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Reflux / feeding issues

(14 Posts)
Finners81 Sat 16-Aug-14 09:29:55

Hi all,

I am new to mumsnet and hoping to get some advice about my daughter. She is 10 weeks old and at 3 weeks the health visitor told me that she thought my daughter had silent reflux because she was crying and bringing up her legs a lot. My daughter was initially combination fed, but changed to formula full time at 4 weeks. She is on hipp organic formula.

At 4 weeks, I took her to the doctor who agreed with the hv that it was silent reflux. We were prescribed infant gaviscon. I was concerned about constipation so the doctor told me to give her 4 single sachets per day.

We did this for a couple of weeks, but she wasn't really any better. So, I went back to the doctor who took her off gaviscon and onto ranitidine. She did not get on at all with ranitidine - kept throwing up her feed (which I suspect could have been because she came off gaviscon) so the doctor said there was no point in her having the medication as she is bringing it back up. So, after 4 days on ranitidine, she came off ranitidine and back onto gaviscon. We upped her gaviscon to a double sachet per feed (5 double sachets a day). This seemed to improve things, but she was still straining a lot. I thought it was linked to her straining to poo as the consistency of her nappies was very putty like (even though I know this is not strictly constipation). She was straining all day, even in her sleep. So, we were then prescribed lactulose to help with the straining.

Lactulose has helped with her poo now being a bit more loose however she still appears to be straining, bringing her legs up and crying (been giving her 2.5mls per day in the morning). During feeds, she starts off ok, then starts to wriggle around a lot and cry, arching her back at times. Obviously, something is still really bothering her and I have no idea what it can be. My doctors have no appointments (am told to wait two weeks!) so I am offered telephone consultations whenever I call, but this is not helping. I would like her to see a paediatrician, but they won't look at her because she is not losing weight. Feel so completely lost and helpless.

Has anyone else experienced this with their little ones? If so, what did you do? Any advice would be so much appreciated. I am at my wits end!

Thanks

beccajoh Sat 16-Aug-14 09:38:34

What amount of ranitidine was she on? When were you giving it? DS is on ranitidine and it doesn't need to be given with a feed, or so we were told. We've been giving it at any which time for the last six months and it still works fine. It took about two weeks for it to take full effect. We found gaviscon fairly useless.

SR is hideous. I remember all the screaming and back arching all too well.

Finners81 Sat 16-Aug-14 09:56:47

Hi,

Thanks so much for your message. We were put on 0.5 mls 3 times per day and were supposed to move that up to 1 ml 3 times per day at the end of the week. As we didn't get to the end of the week, she was still on 0.5 mls before we stopped it. We gave it her just before feeds. To be honest, my doctors have been really vague on when to administer meds - can this make a difference? When did you give the ranitidine? Did you have problems with your DS keeping milk down? Perhaps we need to give it another try. I am now wondering if I have confused the straining with excess acid that she's struggling to cope with. So confusing!

BookTart Sat 16-Aug-14 10:12:30

Infant Gaviscon didn't help with Dd's SR at all, but Ranitidine helped for a while. If you only gave it a week it might be worth reviewing the dosage (which is weight-dependent) and trying again for longer to give it time to work. We were also given Domperidone but she got so distressed taking it that we had to stop. Eventually Ranitidine stopped working (I read somewhere that they build up a tolerance to it eventually) and now we're on Omeprazole, which took a month to kick in.

I feel for you, SR is hideous. DD was referred to a paediatrician once the Gaviscon was stopped, despite not losing weight, so might it be worth asking again?

Finners81 Sat 16-Aug-14 11:03:17

Hi,

Thanks for your message. I think I might ask for a referral to a paediatrician. My doctor was suggesting ginger tea and orange juice (which seems really strange given she supposedly has reflux!?). Needless to say I did not follow his advice! I do think giving the ranitidine another go might be worth it. A friend of mine has her daughter on ranitidine and gaviscon. Perhaps that might be a way to go to stop her bringing up her feed and allow ranitidine to get into her system?

Thanks again

BookTart Sat 16-Aug-14 15:09:11

I'm not sure whether Domperidone does that too, I know it helps the food move through the stomach faster which might be useful. DD never had constipation with Gaviscon (that's how runny her poo was!) but if you have to give Lactulose as a result it would be a lot of medicine to administer.

Glad you ignored your GP's advice. Orange juice would be terrible for reflux!

BookTart Sat 16-Aug-14 15:11:16

Also, our SR is linked to a cow's milk protein intolerance. Might it be worth trying a different formula like Nutramigen or Neocate?

nocoolnamesleft Sat 16-Aug-14 16:07:59

Ask yr GP about omeprazole? Had much more luck with it than ranitidine, so hopefully could then get off gaviscon. Any problems with the poo before the gaviscon? Or with the skin? If so, then might be cows milk protein intolerance...but less likely if thriving.

Finners81 Sun 17-Aug-14 08:27:44

Hi,

Thanks for your messages. I really appreciate this advice. Milk allergy has crossed my mind, but as you say nocoolnamesleft she might have struggled to put on weight. I won't rule it out though as I know that there can be more subtle symptoms. I don't know much about domperidone or omeprazole. Can these be prescribed by your gp, or a paediatrician only? If you did see a paediatrician, how long did it take you to be seen? Feeling so desperate here. I am in tears most times I feed her as I hate seeing her this uncomfortable!

