Servere 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!

Wow, you've had a really rough time!
Sorry, I don't know much about this, but I remember our pead telling us, when DS was very young and there were some issues (which turned out to be nothing) that sometimes babies couldnt' have dairy protein and that meant eliminating all dairy and pumping and dumping in the meantime till it was out of the mother's system. I think he said it took a couple of weeks...? So yes, based on my very limited knowledge I would say it may be possible to continue breastfeeding.
Maybe Barb, our resident LC, will see this and give you better answers.

All the best~~

It sounds like you have a severe case of GORD there.

The only thing I could add is to ask about a fundoplication - it is a surgical procedure where they tighten the muscle around the pyloric sphincter to basically stop gastric liquids refluxing into the oesophagus.

Good luck.

It sounds like you have a severe case of GORD there.

The only thing I could add is to ask about a fundoplication - it is a surgical procedure where they tighten the muscle around the pyloric sphincter to basically stop gastric liquids refluxing into the oesophagus.

Good luck.

I am convinced it severe reflux. He has all of the classic symtoms... Everything except for being unsettled! we have spoken about a fundo, im totally for the idea! The poor little man has just vomited up a large portion of his last feed. The gastro consultant is the one who is convinced that its a milk allergy. The only symptom of this is the vomiting!

The vomiting has got worse since commencing on the neocate. Despite weight gain with the neocate (which is all the doctors are happy with), i believe the weight gain is due to the large amount of calouries that is in the neocate. Therefore increasing the amount of calouries that is left even after the vomits. Thus why i think fortified breastmilk will help.....

I'm so angry and frustrated! My poor little man hates the neocate, but drinks it because his so hungry!

My DD had the same thing inculding hospitalisation
she was diagnosed with a milk and soy allergy and was on Neocate as well as another type that I cant remember as the neocate was the same it would allow her to gain weight but she still refluxed
I would ask ur doctor if there is another formula u can try that does the same thing (I know there is at least 1)
Oh btw doesn't the formula stink?? lol I hated the smell of it, it was like potatos or something lol

Riss - one of my mum's group mums has experience of having a child with cows milk protein allergy/intolerance (both of her daughters have had it, the oldest is now OK with dairy protein). I believe they also have a severe intolerance to soy protein. She was not able to breastfeed her first past about 14 weeks, but is still breastfeeding her second at 11 months. She has cut all dairy and soy from her own diet - she finds if she has the smallest amount, the difference is obvious.

I only know about this anecdotally, so I am not sure if my information is accurate or not. It seems that you suspect reflux as the more likely cause of your son's problems, but if you are investigating dairy protein intolerance further I could ask her for more info.

I hope that you find some answers soon. :hug:

My DD1 had a cow's milk protein allergy and I BF her until 10 months. I only stopped because I had gone back to work and it became too difficult. She would not throw up though when had milk but suffered with terrible stomach pain and would cry for hours until we found out about the allergy. I cut dairy out of my diet and continued to BF. If you put milk on her mouth she would get a rash. So that is a way to check. It sounds like more than just a milk allergy. Keep your milk supply up as hopefully you will be able to BF again soon. I had a problem when I was a baby that the valve on the top of my stomach would not close properly and everything would come out too. I hope they can really find the problem soon.

Yes, most definitely you can breast feed a baby with dairy allergies!!

Dairy exposure is everywhere. Here is a list of hidden diary: http://www.kellymom.com/store/handou...dden-dairy.pdf

I was able to breast feed our son with dairy, soy, corn, wheat, and many other allergies and food intolerances. We nursed for two+ years. As soon as I removed the food allergens, he no longer had the horribly painful spit-ups, gas and green-mucusy poops.

Basically, baby is reacting to your food intolerances, unless he is IgE allergic to dairy. I would suggest adding small amounts of sauerkraut juice to your diet to improve your stomach acid, thus improve the absorption of nutrients to help with digestion and detoxification. Also, including whole food probiotics for improved immune health.

Green juice is amazing for nutrients for mama, also.


Pat

my son 1yrs old next month, our problems started from 2wks old where he was screaming all time i was told it was colic but i new it wasent i hav older children.we found out he got dairy intolerance,he was put on neocate milk but after month started to vomit up very restless never ad much sleep. my son on same medince as your son,also cant open bowels oftern as movical,anything new he has only lasts couple of wks them pattern starts again with new problems.my son got reactive airways disease,reflux,bowel slow emptying,slow digest ,gaggs,chokes,stops breathing sometimes,we always
struggle to get fluilds in him,we ad same tests done,we going to have m r i scan sleep study,acids measured as well. since november hes ad ng fed tube put in his nose but hes keeps vomiting dehydration,its been very tiring stressful keep being in hostpital alot.we just been in for 10 days he will be having opperation on wednesday to have peg fitted to his stomach to get fluilds to him,have been told could take 5yrs to get better and he still might have opp to have knott tied in bottom of reflux.i know what you going through my son on peptmen junior milk,ducal put on his food to build him up now.its hard battle just keep on till you get to bottom of it.

Hi 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!

:

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my son 1yrs old next month, our problems started from 2wks old where he was screaming all time i was told it was colic but i new it wasent i hav older children.we found out he got dairy intolerance,he was put on neocate milk but after month started to vomit up very restless never ad much sleep. my son on same medince as your son,also cant open bowels oftern as movical,anything new he has only lasts couple of wks them pattern starts again with new problems.my son got reactive airways disease,reflux,bowel slow emptying,slow digest ,gaggs,chokes,stops breathing sometimes,we always
struggle to get fluilds in him,we ad same tests done,we going to have m r i scan sleep study,acids measured as well. since november hes ad ng fed tube put in his nose but hes keeps vomiting dehydration,its been very tiring stressful keep being in hostpital alot.we just been in for 10 days he will be having opperation on wednesday to have peg fitted to his stomach to get fluilds to him,have been told could take 5yrs to get better and he still might have opp to have knott tied in bottom of reflux.i know what you going through my son on peptmen junior milk,ducal put on his food to build him up now.its hard battle just keep on till you get to bottom of it.

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just letting u no my son ad his peg fitted its early days yet but we seem inprovment fingers crossed.what very hard 11 months we ad in out hostpital ,doctors,ect ect. hes not my first child i just new something was wrong we were made out it was all in our heads and my son got behaviour problems,we were right he got problems felt we been to hell and back. cause of these problems my son got delays he cant sit,roll, crawl, so now hes got to have m r i scan now has hes 1yrs old next month.just felt we been let down for long time its been 1 problem after another no one ad answers all failed what ever was tryed,so we hope the peg works.