Gluten Sensitivity, Autoimmunity, and GERD

A few weeks ago, during Mother's Day, I reflected upon all the changes that had taken place in my girls in the past few weeks.  For some people, these changes sound like nothing celebratory at all.  For me, they were acutely significant.

My younger daughter now sleeps through the night regularly.  My older daughter no longer awakens from excessive thirst in the middle of the night--a significant step toward sleeping through the night regularly, too. Both girls go to sleep more readily, and they do not require a light in the hall outside their room.  

Neither of my children has had colds or fevers or vomiting issues during this time period.  My younger daughter has also not had any issues with croup or stridor.

My younger daughter has been without an ear infection or fluid in her ears for about a month now.  She has started to put on a little weight.

My older daughter no longer has random meltdowns during the day.  She is becoming more flexible and able to manage variation in her daily routine.

Neither one has had issues with acid reflux.

Now, I confess, I have not adhered to a strict, 100% gluten-free diet these past two months with the girls.  They have had an occasional cookie or pretzel or cracker here and there.  And my older daughter has gotten away with more "rule breaking" than my younger daughter because she has been exposed to more gluten-ridden "treats" at preschool.  (She has, however, learned to ask the all-important question: "Is there gluten in that?" to which she usually receives blank stares from her three-year-old classmates.)  

The other day, my younger child found a box of saltines in the pantry, which she calls "Dada's crackers."  She was asking for them and reaching for them when I heard my older child say, "Those are the kind of crackers that will make you sick.  Mama will give you the good crackers that will keep you healthy."  She's learning!

After viewing Dr. Osborne's videos, it has become absolutely clear to me that infants and toddlers diagnosed with colic, gas, or reflux ought to be evaluated for gluten sensitivity prior to being placed on antacids or proton-pump inhibitors.  I particularly appreciate the detail with which Dr. Osborne explains gluten sensitivity as a symptom of autoimmune disease: this link clearly strengthens the recent Dallas study detailed on an earlier post New Dallas Study Links GERD to Autoimmunity.  I have struggled with autoimmunity since I was a child.  My presenting symptoms at the time seemed limited to vitiligo; however, having lifelong symptoms of digestive discomfort, I was finally diagnosed through a blood test as having a wheat allergy three years ago.  I did not know until last night that the two were related: that all autoimmune symptoms--whether vitiligo or diabetes or acid reflux or asthma or autism spectrum disorders--were all symptoms of the same problem: gluten sensitivity.  Approaching treatment from a dietary standpoint can save parents a large financial burden and children a lifetime of long-term complications due to strong medications which manage the symptoms but not the disease.


(Incidentally, I am starting to take better care of myself.  Because I was diagnosed shortly before my first daughter was born, I focused my energy and attention on her needs--not my own.  Had I studied autoimmunity and gluten sensitivity as thoroughly then as I have now, I may have saved us all a world of trouble!  For my own part, I can attest that my stomach issues have improved.  My vitiligo, well...that will probably take longer to resolve!)


For more information, watch Dr. Osborne: Gluten Sensitivity and Children

Gluten Free Diet

It's been a month since I last blogged about GERD, and some of you, (my friends who follow me privately), have been asking where I have been.  Well, I've been experimenting with a gluten free diet for the girls. After my experiment with the goat's milk (which enabled them to sleep better until they simply refused to drink it based on taste preferences), I realized there was a clear tie between their diet and their sleep--and it was possibly related more to protein (casein) than sugar (lactose).  So I took it one step further and decided to try the gluten (grain protein) part of the Gluten Free Casein Free diet, since gluten and casein intolerance often go hand-in-hand.


I began the gluten free diet because I understood it could work miracles on the sleep patterns and behavior issues as well as the dietary struggles of individuals with a variety of conditions: acid reflux, autism, Asperger's, ADHD, Crohn's, colitis, irritable bowel, hypoglycemia, schizophrenia, wheat allergy, etc.  This diet relies heavily on what is considered "the brain-bowel connection."  In other words, the diseases and conditions mentioned above often have overlapping symptoms because what happens in the digestive tract impacts the way the brain is able to function: if the body is unable to absorb all the nutrients necessary for optimal health and well-being, certain "triggers" are going to go off--triggers which (besides digestion) affect behavior and sleep.


I have a very mild wheat allergy myself: I can eat wheat, just in limited amounts.  I don't have to worry about elimination or cross-contamination.  But while mine was diagnosed through a blood test after years of obvious trouble, my girls' symptoms are (according to our medical professionals) more behavioral than physical, and as behavioral problems, they fall under the category of "Mom's not being tough enough."  So runs the repeated advice I get.


Of course, the doctors are not present in the middle of the night when I'm lying awake listening to my daughter struggle to sleep, as she tosses and turns for hours on end, pleading, "Please, please, please, Jesus!  Help me sleep!"  


They're not there when she has random outbursts or meltdowns (not tantrums, mind you) that include physical shakiness or paleness--when a little bite of protein instantly calms her and she's back to normal.  This, from the child who is so self-controlled she generally puts herself into time out when she knows she needs it--sometimes before she does something naughty!


There are times when she awakens on her own, rolls over, and goes back to sleep.  Those are not the issue.  The problem arises when she cannot sleep for 2 or 3 hours at a time.  Usually, she tells me she doesn't feel good but can't explain why.  Last night, for the first time, she offered the strange response, "My hands hurt."  Upon further questioning, she explained, "My hands are trapped and I can't use them."  I don't know if her hands "fell asleep" and she couldn't move them when she first awoke, or if something else was the issue.


Sleep is important--for anyone, but particularly for young children as they are growing and developing.  When they go without sleep, they become easily frustrated and more prone to illness and meltdowns.  Most of the professional advice I have received (i.e. ignore them at night and they will stop making noise when awake) neither works nor addresses the problem.  Ignoring the sleepless child at night may enable the parent to sleep more, but it doesn't enable the child to sleep, which is the core root of the problem!


So I put the girls on a gluten free diet.  It was easier with my younger child, who is home with me all day and never out of my sight.  The diet worked wonders for her.  Random meltdowns during the day diminished, and her sleep at night improved.  She now regularly sleeps through the night, and her night terrors are less frequent.  On those days when she does eat some gluten, the night wakings and night terrors return.  Clearly, there's a connection.


