Pediatric GERD and Special Needs

It was my first day at a local moms' group.  It was a place where I was supposed to feel supported, encouraged, and loved, and heaven knows, I needed that.  But before the meeting even officially started, the director of the group approached the microphone and made the following announcement: 

"Would the mother of (my daughter's name) please go pick up your child?  She vomited and is completely covered in stomach acid."

Way to make an impression.  Way to feel supported, encouraged, and loved.

When my girls were still infants, there were times when I spoke with parents of non-GERD babies who did not understand why I was not more involved in my church, community, or even a professional organization.  When I tried to explain the extra demands that go along with caring for a GERD baby, I was often met with quizzical looks.  Every once in a while, a bold mother would ask me outright, "But caring for a GERD baby isn't like caring for a special needs child, or a child who's dying of cancer.  They have medicine for reflux.  Just give the girls a pill and move on with your life."

Give them a pill and move on.  If only it were that simple.

Make no mistake: there are some babies whose acid was so mild that a simple little miracle pill "took it all away" and made life easy for them and their parents.  (These would typically be considered colicky or GER babies, though, and not truly GERD babies.)  But for others--the true GERD babies who fall in the moderate to severe category and do not grow out of the symptoms in a year--it's not that simple.

Taking care of a baby or preschooler with moderate to severe acid reflux is time-consuming, energy-absorbing, and sleep-depriving in its most basic sense.  There can be difficulty establishing a routine, which is almost always complicated by the nagging, nearly-insurmountable self-doubt that maybe, just maybe, you're not able to handle motherhood or parenthood like everyone else around you who seems to breeze right through it with hardly even a blink.  You know your child has special needs, but until society around you recognizes that, you can't really find a support group that understands.

 The good news is that in recent years, physicians, therapists, and specialists have begun to examine GERD more closely in relation to special needs.  Part of this is due to the increasing diagnosis of GERD in children who already have other classified special needs such as autism, and Down's syndrome.  But part of this new consideration, too, is due to the fact that pediatric GERD patients exhibit so many other symptoms beyond incessant crying during infancy.  Ongoing physical symptoms of GERD include feeding issues (difficulty swallowing, food pickiness, texture issues, pica--or routinely eating non-edible items, etc.), breathing difficulties (chronic croup, asthma, wheezing, stridor, enlarged tonsils and adenoids, etc.), motility concerns, gross motor developmental delays, and speech delays.  Pediatric GERD patients also regularly exhibit sleep disturbances including sleep apnea, nightmares, night terrors, and chronic insomnia.  They also have emotional struggles: excessive clinginess, extreme and sudden tantrums (which often include growling or other animal noises in addition to screaming and crying), periods of violence or self-harm (self-biting, hair-pulling, head-banging, etc.)

Taking all these symptoms into consideration, it is no wonder that a simple little pill sometimes does not "do the trick" for children with moderate to severe GERD.  It should also be no surprise that professionals are beginning to consider GERD a special needs category in its own right, considering the fact that parents of GERD patients struggle to help their children cope with the same symptoms that make other diagnoses--such as autism, for example--worthy of the term "special needs."

For more information about professional organizations offering support and therapy to pediatric GERD patients as special needs children, you may check out the following links:

ComeUnity Support Website for Parents of Children with Special Needs, including GERD

http://www.comeunity.com/disability/speclists.html#feeding

PAGER article regarding GERD in Special Needs Children

http://www.reflux.org/reflux/webdoc01.nsf/(vwWebPage)/SpecialNeeds.htm?OpenDocument

GERD Issues Requiring Physical Therapy

http://www.pollywogbaby.com/torticollis-sandifers-syndrome.html

GERD as an Area of Specialization in Physical Therapy

http://www.pivotalpt.com/html/specialize/1c2b_gerd.htm

Jan Gambino (MD and GERD Author/Mother) discussing the link between Acid Reflux and Autism Spectrum Disorders

http://www..com/acid-reflux/c/96/46100/question-reflux/

Gonna Spit on GERD

I met another GERD mama yesterday who also has two preschoolers with acid reflux.  Like mine, she has one with silent and one with traditional GERD.  I always find it encouraging when I meet other GERD mamas, because for so long I felt like I was wrestling through acid reflux issues with my children alone since all of the pediatric GERD support groups in my area had apparently gone MIA.

