Reflux/Milk/Gaviscon - A few questions

Discussion in 'Baby & Toddler' started by Sarah3, Jul 29, 2013.

  1. Sarah3

    Sarah3 Well-Known Member

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    Ive re-written this post several times now, trying to explain why i have these questions and whatnot, but when i do, the post is just tooooo long, so i'll just cut to the chase :)
    We have an appointment with our 'proper' GP in a few days, and he will be referring us to a paediatrician, but i would love to know your thoughts on a few things, since we saw a different doctor recently and they didn't exactly fill me with confidence :roll:

    Our LO has both silent and 'normal' reflux, which started around 4 weeks old. He is currently on Infant Gaviscon and Ranitidine.

    Firstly can anyone point me in the direction of a list of dosage amounts for the ranitidine please? Ive looked about, but cant find it anywhere. When GP prescribed it he said LO was on minimum dose for his weight so it didn't matter if we went a little higher, but i cant remember what he said the max dose was, and don't want to give LO more til i know its the proper amount. Asked other GP but they looked at the info and for some reason they couldn't work it out (???)

    Also GP said we should give extra Gaviscon, said it was fine to put 2 sachets into 140ml as long as we didnt go past 12 single sachets a day :eh:
    LO is currently on one single sachet in 140ml, and he usually only takes 70ml at a sitting (very occasionally has been known to take 130ml so its always offered just incase). I dont feel comfortable putting 2 sachets into that little milk when the box says otherwise, so im not, but what i was wondering is this;

    Ive read about people suggesting to give the extra milk so you can put the two sachets in, but in my mind there doesnt seem to be a point? It seems to be double the Gaviscon, but double the milk, so surely the ratio will be the same and wont make any difference? Or am i not thinking about this properly? I dont mind wasting the extra milk if it infact will help LO feel better.
    Anyone else been told to put 2 sachets into less than the stated amount of milk?

    GP said LO was too young to be trying hypoallergenic milk? Lots of allergies and dairy intolerance in the family so thought it was worth a try, just to rule it out before LO is put on yet more meds? Incase we're treating the symptoms rather than the problem if you see what i mean. He doesnt seem to have any allergy symptoms so was thinking intolerance if anything. Do you think its worth asking our normal GP about or am i clutching at straws here?

    Hmmm...this is quite a long post anyway, eek, sorry...if you're still reading and havent fallen asleep, thank you in advance :)
     
  2. littlemonkey

    littlemonkey Well-Known Member

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    Personally I would wait until you see the paediatrician so then you will actually speak to someone who knows what they're on about. Ranitadine is meant to be the next medication up from gavisgon if there was no improvement on gavisgon, my understanding was that if baby is taking ranitadine, there's no point being on gavisgon.
     
  3. Little_angel

    Little_angel Well-Known Member

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    I see where you're coming from littlemonkey, but I don't think that's the case. Gaviscon is the "first line" treatment and rantidine the "second line" but they work in different ways and therefore could be more effective in combination if neither is working alone.

    Sarah3 - the dosage will be readily available to every GP in the BNF (a book they all have). I can't believe any GP can't tell you what it is! I don't have a copy of the BNF here and it costs to access it online, but this site suggests that the dose for treatment of reflux is 5 to 10mg per kg body weight per day (total) divided over 2 doses. The info on that page looks good but personally I'd want to confirm it in the BNF.

    I wouldn't increase the concentration of gaviscon above the recommended amount either (your reasoning looks good to me). Gaviscon has a tendency to constipate and in a smaller amount of liquid I would think this would be even more likely. It also makes milk thicker and at some point will present a choking risk, although it's unlikely to go through teats if it's that thick! I'm not sure if there would be any other effects.

    If you're concerned about lactose intolerance, you could try Comfort milk (aptimil or SMA), which is low lactose and available to buy in boots and supermarkets. This is slightly thicker and I've seen advice online not to use this with gaviscon, but I checked with the aptimil careline and used them together for a while without any issues.

