reflux gavisgon nutramigen and ranitadine

[diseydaly]

Hi there I'm new on here today although I read people's threads all day everyday to get answers to my problems with Ella.

Hope someone can help...

Whilst in hospital for 3 weeks Ella was projectile vomiting everywhere and I had to beg for her to be put on infant gavisgon. Once she got put on it the sickness stopped. Once we got her home she wouldnt stop crying which I assumed was colic and wind and went through every remedy possible. then the more I read about reflux I figured it was the acid part of the reflux that was bothering her now the sickness was under control.

The doc tried to give me omeprozole which was useless as took to long to dissolve. He then put Ella on ranitidine which didn't seem to work although I realised she was at the weight she could get an additional gavisgon so started giving her this which made her constipated so I changed to 1 1/2 sachets. She was good for about 2 weeks which I'm not sure was because of the extra gavisgon or ranitadine. She then became fussy again, hates lying down, grunting with discomfort and being fussy with her bottles as soon as I wind her she won't take the rest. She is on the highest dose of ranitidine she can get for her weight. I have elevated her Moses basket, feed up upright, keep her upright after feeding....... Still nothing was working so I went back to doc who spoke to dietician and got nutramigen 1. This is day 1, first she wouldn't take it because taste then we had to faff about with teats as it was too thick with gavisgon in it even with number 2 Dr Brown teats. So I decided to try missing out the gavisgon as I've heard the formula can make her constipated so didn't want to give her this also..... The last 2 bottles she took a lot better so that's one obstacle sorted as with aptimil I was feeding her for hours trying to get her to finish it.

I'm really looking for advice on.

1. Do you think this is the problem ( reflux and allergy to the aptimil she was on)
   
2. I thought the gavisgon was only to stop the sickness so now that I've stopped this.. if the sickness doesn't come back do I keep her off it..the reason I'm asking this is because I thought gavisgon was only for the sickness and didn't ease the acid so why do babies with silent reflux get offered it. Basically I don't want to stop it if it could be helping her.
   

Sorry so long winded. I'm at my wits end. I'm really not enjoying being a mum....I'm constantly online researching absolutely everything to try and help her and I'm shattered with it all. It doesn't help when people just say "babies cry" I feel like punching them. I enjoy every wee smile I get and can sing away and cuddle her to take her mind off it but people don't realise I don't have time to wash /clean/ shop/ cook..... With her constant crying. I feel like work can't come quick enough so I can get a break.

She has a ped appointment in a few weeks so I'm going to demand an allergy test.

Since typing all this I've put her to bed 4 times and she is more uncomfortable than normal to the extent I don't want to leave her upstairs to sleep... She keeps covering her mouth with her hands and in scared she is sick....

Thanks for reading. X

[BrokenBananaTantrum]

I was prescribed a formula called Enfamil AR for DD when she had reflux. After 2 days she was a changed baby! Settled and not crying / screaming for 12 hours a day. It sounds like you are doing all you can. If you don't see an improvement in a few days go back and see what else is available. It is really hard. It took 14 weeks for me to get a diagnosis.

[diseydaly]

Thanks for your reply. I diagnosed her myself on hospital when she wouldn't lie down and was projectile vomiting all over me but the midwives just laughed as if I was mad. They didn't see how sick she was as we had our own room because we both had an infection so got left to it. It wasn't until they moved her to special baby unit and she was sick over all the staff. Ove just started thinking maybe I need to get her sodium levels checked as she had too high them top low sodium levels which was dangerous and that's why she got kept in even longer and infant gavisgon has sodium as main ingredient.

[Waltonswatcher]

Allergy testing may not help btw, the results are tricky and are just part of the puzzle .Gut reactions won't show either .
I feel for you , my dd had it bad too and our first few months were hell . She writhed and wriggled all over the place . She just whimpered in pain all day , with eyes trying to tell me something was wrong .
You need some support , is your hv good? Mine was amazing and put me in touch with support groups .
Practically I don't have any advice , dd was bfed so I'm lacking on the bottle knowledge . I do know I winded well, fed her as upright as my breast would allow , used a sling , propped the cot ends up and cuddled her as often as she needed it .
Good luck with it all , it does pass !

