Hi there,

My wee boy of 3 months has reflux (we use the AR formula which helped that problem) and got diagnosed as also having colic, the doctor wasn't too interested in my list of how my wee man had been feeding or what he does, as soon as he heard that he screams at feeding time he said that he has colic and will grow out of it.

The thing though, is it's not just screaming and fighting at his afternoon/evening feeds as the doctor mentioned, but he does this at any feed during the day, although night time is more frequent.

* Screams when it comes time to putting the bottle in his mouth to feed, is happy up until this point.
* Will fight you to not drink his bottle, shakes his head side to side, kicks, pushes the bottle away, bites on the teat.
* Very sensitive gag reflex (although that has been helped by changing from Avent to Tommee Tippee bottles, as they have a shorter teat). Won't move up to the next size dummy because of this, so he's still on the tiny newborn one.
* Will suck very vigorously for a few seconds then start fighting and screaming again
* Will spit his milk out at you when he gets in this state
* Will drink for a longer period if you distract him, then remembers he's in pain and starts with the screaming and fighting all over again.
* Still has the occasional visual spill, but this was mostly stopped with the anti-reflux formula
* His face looks like he is in absolutely agony while having his bottle, he will just stare straight ahead and clenches his jaw.
* Occasionally he will cry after the feed, but usually it is only during the feed he has the issues.
* Didn't start showing any signs of pain until about 2months

He recently went through a week of being back to a normal happy easy going baby when feeding, but has come back with a vengeance again.

Should i be pushing for the doctor to look further on this and accept it might not be colic, or does it really sound like colic and not silent reflux??

Help this is doing my head in, especially because i have to deal with this by myself and it's horrible seeing him in so much pain and not being able to do anything for him.

Sounds like reflux to me. The difference as I understand it is that colic is screaming for the same period of the day every day. Reflux - especially the screaming at every feed is classic reflux symptoms.

Check out the website: www.cryingoverspiltmilk.co.nz - it has tips and advice etc which is awesome. If your doctor doesn't believe in reflux (and unfortunately there aren't many great gp's who understand reflux) then I would suggest getting a referral to a paed or seeing another gp.

Hi
It does sound like gastric reflux to me but you do need a medical diagnosis of this. You could see another doctor or maybe visit your local family centre for the day, or as you say go back to the doctor you have seen, take someone to support you and be firm about what is happening.

40% of babies with gastric reflux have a cow's milk allergy and the first step recommended is to try an alternative formula. http://www.cryingoverspiltmilk.co.nz/MedicalTreatment/SilentReflux.htm The options are not great and I would suggest that you discuss these with Nutricia as they have access to the full range.

Also thickening feeds like AR is not recommended until the pain from reflux is under control. The thickened formula can stay in the oesophagus for longer, causing more damaage. So moving to a non-thickened formula and adding Gaviscon Infant would be my first step. Gaviscon Infant is meant to be medically supervised under a year of age but is available over the counter.

Have you tried some colic remedies? Weleda Colic Powder is the one recommended by Waikato Family Centre and used in conjunction with Gaviscon they find it quite effective. I never used colic remedies personally but I understand quite a few pharmacies make their own with substances such as dill. Infacol may also be of help and it is actually one of the ingredients in Mylanta P syrup.

I hope this helps.

Sounds like silent reflux to me too.

Something you may wish to read up on (in link posted above) is cows milk allergy - nearly 1 in 2 refluxers are sensitive/allergic to cows milk protein, which would be in the formula that you're currently using. Hence, I would suggest that you get to a Paed to discuss options as you may need to trial and/or permanently switch to Neocate formula and from what I've experienced a Paed will cut to the chase and call the shots on that (my GP, as supportive as he was, and he really was brilliant, met his limit of options with managing Will's reflux - we went to a Paed (privately funded) and came out with hope again, a new med regime, a dietary trial for him & I (breastfed), and a subsidy number for Neocate as the Paed agreed there was a milk protein issue and standard formula was no good for him.). I was able to self-refer to our Paed, but I'm not familiar with whom you have access to up your way (and waiting lists and funding etc).

All the best, keep us posted with how you get on.

