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.