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
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