[BigPigLittlePig]

If not settling on that combo, I would push quite hard for the even better alllergy formula - the nutramigen aa or neocate. Dd1 was bf, had silent reflux from 4w old and it was hell, I couldn't put her down day or night. She was bf, but when I stopped having cows milk, within 48hrs she was a different child. The nutramigen 1 was no good, as the cows milk protein is only partly broken down, so she still reacted.

If she isn't puking, I would leave off gaviscon tbh. It certainly didn't help our silent refluxer.

[plinkyplonker]

Can you ask GP for the liquid omeprazole? I know it's expensive and you might need a paediatrician to prescribe if GP refuses but it worked wonders on my DD who had awful reflux.

[Waltonswatcher]

When is your next hospital apt ?
If she had an infection as you say was she on antibiotis?

[flingingmelon]

My son has been on nutramigen for almost a year, we were diagnosed with CMPI. We had the constipation issues too which for the first few months were hard work to deal with. Hot baths, extra water to drink and patience helped. However don't give extra water without advice from the doctor.

He has pretty much grown out of it now, fingers crossed for you OP.

[flingingmelon]

And just to agree with another poster, once we were on the right formula DS went from being very uncomfortable to a happy little thing after about three feeds. Keep trying different things, you'll get there.

[Gumps]

My dx had silent reflux and the thing that made the biggest difference was the omeprazole. Yes it is a pita to dissolve but worth it. In my experience they won't give you liquid for love nor money. I dissolved half a tablet in a syringe in warm water and squeezed it in. Do a google or mn search for this for more detail as that's where I picked it up.
Neocate is also much better than the other formulas.
You poor thing. It's a horrid time (I look back and it's a blur) but it will pass. Good luck.

[diseydaly]

Thanks folks. Today has been worse than on the normal milk.....how long should I give the new milk to work.....thanks for letting me know the omeprozole was worth it... Good to know and might go back on it.

[BrokenBananaTantrum]

We saw an improvement with DD within a day. Honestly it was the best thing ever. Maybe you could buy a tin and see how it goes then go back to your GP and get it on prescription if it works. It made a huge difference for DD. It is so hard. DD used to be rigid and screaming. Obviously hurting. I remember it was really tough. Will be thinking of you. X

[flingingmelon]

Agree, our milk change solved the problem very quickly.

[Waltonswatcher]

My dd had 3 days with no food and was on a drip , her system cleared itself . My breast milk was reintroduced with no dairy but I think it took at least 2 weeks for the worst of the writhing and symptoms to clear , my milk must have taken that long to get the dairy out .The ranitidine really worked - you noticed it if you missed a dose . I do know the medication has to be weight appropriate - it's easy to miscalculate .
You must keep speaking to the gp ...it may misdiagnosis .
Its horrid that such a special time is over shadowed . Poor you .

[diseydaly]

She has been pm nutramigen as well as ranitidine for past 2 days and is worse than ever... Don't know what to do. Yesterday she didn't have gavisgon as we were trying to do without but was screaming and didn't sleep well so back on gavisgon today and still worse...

[Waltonswatcher]

Why was she in hospital for 3 weeks?

[Dec2013mummy]

Hi, just wanted to say I totally understand how you feel. Ds would fight every bottle, screamed for hours on end, would refuse to be lay down and was generally a very very unhappy baby. I was at the docs every 3 days at least for his first few weeks (actually more like months) and he we hospitalised with a severe skin infection at 5weeks. He spent 7 weeks on antibiotics (iv drip for 2) and I can honestly say I lived him but hated being a mum. I eventually got referred to a paediatrician after 10 weeks ( he had been on gaviscon for a few weeks by this point with the same response at your Dd). The paediatrician prescribed renitidine first and then neocote. 5 days later my Ds was finally a lot happier.