Re the poo, it's really difficult to tell what is her normal as she changed from bf to formula so young. All remember is that they were loose but normal colour, then became more putty like which is kind of where they have stayed. She was on formula when the texture changed. Is that normal?

Thanks again for your experiences and advice. This is so helpful!

BookTart Sun 17-Aug-14 10:33:49

DD was on the 50th centile at birth but dropped to the 9th until I gave up dairy. She had slight eczema, but terrible feeding issues (also had a tongue tie). She's 7 months now and back just under the 50th.

I think Omeprazole can only be prescribed by a specialist as it isn't licensed for use in babies. We were finally referred at 10 weeks. The wait for an appointment was 10 weeks but luckily the paed's secretary spotted DD's age and they squeezed her in. If your GP refers you it might be worth getting in touch with the specialist to hurry things along so you get seen before weaning.

DD was ebf so not sure about the poo, but I think ff babies are a bit less runny in general.

It is horrible seeing them so uncomfortable, isn't it? Are you getting enough help at home?

Finners81 Sun 17-Aug-14 21:42:11

Thanks for your message. As luck would have it, dd has had a great, calm day. However, I am cautious because this seems to happen in cycles. We get one or two good days then two or three awful ones. Is this normal for a baby with reflux?

I agree it is horrible seeing them so uncomfortable and know there is very little you can do personally to make it better. Not got masses amounts of help. My family ring most days, but they live two hours away. I've been working my way up to doing some classes with dd, but am not brave enough yet because of the issues. Have decided to keep going on with the doctor, even though today was ok because I know this won't last long!

Thanks again for your advice.

nocoolnamesleft Sun 17-Aug-14 23:58:37

The omeprazole (or the CMPI formulas) can be prescribed by GPs, but many not happy to do so (understandably for the omeprazole as it is off licence...but there is better evidence for it than for many things given to babies, and there is a recommended dose in the BNFc aka the drug doses bible). Quite a few seem happy to prescribe if they're also referring (which is really handy, because then the paed can see whether they're working or not!). If not happy to start, then gives more of a reason to refer. Can sometimes be useful to ask "but if this doesn't work, what is the next step?" Worries about reflux don't necessarily need to see a paediatrician, but if not settling then is a perfectly good bread and butter referral (and imho better for babies to be seen and sorted, if things are dragging on)

ContentedSidewinder Mon 18-Aug-14 19:11:17

I am trying to remember back to ds2 and his horrific reflux. It is heartbreaking seeing your baby in agony isn't it?

The HV was a nightmare because my son was gaining weight but only because I was feeding him every 2 hours. He was 10 weeks old and would start the feed (mixed feeds at first and then onto formula) but soon into the feed would start back arching and then screaming in pain. It was awful.

Went to gp who prescribed gaviscon, ds2 was 16 weeks or so but that didn't help. We were then referred onto a paed consultant as the gp would not prescribe anything stronger than gaviscon.

Luckily for us DH had private healthcare so we were seen immediately and also luckily for us, ds2 had fed an hour earlier and managed to sick up clear liquid with white bits of milk right in front of the consultant.

He prescribed Enfamil AR (anti-reflux) formula, it thickened on contact with stomach acid I believe (this was 8 years ago) and we could order into a chemist. He said he wasn't happy to prescribe any drugs until we had tried this route.

This worked for us, it is the weirdest formula I had every come across but we were lucky that our gp was happy to put it on a repeat prescription for us so we never paid for it. That letter came from the consultant to the gp. Ds2 was on Enfamil until he was 14 months old.

The reflux has almost stopped (yes he is 8 years old) it happens at night when he is over-tired.

I know you can get SMA staydown and the likes so you could try that. But I wore ds2 in a sling (ds1 also had reflux but nowhere near as bad) after the bedtime feed he would go into a propped up cot (you can buy cot props that do this safely) and we never really laid him down. He was in a bumbo, door bouncer or on me all the time. I was fortunate that I was a SAHM so he slept on me in an upright position in the daytime. And I had a very understanding 3 year old.

Gooseysgirl Mon 18-Aug-14 19:33:41

OP I really feel for you as we have just been through this with our 9 month old DS. We had a breast feeding disaster so were on formula by 3 weeks. I noticed that he was in pain a lot during feeds but was v happy smiley outside of this. DH was convinced it was mild colic as DD had been grouchy on the evenings at the same age. But when we got to 10 weeks and there was no improvement I headed for GP. We started off on Gaviscon, this helped a little but within days we were back to usual pain during feeding (drawing up his legs, screeching). At this stage I was starting to read up on SR and became convinced this is what the problem was. We have a wonderful paediatric GP at our surgery who prescribed ranitidine for us and it has been our miracle cure smile We administer it twice per day, just under 2ml with 7am bottle and same dose again with 6pm bottle. He dose gradually increased with his weight and by 6 months he was on the current dose. As a way of weaning him off it, the GP has suggested we stick with the same dose since 6 months. Other things see did... Raised the cot at one end, always kept upright for as long as possible after feeding, lots of time in sling and we abandoned our bassinet for the pram and put him on the seat unit early (lying flat but at an angle). I would say definitely push for paediatrician referral. We are very lucky our GP has a qualification in paediatrics so he can prescribe the stronger meds.

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