My doc gave me the colic routine for 10 months before I was fortunate enough to get a visiting doc who scribed losec. Bub has both dairy intolerance (diagnosed thru hair samples and backed up by great improvement on soy milk) and silent reflux. Both still present at now almost 22 months. Main symptoms were stomach pain, crying, broken nights sleep (had to wheel him upright in pushchair to get to sleep cos lying down was bad with stomach pain/reflux), also swallowed alot which in retrospect I guess was about the acid. In the end he was screaming at the sight of the bottle (pre losec).He also used to get stomach pain and sleeplessness from travelling in his car seat (gone once car seat changed!)
My 2 cents worth is go for that second opinion and consider alternative health practitioner input. My personal realization has been that I have to take a big role in the sorting of what's what with him. And it can be complicated - for example the night crying/stomach pain linked in to dairy and reflux and the car seat too!
Best of luck

Thanks for sharing Nen nen. We can't recommend hair testing because there is not good evidence for it, but 40% of babies with reflux do have a cow's milk allergy so it is important to trial a dairy free diet.

Thanks for all the advice ladies. Back at the doctors next week for his imms, so will try the doctor again, if not i shall move on to one that is more open minded and wanting to listen to what has actually been going on.

Definitely sounds like silent reflux. Colic is screaming in the evenings, at the same time each day, peaks at 6 weeks and improves by 3 months. Sounds like your poor wee one also is afraid of the bottle now too, learnt due to pain association.

My advice for what it is worth is 2 things- try non-cows milk formula eg goats milk formula or hypoallergenic. Also get on to high dose omeprazole as soon as you can (we saw a paediatrician privately, cost about $200)- you may need to go through trying gaviscon and ranitidine first though.

Reflux does do your head in- well, it certainly did mine. It helped me a lot to know it is not me, it is the reflux. I now have my second baby- also a reflux one- and this is much clearer to me. Also I know that any "behavioural issues" can be sorted out once the reflux improves- until then do whatever works!

Good luck with the GP. Colic is a "catch all" term that used to be used for babies that we now call reflux- but that was before effective medication.

Hi jackie - thanks for sharing too. The dairy free diet is definitely worth a go. We do, however, recommend keeping Losec doses as low as possible. The side-effects are much more common with high doses, but if they are needed they are needed.

Thanks for all this information coming in, it is so reassuring knowing that there are others out there going through the same problems.

Yes he does seem to dislike the bottle know, i'm also assuming because of the pain factor associated, he is now drinking less because of this, but thankfully hasn't lost any weight. So hopefully we can get this pain under control before it starts getting to that point.

I have taken him off the thickened formula and gone back to normal formula, while using the infant gaviscon and also infacol as recommended by the pharmacist as he is a ratbag to get wind out of, which then makes things even worse later on, so hopefully this change will be enough to sort things out - fingers crossed!!!

I forgot to ask the pharmacist about how long it should take to start seeing an improvement with using the gaviscon - is someone able to answer that for me please.

Obviously if i don't see an improvement with the Gaviscon, then i will be asking for a referral to a paed. as my doctor said if he hadn't grown out of the 'colic' by his next visit then he would have to prescribe some pretty strong medication which i don't want happening when he won't consider that reflux is the problem.

Don't you just hate it when doctors get something set in their mind and won't listen to anything else

Hi
Use Gaviscon Infant every feed for three days, and if things aren't improving by then, it is time for a review with the doctor. If there is an improvement, but not enough or it doesn't last, then the same plan - see the doctor.

I went to a training session today for practice nurses where one of the topics was infant GORD. The nurse presenting it said it is much more diagnosed now, as it used to be call colic! (That isn't a word for word quote.)

HI Jafa

I hope things are better for you now. I thought I would add my 2cents worth in aswell. The label alot of things colic. My daughter has reflux and is on losec but also still at nearly 12mnths old still suffers from colic. She has it right up untill she was six months old and she would get it anytime of the day or night and would last anywhere from 1/2 hour to 8 hrs and the worse being 12hrs. Her colic came back at 9mnths and that was due too a reaction to diary and the to soy. She still gets it now and then and its usually due too something she has eaten but since she does not react straight away I have no idea what has caused it. They say that if your baby has colic its likely they could be suffering from infant gord or allergies or both.


Good luck I hope things get better for you and the doctor listens.

Take care

We had colicky episodes with William too - I spent hours trawling COSM and other websites trying to figure out if it was colic or reflux (and feeling rather confused by it all). We went to our lovely GP (whom incidentally is married to a hospital paed so he has a great resource there), he said that it can be difficult to distinguish between reflux & colic at times, and instead of suffering through it would be best to (attempt to) deal with the reflux, and hope that the colic settles along with it. For William, he was very windy & cranky, and especially at certain times of the day. My GP said that windy babies are often refluxing (burping-wise), so it's not just a case of "winding" them, but that the reflux needs to be resolved too. William was also very windy fart-wise too, and given his "colicky" patterns of unsettledness, it's quite likely that this was linked to a dietary intolerance (e.g. dairy).

I hope today has been a better day for you!