With my older daughter who goes to preschool twice a week, it's been a little more difficult, since she is more likely to get crackers and pretzels during the day.  But with the teacher on board with the new diet, and with my daughter exerting her 3-year-old self-control to eat only what I provided in her lunch box, I was able to eliminate gluten from her diet as well.


Her results were not so drastic.  Her meltdowns during the day are diminishing, but her sleep at night is not improved, and that is a primary concern for us.  Ideally, I would like to keep her on the gluten free diet and switch back to goat's milk to see how she does, but that's going to be a bit tricky.  These things take time, and you can't just switch a preschooler's diet all at once, especially when that preschooler is a picky eater!


While there are plenty of research sites out there on the Internet for eating gluten free, one of the best books I have ever read on the subject is Breaking the Vicious Cycle by Elaine Gottschall, which discusses the specific carbohydrate diet--one that is even more restrictive than the gluten free diet.  However, this book clearly explains the digestive disruption that takes place when an individual has been on antibiotics or acid-reducing (or suppressing) medications.  This disruption is consistent with my post on Proton Pump Inhibitors, so I won't go into repetitive detail here.  Suffice it to say, I think any parent weaning their child (infant or toddler or even older) off acid medication or multiple rounds of antibiotics should spend a month or two placing their child on the gluten free diet or the specific carbohydrate diet, in order to allow the digestive tract time to heal, before gradually introducing the child to gluten products again--if they choose to return their child to a normal diet.  And for those parents whose GERD children continue to suffer from insomnia and random meltdowns, the gluten free diet is well worth considering as an option.

Pediatric Insomnia and Hope in a Goat

This post is for those of you moms out there who, like I, wonder when our children will ever sleep through the night.  We have tried every sleep strategy out there; we monitor diet, exercise, schedule, routine, and outdoor play.  We use massage and aromatic oils and calming music and low light.  We do everything "right," yet our tired offspring are unable to sleep.  We hit a period where our children sleep through the night for a week or maybe two--at the most even three--and then insomnia returns...with a vengeance!

In my experience, I have had to defend myself against the critics who insist I have somehow created my child's sleeplessness or allowed her to become a restless master of the night.  I know they are wrong, but I cannot fault them, for so many books and voices in medicine today have trained them to think that any time a child cries after the sun goes down, she is wickedly manipulating all around.

From my reading and my conversations with other mothers of children with acid reflux or autism or ADHD, pediatric insomnia is a common experience.  These children seem unable to "wind down" at night no matter how calming or relaxing the routine.  They want to sleep; they just can't.  So they try and they toss and they turn and they eventually end up crying or fussing hours later because sleep simply evades them.  And once they do fall asleep, they often awaken just a few short hours later, wide-awake and unable to sleep again.

My child has pediatric insomnia.  It often takes her 2 hours to fall asleep, and then she's usually out for about 4 hours.  After that, she's awake for 2-3 more hours, followed by 3-4 more hours of sleep.  So in a 12-hour intended sleep schedule, she clocks around 7-8 hours of sleep--nowhere near the recommended 12-14 hours of sleep for her age group.  She can't even catch up on sleep during naptime, because she tosses and turns then, too.

And yes, we've tried everything, it seems.

Autistic children are now being treated for insomnia with melatonin.  Apparently a few weeks of melatonin therapy allows the brain to "reprogram" itself, enabling the child eventually to fall asleep naturally once the therapy has stopped.  While there is a significant number of children who have both autism and GERD, I am not aware of any studies yet concerning GERD children and melatonin therapy.  I wonder, though, if there could be some benefit there...

In the meantime, I have switched the girls to goat's milk.  Despite all the claims that goat's milk has a sweet, rich and creamy taste ("like liquid sugar!"), I can't stand its taste.  Perhaps it is simply the brand I buy: the only brand I can find.  I find it to be slightly metallic, whether it's fresh or evaporated.  I feel guilty pouring it into their cups and handing it to them, but they at least have not complained.

Personally, I feel defeated right now, and I am placing my hope in a goat.  And prayer.  But at least goat's milk is a strategy that does not involve ongoing medication and side effects, and the only complication for me happens to be its expense compared to cow's milk and my own sorrow that at least for a time I am with-holding from the girls what I consider the sweet, rich, creamy taste of cow's milk.

Why did I switch to goat's milk?  Its protein is different from cow's milk protein, so it is more easily digestible than cow's milk.  It is reportedly safe and helpful for children with acid reflux, reflux-induced asthma, chronic croup, cow's milk sensitivity, and other digestive issues.  Apparently it does not create gas, bloating, or phlegm, which can also be problems with cow's milk.  And it supposedly contains more tryptophan than cow's milk, to help naturally with insomnia.  Since my elder child has insomnia and my younger child has recurring croup/asthma/stridor, I figured it can't hurt--and maybe, just maybe, it can help.

Of course, goat's milk still contains lactose, but many new reports suggest it is not the lactose in dairy products to which so many people are allergic or sensitive--it is the protein.  This is why infants who do not tolerate cow's milk or soy formulas do so well on home-made goat's milk formula--something I wish I had known back when the girls were infants!

Now I realize I sound skeptical and perhaps even irritable in this post, for which I am sorry.  I am currently exhausted--physically and emotionally--from trying to help my poor child sleep.  And of course, children who are chronically fatigued tend to have more extreme outbursts or meltdowns than children who are well-rested (something common between acid reflux and autistic children.)  And parents who are chronically fatigued sometimes fare no better!

So I am exhausted, but I am hopeful.  Hopeful that goat's milk will be as much a miracle cure for my little girl as it was for Clara in the old Johanna Spyri book "Heidi."  After all, Clara's mysterious failure to thrive, poor digestion, need to remain propped upright, and gross motor delays were all miraculously cured by goat's milk and mountain air!  If her symptoms--which sound an awful lot like severe acid reflux--can be cured, maybe so can my daughter's.  And if the goat's milk doesn't work, then I'm headed for the mountains!

