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
Tuesday, February 23, 2010
Monday, February 22, 2010
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."
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
PAGER article regarding GERD in Special Needs Children
GERD Issues Requiring Physical Therapy
GERD as an Area of Specialization in Physical Therapy
Jan Gambino (MD and GERD Author/Mother) discussing the link between Acid Reflux and Autism Spectrum Disorders
Friday, February 12, 2010
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
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
Friday, January 29, 2010
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:
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
Similac Email Address
My best wishes to you, if you choose to write. I will report back later on the responses I receive, to keep you informed.
Thursday, January 28, 2010
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/
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/
Wednesday, January 27, 2010
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
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
Tuesday, January 26, 2010
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...
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...
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