LittleRefluxers

Hi All,

Posted a few weeks ago my son's situation, and how I have a gut feeling he has a cows milk protein intolerance / allergy. I recently went back to the doctors (AGAIN) and had the rudest doctor tell me that his son's eczema was alot worse than mine, I should come back to him when I get through as much cream as he does, I shouldn't jump on the milk allergy route because its not a joke its very hard and overwhelming and that he is stepping out of this and not getting involved, he will leave it to the peadetracian at the hospital that my son is with He put all his meds on repeat prescription so in his words 'I don't have to bother them with coming back'. He also said he had his opinions but isnt going to confuse me with other opinions so will keep quiet. UNBELIAVABLE! I came away feeling more confused and upset than ever.

I just read an article on intolerances posted on here, in which it says if one is left unadressed it is more likely the child will develop an allergy throughout life. This has worried me even more, especially as I have been to the doctors countless times to ask for a neocate/nutramigen trial to at least rule it out if anything, but they don't listen and say its just reflux and eczema that he will grow out of. His symptoms are, reflux (throws up after every feed, and then continues to throw up pretty constantly till the next) He also throws up solids, but it is alot worse with milk. His eczema is worst around his mouth, face, chin and neck, and spreads to the chest, stomach, back and now legs. He is on domperidone & ranitidine for the reflux, and hydramol & hydrocortisone for the eczema. The peadatracian at the hospital said it couldnt be a milk allergy because his eczema improved slightly with the steroids, but I've since learnt that allergies can be controlled with steroid cream so that is confusing! I'm due to see his pead. at the hospital in 8 weeks, where he will put my son onto omeprizole if no improvements (although I am going to insist on having this earlier as 8 weeks seems along time to be trying to deal with this). Have any of you got any similar experiences and now your child has been diagnosed with a milk intolerance/allergy? Am I being dramatic? I feel completely helpless. Of course I would rather not my son have this but if he has it needs to be treated!

Tasha x

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sorry *omezaparole not omeprizole!

I don't understand why doctors seem to be so reluctant to investigate the CMPI angle to this. It's not uncommon, it affects 2-3% of all babies and 50% of refluxers over 3m old. Of course your son may be in the 50% where it is not a factor and makes no difference, but unless you try it you'll never know. I'm not aware of any signs that mean that CMPI can be ruled out without a trial, although there are some signs along with reflux that make it more likely (family history, gut problems, mucus nappies, skin problems, respiratory problems).

Steroid cream will suppress inflammation and help eczema, it means nothing in terms of underlying cause.

Is buying Neocate yourself for a few weeks an option? You don't need a prescription although it is expensive. If you see improvements then at least you'll be armed with information to demand that they prescribe it.

My GP more or less insisted that Matthew couldn't be CMPI, it was only through reading up about it on here and in Colic Solved that I decided to trial dairy free (easier for me as I was breastfeeding) and it made an enormous difference. I think the GP is still sceptical about it. When I finally saw a dietician they were not in the least surprised and said she'd seen 3 CMPI kids that morning, she didn't understand why Drs are so dense about it either.

You may still find you need omep even if you get big improvements with Neocate. In your shoes I'd try to get your appt brought forward to say a month away and off your own back do a Neocate trial for that month, then you can present your findings to the paed and if the meds are still not enough ask for omeprazole as the next step.

It shouldn't have to be this difficult!

Jen x

I don't understand either, he is a week away from 6 months old and it has been getting worse not better, yet i get the same 'he will grow out of it, don't worry, we don't tend to worry until he is 18 months' it's all becoming hard to deal with, desperately want some needed answers I feel like browsing on here is the only decent answers I can get! Thankyou for the information, I feel when I go back to the doctors if I have statistics etc, they take a bit more notice to me! It is an option, if it helps I don't mind spending the money to get it on prescription in the long run, I've been going over and over it for weeks because part of me is afraid to try it and it makes things worse, I guess its that 'reassurance' when a professional tells you that's what you need! Although with everyone I've seen so far I think that buying it myself is pretty much my last option. Where can I get this from, is it in supermarkets or do I need to go somewhere specialist? Also, I weaned early at 5 months on advice from the pead. at the hospital, just basic firsts sweet potato, carrot, banana, pear etc etc, I'm under the impression that soon he will start to need dairy in his diet for calcium but I'm frightened to add any into his diet such as cooking with cows milk or offering yoghurts, do you have any advice on how to go about this? I mean I guess seeing how the neocate goes would be the first step? Everything is becoming so overwhelming!