For some interesting reading on goat's milk:
http://www.healthnews-nz.com/goatsmilk.html

Dr. Sears (aka "America's Pediatrician") also addresses the health benefits of goat's milk:
http://www.askdrsears.com/html/3/t032400.asp

Dr. Sears even offers a "Goat's Milk Formula" recipe for infants:
http://www.askdrsears.com/html/3/t032401.asp

GERD and Shaken Baby Syndrome

Before I became a parent, the only time I ever heard about Shaken Baby Syndrome (SBS) was on the news.  Usually, the incident occurred in an inner-city area.  Drugs and alcohol were almost always involved, as was general family dysfunction.  I remember seeing images of distraught mothers or dazed fathers/boyfriends weeping and professing sorrow over the incident, and I remember thinking: how could you do that to your own child?  How could you put your child at risk by staying with a violent and abusive partner?!

This perception of SBS, though not directly supported, was nevertheless reinforced in the parenting class my husband and I took at the hospital where our first daughter was born.  SBS was addressed primarily from the standpoint of knowing the symptoms and being aware of whether a family member or babysitter were prone to violence and likely to harm our baby.

Recent studies, however, change all that.  Although it is still more likely for a baby to be shaken by an adult male rather than an adult female, the stereotype of an angry boyfriend shaking his girlfriend's baby while high on drugs is steadily being replaced by the more likely scenario of a loving but exhausted father shaking his reflux baby during a nervous breakdown without even realizing what he's doing.  Current research suggests that over 90% of all SBS cases are the result of a parent losing control due to the incessant crying of a baby with reflux or colic.  Truth be told, colic and pediatric GERD significantly increase a baby's risk of Shaken Baby Syndrome.

Before I became a parent, I never would have described anger as a routine weakness in me.  Impatience and at times arrogance?  Yes.  Anger?  No.  Sure, things upset me at times, but never anything I couldn't talk out or work out or pray out of my system.

But when reflux raised its ugly head in my household and my girls cried incessantly--sometimes at the same time, sometimes one right after the other, sometimes for hours, days, or weeks on end with only a few intermittent periods of quiet--I was shocked and embarrassed and humiliated to discover a Hulk-like maternal rage born in me.

I wasn't really angry with them.  I knew deep down inside that they were crying out of pain and couldn't help what they were doing.  I was angry with the reflux, angry with the people who told me to just let them cry, angry with my own inability to console them, angry with my utter lack of sleep, angry with my own post-partum depression and fried nerves, and yes, I was angry with God.

There were times when every strategy to calm and soothe them failed, and I felt the rage boiling and rising inside like volcanic lava ready to erupt--times when I realized my grasp on them was becoming tighter and tighter--times when I had to put them safely in their cribs and walk away.  I hated walking away--hated the thought of leaving them alone in their room with their pain to cry while I withdrew my presence, if not my comfort, from them.   There were times when I sat in the hall outside their room and cried--times when I paced the house yelling at God--and times when I fell down on the floor pleading with God not to abandon my children or me, but to calm them when I couldn't, and to protect them from my anger, and to utterly kill and destroy every bit of anger and rage inside of me.

It has not been an easy road.  The transformation of my inner self has been a long and difficult time coming.  But we are past the stage of routine excessive crying now, and I have learned--primarily through prayer--to manage myself and subdue my own anger before even trying to deal with the girls.  We still struggle periodically at night with reflux triggered by illness or teething, and that can bring on hours of crying and fussing.  We still struggle by day with periodic and sometimes completely random meltdowns, which I understand are still par for the course.  But where I used to watch the news and judge the parents or guardians of babies who had been shaken, I now listen to those same stories and weep with complete humility and compassion, knowing to the core of my soul, "There but for the grace of God, go I."


For more information about GERD, SBS, and tips to cope, please visit the following sites:
http://www.pollywogbaby.com/refluxandcolic/shakenbabysyndrome.html

http://www.parenting-journals.com/81/colic-and-shaken-baby-syndrome/

http://www.colichelp.com/shakenbabysyndrome.html

http://www.dontshake.org/sbs.php?topNavID=3&subNavID=25&navID=283

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/

Proton Pump Inhibitors: The Good News, the Bad News, and the Unknown

I have pretty strong opinions about PPI's (proton pump inhibitors).  I believe they initially saved my daughters' lives.  I also believe over time they compromised their optimal health and well-being.


When my daughters were first diagnosed with acid reflux disease, they were placed on Prevacid solutab.  Neither one of my children was "thriving" at the time.  My first daughter was dehydrating, losing weight, unable to nurse, and choking so severely she had difficulty breathing both day and night.  My second daughter could not keep breastmilk or formula down and had acid congestion so severe she had yellow drainage coming out of her eyes.


At the time, the idea of putting my infants on a prescription medicine was a little disconcerting but clearly necessary.  I did not know what type of medicine Prevacid was, or how it differed from a more traditional antacid.


But by the time my girls were nearing the ages of 1 and 2, certain difficulties were starting to appear.  Their immune systems were mysteriously weakened to the point they spent four months straight suffering from fever and congestion non-stop.  One of them had routine diarrhea.  They both suffered from recurring yeast rashes on their skin.  One of them had tremors in her hands and legs.


Up until that point I had been told that Prevacid was a medicine with little to no side effects, safe enough for people to take it long-term for years and years without end.  But then I began doing research, and what I discovered frightened me.


Traditionally, most doctors say that PPI's (proton pump inhibitors, like Prevacid) are the safest medicine to take with the least side effects, and patients can take them for as long as they want and nothing bad will happen. Part of the reason they say that is because it is the easiest and most efficient way to give immediate treatment to the symptoms of acid reflux disease.  Another part is because PPI's are still so new that long-term studies are developing but not really concluded.  

But PPI's are designed to shut down the body's ability to produce acid so any part of the body that has been damaged by acid (stomach, esophagus, etc.) has time to heal. Then, the patient is supposed to come off the PPI. They're only supposed to take it for 8 weeks total. In extreme cases, the FDA has just approved it for 3 rounds of 8-week therapy, but that is the absolute longest someone is supposed to take it. To take or prescribe a PPI indefinitely actually goes against the FDA warning.

The body needs acid to digest food and supplements. Take the acid away, and the body does not absorb the nutrients fully. Right now the biggest long-term side effects in the news are an overgrowth of unhealthy bacteria/fungi in the intestines causing routine diarrhea and yeast rashes(what the girls experienced), compromised immune system (also what the girls experienced), increased susceptibility to pneumonia, bone density loss and osteoporosis.

