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REFLUX after food, difficulty swallowing in baby. Treatment.

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Hi there, I am hoping to consult with a pediatric GI specialist or something similar please. Our daughter is 11 weeks old and since birth she has been struggling with what seems to be various digestive problems. Here is her history, I hope you can offer us some guidance on what we should do next and what proper dose of medication we should request for her...

When she was first born she began to vomit up large amounts of her feeds and ended up being admitted to the intensive care unit for assessment and testing. They did an xray and found that she had an air filled loop in in her bowel. They stopped her from eating food overnight and ran the test again to see if there was an improvement and there was not. So they next ran an upper GI series as the surgeon suspected malorotated gut, however it was normal and the surgeon was no longer concerned. At that time a lactation consultant came into the picture and began to work with us at getting her latched better as she had a mild tongue-tie and a bad gag reflux. With the use of a nipple shield, things improved and she began to put back on weight and we were sent home. However, then she began to cry a lot, after every single feeding. We saw a pediatrician and he diagnosed it as reflux. She regurgitates all the time but usually swallows it. We often see her chewing and trying to lengthen her neck, or swallowing long after feeds are complete. She is currently on a high dose of liquid zantac (ranitidine) - 1 ml, twice daily. That is double the original dose he prescribed to us. First we were on .5 twice daily ,and that seemed to work wonderfully for about 12-14 days and then the crying began again with each feed. Then we tried prevacid, however only at a very low dose for 5 days. The pediatrician said that if it was going to work then it would work immediately, so he switched back to the zantac but at a higher dose, which is where we are now. It seemed ok (not great but not the worst it's been) for a few weeks and now we are worse than ever. We are at our wits end, not knowing what to do to help her be in less pain. She cries all the time and she struggles to nap even though she is exhausted. Another important piece of information is that she went for an additional xray at my request recently and it showed a lack of air in the rectum, so they sent her for a barium enema xray to check for Hirschprung's syndrome. That test came back as "borderline," so they recommended a biopsy be done to rule it out for certain. We are seeing a surgeon regarding this on Friday however neither us nor our pediatrician feel that she has Hirschprungs as she is never constipated - she poops 2-4 times per day now and used to poop even more frequently when she was younger. I think the pediatrician said that if having Hirschprungs was a measurement of 1, hers came back as 0.8.

Additional information:
-She drinks only breast milk but has begun to struggle at the breast because reflux bothers her and she can't feed comfortably. So now I pump out breastmilk and feed it to her by bottle only. We were recently assessed at a feeding and swallowing clinic to see if she had any structural problems with feeding and swallowing and she did not - the specialist said that her feeding problems stemmed from her reflux only.
-She passes so much gas and she always cries as she does.
-When she has a bowel movement it is always very noisy and explosive sounding!
-She gets hiccups constantly
-When she was in utero they saw a fluid filled loop in her bowels but said that it was probably just amniotic fluid and that there was nothing to be worried about unless she didn't pass stool when she was born (which she did, immediately).
-She is growing fine and putting on weight appropriately.
-She is otherwise healthy.
-I refrained from consuming dairy products at the doctors advice for 6 full weeks and we saw no improvement in her pain level. Dairy was then re-introduced without any effect.
-We tried putting her on formula for 3 days to see if there was an improvement and there was not.

What do you think in your expert opinion that we should try next? We are thinking of perhaps giving the prevacid another try as we heard from another doctor that it actually takes two full weeks to see the effect. Do you agree? Do you think she has other problems? She spends so much time crying in pain each day it breaks my heart. Would there be any benefit to trying to thicken her feeds with rice cereal? Any advice, guidance or thoughts you could offer us would be greatly appreciated. We are getting very desperate for something to work and ease her pain. Thank you in advance!