I have to keep going back to have his dosage upped ( as I know when he starts to struggle again) but since starting solids have been able to drop the gaviscon. Whenever Ds has an virus etc (he seems prone) then he struggles a little more. But I now have a very happy and thriving 7 month old who really couldn't be a much happier and content baby. I love him to pieces and those first 4 months are now a distant memory. All I would say is you know your child. Even being a first time mum you know what is right and what is not. I remember crying one night as Ds was screaming and Dh said 'babies cry, it's what they do' to which I said 'no this is not right and I know something is wrong' . He was only trying to be supportive but even he a said how glad he was that I ignored outsiders advice and went with my gut instinct.

When you have it under control it gets a lot easier. Despite saying I could never do it again I am now pregnant again (yes already and yes planned)!

I will be thinking of you. Good luck and feel free to pm me of you need any support.

[Waltonswatcher]

Have you asked about giving no medication and just giving her tummy a few days to adjust to the milk ?

[diseydaly]

I contracted group b strep so we both were very ill and got kept in she the ended up with an infection and her sodium was too low and they were really worried about it. She hadn't been check for her sodium for 3 months and they don't plan to recheck. Should I be getting this checked as could this be a problem... Gavisgon has sodium in it and she is now on 2 sachets. I have never been able to hear the acid in her burbs and today I cam after changing to nutrimigen.

I'm too scared to take her off them incase she gets worse and then they take so long to kick in..

My friend has offered to come round with neocate should I try this so soon x

Thanks so much folks. I'm loosing the will to live. Today I felt like just going to hospital and saying she is not leaving until you sort this!

[Waltonswatcher]

Yes it sounds to me as if you need to go back to the consultant . I think her little tummy has been totally battered with everything . It needs a complete review .
I don't know how to message you personally , but would happily send my number if I could figure it out - shared knowledge is the way forward with these problems .

[HotMommy]

Gosh it sounds like you have had such a hard time! I had a similar experience though not as bad I don't think. My daughter vomited excessively - huge amounts after every feed (more than i thought it was possible for her to have consumed) and then would be absolutely ravenous. I knew this wasn't normal but kept being told its normal for babies to spit up. When she was 2 months old the vomiting slowed down but she started to get extremely upset at feeding time (she was breastfeeding). We had a few months of real struggles with feeding - so upset she would give herself spasms that would last an hour after she had knocked herself out. It was clearly very painful for her to feed which as a mom is so so hard to cope with. She was diagnosed with silent reflux and given gaviscon - but I only gave it to her for a few weeks because it didn't seem to help and made her terribly constipated which just meant another screaming bout every time she needed a poo and I couldn't bear it. Doctors were very dismissive of it and actually said some incredibly hurtful things (such as - I see a lot of older mums (I am 30!!) who can't deal with a crying baby.....).! In the end it was just time that fixed it - after about three months she settled and became a very happy breast feeder. When sje started weaning we discovered multiple allergies - dairy, egg, sesame, tuna, tomatoes, peanuts. At 10 months she was given nutramigen to supplement bm as I was soon returning to work and she needed a milk given she couldn't have any dairy. She did really well on the nutramigen. If I could do it again I would push very hard for a referral to a specialist - a pediatric allergist. Most GPs understand very little about allergies unless they have a personal experience with it. Try are reluctant to prescribe hypoallergenic milks like nutramigen because it is very expensive - but a specialist knows that it is absolutely necessary. Also it sounds like you have been prescribed lots of different things which could be making things worse - little ones can't cope with many different remedies. You need someone who really understands. I now have a GP who has two children with eczema and allergies herself and she is amazing. Hope all gets better soon.

[BrokenBananaTantrum]

How are you? Has there been any improvement? X

[diseydaly]

She was becoming very uncomfortable with the nutrimigen and so she is now on neocate. My friend recommended I ask for it as supposedly if she has an allergy this is the one she will need and both me and Ella were getting frustrated waiting on nutrimigen to work. The doc has also given her omeprazole again but the loser one which dissolves better than the one she had before. Think I'll leave her on ranitidine just now as I'm concious about changing too much. Plus there might be a reason it's not working, I have just read you shouldn't give ranitadine and gavisgon within 2 hours of each other.....

[Gumps]

Great news that you have the neocate and ranitidine. Do you have domperidome too?
I think the gaviscon made things worse but hopefully you will find a combination that works soon.