But there are also specific essentials which PPI's interfere with, like the body's ability to absorb calcium, vitamin D, iron, and folic acid.

Now, I repeat these studies are new and just now coming out. There's not a whole lot of literature out there. Some doctors may not know about them; others may dismiss them until further studies substantiate more evidence. Some of this information I got verbally from talking with nurses, natural health therapists, and toxicologists, so I don't have anything written to point to, anyway.


In our case, my girls' overall health improved dramatically once I took them off the Prevacid.  I switched them instead to Colic-Ease Gripe Water, and within a month their colds, fever, yeast rashes, and diarrhea disappeared.  In addition, the trembling in my daughter's hands and knees went away as well.


I can't say PPI's should never be prescribed for infants, or acid reflux patients in general.  I believe they are important medicines with a unique design to completely shut off the acid production to allow stomach and esophageal tissues time to heal.  However, I believe they should be prescribed and taken with more caution than I typically see in the medical world.  And I definitely think parents of GERD babies should be aware of some of the long-term side effects of PPI use before they allow their little ones to take it indefinitely.  


At times I wish I were more educated then than I am now.  But as with other areas in life, we learn and grow as we go.  As parents, we cannot kick ourselves for decisions we made in the past when we had our children's welfare in mind, even if in the long run we realize we might have made a different decision if we had known all the facts.


If I had to do it all over again, I would probably try Colic-Ease Gripe Water from the beginning.  If something stronger were necessary, I might use Prevacid again; however, I would not keep my baby on it longer than the recommended 8-week therapy period.  At that point, I would probably return to gripe water therapy instead.  But these are my experiences and my thoughts, and we all need to make our own informed decisions.


For further reading on some recent studies regarding long-term Prevacid use, please see the following articles:


http://www.medicalnewstoday.com/articles/150050.php


http://www.medicinenet.com/lansoprazole_delayed_release-oral/article.htm


http://www.drugs.com/pdr/prevacid.html


http://ppi-lawsuits.blogspot.com/


http://www.ehow.com/about_5117421_longterm-effects-prevacid.html

Infant Formula Contact Information

Next week I will be taking time off from writing my blog so that I can concentrate on my follow-up with formula companies.   (See my earlier post concerning DHA if you are new to my blog, titled "Something Fishy: Two Sides to DHA.")  In speaking with other GERD mothers, some of them have expressed interest in writing to formula companies as well, so I am including the primary contact information I could find for each of the three major US companies: Enfamil, Nestle, and Similac.

In writing, remember to stay positive.  My primary concern in writing is not to get the companies to eliminate DHA/ARA from formulas: instead, it is to ask that they offer a GERD-friendly alternative that either contains no DHA/ARA or that contains natural DHA/ARA.  If you wish to do the same, keep in mind that Enfamil already has begun to produce a toddler formula with tuna oil DHA, Nestle has a toddler fruit juice with tuna oil DHA, and Similac produces a hypoallergenic DHA/ARA-free Neocate formula for infants.  In addition, Enfamil still produces DHA/ARA-free formulas for Canada and other countries: it is only in America that these Enfamil formulas are no longer available.

1.  Enfamil:  Enfamil provides an online customer support with limited space to write.  They do respond rather quickly, however.  They also provide a snail mail address where you can write to follow up your online message or add more information.  The snail mail address goes directly to a division of Mead Johnson that deals with the nutritional components of their products.

Online Customer Support:

https://www.enfamil.com/app/iwp/B2CLoadContactFormInfo.do?BV_UseBVCookie=yes&csred=1&r=3442108093

Regular address:

Nutritional Medical Services

Mead Johnson Nutrition

2400 W Lloyd Expressway

Evansville, IN 47712-9920

2.  Nestle: The primary address I found for Nestle was traditional snail mail.

Nestle Good Start

Start Healthy, Stay Healthy Resource Center

445 State St.

Fremont, MI 49413-0001

3. Similac: Similac provides online customer support; however,  again the space to write is limited.  They also provide an email address where you can send a longer, more detailed message.

Similac Online Customer Support

https://similac.com/contact-us?utm_content=similacprime

Similac Email Address

rosswebmaster@abbott.com 

My best wishes to you, if you choose to write.  I will report back later on the responses I receive, to keep you informed.

Colic and GERD

When my daughters were first diagnosed with GERD, many people--both professionals and nonprofessionals alike--would roll their eyes and say, "GERD is just another word for colic.  Babies cry.  What's the big deal?  Get used to it!"

Our pediatrician was hardly in agreement.  Colic, he informed me, may have once been an "umbrella term" for a variety of conditions yet unknown and undiagnosed.  Acid reflux may have indeed been a condition caught under the umbrella of colic before doctors and researchers knew what it was.  Still, in his own words, "Acid reflux is ten times worse than colic."

What does that mean?

Colic is often diagnosed using the "Rule of 3's."  I have seen different variations of the Rule of 3's, but the following is pretty standard:

The baby cries for more than 3 hours a week
for more than 3 days a week
for more than 3 weeks in a row
or up to 3 months.

Using simple math and applying it to the cries associated with GERD would create the following "Rule of 30's:"

The baby cries for more than 30 hours a week
for more than 30 days a month
for more than 30 weeks in a row.


I realize this sounds ridiculously extreme, but from my own experience, the "Rule of 30's (or 10 x worse than colic)" had some surprising accuracies.  In their first few months, there were days when each of my girls cried for 8-10 hours in a row.  Although this incessant crying decreased after a few months, it returned at 18-20 months,  when my girls both clocked 9-10 hours of straight crying (usually during the night) brought about by reflux triggered by teething anxiety.

Of course, the first 3-4 months are always the worst, for GERD babies and colicky babies.  But whereas colicky babies grow out of their troubles, GERD babies sometimes do not.  Acid reflux can stay with an individual throughout life, flaring up and causing pain due to a variety of triggers, from food to anxiety, illness to teething.

Now, my purpose in this post is not to argue whether GERD or colic is worse: the truth is, they are both difficult to handle, they are both medical issues, and they share some similarities both in symptoms and treatments.  Because my girls' reflux is currently controlled through diet and natural remedies, and because reflux is most likely genetic, I am always on the lookout for new products that are natural, safe, and effective for infants.