Thanks again,

Tasha x

If he is still having formula milk then you don't need to worry about calcium. Neocate etc would only be available from a pharmacy and they would probably have to order it in for you, but you don't need a prescription from a doctor to buy it. I think you need to establish if the CMPI is an issue or not, if not then you can happily introduce dairy from 6m, if it is then obviously you need to avoid this and you may need some help from a dietician to replace the "dairy shaped hole" in his diet as he gets older.

If you email me jennyrawling@f2s.com I have a review paper on reflux and CMPI that may give you the stats you need to back up your argument.

Oh right ok thankyou for the info! Will get down to my local chemist this week, hopefully this will be a step in solving his problems.

Yes that would be a great help thanks I will email soon x

Two years ago i was back and forth to drs with blood and mucous in her nappies alongside reflux symptoms. I did my own research and read about cows milk allergy,when i mentioned it to hospital paediatrician he said the only "true" allergy is gluten and the gp said ooh ive never heard of cows milk proteins before. Anyway i cut out my diet and within three weeks all blood mucous and reflux symptoms had resolved!!
the paediatrician had said the blood was from an anal fissure caused by constipation btw!!
Bizarely with my 2nd daughter who is 10wks old and a silent refluxer the same hospital advised me to cut out dairy on our first appt! I told them about my experience with my first daughter and they said they have recently had a lot of training and updates on the link between intolerances and reflux. Ie 2yrs ago they were oblivious and now they suggest it to everyone!
they also said that it sounded like my eldest had classic cmpi symptoms! I was lucky i was breastfeeding and could take matters into my own hands and eliminate the dairy.
Unfortunately gps have to be a jack of all trades and cannot be expected to have indepth knowledge about every condition. However a good gp (such as mine):will admit this and be open to suggestions and new theories etc. Sounds like you have an awful gp and i would be very tempted to complain.

I agree it should not be this difficult for you/us we shouldnt have to feel we are bugging them all the time. But we have to keep battling for our babies sakes.

Oh really, yes shows how the knowledge of certain things differ in GP's! Its so frustrating as I have been back & forth to my local GP's and have seen numerous doctors and each one has just fobbed me off with the same sort of reasons. basically saying I'm overreacting, well that's certainly how they made me feel! The last doctor I saw, the one I mentioned, was by far the rudest & yes I did complain, I refuse to see him again he was awful! It's hard to believe GP's can be like that when you feel they're the only people you can turn to with such issues. Although the pead. at the hospital was quick to dismiss the milk intolerance/allergy he was the nicest we've seen so hopefully when I go back after trialling the neocate formula he will help us from there. I'm just gutted I didn't put two & two together when I was breastfeeding and cut out dairy then, switching to formula is the most regretted decision I've ever had to make and I'm always thinking if I'd only just known!

My son's never had the mucousy nappies, which one GP used as an instant 'well it can't be a milk allergy then' but I'm not convinced. He's also never lost weight which the amount he throws up you would never believe, so because he is technically thriving I rarely get taken seriously, it was only when he started to throw up blood that he was hospitalized and put on medication etc.

Thanks for your reply, it's good to hear other experiences as some days I feel completely alone on this!

Tasha x

Hi Tasha, I joined the site today and completly empathise with feeling alone and also the lack of knowledge in some GP's (Im sure not all are useless) I pretty much diagnosed my daugher myself after extensive reasearch with good old google!! everytime I went to the doctors they made me feel like I was an over reacting first time mum because she was putting on weight (not much though) I sat in my GP's office and refused to move until they reffered me to the hospital I was sick of the word colic which tends to be over used when they dont know whats wrong with a baby. I thankfully now have the support of the hospital and have been given neocate (day 7)and omeprizole (day 2) but things are horrendous ranitadine did not work and I am wondering if there will ever be a good day! so glad I have joined this site for some support. xx

Hi Sarah. I have pretty much done the exact same, diagnosed him myself! Its that gut feeling that just eats away at you even when every GP fobs you off. Totally get the colic thing too, thats what they kept saying about my son when he was newborn, anything that seems to be wrong with young babies is 'oh its colic'!. Glad you now have the support from the hospital (and on the site!), at least that weight has been taken off your shoulders :) I hope things start to improve, I also feel like there is no end :( I'm soon to go back to GP's with some facts and figures to insist a trial of neocate and to be moved onto omeprizole quicker as my hospital follow up isnt till 8 weeks time, far too long to wait! He is 6 months old, I need to know if it is a milk intolerance to ensure he gets a good diet!