This is perhaps why I was so excited to discover PAGER and the "Spit on GERD Campaign."  Not only is PAGER a great online resource of information and encouragement, but their research is ongoing, particularly in relation to family history and the Chromosome 13 link.  Last week I contacted PAGER to ask for more information, and I received a timely and friendly response encouraging me to "enlist" my family in the "Spit on GERD Campaign," especially since there are at least 5 people in 2 generations in my family with the disease.  All that is required is a sample of saliva collected, labeled, and returned to the Allegheny research group conducting the study.

For more information about the study and how you can be involved, check out the following link:
http://centerforgenomicsciences.org/research/flyer.html

Something Fishy: Two Sides to DHA

It seems that every time I turn around, I discover more products with added DHA.  First it was prenatal supplements and infant formulas.  Now it's added to toddler formulas, toddler foods, toddler multivitamins, fruit juices, and milk.

What is DHA?
DHA stands for docosahexaenoic acid, a fatty acid that occurs naturally in microalgae, which is typically eaten by fish.  Once digested by the fish, it moves up the food chain, becoming more and more concentrated, until it is consumed by humans.  In humans, DHA is known to have a variety of health benefits.  The most commonly discussed benefits for adults are related to heart and cardiovascular health.  For women, DHA can reduce symptoms of depression, specifically in the post-partum period.  In infants and toddlers, DHA is known to be essential for brain and eye development.

So why is it added to infant formulas?
The current explanation for adding it to formulas maintains that in cultures where women eat a lot of fish during pregnancy and nursing, DHA is more available to the infants both in utero and through nursing.  But in America, many women do not eat significant levels of fish--or are warned against eating fish for fear of mercury poisoning.  American women also often rely on infant formulas instead of nursing for medical, professional, or personal reasons.  Therefore, DHA has become the "superfood" additive, if you will, to infant dietary products.

A history of the addition of DHA to infant formulas, however, reveals a different aspect, too.  As with healthy children and adults, healthy full-term infants are apparently able to create DHA from precursor fatty acids.  Low-term and preterm infants, however, are not able to create as much as their body requires, so DHA was added to infant formulas.  At first, it was tuna oil.   Lately, it has been synthetic oil.

But is it safe?
The real question should not be "Is DHA safe?" rather, "Is synthetic DHA safe?"

Theoretically, the DHA manufactured in a laboratory directly from microalgae (also known as Crypthecodinium cohnii) and added to infant products should be completely harmless for all babies.  After all, naturally occurring DHA begins in microalgae, too, so what is the difference between adding microalgal DHA to infant supplements instead of fish-oil DHA?

No one knows why, but there is a difference.  Perhaps the difference lies in how the DHA is processed.  No one knows exactly how a fish processes DHA; therefore, any laboratory processing of DHA must involve synthetic chemicals.

How does this difference impact infants?
First, according to an Australian study, the synthetic oils caused a significant increase in the liver and spleen weights of infants.  While this weight increase apparently did not affect the organs' ability to function correctly at the time of research, the reason for this increase and the possible risks associated with it are still unclear.

Secondly, infants given synthetic DHA gained weight and grew faster than infants given natural (fish-oil) DHA.  And in America, bigger is often better.

Or is it?  For the vast majority of infants, no measurable difference between synthetic and natural DHA was established other than weight gain (over all and in regard to their livers and spleens).  But for the GERD baby, the difference was monumental.