    I hope you find something that works for you and your LO soon xxx
     
    #3 Little_angel, Jul 29, 2013
    Last edited: Jul 29, 2013
  4. Lynds77

    Lynds77 Well-Known Member

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    Ranitidine is age and weight dependant

    My girl is 10mnths and 8.3kg and is on 1.7mls 3 times a day which I believe is a max dose

    don't google to find the doseage. I did this as I thought doctors had given me the wrong doseage. I got a 2nd opinion and turns out the advice I found online was wrong and my doctor was right.

    It contains alcohol so you have to be very careful with the doseage
     
  5. Sarah3

    Sarah3 Well-Known Member

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    You dont need to worry, as i said in my first post we have an appointment with the GP soon, and i wouldnt mess around with meds etc before i'd spoken to him. And even then, i'd get a second opinion from another doctor if i wasnt sure about anything. I dont like giving LO any meds in the first place :( Just want to reassure people incase they think im running about randomly doing things!

    Really just wanted to hear peoples thoughts in the mean time, especially since talking to the last GP did as much good as talking to a ceiling fan, but you assume they know what theyre talking about to a degree, so i think i was all confused and tired - sorry if i didnt explain things properly.

    Thank you all for taking the time to reply by the way :)

    littlemonkey - We cant wait to speak to the paediatrician, as you said they'll know what theyre talking about, so hopefully we can get something that works for our baby boy. Just wish we didnt have to wait for a month, but its better than no referral at all.

    Little_angel - Thank you for the link in regards to Ranitidine - i was sort of hoping there was some official guidelines i could access to jog my memory - couldnt believe it when the GP was looking at what i now assume was the BNF you mentioned, and told us he couldnt work it out! Then said to add more Gaviscon instead!

    Lynds77 - Was asking about ranitidine info cos the doctor that prescribed it said 'use this much, but the max dose is this much, so you can give a little more if needed as long as you dont go over this much' (but in more detail and actual numbers :) And i can only remember the min dose, so just wanted to remember the 'dont go above' amount, but since i cant, and there arent any official and reliable numbers to refer to, im not going to do above the minimum and i'll talk to our GP at the appointment. Hope that all makes sense lol. LO has grown anyway, so even the max dose for that weight might not have done any good.

    Id never risk doing anything without a medical professionals advice when it comes to my LO, dont worry :)
     
  6. MrsV

    MrsV Well-Known Member

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    Hi Sarah3,
    My baby girl suffers terribly with silent reflux and I could write all day on the subject. She's tried Gaviscon, ranatidine, Domperidone and is currently on omeprazole. Her formula was switched to Neocate after suspecting a cows milk protein intolerance. She's better than she was but we're far from fixed. I got little sympathy from the NHS and had to take her privately to a paediatrician who specialises in dietary conditions as I couldn't sit out the referral time - she was constantly miserable. Anyway, a lady on here recommended a book to me called The Sensational Baby Sleep Plan by Alison Scott-Wright. It has a massive section on reflux and she really knows what she's talking about. I nearly cried when I read it as finally someone had printed in black and white what I was experiencing. You may already be aware of it, but thought it worth mentioning, as it made a big difference to me x
     
  7. littlemonkey

    littlemonkey Well-Known Member

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    I really do feel the same MrsV, it feels like I am banging my head against a brick wall sometimes with some of the doctors I've encountered. The worst thing is people's attitude that we have just made the whole reflux thing up, it's almost as if we just decided he had reflux and then demanded things from the doctors! When in fact we put up with a baby who screamed every evening and just accepted the doctors diagnosis of colic and it would be something he would grow out of until at four months he refused his feeds all the time. It was a doctor who suggested it might be reflux, not us!

