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

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

Silent GERD is not Silent

Those of us who have children who suffer from "silent GERD" know the truth: there's nothing silent about it.  When your child continues crying for 8-10 hours in a row without reprieve despite all your best efforts, you know.  It's not silent!

You also know something is wrong.  No child should cry for that duration.  Even if your doctor tells you it's just a phase or your child's personality or your own lack of experience with infants, trust your instincts.  You have those instincts for a reason.

Diagnosing GERD and prescribing treatment through your pediatrician may take weeks or even months.  Part of this is simply due to the fact that the symptoms of GERD are so widely patterned and seemingly unrelated.  Sometimes the persistent crying is misdiagnosed as colic, which means it may be months of agony for your child until a correct diagnosis is reached.

A slow diagnosis may also be due to a pediatrician's conservative approach of "waiting and seeing" if the symptoms resolve in a few weeks due to the infant's immature digestive system. Hang in there, but don't just "wait and see."  Ask questions, schedule appointments, and if need be, find a new doctor.  You are your child's greatest advocate.

On the other hand, some pediatricians take such a proactive approach that they automatically prescribe strong medications, or they refer you to specialists who will have your infant x-rayed, scoped, and operated on before your baby is even a month old.  My personal belief is that when dealing with a baby you should try to make sure the cure isn't worse than the disease.  As much as possible, exhaust all least-invasive therapies first before rushing into the hospital or operating room.

When my first daughter was born, I had never heard of GERD.  I had read all the books and magazines and taken an eight-hour hospital class on newborns and child care, and heard not a word of GERD.  From birth she suffered from an inability to suck or swallow correctly as well as weight loss, dehydration, incessant crying, persistent congestion, periodic choking (even to the loss of breath), yet it wasn't until she was almost two months old before she was diagnosed.  At that point, the doctor informed me that I should have preferred a diagnosis of colic, for GERD was "ten times worse."

So here is a list of the many symptoms of GERD.  This list includes symptoms and behaviors seen in both infants and toddlers, but it is still not an exhaustive list.  If your child exhibits even two or three of these, it might be a good idea to consider GERD as a possibility and discuss it with your pediatrician or primary health care provider.  

As a GERD mama, I have personally seen every one of these symptoms (with the exception of gross motor delay) exhibited in either one or both of my daughters even though they were diagnosed with different forms of GERD.  The good news is we made it through--by the grace of God we are making it through--and so can you.

Physical Symptoms and Behaviors:

• Frequent choking, gagging, loss of breath
• Frequent vomiting or spitting up
• Taking only an ounce or two of milk or formula at a time
• Arching of the back (like a back-bend) while the rest of the body goes rigid
• Inability to latch or suck bottle well; inability to swallow well (dysphagia)
• Failure to gain weight; loss of weight
• Dehydration
• Continual crying for hours on end
• Recurring and sustained congestion
• Drainage from nose, ears, or eyes
• Acidic smell on breath even if vomit is not seen
• Frequent clearing of the throat
• Persistent croupy cough (barking sound) with or without stridor (wheezing)
• Hoarseness in voice when crying or babbling
• Shoving fingers in back of throat; making himself/herself gag
• Blood and/or mucus in stool
• Crying/distress when lying on back (diaper changes or naps)
• Excessive drooling
• Burn-like rash around mouth
• Chronic post-nasal drip
• Increased rate of ear, nose, and throat infections
• Lowered immune response
• Staining of teeth or erosion of enamel

Night-Time Symptoms:

• Wheezing
• Sleep apnea (periodic moments without breathing)
• Waking up coughing or gagging
• Night terrors/crying in sleep
• Refusing to sleep; fighting sleep
• Poor sleep patterns at night and during naptimes (not being able to sleep for a few hours at a time)
• Waking every hour or 90 minutes to be fed at night
• Increased congestion at night; noisy breathing
• Keeping self upright at night

Developmental Symptoms:

• Speech Delay
• Gross motor developmental delay
• Difficulty eating or swallowing solids
• Long-term and excessive struggles at mealtimes
• Emotional meltdowns not associated with intentional defiance
• Routine fatigue and inability to sleep through the night lasting up to 4 years of age

Colic-Ease Gripe Water: a GERD Mama Best Pick

Being new to the public world of mom-blogging, let me say I am a mom of action, who firmly believes the least invasive method of treatment is best.  Because my girls' symptoms were so severe, I tried almost everything to help them--including prescription medication--and learned that sometimes it's the simple things that make the most difference.  Therefore, I am devoting this blog post to one of my favorite products for soothing pediatric acid reflux: Colic-Ease Gripe Water.


