Thursday, July 26, 2012

When is Reflux normal? Or is it?

This is what I would have liked to read long ago when I was sitting for hours with my baby who screamed night and day wondering what was causing his pain.  Or when I was wondering why my son was so sick but no one seemed to have any answers.  This is for all of you who are not okay with the answer to just give your child medication, but hope to actually find out why your child is in so much pain?  and ultimately a solution to the problem: 

Reflux is something that the medical community recognizes as normal.   We are told that every baby refluxes due to the natural looseness of the esophageal sphincter that tightens and corrects itself as we become more upright.   As a parent with my first child I was told that some children are just colic, they just scream all the time.    Yet , as a mother, I KNEW without a shadow of a doubt that my child was in pain.  I was not satisfied with the diagnosis of COLIC, and neither should you be.   Colic is a symptom, a symptom of discomfort and pain, NOT A DIAGNOSIS.  How many adults with chronic abdominal pain would be okay with the diagnosis of colic?   Oh, wait "irritable bowel," well that is another story!   I believe that any practitioner who is satisfied with this explanation for constant crying in a infant, is both outdated in practice and without empathy.   I hope and believe that someday in the future, the diagnosis of REFLUX would also be an outdated ideology as well.   Many practitioners still believe that reflux is painless and usually does not cause complications, apparently none of them have every had heart burn.   Nor have they held a screaming baby night after night watching him arch in pain, wanting to cry for him, wanting to make his pain go away.

I believe that mild reflux, for example spiting up after burping or a little after a feed can be normal for some babies, if it does not bother them or interfere with weight gain.   This mild symptom will improve as the child grows and starts to spend more time upright.   However, just because a child is gaining weight, does not mean they do not have a problem with reflux or possibly a food intolerance. I think food intolerance and leaky gut  should be explored in any child with persistent reflux.  I know this is not as easy as just prescribing Prevacid, but antacids are not a long term solution to reflux in children.   They are over prescribed, and in many cases don't appear to help and may even cause harm.   Let me be clear, I am not criticizing ANY parent for putting their colicky baby on these medications, I did this as well.  At the time, I did what I thought would help my child be free of pain.  What I am saying is that in the long term, reflux medication did not address the main issue.  Which was that Henry was reacting to the foods I was giving him.  Constantly eating these offending foods was causing inflammation in his entire body and making him sick.  I do not think that the type of reflux that Henry had was or is normal in any child.   Severe reflux or GERD is a symptom that something is not right in the body.  It should be a warning that something is unbalanced and adding medication might reduce acid, but it doesn't actually stop the child from refluxing.  What you didn't know this?   Many parents falsely believe that the medications will actually stop the child from refluxing.  It is no wonder they are then surprised when their baby continues to spit up feed after feed.    This is not how the medication works.  The medicine is designed to reduce the acid content of of the stomach or stop acid from being produced.  In my son's case even after trying Zantac and Prevacid he continued to reflux.  I felt that his pain was actually worse, he cried more not less.  I tried to explain this to the doctors.  Yet even though the medication actually has abdominal pain listed as one of the MAIN side effects my doctors ignored what I said; "oh, just give it more time."   Henry continued to reflux, and he  continued to aspirate liquids into his lungs,   The doctors take was "well at a least the fluids he was aspirating were not "acidic."    What kind of logic is this?  I guess it is an "as good as we can do," sort of mentality.   We can't STOP the reflux, so lets just try to make it less painful.   Unfortunately, this logic allowed for more and more damage to occur in my child's throat, as I continued to feed him the foods he wasn't tolerating.  His aspiration became worse, he started having more and more difficulty breathing after just nursing.  He was put on breathing treatments three times a day for wheezing episodes that occurred ONLY AFTER he would drink.  When that didn't help they put him on steroids.  Each time I reluctantly complied, even though I knew in my heart the medications were not helping.  How could they?  It was a vicious cycle.  Every time he drank the fluid would come up, irritating his airway, the more inflamed it became, the more it spilled over into his lungs.  I kept telling the doctors about how red his bottom looked, I knew he was in pain, inflamed from top to bottom--the question that no one could answer was why?

I vividly remember the night Henry got his G-tube, and not fondly. I remember I could hardly look at the hole in his stomach; I felt a huge amount of guilt, and still do. It was as if I had put it there myself, because he was too young to choose. I chose between two terrible options, and I chose to save his lungs with the only option I was given.  They told me it would stop the reflux, because they also tied his esophagus around his stomach: the Nissan wrap.  They told me it would fix his aspiration.  I thought it would stop his pain.  I wish that surgery had been the answer.  Unfortunately the main problem still was not addressed--why was Henry's reflux so unresponsive to medications?  What was causing it?    I cannot reverse the past. It is hard to relive those G-tube days, they were dark days indeed, in which I fought to keep my hope alive.

If someone had known that Henry had FPIES, I don't believe he would have ever had the G-tube.    Of course now that I know more about leaky gut and GAPS, I actually don't believe that FPIES is a TRUE diagnosis either but another SYMPTOM of the underlying problem of leaky gut and imbalanced flora, but that information will be for another post!    It frustrates and enrages me that some doctors are okay to just TREAT the symptoms, with medication rather than discover the underlying cause. I believe this attitude lead to a delay in Henry's healing and possibly many unnecessary procedures.  

