Should I go for a dairy free formula? Anyone use neogate?

[cmcgmum]

My 13 week LO is having a really hard time! I stopped breastfeeding at 4 weeks & have tried loads of formulas due to constipation! Had to be medicated on lactalose. Finally settled on SMA lactose free he takes about 5ozs in a feed of it & constipation settled. Also suffers from reflux so on gaviscon for that.However the last two weeks he has been so upset again. Wakes up early hours of the morning, constant bottom burps, gurgling tummy, stuffy nose & cries in pain! Tried warm towels, baby massage etc! Is it possible the lactose free isn't enough anymore?

[Happyface82]

I would try Neocate or Nutramigen. Sounds exactly like K when she got diagnosed with dairy allergy. Lactose intolerance and allergy to milk are two different things. At the end of the day there is no harm in trying and seeing if there is a difference.

Good luck!

[cmcgmum]

Thank you, Doctors bit reluctant to give me it & keep making me feel like I'm selfish for wanting him to sleep, telling me it's colic & he will grow out of it! But that's not the case he's so uncomfortable!

[Happyface82]

Could you buy a tin or two and see if it helps and then go back with some facts? GPs are not paeds. They don't know much. There is no such thing as colic at 13 weeks.

[~Emma~]

I dont think you can buy Neocate OTC, it has to be prescibed by the doctor. We had a hard time getting ot from our health service too. We got there in the end though.

 Are there any other symptoms like eczema? Mucous poop?

 Could the reflux be playing up again? Sometimes the Gaviscon isn't enough to keep relux symptoms under wraps.

 

[Happyface82]

We have bought Nutramigen and Neocate over the counter before, you can buy it but its very expensive. I just think its worth it if it proves to your GP that your LO needs it.

It could also be that you need to up the dose for reflux but lots of gas is not a reflux sign though? Have you introduced anything else that could be bothering him? In any case I would give a dairy-free milk a try. Got nothing to lose.

[Zoey]

I would wonder reflux pain too.  Gaviscon is such a mild medication and not very effective in babies with significant GERD.  I'd start there.  Around 12weeks is peek time for reflux to act up.  It could be his reflux is just untreated.

Wyatt has been on Neocate since 4 months - however he had massively bloody stools (hidden blood, so his stool needed to be tested to see it), and tons of mucous, along with vomiting, and intense bouts of hysterical crying from pain.  His bowel was so inflamed, he would grunt constantly because it felt like he had to poop.  We have a prescription for the Neocate, and it took 5 months of fighting with the insurance company and an appeal to finally get it paid for.  From the company that makes it, Necoate is 36 dollars a can, which makes approx 48ounces of formula.  We started with Zantac, then PPI, then Gentlease formula, Alimentum/Nurtimigen, another PPI change (to Prevacid solutabs), and he continued to have bloody stool, so we moved to Neocate and the blood stopped after two months.  He was on Zantac twice a day, Prevacid twice a day, and thickened Neocate (to help give it weight so it wouldn't come back up so easy).  Recently, we have weaned the Zantac, and stopped thickening the Neocate, and plan to start weaning the Prevacid next month, but he will be on Neocate until after his first birthday, when we will slowly trial milk.  I'm glad that his reflux appears to be resolving, and I pray he does well when we trial milk.

Lactose intolerance and milk protein intolerance are two different things.  Lactose intolerance being the intestines reaction to the sugar in milk (lactose).  MPI is an immune reaction (allergic) to milk protein.  Reflux and MPI are also two different things.  Sometimes reflux is caused by untreated MPI, but not always - most often its because the muscle that closes over the tummy to prevent the tummy contents (food and acid) from coming up into the esophagus, is immature in babies.  

If this is truly a milk protein intolerance/allergy, you will probably need to have baby on Neocate for about a month to actually see results as it takes a lot of time to heal the damaged caused by a true intolerance/allergy.

Is there any way you can see a pediatrician?  Or, have a DR test his stool for hidden (Occult) blood.  I'd say asking to try Zantac, or a PPI is a fair request from the Dr, and a good place to start at this point.

Best of luck, I hope something here is helpful.

[~Emma~]

I agree with zoey. Given that your doc has already given gaviscon for reflux too they should be more open to listening to your concerns iyswim. Painful gas can be associated with reflux due to improper eating habits stemming from reflux pain.

[lisa6464]

My daughters symptoms were very similar sounding to yours. Stuffy nose , coughing after feeds, red cheeks, runny bottom etc. Because my son was diagnosed with milk protein and Soy allergy i recognised the symptoms in her straight away.Thankfully i insisted on a 4 week trial of Neocate and the G.P agreed. Most G.Ps are reluctant to prescribe it as it is really expensive. Nutramigen is cheaper but as there is Soy in it and milk protein's in minute amounts some babies do react to it still. Mine did!. So to avoid weeks of trying formulas i asked for Neocate straight away.