Take Care xx

Tasha - I have had the exact same experience as you.  The only way I got my GP to listen and refer us to a paediatrician was to write a detailed diary for a day of when and what he eats, noting every time he vomits, ranking the severity from 1-5 and detailing what he was doing at the time.  It was a pain in the backside for a day to keep the paper and pen to hand and note the time etc but worth it in the end because they realised what I was actually talking about.  I also took along some of the articles that have previoulsy been posted on here and found elsewhere on-line which show that 50% of babies refluxing beyond 3/4 months have an underlying intolerance and that it is the exception to the rule that babies under 1 year old with cmpi have symptoms as severe as weight loss/diahrrea.  The same document also set out clearly his history of what his symptoms when and what medication was introduced when and the effect.  I also set out a list of the weaning foods we have tried and how they have been tolerated (lots have not been tolerated).  For me writing it all down ensured I didn't miss anything out and allowed me to organise my thoughts because otherwise when I get in there I get so flustered in my eagerness to tell them everything I worried I wasn't being very coherent!

The one factor which convinced our paediatrician that Harry has cmpi was that the paediatrician recommended taking him of Aptamil comfort formula (which is partially hydrolysed) and onto regular formula with carobel.  His reflux symptoms became far far worse with the first bottle and that brought on his eczema which he had previously not sufferred with. We are now 6 days into Nutramigen.  If buying formula yourself shop around for the best price.  We had to buy our own for the first 3 days and there was over £4 difference between Tesco and Asda pharmacies (Asda was the cheaper) which is a huge difference considering each tin only lasts us 2.5 days (on 5 6oz feeds a day).

I think if a child has reflux and/or an underlying intolerance as they get more mobile it gets worse because of all their wriggling and teething.  It all seems to come at once, so I don't know why they all think they will grow out of it or improve after 4 months!  For us it's got much worse!

Hi Laura, I will definately do a day diary, it seems like a v.good idea, everytime I go to the doctors I come back thinking damn i forgot to say that or that! Is your son sick alot? I feel a bit alone on the sickness sides of things as most people I've spoke to have been more silent reflux with pain, rather than what seems like constant sick, my son will just throw up everything in large quantities, its a miracle he's managed to gain weight and thrive! (Obviously very glad he has!) That's interesting, my son Arlo is also on aptamil comfort, the GP has never suggested that though but can see the theory in it, I dread to think what he would be like on 'normal' formula seeing as his reflux and eczema is so bad on the comfort as it is! I am in process of deciding whether to order in the noecate formula myself and trial it then isnsit on getting it prescribed, or booking another GP appointment with some documents and statistics I've found and insisting them to put him on the neocate there & then. Yeah totally agree with it getting worse, my son's just cut his first tooth and although he wasn't to irritable, the reflux got alot worse in the week before, and he wriggles so much when im trying to burp and keep him upright that I'm sure he makes himself more sick!

Hopefully there is light at the end of the tunnel for us all,

Tasha x

Yes - he is very sick.  Differing amounts but fairly constant.  On the day I recorded it he was sick literally every 5 minutes when he was awake.  Thankfully it doesn't seem to bother him and he often laughs after he's done it!  It just makes life a bit difficult getting out the house some days because you just dread him being sick wherever you go!  I think you just need to keep going back to the GP and if they are not giving you what you want ask for a referral to a paediatrician.

Harry is also thriving and in fact has jumped from the 50th to the 75th percentile this last month which I am sure is down to having the new milk for the last 2 weeks.  From my experience, GPs spout the thriving and putting on weight because they fundamentally don't understand the milk intolerance/allergy issues.  My GP didn't even know the difference between milk protein and lactose - I had to explain it to him.  So if GPs think milk issues = lactose intolerance then our LOs will certainly not be meeting their expectations for weight/thriving issues. 

Good luck and let us know how you get on!

x

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