And so I am posting the links to two tummy bands designed with colic in mind.  If used correctly on a GERD baby, keeping the tummy elongated rather than scrunched up tight, I imagine they will also prove beneficial.  My thoughts here circle back to the encouragement of homeopaths and therapists who recommend the gentle pressure of massage on the tummy and the vagus nerve.  Again, I have no personal experience here: only keen interest.

The first band, the Lull-a-Band, was designed by a mother and an International Relief worker, both looking for a simple and effective way to comfort babies with the pain of colic.  It works by applying gentle pressure to tummies that are bloated with gas and constipation, both of which can be also present with GERD babies.

Lull-a-Band
http://www.nocolic.com/



The second band, the Happi Tummi, includes a microwaveable pouch that can be inserted into the band.  The pouch serves two purposes: first, the warmth helps to soothe and relax the baby's abdominal muscles, and second, the warmth helps to release the aromatic oils designed to soothe and comfort.  Because warm baths and aromatic oils have at times had a positive effect on my girls, I am intrigued by the Happi Tummi's design.  My only caution, of course, would be to make sure you do not "over-microwave" the pouch, and always, always, always check its warmth before strapping it onto the baby!!  If it is too warm to your touch, don't put it anywhere near the baby!!  (You can also use the Happi Tummi band without the microwaveable pouch.)

Happi Tummi Natural Relief
http://www.happitummi.com/

Night-Time Woes and Sleep Positioners

My girls are finally sleeping through the night.  At least, they were prior to this past weekend when they picked up colds.  But for the past month, the nights they slept outnumber the nights they didn't, so that is good news indeed.

Mind you, my girls are 2 and 3 years old.  If you are a GERD mama, you understand the importance of this milestone.  Six months ago I thought there was no end in sight to the nightly drama that occurred in our home.  I pored over all the books recommended by pediatrician and librarian alike, and defended myself to well-meaning friends and strangers who insisted my children would sleep if I just ignored them and let them "cry it out" at night.  The trouble is, the "cry it out" method doesn't work for children with acid reflux.

Think about it.  In a perfect world, the "crying periods" are supposed to gradually decrease from 15-20 minutes at a time to no crying at all, assuming the child is happy, healthy, dry, fed and comfortable.  This method is completely at a loss for what to do with children who have a disease, who are hurting and can't breathe, who cry for 8-10 hours at a time because their pain and fear are so significant.

My first daughter's silent GERD was so severe we couldn't lay her down for even short periods of time because she would aspirate her reflux, choke, stop breathing, and turn purple.  Several times a day and through the night this would happen for her first few months of life.  It got to a point where I was scared to go to the bathroom when I was home alone with her during the day.

Night-times were especially hard.  Our pediatrician was sympathetic to our dilemma.  Because of the Back-to-Sleep campaign as well as legal reasons, he could not recommend that we put her to sleep on her tummy.  But because of her history of choking and her increased risk of SIDS due to her reflux, we couldn't put her on her back, either.

So we held her over our shoulder at night, taking shifts sitting in a recliner so everyone could catch some sleep.  It wasn't ideal, but it worked.  It was the only thing that worked.  Car seats and motion swings scrunched her tummy up tight and contributed to her reflux.  Propping her mattress inevitably resulted in her turning around so her legs were elevated instead of her head.  And so we took shifts until we felt she was old enough to go to sleep on her tummy.

My second daughter had an easier time finding her position at night.  Since she began lifting her head and rolling over when she was less than two weeks old, I had no problem at all putting her on her tummy to sleep.  I even let her sleep in bed with me at an early age, and she would snuggle into my arm and prop herself up, as if she knew that were the best position for her to sleep.

Of course, getting GERD babies to an age where they can sleep comfortably and safely on a pillow doesn't automatically guarantee they will sleep through the night.  GERD babies often have a higher incidence of enlarged tonsils and adenoids, sleep apnea, asthma, and night terrors, as my household knows all too well through experience as well as reading.  Most of the literature I've read regarding these issues pinpoint four years as the target age for children with these issues to sleep through the night.  In perspective, then, my girls must be early learners, rather than late bloomers!

I used to tell my husband I was going to "invent" a GERD baby sleep positioner: one that would elevate the baby or enable the baby to be harnessed into an upright tummy position to reduce their pain and their risk of aspiration and SIDS.  Of course, someone beat me to it!  (In all probability, the Tucker Sling may have already been in production, but I was unaware of it at the time and no one recommended it to me--one of those situations where ignorance is probably not bliss!)

The Tucker Sling
The Tucker Sling comes in a variety of sizes from newborn up to 30 pounds, and it can also be custom-made to fit your child.  The sling itself is a safety harness that secures your child if you prop the mattress to the 30 degree angle recommended for acid reflux babies.  The sling is apparently versatile enough that you can position your baby on his or her back, tummy, or side.  You can also buy a wedge to secure the baby to instead of propping the mattress.  The sling-wedge combination fits into pack-and-plays rather than standard crib sizes, so make sure you order the correct size.  Many insurance companies also now cover the cost of the Tucker sling.
http://www.tuckersling.com/default.htm

The Nap Nanny
The Nap Nanny was designed by a mom.  (Yea, moms!)  It is a foam positioner that elevates the baby while nestling the baby into a comfortable position and securing him in place with a 3-point lap belt.  Although it is similar in style to a car seat or motion swing, the elevation is not as high, eliminating the pressure on the tummy that is so problematic for reflux babies.  Plus, it is easy to transport and can be used in cribs, pack-and-plays, or on a blanket on the floor.  In all honesty, this is quite similar to the design I had in my head, so I am happy to see another mother had the same idea that I did!  I do not know if insurance companies yet cover it, but it is always a good idea to check just to make sure.
http://napnanny.com/the_napnanny.html

What to do for a Cold?

"My nosy!  My nosy!  My little nosy hurts!"  So cries my two-year-old, now that we have all come down with a cold.  This is the first time since we began daily elderberry that the girls have been sick.  Normally, a cold would trigger a high fever in my older child and an even higher fever in my younger child.  Fortunately, they are fever-free.

But what to do about those stuffy, runny noses and the corresponding chapped faces?  How to help them breathe?