In a recent study published by the Cornucopia Institute, research drew a direct line between the presence of synthetic DHA in infant formulas and the presence of GERD in babies.  GERD babies who were taken off formulas with synthetic DHA demonstrated a remarkable recovery from their symptoms, while GERD babies left on the synthetic formulas did not.  In addition, other studies documenting the rise in the number of GERD babies diagnosed show an eerily similar pattern regarding the rise of GERD and the presence of synthetic DHA in infant formulas.

What is the solution?
One solution would be for parents of GERD babies using formula to feed their babies only the formulas that have added iron, not DHA.  Unfortunately, within the past two years most of the major formula makers in America have discontinued making DHA-free formulas.  (Ironically, some of these same companies still manufacture DHA-free formulas for other countries, Canada included.)  And given the evidence that DHA is essential for infant brain and eye development, no formula company is interested in reversing their current trend of adding DHA.

The Case for Fish-Oil DHA
But there is hope.  Other studies, and my own personal experience, indicate that pediatric GERD patients do well when taking natural DHA (fish oil) supplements.  In other words, natural DHA does not seem to trigger GERD symptoms, and it provides GERD babies with all the important benefits of brain and eye development.  Fish oil is already making an appearance as the DHA supplement in toddler formulas: it is perhaps not a far leap in logic until it appears in infant formulas, too.

And there is another benefit to fish oil DHA.  Autoimmune research indicates that a high DHA fish-oil diet can actually slow or stop the production of cytokines--the chemicals recently tied to GERD symptoms by a research team in Dallas.  In other words, not only does fish oil DHA not trigger GERD symptoms; it may actually prevent them from occurring.

Of course, all this information can be dizzying and confusing, particularly for moms who have to buy formula for one reason or another and cannot find synthetically-free DHA.  From my personal experience and that of other parents, here are my recommendations:

1-Write to formula companies.

As far as I know, Similac is the only company that still makes a regular formula without DHA; however, I could only find it at Amazon.com.  Similac also produces a hypoallergenic formula called Neocate, which you can purchase with or without DHA.

Enfamil no longer makes regular DHA-free formulas, but they are open to my concerns.  Enfamil Pregestimil is a hypoallergenic formula which to my knowledge does not yet contain DHA, but reportedly will in the near future.  In addition, Enfamil has already begun producing a toddler formula that uses tuna oil instead of synthetic DHA.  (Enfagrow Vanilla is the formula without synthetic DHA.)

Nestle has also begun using tuna oil in their Juicy Juice DHA Grape juice, so perhaps they will be open to creating a formula with tuna oil DHA.

Be positive: encourage them and thank them for this switch and ask if they will consider creating a formula with fish oil for GERD infants, as well.  Chances are, all it takes is for one formula company to make a change and the others will follow in the name of market competition.

Finally, be aware that the hypoallergenic formulas are high in price.  Check with your insurance company if you need to use them: many insurances will cover the cost of specialized formulas as long as your pediatrician writes a prescription. (You can look at the GERD Mama Store/Amazon link on the right of this page to see what these formulas look like.)

2-If you cannot find a DHA-free formula, choose one that contains a lower percentage of DHA.  In general, Enfamil contains the highest: generic brands such as Up and Up (Target) and Parent's Choice (Walmart) contain lower percentages.  Mothers of GERD babies have asserted their babies do better on the generic brands although no one seems to know why.  I wonder if it has to do with the lower percentage of synthetic oils.

3-If you use a lower DHA-formula and your infant still experiences GERD, you will need to try other treatments.  Natural treatments that worked best for my girls included Colic-Ease Gripe Water, positioning, and massage.  And, of course, a lot of prayer.

4-Take advantage of natural DHA fish oil supplements and foods for your toddler.  The most obvious source for fish oil should be fish, but if your child is a picky eater, I have listed a few names and products below to guide you as you shop.  Many of these can be found in the regular grocery store.  Others can be purchased in health stores or online.