    Comments I've had from various doctors include All babies are sick, it's normal and They didn't have any of this reflux in my day, he would just have been a sicky baby. And my favourite this weekend was if baby was breastfed he wouldn't have this problem!!! No if baby was bf he wouldn't have this problem cos he would have starved to death a long time ago cos I couldn't do it!!! I honestly was so glad it was my OH who spoke to that muppet cos otherwise I'd be in jail now or murder!
     
  8. MrsV

    MrsV Well-Known Member

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    In my fight for the right treatment for Ada I've found many a parent in similar despair little monkey. I was told that she was "thriving". She's dropped off her curve considerably and the only reason she's not underweight is because I persevere with every feed. I wasn't able to successfully breastfeed and beat myself up about it for ages until I read that reflux babies often struggle to latch. She used to scream her head off and we'd both end up sobbing. I know refluxers who are being breastfed though, so it doesn't necessarily mean that would have helped. I've been advised to try and wean at 4 months. I really hope that helps. I'm also looking into taking her to a Bowen Therapist. I'll try anything. We had a very bad day today x
     
  9. Lynds77

    Lynds77 Well-Known Member

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    burst into tears reading that. I didnt know that reflux babies were harder to latch on? we struggled for 3 weeks. She would scream her head off and rarely latch. I too would end up crying my eyes out whilst hubby gave her a bottle cause I couldnt get her on. Or if she did latch she would fall asleep straight away, or come off after a few seconds and start screaming. I know i had a good supply so it wasnt that.

    I held off the weaning. Gave her a spoon of baby porridge after every bottle at about 5mnths or so, but didnt really start weaning till 6mnths. Then her teething made her reflux worse so i was struggling to get 9oz of milk into her some days. So I stopped the weaning for a while as the milk was more important. finally got going with it again at 7mnths

    strangely, she got rotavirus at 7mnths. She was poorly for a week. She was still asking for milk, so I kept giving it to her. Of course she threw it back up most of the time. Anyway, once that bug cleared she suddenly started draining 8oz bottles again and eating very very well!

    so that awful bug seemed to have done us a favour?

    good luck to you all. we are over the worst of it now thank goodness, but I remember those days battling with the bottle very very well. x
     
  10. MrsV

    MrsV Well-Known Member

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    Thank you Lynds. Big hugs x
     
  11. Sarah3

    Sarah3 Well-Known Member

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    So true, we've had our fair share of 'it'll just be colic' and 'all babies spit up' and of course the dreaded question 'Is this your first?' Then seemingly getting completely brushed off after answering 'yes'....We know when something isnt right with our babies! Its so hard trying to get people to take you seriously, we've even had a doctor say it absolutely isnt reflux because he wasnt throwing up! And of course the attitude that you're some kind of drama queen, and that it cant possibley be as bad as you make out :(

    Me and OH have had to take sleeping in shifts, OH is at work for 12 hours a day, and we're both running on about 4 hours of sleep a night (and have been since LO was about 5 weeks old), because the only way LO can sleep longer than half an hour is on somebody. We can get him to fall asleep anywhere, but then he refluxes in his sleep and wakes up screaming if he's anywhere but on us. It'll still happen when he's on us but i guess it's easier for him to be comforted and fall straight back to sleep. And i feel so guilty sometimes because on the really bad days i get jealous of OH being able to go to work and get away from it for the day :(
    Not even friends and family really understand though, they visit for an hour or two so they get the 'distracted' version of LO, and i think even they think we're making half of it up when we tell them about the sleeping, the pacing the floor with them for hours at a time because its the only way to keep them calm, the constantly being slightly on edge even at good times because you're waiting for it to all go pear shaped again, feeding times being a constant battle, etc etc

    MrsV how did you go about finding a paediatrician privately? Im not sure i'd know where to start? The thought of having to wait for a month fills me with dread, especially since i suspect it'll be even longer - they referred LO to sort out the tongue tie, told me it would be a couple of weeks, but it took two months, by which point i'd had to switch to bottle feeding, and since i was no longer breast feeding they then wouldnt do anything about the tongue tie in the end because he was 'feeding fine'.