Traditionally, our medical advice has been to try children's cold medicines and antihistamines.  We have discovered, however, that with our younger daughter--the one with the acid-induced asthma--the use of antihistamines triggers stridor.  (This appears to be the case with both diphenhydramine, commonly known as Benadryl and loratadine, commonly known as Claritin.)  Plus, with the recent scandal of cold medicines and antihistamines not being suitable for children under the age of 4 or 6, I wanted to find something I could rely upon with confidence for children in their age group.  But having GERD is tricky, and several of the herbal remedies for cold and flu that are on the market specifically say avoid use in a child with acid reflux.

So what to do?

Today we switched from straight elderberry to Nature's Way Sambucus (Elderberry) for Kids.  In addition to the elderberry syrup, it also contains echinacea and propolis, products which boost the immune system and enable the body to fight viral infections more successfully.  While the straight elderberry is great for daily maintenance, the Sambucus for Kids is designed for more intense treatment during a period of illness.  So far, so good.  The girls like the flavor (of course) and are currently sleeping.  The ever-flowing fountains that were their noses seem to be slowing down.

Of course, I am also using beeswax chapstick and lavender/rosemary baby chest rub, and I would have been using a humidifier if it hadn't broken.  The truth of the matter is having a cold is miserable, particularly for small children whose sinuses are so tiny to begin with.  And my girls typically get knocked down with a cold for 8-14 days.  No fun for anyone!  Whatever I can do to help make them feel better is worth a try, and anything I can do to cut the duration of the cold in two is even better.  We'll see how the Sambucus for Kids works.  It may just turn out to be a Best Pick after all...

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

Gingerbread Cookies

My goal is to add one blog post every day during the work week; however, today is one of those days when I am tired and feel I don't "have it in me" to tackle a lengthy subject.  Plus, spring feels like it is just around the corner, and I know my girls and I can use some play time together.  So in lieu of "information," I am going to suggest an activity that is both fun and practical for GERD toddlers: baking gingerbread cookies.

Gingerbread cookies may sound like a Christmas treat or an old-fashioned old wives' tale, but they really are a fantastic food considering the random vomiting that sometimes occurs with GERD children.  I've been baking gingerbread with the girls since they were old enough to eat solid foods.  Not only do we have fun spending time and baking together, but when we're done the girls have a snack they enjoy eating and helps to settle their sensitive tummies in between meals.  (Gingerbread and apples--or applesauce--makes a great snack for GERD toddlers.)

You don't even have to be a Betty Crocker and make the cookies from scratch.  Just use a gingerbread cookie mix from the baking aisle, or use a box of gingerbread with a cookie recipe conversion on the package.  Of course, regular gingerbread works just as well as gingerbread cookies, but my girls prefer the cookies.  After all, it's so much more fun to roll and cut than simply mix and pour!

So bake a box of gingerbread cookies and spend some time having fun with your GERD baby!!!

Physical Causes of GERD

 Some people think I am obsessed with GERD.  Maybe I am.  My husband and I always said we wanted 3-4 children.  Right now we have two, and both of them have "moderately severe" GERD.  We are fortunate that they never had to be hospitalized or be given feeding tubes, but that didn't mean we didn't face challenges.  We had challenges--lots of challenges--and the GERD is still there; it's just under control--for now.  And since I couldn't find any support groups in my area or any other GERD parents to connect with at the time we were dealing with the "crisis" symptoms, I had to do a lot of reading on my own--especially when it became clear that the Prevacid was doing more harm than good.

Of course, one of my first questions was "Why do they have GERD in the first place?  What caused it?"  Believe it or not, some people told me they thought God was  punishing me for something I had done by giving me two children with moderately severe GERD.  To those people, I could only respond by saying my daughters were blessings--and that God had given them to me because He apparently trusted me to be able to handle their specific needs, even if I didn't trust myself!

Others told me that since my girls had every outward appearance of being healthy, I must be imagining their symptoms or (even worse) inflicting the symptoms upon them by my care of them.  To those people, I could only watch my cries of "You're wrong!  You're wrong!  You're wrong!" fall upon deaf ears.

Because I was dealing with my own physical pain from pregnancy complications and follow-up surgeries as well as post-partum depression, there were times when I indeed wrestled with self-doubt, but that is another story.

For today's post, suffice it to say that GERD is a real disease.  Some babies will outgrow their symptoms after 1-2 years; others will have to manage theirs throughout their lives.  To keep GERD in balanced perspective, here are the current theories as to its cause in infants:

1.  Genetics: One study links it to autoimmunity; another links it to a defect in Chromosome 13.  Studies in both camps are ongoing.  GERD with a genetic cause is most likely a chronic (long-term or lifelong) condition.  For more information on the study relating GERD to Chromosome 13, please refer to the following link:
http://www.post-gazette.com/healthscience/20000719gerdstudy1.asp

2.  Hiatal hernias: The presence of a hernia can be established through medical imaging and treated accordingly.  This type of GERD may or may not be chronic.

3.  Presence of labor-inducing drugs during birth: The natural health professionals I have consulted agree that the use of labor-inducing drugs seem to have a correlation with infant GERD.  They believe the stronger contractions associated with labor-inducing drugs can cause injury to the baby such as hiatal hernias or vagus nerve damage.  I have not found medical research to support this, and neither have the doctors whom I have consulted, whether pediatricians or OB/GYNs.  That doesn't mean it can't be true, though, since homeopathic and medical research hardly ever cross.  It certainly makes sense to me, so I offer it simply as something to consider.  Genetics can't be changed: methods of childbirth can, so if you feel your child is already at risk of having GERD, an induced labor may be something you wish to avoid if at all possible.

Elderberry and the GERD Baby

I was recently introduced to elderberry juice by some friends of mine after my daughter struggled with back-to-back viral infections with severe nausea and high fever.  Since she tested negative for flu both times, our pediatrician could not prescribe Tamiflu.  But with swine flu still making its rounds in our area, we were concerned.

The discovery of elderberry has been a lifesaver to us--or at least, a sanity saver.  Last year (during the 2008-2009 fall/winter season) both my girls were sick for four months straight of nonstop viral illness.  Not fun!  And when my daughter became so ill this past fall, I was determined to  do whatever I could to prevent her from repeating last year's experience!

