My 20 month old has a history of GERD since birth (quite severe, we've been down a long road...) and just weaned off Prilosec last month. She has also been unable to transition to dairy and was given the probable dianosis of FPIES (food protein induced enterocolitis syndrome) or allergic colitis from her allergist, due to a dairy allergy---her IgE mediated tests are negative and there is no real test for FPIES but her clinincal history matches fairly well. Dairy in her diet has caused reflux, diarrhea, bloody stool, extreme irritability, and sleep disturbances. When her reflux or allergy symptoms flair, she retreats, does not want to play, cries uncontrollably, and does not want to be touched. Now, completely dairy free, she appears to be a happy and healthy little girl for the first time. Her GI wants to reintroduce milk again in 4 months (she just had a bloody stool from one piece of cheese 3 weeks ago mind you, and we have tried with no success to introduce milk 4 times already in her life--each time with a worse reaction. Is reintroducing milk really a necessity??? I feel that she needs to focus on her development and be able to enjoy being a happy little girl for the first time. She is to transition to Neocate Junior to give her the dietary supplement for milk (has been on nutramigen since 3 weeks old). Also, the GI was unable to tell me whether she has a FPIES or allergic colitis and really saw no reason to delve further....I don't want her to have any tests, but shouldn't he be able to give one diagnosis over the other?? I'm the kind of person who needs an answer so that I can research and learn how to best help my daughter. Is there a relationship between her GERD and the FPIES or are they completely separate?? Another question, before I transition to Neocate Junior, does anyone know if one flavor is better tolerated than the others....I believe it comes in unflavored, fruit, and chocolate. Thank you in advance for any help you can offer!!
Q: 20 month old with GERD history and possible FPIES, milk allergy...
Dear Madi's Mom,
You and Madi have had quite a journey...I understand your hesitation to re introduce dairy products at this point. I am not an expert on FPIES or allergic colitis. My understanding is some patients must avoid foods that trigger foods all of the time.
Certainly Neocate is a good choice. You might want to call the manufacturer and ask them to send you a sample of the flavors. I think they have flavor packets too. Your doctor may have this type of sample packet too. In the past, they have offered coupons and information booklets for parents. I talked to the company at a conference last fall and sampled the flavors. I think orange was my favorite...They even have juice boxes with a straw so a toddler can drink on the go.
Often, a test such as an endoscopy is needed to confirm a diagnosis of GERD when there is some question about the root cause of the symptoms. During an endoscopy, the doctor can take samples of the esophagus or stomach, called a biopsy and detect food allergies in the upper digestive tract. Colitis/enterocolitis is a lower GI tract issue so a colonoscopy may be needed to confirm the diagnosis. Again, a biopsy would confirm the diagnosis. While an elimination diet has given you valuable information and allowed you to provide a treatment (diet), you and the doctor may still have questions about the diagnosis.
Let me know if I have answered your questions.
Best wishes,
Jan Gambino
The Reflux Mom
My daughter has been diagnosed with FPIES after being admitted to hospital so I know how you feel with so many questions, many of which I am still working through. I also have a son who suffered with GERD for 11 months. He was on neocate and I still put it over his cereal at 2 years old as he cannot tolerate milk. We have always used plain Neocate for him and I figured I would stay on that when they offered flavours as I am guessing the flavouring is an addative. I cant see any real need to keep testing dairy every 4 months, my little boy is fine without it. At around 18months I tried yogurt and he started reacting just with eczema and irritability but it still quite bad so I took him off it again before that I never really tried it as I know how horrible it is for them when they are suffering. I can now give him meals that contain a bit of dairy but that is all. I wouldn't even worry about testing especially if you feel against it cause I have now learnt from two children with different challenges that what you feel in your heart as a mum is 99% of time for the best.
Hope this helped in some way.
Claire
Your story is so familar to me. My son had severe GERD for the first 20 months of his life and it wasn't until I stopped nursing him that docs finally believed me that there was more to the story. Within a month he lost 3 lbs. He weighed 19 lbs at 20 months when we took him to CHOP and finally got a diagnosis of FPIES. I felt the same way as you just wanting an answer. We weren't certain if it was FPIES or EE and one doc actually said, "What does it matter, the treatment is the same." Well, it mattered to me. He was on a restricted diet while we figured out what food were the culprit. He couldn't have wheat, milk, soy, beans, oatmeal, or poultry. He also takes an elemental formula called Pediatric EO28. There are 3 flavors. My son wouldn't take the neocate, but he loves this stuff. Within 6 months he gained 6 lbs! It was amazing. He is doing well now. He still takes the formula and still can't have wheat or poultry, but it's better than it was! Hang in there and find a doctor who is willing to work with you. Don't settle for someone who doesn't have your childs interest in hand. Take care!
We were told my son at 1yr had GERD
by 2yrs he was worse
we thought Celiac then possible FPIES
we went to Mount Sinai Pediatric Allergy Immunology center
in New York 212 241 5548
Dr Mirna Chehade is top of her field with FPIES
she found he did not have FPIES but rather
Fructose malabsorption
One month on the special diet and my son for the 1st time ever sleeps the entire night plus he grew 1 inch and gained 4 pound with in that 1 month
I have learned dont settle
What ever you do continue to ask questions and go to as many Drs as that takes
Dont ever forget your mom and you know best!
I wish we had gone to NYC long ago
they have an enitre floor with a team of Drs to ensure you get correct
answers and help
Hang in there
best wishes
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Wow! What an amazing story! I am so glad you kept searching for answers. I really liked what you said: "Don't ever forget you are the mom and you know best!". Yeah for moms who listen to their hearts and stand up for their children when they need a voice.
Now help us out here: what were his symptoms and how did the doctor test him for fructose malabsorption? You could very well help another parent or grandparent searching for answers.
Jan