severe reflux and failure to thrive

Our little man is currently 13 weeks old. we have struggled with slow weight gain (60gms a week) since birth. Born term and 3.2kgs. He has had 3 admissions to the royal childrens hosp for aspiration at 2 weeks of age, and 2 more for failure to thrive. We have tried everything for his relflux, omeprozole, domperidone, bed proping, thickners, gaviscon ect. He has has an abdo ultrasound, barium meal and tests for metabolic disorders. All normal.

On our last admission, the doctors (who are stuck for ideas, calling our little Luca 'the mystery baby!) think he may also have a cows milk protein allergy. He was commenced on neocate, and has had good weight gains. Still vomitting large amounts however. It was extremly hard to take my exclusively BF baby of the breast and onto formula..

The doctors are pulling at strings as DS has no common symptoms of an allergy. I am still struggling with not BF (as i am also a midwife!!). After much research i find that this allergy does not necessarily mean that they baby has to be placed on formula. The mother can simply removed dairy from her diet.....

we go back to the doctors monday for a check up..
When we go back im going to ask for a trial of fortified breast milk, to see if this has any difference.

so my questions are;

* Has anyone had a baby with a cows milk protein allergy still BF, and still thrive?

* Has anyone had a baby with severe reflux also not thrive?



Any help or advice would be much appreciated!

hey, i just read this as :hug:
my DJ had FTT due to tung tie and reflux. can i ask - are you demand feeding your luca? how much is he taking (before the throw up?) and roughly how far apart are the bottles/boobie?

from my undersanding (and this is just my son too BTW) with the FTT, i had 48hrs of letting him do as he wanted, then 48 of 'control' feeds - which at 2 months ment 100ml bottles every 4hr (or 700ml or something) where as the 48hrs before he was taking UP TO 130ml (of both EBM /FF) i found the second 48hr time frame the reflux became worse, as he became stressed - the thickner made things hard as it was harder to throw up KWIM? i often found that with DJ if i felt him as flat as i could get him and then laied him down on the floor (we had a jungle mat thing with toys hanging down) for his food to kind of 'settle' it helped alot. i also found that DJ wanted bottles more often (they told me 4hrs was 'normal' DJ wanted them every 3-3.5hrs day and night) the thickner also made it like i said harder to bring it up - so he was in more pain which ment more chunder chucking. DJ went from the 10th% to the 25th% once i started 'following' him. now, it may not work for you guys - but i found that if i just allowed him to take the lead, yes there was still vomit - my poor DH would freak out *each* time with how 'big' each chunder was. but he's getting better now (almost 1 year old :o ) still has days where most of his dinner comes up! thats just how i got though it all, because i found that if i'd have followed what they wanted it made DJ more stressed which ment more spew - but if i have him "more then was needed" he was much more content KWIM? :hug: i hope that it helps some.

I have no idea about this, just wanted to offer some :hug: I hope things settle for you soon.xx

hows Luca going now??

He everyone,

Well what a journey we have been on! We went back into the doctors on the 25th jan... Luca decided to show the drs just how much he could vomit! Vomitting all over me.. again! After much discussion, i told the drs my thoughts, and he finally listened, agreeing with everything i was saying! So it was decided that luca would be admitted again that day, and would finally have a nasojajunel tube inserted. He would be on continuous feeds overnight, and breastfeeds during the day!!! Yay! Luca hadnt had a physical breastfeed since he was 6 weeks of age, just EBM.

All was going well, no vomiting once the tube was in, however he got a cold from one of the other babies, and also was not putting on weight, he was in fact losing weight.... After the doctors had meetings with all of the other paediatricians, everyone was still stumped! By the friday we were all getting a bit frustrated! Another discussion with one of luca's other doctors was lengthy, after he was once again convinced it was an allergy... after he left i thought about what were we doing different this time, to all of the other times luca had been in hosp....

Ding!!! He was being feed EBM in a bottle, thus we knew what volumes he was getting! So i proceeded to go ahead with my new plan, (drs telling the nurses that this was there new idea!) and bang 65gms over night!!!!! Unfortunetly the nurse on the sat night stuffed up his feeds, resulting in a very hungry little man, and by the monday he had put on 25gms on the sunday, then lots 15gms by the monday........ Once again angry drs on monday... after discussing what went on over the weekend, it was agreed we would give this new plan 1 more week. We went home on the tues, and luca had gained another 100gms overnight!

