over the counter) to know if it is having an impact. My initial feeling is that it is working, but I'll judge things by her weight gain. And after that time, perhaps I'll try to come off it if I feel it won't cause her weight to stall.

I've tried everything - including fenugreek and I don't resent a thing - I'd do anything at all if I thought it would help her gain a little more. If someone told me eating me own toenail clippings would give her an extra ounce a week I'd ave em on toast in a minute. Right now, I'd be thrilled if she was on the bottom centile, even.

Duchesse - I'd be interested to hear from your friend - thanks!

I haven't given up. I'll try the lactation specialists again tomorrow and beg for a referral.

Thank you all for your words of support. I'm sorry to sound so whiny. Been a sucky day. Tomorrow will be better!

[hunkermunker]

Who was the lactation specialist you saw?

Can she write to support you?

Have you been referred to see a paed about her weight gain? Then you'd have access to a consultant - although not necessarily one who is happy to prescribe domperidone, that's true.

How is DD?

It might be that the third GP is happy to prescribe it for you - fingers crossed.

I'm really sorry you're having so much hassle, VLC. You're doing really well, you know

[welliemum]

What hunker said. It would be good to work out a reason for her being small, as it might mean less focus on supply, hence less pressure on you. Of course, some babies just are small.

And you don't sound whiny, you sound like someone doing a brilliant job in a stressful situation.

[verylittlecarrot]

There are two lactation specialists attached to the hospital, both attend the baby cafe and so know me and dd well. I'll try to get them on the phone tomorrow, and ask them for written help, but the previous comments from one of them about having to "buy and lie" leaves me in doubt that they can do this. I'll ask if they can speak to one of the paeds that saw babycarrot too.

She's great, BTW, thanks. Perfect, but skinny. Met the other mums and babies from my antenatal class today. DD is the oldest baby, and by far the lightest, at roughly half the weight of the other babies. I think they all mix feed or bottle feed now, and are wondering why I'm being so stubborn about excl bf. With my pixie sized baby, I'm hardly the poster child for breastfeeding, sadly...

[verylittlecarrot]

Welliemum / Hunker - ta.

I believe hugs are not the done thing on mumsnet so...