Thank you everyone, yes today has been a better day - so far, the gaviscon and infacol seem to be doing the trick, fingers crossed it stays that way.

Even daycare have said how much better he has been, with drinking his bottle and especially with getting wind out of him.

He is spilling more now though without the AR Formula, but it doesn't seem to be bothering him.

This afternoon we got home, he polished off the whole 200ml of his bottle without any fuss and went straight to sleep

He has been much better sleeping through the night aswell - he has always slept through, but has tossed and turned in discomfort and needed his dummy and usually woken about 6am, now he is sleeping without his dummy from about 9pm till 7am.

I am now sitting here relaxed and having dinner without a screaming baby in the background

WAY TO GO! No screaming baby = priceless - to misquote an ad or two!

Yes!

I hope things keep improving from here!

hi my name is april and have a 12 week baby rachel who I think has silent reflux. I was having a google about silent refux and found this website.

Rachel takes bottle at first but starts fussing soon after turning head crying and after about ten minutes takes a bit more.
If we offer 120mill may take 90.

Has started drinking alot more at night as does not take much during the day.

It has got worse the last week as is having mostly formula bottles now.

We started off breastfeeding quite well but she started the fussy feeding and we have two other young children and couldnt spend hours trying to feed her. We stopped breastfeeding but gave expressed bottles.

The last two weeks has been mostly formula and have noticed her drinking getting worse.

We have tried gaviscon but no effect on her.

She also difficult to wind have to wind about four times in one feed.

When she feeds can here stomach gurgling and she goes all stiff and cries like in pain.

There are a few feeds she doesnt do this mostly morning and late night feeds.

She is gaining weight ok but we would like to sort out her feeding issues as is getting a bit stressfull trying to feed her.

What do we do now? Change formula? Different reflux medication as gaviscon had no effect. What is neocate? Do we go see our gp to get a referral to peadetrician if we need to see one.

thanks for any advice

hi my daughter rachel 12 weeks has all the same silent reflux symtoms and in the last week has got worse crying and taking less at almost every daytime feed and making up for it at night. She does not bring up but drinks for about a minute goes stiff and cries and takes ages to feed a bottle makes it a mission to feed.

We were breastfeeding but got to hard with her going on and off and then tried goats milk formula but think this has made things worse as seems to be taking less and less during the day.

We went to doctor but all she only prescribed gaviscon even though I told her we tried this for a while and tit does nothing. She did refer us to a peadeatrician after i asked a few times so we have to wait for our appointment.

Does anyone know cost of a private paedetrician in Auckland?

If they prescribe neocate formula is this free or at what cost?


thanks

april

Sorry April, I totally missed your first post.

Sorry to hear things suck, hugs of empathy from me!

We paid $285 for a very reputable Christchurch-based Private Paed, giving us a first consult of approx 40 min including allergy testing via skin prick test. A follow up appointment is $165 and 15-20 minute. From what I've heard from others this Paed is more expensive than an "average" Paed (closer to $200/$220 I've heard from friends using other Paeds though I'm not sure about the length of appointment). I am sorry that I do not know any Auckland contacts.

Neocate, we paid $6 for the tin we left the Paed's office with. I'm actually not sure of the per tin cost though, the first order I did (for baking with) was 6 tins and through our Christchurch-based supplier it cost $21 delivered which works out at $3.50 per tin. I've just placed another order of 24 tins (for drinking & baking) and I do not know what amount will appear on my visa yet. It is a 400 g tin, each scoop is 5 g, so technically that's 80 scoops. One scoop to 30 mL. So slightly different to making up standard formulas (900g? 1 scoop to 50 mL?)

Your GP can prescribe an acid reducing medication such as Ranitidine or Omeprazole (check out the www.cryingoverspiltmilk.co.nz website) though I think you will need a Paed to arrange the subsidy number for Neocate should they deem it necessary e.g. a dairy allergy/intolerance (and given what your baby is bottle fed it leaves you in a stressful worrying state until you are able to see a Paed so I hope you're not kept waiting too long).

Shall be interested to hear how you get on, please keep us updated (and I'll post when I have another Neocate bill ;))

Hi April
As things have gotten worse with the change from breast to formula, my suspision would be a cow's milk allergy. Goat's milk seems to suit a number of babies with GORD but it is very close to cow's milk and not recommended by the allergy experts. I would recommend that you phone Nutricia and talk to them as they have access to all the formulas.

The paediatrician that is mentioned above is one of two in Christchurch who charge very similarily.

Dunners is right that GP's can prescribe other medications but they won't help very much if there is a cow's milk allergy untreated. If you feel things are getting worse, you may need to go back though and maybe take a support person with you - or see another doctor.