When my now 4 year old was originally diagnosed the allergy specialist told me that having an allergy to milk protein's can cause reflux.So if your baby is displaying reflux like symptoms it could be more that just reflux and actually an allergy. Many GP.s are not aware of this link and just treat for Reflux and then wonder why it doesn't work. Of course some babies may just have reflux without the allergy.
 The body takes a while to adjust to Neocate and to heal from the damage the milk protein's have caused.I waited around 6 weeks and was all but giving up hope as she had so much more windy than normal and was ravenously hungry and feeding every 3 hours. It is a thin milk i think. It has also made her poop less too.  But she is so much more comfortable now and all the symptoms have gone.

[Zoey]

Hi cmcgmum, I was wondering how things are going for your LO?

[Amanda5555]

Sounds exaclty like my LO who is 12 weeks. We are on neocate and prevacid for reflux which made a big difference! My LO was having same symptoms exactly and more (" constant bottom burps, gurgling tummy, stuffy nose & cries in pain"). We also had mucousy poops and crying while or shortly after eating. He still gained weight and didn't have bloody stools or hidden blood. It was so frustrating and confusing. We tried many formulas and finally went to an elemental (nutramigen AA now neocate). We went with neocate because we found a large more affordable supply.  It isn't covered in ontario, canada and was going to cost the equivalent of a mortgage payment and more every month. Thought I was heading back to work after 2 months. We finally got to see a ped who sent us to an allergist,respirologist and for ultrasound. Still awaiting swallowing assessment next week.

Long story short we had allergy scratch test for milk which was negative also had an ultrasound of tummy which was normal. Respirologist saw nothing of concern. Both the allergist and respirologist concurred that reflux needed better control and may be the problem and finally voila new boy. Proper dose of Prevacid did the trick. Even though however the scratch test for milk was was negative I have heard intolerances can still exist. The only way to know is to try milk when reflux is controlled which I plan to do. With just the change to the neocate he was still having trouble until we got the reflux under control with a proper dose of prevacid.  Apparently reflux can wreak quite a bit of havoc due to its effect on digestion and acidity levels.  I was sure there was a milk issue however now am thinking reflux may have been more the culprit. More and more I am convinced.

Same picture as your LO though it was hell!!!! I hate when they say colic. 30yrs ago that was the only answer however now there is new research and if you can treat an adults pain why don't our LO's get the same courtesy if it can be safe and effective and short term.  Colic my ass (sorry was a frustrating journey) Listen to your gut! We had the full work up and finally something working told us the answer. Prevacid after approx 2 weeks was what made it better we tried everything else first and that's the only new thing.  I did not want a formal test for reflux at this point because it exposes my LO thyroid to radiation. We would have done that as a last resort but I know it was his reflux now. 

Something that pointed more to reflux than a true milk issue for us was his ability to thrive and gain weight and no bloody stools. We had mucousy stools but no blood and normal weight gain. We had the constant crying and tummy pain and inconsolability, arching and gas, trouble feeding dry pale skin etc, etc but no blood or failure to thrive. I could hear the relfux and see how his body reacted but what threw me off was all the apparent digestive issues which pointed to intolerance or allergy. When I did a quiz on symptoms of MPI he had many of them but I'm now pretty sure his reflux was what was contributing to his possible reaction to the formula because it was affecting his digestion overall and may continue to do so. I will test my theory when I try re-introducing milk but my gut tells me I'm right in our situation since we never really saw much improvement with all the food changes only with the prevacid. Some of the other posters did see a difference with just a formula change no more blood. Our strange mucousy poops continued with just the change to neocate.

I think though the special formula is lessening the workload on his gut and that it is necessary until his gut matures and reflux improves. So I plan to stay primarily on neocate and slowly try milk based and probably a thickened formula for refluxers when I think he's ready. I think though if his reflux is pretty bad we will end up staying on the neocate for the duration to lessen the workload if nothing else.  

(((((((((((HUGS)))))))))Hang in there I know how hard it is we are only a couple of weeks out of hell but wow what a difference! There is hope and I thought there was none. Hope my account of our experience helps. Keep me posted.


Amanda

Oh and BTW if a doc tells you your child has colic which is not improving it is standard practise to do a full work up to rule everything else out.  Colic or not they have to disprove other serious causes if they're going to make a colic diagnoses.  Also if it is reflux it can be extremely painful and we treat adults because it is so painful why should a child suffer because they will grow out of it. I watched my son in agony knowing something wasn't right and had to fight to get him some relief. It was so hard but I'm glad I did! And I'm sure so is he.  So you could say to your doc "  I was reading somewhere that if colic goes beyond 12 weeks its common to rule out other causes what is your usual practise related to that and can we be referred to a pediatrician or gastro specialist just to make sure everything else is ok?" And try to get to an allergist. It can take a long time so get on the list now.