    And i will absolutely be getting that book, i've not come across it before, thank you :)

    Its just so frustrating not being able to do anything for LO, it gets me so upset that i cant fix this for him - big hugs to you all, i hope you manage to find something that works for your LO's
     
  12. Sarah3

    Sarah3 Well-Known Member

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    Oh, also MrsV, if you dont mind me asking, was it the doctor that suggested the Neocate or did you have to push for it? Thats the kind of milk i wanted to try with LO when we got told LO was too young for it....baffling....
     
  13. littlemonkey

    littlemonkey Well-Known Member

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    Sarah, it drives me mad when people who only see a snap shot start offering their advice. Even the family keep coming out with 'he'll take more when he's hungry'. This has been going on for weeks and he bloody doesn't take anymore when he's hungry! Aaarrrggghh! I'm really not in a good mood this morning after battling with my son to get him to take 3oz in an hour! I'm starting to dread every feed that it will just be an hour long battle every time. He's slipped from the 91st centile for his weight to 75th, HV says I shouldn't worry cos it's still above average. But I do worry cos he's off the charts for his height he's so tall and I can see his wee ribs in his back!!! Aaarrggghhh! Just wish the wee bugger would drink his milk!
     
  14. MrsV

    MrsV Well-Known Member

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    I have no less than 6 friends whose little ones suffered with reflux who were able to prepare me for the battle that was to come and also recommend a paediatrician. However, if you search for your local BMI hospital, then search under the list of services for paediatrics, there is likely to be a listing for diet related conditions and details of the consultants. You can then call and get a quote for an initial consultation. (Think ours was £250). If you have private medical insurance, it might well be covered. If not, do tell the doctor that you're self-paying as ours took sympathy and gave us a discount (we've since had Ada added to our Bupa cover).
    Another place to search would be on the littlerefluxers forum. I think they're compiling a list of recommended professionals.

    After examining her, our doctor thought that Ada's reflux was likely to be caused by an intolerance to cows milk protein. He could see how desperate we were and prescribed Neocate as a quick fix for us. I don't like giving it to her as its so synthetic, but we did see an improvement quite quickly. It's very expensive, but once prescribed privately, I gave that to my GP and said I couldn't afford to buy it so they (begrudgingly) gave me an NHS prescription for it. It was so refreshing to talk to an expert in the subject, who knew exactly what we were going through. I could have leant across his desk and kissed him!

    I fear now that Ada already associates the bottle with pain. So some of her reaction could be fear, rather than pain. We're having a barium swallow X-ray next as that will show whether the oesophagus is still damaged and causing her severe pain, or whether its now behavioural. 15mg of omeprazole should be really helping with the acid. If the X-ray shows no damage. Then we'll be referred to a speech therapist who will watch Ada drink and see if there are ways to help.

    A week ago, Ada was the worst she had ever been. Absolute inconsolable crying. We ended up taking her to A&E where we waited from 8pm to 3am to see a registrar who told us that she would grow out of it by the time she was 1 and to maybe give her some paracetamol. You can imagine my sleep-deprived reaction. Your dreaded first question is spot on Sarah!

    I hope the book helps you. It's my bible now. And rememember that you're not alone; you know your baby best; and as hard as it is, there is an end in sight. xx
     
  15. russellmuscle

    russellmuscle Well-Known Member

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    I had to fight with my docctors to get a diagnosis of silent reflux for J even tho it was blatantly obv something wasn't right they just kept dismissing reflux because he wasn't being sick and I threatened to take him to a&e they finally gave us gaviscone but there was a manufacturin problem so we ended up riding it out. Thnk god it stopped at 8weeks.