Let me confess that I did not originally start the girls on Colic-Ease, but I wish I had.  When my first daughter was born, she could not suck or swallow properly and began to dehydrate and lose weight within days.  By the end of her second week, she had dropped from almost the 90th percentile in weight to the 50th percentile.  Because GERD was new to me and I was so busy keeping her alive both day and night, I didn't have time then to research all my options for treatment.  I purchased our doctor's prescription for Prevacid, and medically speaking, it saved her life.  The same thing happened with my second daughter, who was born only 15 months after my first.  It was only after both girls had been on Prevacid long-term that I began to see the negative side effects that were cause for concern.  (But more on that in another post.)


For now, let me share with you why I love Colic-Ease Gripe Water.


My children started taking Colic-Ease Gripe Water since they were 24 months and 9 months old, respectively.  That was when I first learned about it myself.  I began giving it to them in conjunction with a strictly controlled diet, and the difference has been like night and day in reducing and eliminating their GERD symptoms.  Even now that they are 2 and 3 years old, I keep a bottle on hand for those occasions when they eat a new food that might upset their stomachs, and it does the trick to settle their systems. 


But what is gripe water, you may ask?  "Gripe waters" are homeopathic remedies composed of natural ingredients that are typically used to treat colic.  Some recipes have been used for hundreds of years in Eastern, middle-Eastern, and European cultures.  They are over-the-counter, so you don't need a prescription, but they are often sold exclusively in natural health stores rather than regular pharmacies or grocery stores.  


What separates Colic-Ease Gripe Water from other gripe waters is what it does not contain: alcohol, sodium bicarbonate, charcoal, parabens, sucrose or sorbitol, or artificial sweeteners, flavors, or colors.  Most gripe waters I researched and saw in the stores contained these ingredients, the most common being sodium bicarbonate and charcoal, neither of which I wanted to pour into my girls' systems.


In addition, Colic-Ease Gripe Water contains a mixture of what I would consider "normal" essential oils--in other words, herbal oils I recognize or oils that would pass from a nursing mother into her breastmilk while eating an average diet--dill, cinnamon, caraway, clove, and cardamum.   Together, these oils work to combat gas, indigestion, vomiting, and diarrhea.  They also help to kill harmful microorganisms, viruses, bacteria and fungi.


You can administer Colic-Ease directly through an infant medicine dropper or you can mix a little with breastmilk or  formula (or juice for older babies/toddlers).  It is safe to use for newborns as well as older children.


Because it is not sold widely in health stores, you may have difficulty locating it near you.  You may always go to the official Colic-Ease website for more information as well as to find a store near you or to order online. http://www.colicease.com/

Welcome

I am the mother of two children with acid reflux disease, also known as GERD.  My first child exhibited what is medically termed "silent GERD" because she never spit up.  Instead she either swallowed her reflux or aspirated it, at which point she would choke violently.  My second daughter exhibited "traditional GERD," in which she spit up routinely and profusely and struggled to keep fluids down.  Whether silent or traditional, both types of GERD require special care and observation.  

Caring for a GERD infant or toddler can be physically exhausting and emotionally draining.  Although the incidence and diagnosis of pediatric GERD are on the rise, GERD babies are still in the minority and much research is still needed.  Finding a support system can be difficult; finding information and practical help can feel like searching for a needle in a haystack.

Having "been there" twice as a parent, I know all too well the difficulties associated with caring for a GERD baby.  Periodically moms will refer others to me for comfort and advice when they find themselves faced with the same challenges.  

And so I am offering this blog--it's a work in progress--but I am trusting it may provide support, information, ideas and most of all, hope.