Well, we get home, and Luca gets Gastro! All he needed! Pulled out his tube by the friday, had it replaced with a temporary NGT, then pulled that out on sunday night! We had another drs appointment on the monday, less than a week after we left hosp. Luca had losts 55gms since the monday before, thanks to the gastro! the drs wanted to re admit him..... 5th time! After much pleeding we got another week at home! By the thurs he had gained 125gms, and last weigh in on monday he had gained 265gms in 1 wk!!! best ever!!! No vomiting either!

Needless to say, we are going well, he is rolling over, doing everything and more that a 4mth old baby should be doing! His just gorgeous! We are on a week to week basis, and hopefully looking at having the tube taken out in a couple of months, when he is back to the 25th percentile.. currently sitting on about the 2nd!

Sorry Riss I missed this before :hug: what a hard journey you are on.

My DD1 had reflux issues and lost weight around the 12 month mark. Up until she was 5 months she was in the 95% for weight and then went to the 25% by the 12 month mark. At that time, the GP decided that she may have a lactose intolerance and she was tested for it and it came back negative. At 3 years of age, I took her to an allergy specialist and found that she was severely allergic to the proteins in cows milk. This was why formula feeding caused her to not gain weight and we saw an increase in her reflux when she was put onto thickened formula.

With my DD2, at 5 weeks she started showing signs of reflux, at this time I went to a lactation consultant who said she had food allergies. Within two weeks of going off all dairy products, all signs of reflux were gone. When DD1 went off cows milk proteins, she started gaining weight like mad and had a huge growth spurt.

Maybe trying an elemental formula for her NGT and eliminate dairy and just have a trial run? Or go for allergy checks while you are trying to get the weight up. I can't say how much it helped us in the long term.

i'm glad to hear things are starting to work for you, and your little man is do better. :hug:

My son is now 17 months old.

When he was 6 weeks old he was admitted to hospital with severe reflux creating failure to thrive. We were in hospital for 4 days and he was on a nasal tube for 2. The most heart breaking thing!

We were on s26 reflux formula which helped as he was on the third percentile and quite underweight.

This did help. We found that he had to basically live in his bouncer til he was around 8 months old. He he had tummy time he's vomit. Any position other then almost sitting upright upset his stomach.

This has lead to delayed crawling and walking but I would much rather this then all even more ill child.

He has now only just put on 10kg and almost at a healthy weight.

It can be a long battle and it's good to have people to talk too.

He was a very sick newborn (too long a story to type on my phone) so a challenging 1.5 years it has been

Goodluck.

Hi there, I know I am late on this one, but I just wanted to give you some hope. My son still has severe reflux, he is almost 6. But things are so much better than they were. He is pretty much under control all the time on meds. He was FTT from 9 months and had problems gaining until he was 3ish, but he is fine now- at the 50% :clap: So it can and will happen.

I do commend you on breastfeeding, it really is the best thing for a reflux baby, my sons problems really started when I stopped breastfeeding at 9 months, so I really regret doing that.

I have 3 boys, the first 2 are definately cows milk protein intolerent, my 3rd is only 5 months and I think he is heading down the track, I am a member of a reflux only forum and tons of people go milk/soy free and find this helps a lot... for us, meds is the best thing. Waiting for them to work and getting the dosing right will help you the most I am sure. Good luck.

I didn't personally have issues but a lady that I was in hospital with had a little girl with cows milk protien allergy. The mother eliminated all dairy and successfully breastfed. Doctors recommended she only went to 6 months because of decreased calcium intake but she went to 9 months with no issues. I'm not sure if her daughter also had reflux but I can ask for you next time i see her.

Riss, how are you going now? If you haven't already read "Colic Solved" you might find it really helpful. It talks about reflux and milk-protein intolerance and is very informative. I hope things are going better for you now :hug:

Asked my friend who's baby had cow milk protien allergy and she said bubs only had reflux symptoms prior to cow's milk allergy diagnosis. Her wee one would bring up all the breast milk prior to allergy diagnosis. HTH and hope it's working out!