Krista

Category: Pediatrician

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Category: ICU/ Critical Care Specialist
 19 Doctors Online

Dear Krista,
Thank you for your query at DoctorSpring.com
You have very elaborately explained the problems that your daughter has been having. The structured description is so well written that it could easily have been passed off as written by a fellow pediatrician.
I have gone through the history provided by you in detail and my diagnosis, based on the information provided by you is severe gastro esophageal reflux.
Let me explain the problem in simple language. Normally, a circular band of muscle, called the lower esophageal sphincter (LES), separates the stomach from the esophagus. After food enters the stomach, the LES contracts, acting like a one-way valve that closes and prevents the stomach contents and acids from regurgitating, or refluxing, back up into the esophagus. In some babies, the LES is temporarily immature, so it allows partially digested stomach contents and acids to be refluxed. This irritates the lining of the esophagus and causes the pain. In some infants, such as your daughter, the same problem can present with more severe features that we label as the SANDIFFER SYNDROME. In this entity, the severe gastroesophageal reflux forces the baby to adopt abnormal neck positions, that you have very rightly highlighted.
The following feeding and positioning tips will help minimize her acid reflux.
For an infant with GER, an upright position helps, since gravity helps keep the stomach contents down. Sit with her on your lap with her head nestled against your chest. Keep her in this position for at least thirty minutes after a feeding.
One more advice that can help is feeding her twice as often, half as much. It stands to reason that if a smaller volume of milk s given, it will be digested faster and there will be less to spit back up.
Regarding the content of feeds, I am glad you chose to stop the formula feeds. Breast milk has many advantages over formula, especially for a baby with GER. It's digested faster than formula, which minimizes reflux, and it contains enzymes that aid digestion.
Positioning the baby appropriately can also help. Lying flat doesn't provide the benefit of gravity to keep food down. You can elevate the head of the crib about 30 degrees. This slight incline is often enough to lessen nighttime regurgitation. While it's certainly safest to put your baby to sleep on his back, if she simply won't sleep in that position, encourage her to sleep on her left side.
Now coming to the pharmacological treatment, kindly start her on Oral Lanzoprazole 1 mg per kg per dose once daily for at least 2 weeks. You can stop ranitidine.
She requires an ultrasound abdomen specifically looking for relative positions of superior mesenteric artery and vein. She also requires an upper gastrointestinal endoscopy to look for other causes. This can be carried out under the supervision of a pediatric gastroenterologist. She also needs to be monitored closely for her weight gain and comfort level so that we can assess her response to therapy objectively.
Lastly, I personally do not feel that she requires a rectal biopsy as her clinical picture does not fit into that of Hirschsprung disease.
Hope she recovers soon. Please feel free to clarify if any of my suggestions are unclear.
Regards
Dr. Saptharishi L G


Patient replied :

Hello and thank you for your response! I will switch her prescription accordingly. And it is nice to know that you agree about not requiring the biopsy. I really do not want to subject her to more testing than is absolutely necessary. Do you think it is important to do the two additional tests that you recommended, even if she is gaining weight appropriately? If we switch her prescription and she cries less, would you still recommend that I move forward in trying to get those tests? What are they checking for and what do you think might be found in this particular case? Also, when do you recommend that we begin to try and wean her off the prescription? We are already keeping her upright after feeds and mostly holding her or propping her up to sleep. Night time is the only time she actually sleeps in her crib and it is not elevated. Can you recommend something to soothe her throat after she spits up? A natural remedy perhaps? It seems that after a spit up is when she cries the most and she just needs something to soothe her throat. I was thinking of trying a little bit of chamomile tea.
Also, I just wanted to add that we've noticed she can often be calmed during a crying spell by laying her flat on her back on a firm surface and pushing her legs/feet toward her chest. This is obviously not something that would help her reflux so we thought it worth mentioning in case it gives an important clue as to what else might be ailing her.
Thanks! Krista


Dear Krista,
I am glad that you found my suggestions helpful. Regarding the newer investigations, ultrasonography of the abdomen with a specific focus on two things: 1. Measurement of thickness and length of gastric pylorus to rule out an Idiopathic hypertrophic pyloric stenosis. 2. Assessment of relationship of SMA and SMV to rule out a malrotation complex.
The above investigation is absolutely harmless and non invasive with no radiation exposure. We can decide regarding the need for upper gastrointestinal endoscopy if the ultrasonography work up is NEGATIVE. Though upper GI endoscopy is slightly more invasive and requires sedation, it may give valuable information regarding tone of her sphincter, degree of reflux, degree and severity of reflux esophagitis. Sometimes, endoscopy could pick up surprising congenital anatomical variations as well. So, my personal advice is to get Test no. 1 immediately and may be wait for two weeks to assess response to Lanzoprazole and then pursue test no.2 if she continues to be symptomatic.
Weaning her from medicines need not be done. If she has good response to the Lanzoprazole therapy, we could continue using it.
Soothing her throat is important but not at the cost of risking other harm. So administering tea would not be advisable. I would recommend that you try a spoon of Luke warm water ( ensure adequate cleanliness, preferably boiled water subsequently brought down to just around room temperature). If that also does not help, you could try giving her small amount of honey. In my personal experience, it works for many infants. But, it is important that honey can be a source of infections like botulism, so every care has to be taken to procure honey of the highest quality.
Regards.


