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

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

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/

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...

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!!!

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

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!!

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/