    I believe the when gaviscon & ranitidine is used together, the gaviscon is to thicken the milk & stop the sickness - my nephew had pyloric stenosis as a baby and had to get an op then he was on gaviscon ranitidine and carobel.

    xxxxx
     
  16. MrsV

    MrsV Well-Known Member

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    We've just returned from a session with a Bowen therapist. Ada screamed her head off in there, so it definitely had an effect - I just hope it was a positive one! I'll let you all know... Her 4pm feed was the easiest it has been for some time, but that could just be because she was tired. I'm not going to get too optimistic yet x
     
  17. Sarah3

    Sarah3 Well-Known Member

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    littlemonkey, hope you're having a better day today so you get a bit of a break...

    MrsV, thank you for the info about finding a private paediatrician, milk etc - and please do let us know if the Bowen therapy made a difference :)

    Sorry this is very rushed, difficult day today, but didnt want it to seem like i'd vanished :)
     
  18. Squeakz

    Squeakz Well-Known Member

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    hey...my lb has cmpi and 'normal' reflux. well im not going to 'bore' you with our story because tbh it sounds exactly the same as yours so i know your pain and suffering as well as your lo's.

    my experience with gps has been exactly the same. you are also well within your rights to ask for a referral and get it to someone who specialises in children. We got told, its colic, cmpi doesnt exist, all babies cry, all babies spit up one GP told me thst it was ME who was making him cry because i was crying because HE was crying erm THE WORKS.

    Our paed put us on omeparazole, ranitidine and we still use gaviscon. My lb was 24hrs from having a feiding tube permanently (well for long term use).

    Someone recommended hazelwood necklace sand it may have been a coincidence but within 24 hrs of him having worn it stopped. well the vomiting hasnt - hes almost 7 months and vomits a lot but less than before as hes being weaned) but the screaming was all gone! id deffo recommend them as well to at least try and if it doesnt work then its not ridiculousy expensive £18.00 pand p.

    All i can say is FIGHT for it and dont take any crap. i once refused to leave the gp surgery until i had certain prescriptions and referral and also called the PCT when they refused to put it on repeat. both worked wonders at least until we had seen the paed.

    also there are a couple of groups on fb that are realyl helpful Babies with reflux and silent reflux and babies with reflux.

    I can always add you but its nice knowing that there are other families going through it, because they are international theres always someone online and we get to share the advice and information we have been given.

    Oh and 17 weeks is NOT far too early. DS1 was diagnosed cmpi at 9 weeks.

    X
     
  19. Squeakz

    Squeakz Well-Known Member

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    oh and iv also heard cranial osteotherapy is incredible to as well as bowen! x
     
  20. MrsV

    MrsV Well-Known Member

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    I've never heard of a hazelwood necklace, thanks squeakz - I'll give it a try. Will also look up the groups on FB.

    Having a hard day too Sarah. It's just taken me an hour to get Ada to take 2oz... :-(

    I'm going back the the Bowen therapist on Tuesday. I didn't really expect it to work instantly. I had about 4 sessions to alleviate my lower back pain when pregnant... The lady I go to is very spiritual and uses a crystal to douse. I've always been a bit sceptical about that sort of thing, but went with it. She said (off record) that the medication is helping, but that Ada doesn't like her formula. Not sure what to do. She's been on Neocate for 7 weeks now and we saw a fairly quick improvement from that and starting the omeprazole at the same time. But after a few weeks of improvement, she's been on a slow decline and the last two weeks have been especially challenging. I thought Neocate was the ultimate in formulas in that it contained nothing that could harm... In fact, I'm sure the paed thought it the ultimate combination to give us fast results... Which I guess it did, but the effects don't seem to be lasting...?

    I'm also tempted to try switching from 3 hourly feeds to 4 hourly. This goes against all advice I've ever seen for reflux, but she just doesn't seem hungry every 3 hours, even though she's currently only taking between 2 and 3 oz per feed. Has anyone tried this? Ada's 14 weeks today...

    I'm trying to put a brave face on it for Ada's sake, but fear my tears might be giving me away x
     

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