Patient replied :

Hello again, sorry for the delay, I just wanted to check with her doctor about the additional tests you suggested and he said that stenosis and malrotation have even ruled out from the tests we've already had. Also in Canada apparently they do not do endoscopies on infants - she has however had a contrast x-ray of her upper GI tract and it was normal. I just wanted to ask if excessive has could be a sign of anything serious? She passes gas so much! Farting and burping very often. Everytime she wakes up from a nap she farts many times and also after or sometimes while eating. She also passes many bowel movements. Should we be worried about this or is it normal? Thanks!


Dear parent,
Excessive gas or flatulence in such a young infant can be due to one of the following causes:
1. Physiological variation
2. Inadequate digestion of lactose content of milk such lactose intolerance, etc.
3. Mother ingesting foods that produce flatulence. Though modern medicine rubbishes the above cause, many mothers report increased flatulence in their babies on ingesting foods such as potato, pulses, beans, etc
You could modify the content of your food, increase content of fibres and decrease foods that lead to flatulence. If it persists despite the dietary change in mother, it could be most likely due to a physiological variation. You could consider ignoring it as long as the child continues to gain weight adequately and remains active.


Patient replied :

Thanks! I just want to clarify what you mean by physiological variation before I close the consultation. If this is the case will she be this gassy all her life? And what might it be called so I can google it and or bring it up to her doctor here. (It can't be lactose intolerance as I've already tried being dairy free for 6 weeks with not much difference).
Thanks in advance, I will close the consultation when I've received your next answer :) All the best!


Dear Krista,
Physiological variation essentially means that each infant is DIFFERENT and may have his/her idiosyncrasies. Just like adults differ from each other in how gassy they are, children too are different. It does not mean she is going to be gassy all her life and no one can predict that.
I think you harbor a misconception regarding LACTOSE INTOLERANCE. Your staying away from dairy products has nothing to do with your baby being lactose intolerant or tolerant. Breast milk and essentially all animal milk have LACTOSE. There are lots of myths and misunderstandings about it:

  • There will not be less lactose in the breastmilk if you stop eating dairy products.
  • There is no relationship between lactose intolerance in adult family members, including in the mother, and in babies. They are different types of lactose intolerance.
  • A baby with symptoms of lactose intolerance should not be taken off the breast and fed on soy-based or special lactose-free infant formula.
  • Lactose intolerance is very different to intolerance or allergy to cows' milk protein.
The amount of lactose in breastmilk is independent of the mother's consumption of lactose and hardly varies. Lactase is the enzyme that is required to digest lactose. Lactose intolerance occurs when a person does not produce this enzyme, or does not produce enough of it, and is therefore unable to digest lactose. If it is not digested and broken down, it cannot be absorbed. If this happens, the lactose continues on in the digestive tract until it gets to the large bowel. It is here that bacteria break it down to make acids and gases, as is seen in your baby. The symptoms of lactose intolerance are liquid, sometimes green, frothy stools and an irritable baby who may pass wind often. If a baby is lactose intolerant, the medical tests ('hydrogen breath test' and tests for 'reducing sugars' in the stools) would be expected to be positive. However they are also positive in most normal breastfed babies under 3 months. Their use in diagnosing lactose intolerance in young babies is therefore open to question. By asking you to stay away from dairy products, your physician has tried to rule out COW MILK PROTEIN ALLERGY or ANIMAL MILK PROTEIN ALLERGY in your child.
Wishing her a speedy recovery.


Dr. Saptharishi L G
Category: ICU/ Critical Care Specialist
Experience: 
Senior Residency: DM,  Pediatric Critical Care, PGIMER

Residency: MD, Pediatrics, Postgraduate Medical Education & Research (PGIMER), Chandigarh, 2013

Internship: JIPMER, 2009

Medical School: MBBS, Jawaharlal Institute of Post-graduate Medical Education & Research (JIPMER), Puducherry, 2008
Dr. Saptharishi L G and 4 other Medical Specialists are ready to help you

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