A weakened immune system can be a symptom of GERD as well as a side effect of long-term PPI use such as Prevacid, so I can not say if one or the other (or a combination) was the reason my girls typically got sick so drastically or remained sick for so long.  I do know there was a period of time where I simply had to keep them away from other children.  While I was glad they had each other, I longed for a time when I could get them "out of the house" and introduce them to a more normal toddler social life.

For the past six weeks, I have given my girls elderberry juice every day, and amazingly, they have not had a single illness despite being exposed to children in preschool and Bible study with runny noses, fevers, and even strep throat.  What's more, my younger daughter had suffered from chronic croup and recurring stridor since she was an infant.  She was being evaluated for acid-induced asthma when we began the elderberry.  Recently, however, her croup has completely disappeared.  The only thing I can attribute this remarkable recovery to is the introduction of elderberry juice, which reportedly is a natural remedy for asthma and bronchial irritation.

There is a variety of elderberry juices and syrups on the market.  Syrups, which usually include some form of sugar, are typically sweeter and can be administered in higher doses.  Juices or extracts, which typically do not contain sugar, are often mildly bitter and should be administered in smaller doses.    I prefer the juice because you can begin giving it to a GERD baby as soon as he or she is old enough to drink juice, whereas the syrups with added sugars may cause diarrhea if administered too early.  I mix 1/4 teaspoon of straight elderberry juice into a small cup of apple juice for my girls at breakfast.  They love drinking their "purple juice!"

I am including a link to Wyldewood Cellars' recent newsletter, discussing the use of elderberry to prevent the swine flu.  Wyldewood is a winery located in Kansas which sells elderberry juices (as well as wines).  Their juice is my personal favorite (a Best Pick!), as it contains no added sugar and is very cost affordable.  However, it is a local cellar, so I had to stock up the last time I visited my family in Missouri.

If you do not have a health store near you that sells elderberry (also known as sambucol or sambucus,) you can order online at Amazon.com.  I have listed a few varieties in my GERD Mama store for you to peruse if you cannot find a provider near you.

To Read About Elderberry and H1N1 Swine Flu Protection (page 3 of the attached newsletter)
http://www.wyldewoodcellars.com/PDFs/NL%2009-09.pdf

The 5S Model Revised

When my husband and I were expecting our first baby, we attended an 8-hour hospital class designed for new parents.  One of the sessions gave us practice in the 5 S Model of quieting babies.  Of course, we were given the typical line that "You have to do them exactly right, or they won't work."  We swaddled and swung and vigorously shushed our model plastic babies under the hawk-like eyes of our nurse instructor.  We were so naive! We actually thought the 5 S'es would work!  Then our daughter was born and the truth hit us: when you've got a crying GERD baby, you're in it for the long haul.

So if your GERD baby is like ours and the typical 5 S'es don't work, give these modifications a try:

1. Sucking
Sucking is often last on the quieting list, but I am placing it first.  It is of utmost importance for GERD babies.

First of all, many of them have difficulty sucking and swallowing.  Allowing them the opportunity to suck on an orthodontically designed pacifier in between feedings gives them almost round-the-clock practice.  And as we all know, practice makes perfect.

Secondly, their failure to thrive means they need more feeding sessions than babies without GERD.  With our first baby, we were told to feed her every two hours during the day and every four hours at night.  We were told not to deviate from this schedule, or we would be creating an obese child who relied on food for comfort.  What a joke!  Unfortunately, it was not very funny, and with her rapid dehydration and weight loss, we soon learned we had to feed her a little bit every 30-60 minutes during the day and every 90-120 minutes at night to keep her nourished and comfortable.

Sucking may not calm the GERD babies instantly--but it does have longterm benefits by providing them with the skills and nourishment they need to thrive.

2.  Side vs. Stomach Position
Skip the infant side position and place the baby on her stomach, resting on your forearm.  It's called the "colic hold" for a reason.  We were taught to hold the baby's head in our hand and rest her bottom in the crook of our elbow.  Reversing her position so her head was nestled on our forearm and her tummy was in our hand allowed us to apply gentle pressure to her tummy, which helped.  We were also able to lower our hand to a natural position so that her head could still be elevated to aid with the reflux.  Putting her on her tummy on the floor or bassinet during waking hours helped as well, particularly if a small burp cloth was rolled and placed under her tummy.  I used to tell my husband that when our girls were older and didn't require so much round-the-clock care, I would design a stomach-positioner for GERD babies much like the head-positioner for premature babies.  Of course, now there are stomach-positioners on the market!  (More on those in another post.) How I wish we had some when our girls were infants!

3.  "Shh-shh--shh" vs. The Darth Vader "Shhhhhhhhh"
I don't know why our nurse encouraged us to bounce the baby vigorously while breathing a fast-paced "Shh-shh-shh-shh."  Not only does this quick-paced pattern not calm a GERD baby, it also makes you so dizzy you feel like you're going to pass out.  I don't know anyone who would be calmed by this motion and noise.  Newborns have the amazing potential to read our emotions, and since GERD babies are irritable and anxious to begin with, they don't need any extra tension to aggravate them.

Instead, think of Darth Vader.  While holding your baby and gently patting her back, take a deep relaxing breath in...then let out a long "Shhhhhhhhhhh."  Follow that repetition for as long as it takes.  Deep breath.  Darth Vader "Shhhhhhhhhh."  Deep breath.  Darth Vader "Shhhhhhhhhh."

It won't work instantly, but it will prevent you from passing out, and it will help to keep you calm and relaxed, which is essential for soothing a GERD baby.

4.  The Swing vs. The Shoulder Snuggle
Everyone loves the mechanical swing.  Parents can set the baby down, turn it on, and walk away.  Instantly, the baby is soothed to sleep and the parents can do what they need to do, right?  Not necessarily.  The problem with the mechanical swing--and the car seat, for that matter--is that they create one of the worst positions for an acid reflux baby.  Ever hear the stories of the colicky babies who were charmed by car rides, and if you could just keep your baby in the car seat all day long he would be happy?  Ever wonder why your baby screams and cries in the car, so that even a five-minute drive across town becomes a harrowing nightmare, an accident waiting to happen for you, the driver?