So sorry you are going through this.

Jafa - glad to hear things are better.

Thanks Roz,

I wouldn't say things are perfect - when are they ever though lol. But they are much much better than what they were. We still have the occasional battle with the bottle, but i think that is still more the association thing as once he starts drinking it, he is fine. Only problem now is, the frequent spilling, but i would rather him spill and be comfortable than not spill and be in pain.

hi april here
we went to new doc yesterday one where you just walk in and he didnt know much about reflux so prescribed some of that rantithin just guessing on spelling . The chemist didnt have in stock so went home. Got a call from the doc when i got home and another doc had looked at rachels notes and rang the hospital pediatrician who said was ok to prescribe losec to rachel. they have referred us to hospital pediatrian so hope see them soon.

We got our hands on some neocate formula today and am using this natural stuff for refulx called rhuger which i started giving rachel today. Rachel has drunk more of her bottles today and has not screamed in pain only for about twenty mintutes tonight prob cause shes tired and grumpey. Will try losec tommorow as picked it up today.

has anyone found that losec had much side effects? Dont want to make her sensitive stomach worse.

oh well rachel off to bed now so fingers cross for tommorow for a pain free tummie day for rachel

nite

april

Hi april

Sounds like you are getting some help. Neocate may be enough on its own for some babies if the reflux is solely caused by a cow's milk allergy. I guess you need to go by what the doctors have said about whether to start Losec or not. Side-effects of Losec are reasonably rare but more common with higher doses. The main side-effect that our babies seem to experience are wind at night, which can be helped by splitting the dose into two and probiotics. Losec can take up to three weeks to reach its full effect so if you do start it, don't give up on it too soon.

hi april here
we were doing well for couple days than rachel started refusing a couple of feeds during day and sunday would only drink 90ml in morning and no more till the evening.

we took her to hospital as wanted to see pediatrician there. Of course she drank her bottle fine at the hospital. they were quite helpfull put us on prescription for neocate as prob starving though was not crying in hunger much. we have to ring to make apppointment to see pediatrician maybe takes a month.

when we got home she had tiny bottle and than off to bed and had 2 full bottles in the night as is making up for lost time ...

today she has drunk 60mls and is still sleeping (which she doesnt usually do) and am dreading giving her bottle which is due soon. the doc at hospital said that as long as having wet nappies do not have to worry about not drinking so much mmmmm.

rachel on neocate and 2.5 of losec. was readng other posts and this doesnt sound like its enough as she weighs 6.3kg. will have to go to doc again to up the dose if it might help


well we cant do much else and dont think pediatrician can give anything else anyway other than up the dose and test for allergies.

they weighed rachel at hospital has gained 100g over 2 weeks but previously had been gaining more prob cause her feeds are not as much.

i dont want to be an obsessed mother worrying about how many mills baby is drinking but if she misses 3 feeds in one day is hard..

will stay positive and hope things will get better with formula and losec

a

Hi April

Your doing a wonderful job with coping. What brand of losec is it? Im only asking as some babies react to the Dr Reddys brand and find losec which are pink capsules responds better with there babies.

Best of luck with seeing your paed.

Hi April

Is it 2.5mg or ml of the Losec? It can take up to three weeks to reach its full effect so hang in there.

Re the volumes - please don't stress over these. The wet nappies are the most important part whilst she gets on to an effective dose of Losec and gets some effect from it. After that you need to watch weight gain and growth as well, but still not stress about the mls.

Whilst she is on Neocate, having allergy tests won't be of any help except for knowing what foods to introduce in a few months first - but they are generally the same for most babies anyway.

You are doing a wonderful job! Relax and take time to enjoy your baby. It sounds like she is getting reasonable care.

Yay for the progress! And yay for the Neocate. It has done wonders for us, I am very grateful to my Paed for recommending we give it a try.

All the best!

Just an update here - the full effect of the Gaviscon has finally kicked in and we no longer have screaming/crying at feeding time, in fact he now has taken to holding his bottle while drinking it instead of hitting it away and stopping halfway through to have a chat and a smile.

The amount of washing we are going through though is horrendous but as i said i would rather him be bringing him milk back up and to be comfortable rather than in the pain he was in.

Just a question - when he starts solids over the next couple of months will he be bringing those back up like the milk, or will the solid food help settle the reflux down?

Hi
Great to hear Gaviscon Infant is helping.
Solids either make reflux worse or better. Take the volumes slowly, and watch out for those foods that can make reflux worse. http://www.cryingoverspiltmilk.co.nz/Food/FoodandReflux.htm