5-When choosing a toddler multivitamin, read the label and choose one that does not contain synthetic DHA.  Look for the presence of fish oil listed in the ingredients.  (The most common fish oils are tuna, cod, sardine, and anchovy.)  My children love Nature's Plus Animal Parade Grape multivitamins, which do not contain DHA.  Animal Parade also sells separate fish-oil based DHA or Omega supplements, which I have listed below.

6-Don't think that just because something is organic, it contains natural fish oil DHA.  Many organic formulas with DHA have gone to using synthetic DHA.  This is a controversy within the guidelines of organic certification.  Honest or not, it happens, so read labels!

7-Unfortunately, for many infants, eliminating DHA does not eliminate GERD, but it does reduce the severity of some of their symptoms.  And as a GERD mama, I know: every little bit counts!

Tuna Oil DHA food products for infants/toddlers:

Gerber 2nd foods with DHA
Gerber DHA cereal

Juicy Juice Grape DHA
Enfagrow Vanilla toddler formula

Natural Fish Oil DHA/Omega Oil Supplements:

Nordic Naturals Children's DHA

http://www.nordicnaturals.com/en/Products/Product_Details/98/?ProdID=1442

Animal Parade DHA

http://www.naturesplus.com/products/productdetail.asp?criteria=search&searchVar=29999&productnumber=29999&category=12

Animal Parade Omega 3/6/9

http://www.naturesplus.com/products/productdetail.asp?productNumber=29994

Bluebonnet Omega 3

http://www.bluebonnetnutrition.com/product/310/Natural_Omega-3_Chewable_DHA_Softgels

Child Life Cod Liver Oil

http://www.childlife.net/?q=node/56

To read more about the Australian study regarding synthetic DHA (and ARA) and infant weight gain
http://findarticles.com/p/articles/mi_m0ISW/is_243/ai_109946504/

To read more about the Cornucopia study regarding synthetic DHA and GERD babies

http://www.cornucopia.org/DHA/DHA_Executive_Summary_web.pdf

New Dallas Study Links GERD to Autoimmunity

A new study coming out of UT Southwestern Medical Center at Dallas suggests that GERD is more the result of an autoimmune disorder than acidic digestive juices.  In studies performed on rats (who were surgically altered to trigger reflux), the damage to the esophagus did not occur immediately, as was expected once the bile and stomach acid began to enter the esophagus.  In addition, the damage did not begin with the outer layer of esophageal tissue which was exposed to the acid, as would have been expected.  Instead, the damage occurred weeks later and began in the deeper tissues (which were not directly exposed to the acid) then worked their way out to the upper layers that had been exposed.

How did this happen?  Researchers discovered the reflux caused the cells in the esophagus to begin releasing cytokines--chemicals associated with autoimmune disorders--which then drew inflammatory cells to the esophagus, creating the disease and the damage.

What does this mean to parents of GERD babies?

1-It reinforces the current theory that GERD is tied to genetics, which has been considered the most probable cause of GERD for the past 10 years.

2-It suggests the medical treatment of GERD would need to be changed.  Current medications are designed to neutralize or shut down the production of acid in the stomach.  (This, of course, can cause intestinal trouble for the patient since some acidic juices are necessary for the digestion of food.)  Autoimmune diseases are treated through other types of medications.  If the stomach acid is not the primary cause of esophageal damage, then perhaps medicine designed for autoimmune digestive disorders may have some benefit.

3-It reinforces the fact that GERD (as opposed to GER or periodic reflux) is a chronic condition and will need to be monitored and controlled over the course of the patient's lifetime.

4-It strengthens the theory that GERD, like other autoimmune disorders, may lie "dormant" in an individual until triggered by an illness, injury, food sensitivity or the environment.  This is particularly important to keep in mind regarding the recent literature that implicates synthetic DHA/ARA as a GERD trigger in infants and toddlers.

To read more about this study and the intended follow-up study on humans, visit http://www.newswise.com/articles/view/558821/?sc=mwhr;xy=5049990