Forcing the GERD baby into the seated position through car seats and mechanical swings creates pressure on the stomach and the lower esophageal sphincter, resulting in reflux.  For this reason, one of the best places for a GERD baby to be is snuggled on someone's shoulder, for both physical and emotional reasons.  Gently patting the baby's back or swaying from side to side may be all the vibration the baby needs.  If white noise helps to calm the baby, turn on a fan or a white noise machine.  One of my girls was calmed most effectively when she was snuggled over my shoulder and I was patting her in front of the dryer or the microwave vent.  The pats, the position, the contact, and the noise all helped when nothing else would.

It's for this reason that a harness baby-carrier (like a Bjorn) is better for GERD babies than a shoulder sling.  In the harness carrier, the baby's abdomen can be kept straight with gentle pressure from your body, whereas in a shoulder sling the baby's abdomen is scrunched up tight.

5.    Swaddles vs. Stomach Bands

Swaddling is great until the reflux starts and your baby starts arching her back.  Then her whole body goes rigid and she breaks out of the swaddle like a baby Hulk breaking out of restraining bands.  The best advice here is just to clothe or wrap your baby in whatever seems most comfortable to her.  Usually, warmth and gentle pressure to the tummy are most effective.   I am impressed by the new "stomach bands" that are on the market now designed especially for GERD babies.  These stomach bands look very much like the hernia belt or the belly-band for pregnant women. Some include warming devices that can be microwaved.  I would be a little hesitant to use the warming device on the baby, though.  I will take a closer look at the stomach bands in a future post, but for now, know that they are out there and talk with your pediatrician to see if they might be of benefit to you.

That Special Touch: the Importance of Massage and Exercises

Infant massage and physical exercises are gaining popularity as natural ways to help infants deal with gas, colic, and reflux.   While these exercises have been around for centuries, it seems they have recently resurfaced among women and health practitioners who want to do things "naturally."  In addition, I have found that pediatric physical therapists are often encouraging activities such as these due to the growing number of GERD babies requiring their services.

The four primary ways in which massage and exercises seem to help GERD babies are as follows:

1-They relax rigid muscles, strengthen the abdominal wall, and help expel gas which in turn reduces reflux.

2-The use of herbs such as chamomile and lavender during massage seem to have an "aromatherapy" effect, enabling the baby to calm and relax.

3-The bonding touch of parent-to-child is particularly important with GERD babies because they are so often irritable and fussy.

4-For babies who do better with added rice formulas, constipation can be a problem--and can worsen reflux.  The massage and exercises can help to loosen their bowels.  In fact, I found a sure-fire way to stimulate a bowel movement in my constipated baby was to do the infant massage while she was in a warm bath.  (Inevitably, we would end up with a few floaters!)

Some homeopathic experts and physical therapists also assert that abdominal massage and exercises can stimulate the vagus nerve, an important nerve that runs from the brainstem to the colon.  If injured or imbalanced, this nerve can trigger a variety of GERD symptoms, including reflux, damage to the esophagus and the lower esophageal sphincter (LES), dysphagia (difficulty swallowing), dysphonia (difficulty speaking), irritability, and asthma, in addition to a variety of other symptoms not usually associated with GERD.  At one time, the primary surgical treatment of GERD was to remove the vagus nerve branches leading into the stomach.  This procedure has since been replaced by other surgical options as well as non-invasive therapies such as medication and/or massage.

There is a number of massage techniques and exercises you can do with your infant.  I found a few in particular seemed to work best with my girls: the clockwise massage circling the baby's belly button, the "I Love U" massage focusing gentle pressure on the left side of the baby's abdomen, and the "bicycling" exercise in which you gently pump your baby's legs.  These exercises can be viewed in the following links.

Infant massage video from "The Pregnancy Show" (Clockwise massage and "I Love U")

http://www.youtube.com/watch?v=kZ4HPREfBgo

Infant exercises for gas/colic/reflux (Bicycling)

http://www.youtube.com/watch?v=doywOORSWJg&feature=related

I understand there are actual classes you can take not only to learn how to do these with your baby but also to become certified to teach them.  I did not take an official class, and I am not certified to teach, so the only advice I am offering here is that of a mom who has seen the benefit these techniques have with GERD babies.  Of course, they did not alleviate all of my girls' symptoms, but they did serve to lessen some of their discomfort, and if you are like me, you are willing to do anything to help your baby.  I have recently re-implemented the massage with my girls at bedtime even though they are older because it seems to help them wind down and sleep through the night--two things with which they have always struggled.

Of course, these techniques may be used throughout the day as well.  Because GERD infants sometimes have difficulty lying flat on their backs, you may want to place the baby in an inclined position for both the massage and exercises.

Herbalists often encourage using the essential oils of lavender and chamomile while doing infant massage.  I have found any of the commercial baby lotions or oils with lavender and chamomile work equally well and save you a little pocket change, which may come in handy since having a GERD baby can run your bills up quickly.  Recently, I discovered the Vick's Baby Rub with lavender and chamomile.  This product is designed for babies 3 months and up.  I wish it had been marketed when my girls were in the crucial period of their first 12 months of life, as I believe it may have helped not only with their massage, but also with the chronic congestion they encountered as the result of their reflux.

Mrs. Rabbit's Night-Night Tea

If your toddlers are like mine and struggle with "shutting down" for the night and going to sleep, or if they continue to have tummy troubles that keep them awake, here is an (almost) sure-fire way to calm and soothe them.


1/3 cup chamomile tea*
2/3 cup milk
1/2 tsp. Colic-Ease Gripe Water


Tips on making the tea:
1-Use straight chamomile tea with no other added herbs.  (As for brands, Celestial Seasonings Chamomile is my favorite because it is simple, affordable, and easy to find.)
2-Make sure the tea leaves steep for at least 10 minutes
3-Serve it lukewarm during a calming night-time routine (reading books, listening to music, etc.)
4-You may substitute juice for children who don't like milk
5-If a new food has unsettled the child's stomach, you may increase the dosage of Colic-Ease gripe water according to the child's age and the label directions
*6-I vary the amount of tea according to age: 18 months use 1/4 cup; ages 2-4 use 1/3 cup; ages 5 and up use 1/2 cup, etc.


My girls love their night-night tea...and the story of naughty little Peter Rabbit whose mother loves him so much she sends him to bed with chamomile tea for his tummy ache!!

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