The truth is, even if the materials are not "acidic" they are still materials that should not be moving constantly up and down your esophagus.  When liquid and food is constantly moving up and down it is going to irritate your throat, whether it is acidic or not.   Likewise, when liquids that should never be in your lungs are going into your lungs, they are going to damage your lungs, because fluids should not be in your lungs whether they are acidic or not!

I think that doctors are not asking the right questions and the right research is not being done.  When I asked my doctors if I should change my diet, they told me it wouldn't make a difference.  Yet at the same time one GI doctor told me to stop nursing and just put my child on formula because he obviously wasn't tolerating my breast milk.  Now this guy actually had part of the idea right--he made an observation that my child wasn't tolerating my breast milk.   Thank GOD I didn't follow his advice and stop breastfeeding, because I later found that my son couldn't even tolerate the most hypoallergenic of formula's NEOCATE, so we would have been in a lot of trouble.    Yet, I find it interesting that this doctor believed in "intolerance" even to breast milk, but rather than exploring the "why" he wasn't tolerating it, he simply suggested I give up breastfeeding entirely.  This to me is terrible practice.  It would be like going to the shop because your car engine was making a funny noise.  The mechanic tells you, your car has something wrong with it.  "What?" you ask.   "I don't know, but you better not drive it anymore."  Seems ridiculous for the mechanic not to try to fix your car, but when it's your child no one seems to think twice about the lack of advice being given to concerned parents.

All this being said, this is how I think maybe you could approach the situation if you've been told that your child has reflux.  First ask yourself a few questions. 

1.  Is there any family history of food allergies or intolerance's?  Is there anything that upsets my stomach when I eat?
2.  What are your child's bowel movements like?  Does he have diarrhea?  Is there blood in it?  or is he constipated?
3.  Is his belly often bloated, does he pass a lot of gas?  Is he fussy?  When?
4.  Does he get any rashes?  Where?  What do they look like?
5.  Does he have a diaper rash that is raw with red spots?  (this is a common presentation of yeast and can also appear with food intolerance's)
6.  If your child is refluxing so severely that they are having asthma symptoms such as chronic cough, reoccurring ear infections or chronic sinus issues,  wheezing--  make an appointment with a pulmonary doctor and and allergist.  If the allergy testing comes up negative, insist that your child have a swallow study to rule out "aspiration,"  to see if the child is refluxing so badly that he is in hailing particles of fluid or food into his lungs
7.  Does your child seem to be in pain after eating certain foods, or if you are nursing do you notice him being more fussy, gassy, irritable after you ingest certain foods?  Try to keep a journal to see if you notice a pattern.  If your doctor wants to put your baby on reflux medications, consider first eliminating the most common food allergens:  Dairy(casein, whey), wheat, nuts, gluten/wheat, corn if your child is still refluxing or having colic symptoms put yourself on the GAPS diet (see below)

TRY to answer the above questions to best of your knowledge so you can present this information to your pediatrician, GI doctor, pulmonary doctor or nutritionist.

Advice for you:

1.  Do NOT STOP breastfeeding
2.  If you've already had to stop breastfeeding consider making a liver based homemade formula ( if you choose to do this continue under close medical supervision to monitor growth and development)
3.  If you want to fix the underlying problem with your child's digestion and prevent future issues when starting solids, read the book GAPS and follow this advice about adding solids to your babies diet 
4.  Get your baby on a good pro biotic that is at least 10 billion CFU's, we use GUT PRO and if you are nursing take a good pro biotic too!
5.  If you are nursing start taking apple cider vinegar yourself--this helps with reflux and the underlying inflammation that you might be passing down to your baby.  Make your own batch: 1/2 gallon water, 1/2 cup of honey, 1/2 cup ACV. warm the water by itself and then add the honey until it dissolves then after that mix in the rest of the water and ACV.  NEVER GIVE YOUR BABY UNDER 1 YEAR OLD HONEY. 

If your baby is under one year old you could try mixing small amounts of JUST (diluted ACV same amounts as above but without the honey) into your pumped breastmilk.  Be prepared for him to make a face because it is strong tasting.  start with a drop of diluted ACV in your pumped breast milk you can just drop it in his mouth when he is having symptoms or once in the morning and once at night, if your baby is under one you can make the mixture and start with 1/2 a tsp and work up.
6.  Never stop being your child's advocate, if you have a gut feeling that something is NOT RIGHT, ask your doctor about it.  Journal any new symptoms, try to keep tract of how often your baby seems fussy or when spiting up increases.  Try to connect the dots and see if your baby reacts to the food you are eating. 

Before Henry got the G-tube I did an elimination diet and found out that he was very sensitive to my eating any milk, whey or casein products as well as soy while I was breastfeeding.  I wish I had taken it a step further and eliminated wheat and gluten, but my doctors discouraged me from limiting my diet further. 

Remember that you are your child's best advocate.  You are with your child all day and you know what a painful cry sounds like, you know the difference between just spiting up and vomiting.  Trust your instincts and find a practitioner who will listen to you and help you.  Find support from other mom's who know what you are going through.   You can help your child be well and find the solutions to the problems rather than just medicating them. 

Disclaimer:  This is not intended to be medical advice, if your child has symptoms of severe reflux, GERD or aspiration, see your pediatrician, consult with your doctor before starting new treatments or nutritional programs.