I've let this blog languish for a couple of months now. I've missed it but it often seemed like a luxury to take the time to write for it. And it's sometimes overwhelming to think of a topic - not because there's nothing to write about but because in the field of health, there's too many topics to choose from!
However, the difference between aspiring writers and writers is writing. Since I'd like to move from being the former to being the latter, I have to write. This blog is as good a place as any to do that. Since my time, thoughts, and writing have lately been focused to a large extent on my older son, Harry, I'm going to continue to use him as a focus for this blog, at least for now.
If you're new to the blog, what makes Harry's story interesting is his background (see the previous post for that - "A Small Quiet Voice and How it Helped My Small Quiet Boy"), his recent food allergy/intolerance diagnosis along with his recent determination to take charge of his diet and health, and the fact that he'll soon be leaving for his first year of college.
As we all know, it's difficult to eat healthfully in our society: we're surrounded by unhealthy foods and a plethora of conflicting, confusing, and sometimes completely inaccurate nutritional advice. It's even harder for those who have specific dietary needs. And imagine being a teen who's sensitive to wheat, dairy, eggs, and sugar and is starting a summer full of graduation parties and work in a summer camp kitchen! I think I'll have material to write about.
I may also delve more into Harry's past as I hope to write a book about him and this is as good place for me to work on that. Those of us who are fortunate enough to be parents always learn from our kids, but because of the challenges Harry faced, especially as a small child, I've learned more and different lessons from him than I imagined - especially how far sheer determination can take you and how to be open-minded and kind in all situations (well, almost all situations - Harry's human after all and has a younger brother).
So, a request for help. If you read the blog and are inspired, moved, or have a critique of it, please let me know. Comments are lovely - it's encouraging for me to know that readers are out there. Comments can sometimes they can take a blog in a whole, new direction that's of more interest to the readers. If you'd like to comment, you'll need a google account. Of course, if you know me, and wish to keep emailing your comments, it's fine, too. You can also subscribe to the blog by clicking on the "subcribe to our posts" banner. That way, you'll be notified whenever I post.
Thanks and I hope you'll share and enjoy this journey with me.
Monday, June 28, 2010
Tuesday, June 22, 2010
A Small Quiet Voice and How it Helped My Small Quiet Boy
My son Harry is graduating high school today. In just two months he's off to the college of his choice. He wasn't supposed to make it.
Harry had the kind of early childhood that led to years of sleepless nights for my husband and me. Side by side we'd lie, rigidly awake, together, yet alone. As I'd stare through the blackness toward the ceiling, I'd have tears running down the sides of my face and puddling in my ears. They came from a mixture of fear, grief, anger, and frustration. My husband Hank was kept awake wondering if his son's biggest achievement in life might be to secure employment as a supermarket bagger.
We struggled in shock through the weeks shortly after Harry's birth when he suddenly stopped gaining weight and started losing weight rapidly. I was told to keep breastfeeding.
A friend's triplet son, who underwent numerous heart operations as an infant, had more strength as a one-year old than Harry had. I desperately clung to denial, refusing to explore what this might mean.
When Harry was a toddler, as soon as one infection cleared up another immediately attacked his body. I was repeatedly told that prophylactic antibiotics were perfectly safe. I followed this advice even though it was counter to everything I knew about antibiotics.
Finally, Harry became a little boy, whose body was so ravaged that there were times he'd just sit on the floor and drool, a blank look on his face. A speech therapist told me he wasn't hearing well enough to learn to speak. An ear, nose, and throat doctor asked me where the hell I'd been and why hadn't I brought Harry to him sooner. Where was I? I was listening to other people - "experts" - even when my every cell was screaming at me that my son needed different approaches.
I had listened to my gut when Harry was an infant. After trying everything I could to nurse him successfully, including having a lactation expert come to my house, handle my breasts, and watch me nurse, I disregarded everyone's advice (except Hank's and my own) and tried bottle feeding Harry. Harry's pediatrician, who was opposed to this, told us that I'd have to be out of the room or he wouldn't take the bottle - that if he heard me or smelled me, he'd only want to nurse. I remember the first night Harry drank from a bottle - Hank was sitting in a chair in our bedroom holding Harry in his arms; I gave the bottle to Hank and before I'd taken two steps Harry was hungrily sucking on the rubber nipple. He drained the bottle in moments. Out of the room? I was still by his head. He started drinking formula like the starving baby he was. And, as Hank likes to say, Harry plumped up like a ball-park frank.
I know that Harry was probably allergic to something to the formula. We found out later that he was allergic to dairy. I know that by no stretch of the imagination is infant formula as healthy as breast milk. But my child was starving on breast milk (or the lack thereof). Did the formula cause other problems for my baby? Quite likely, yes. But it kept him alive.
Fast forward two years: I was beside myself that my toddler couldn't even say "no." I wanted to experience the terrible twos, every other parent I knew was. Every other mother I knew was spending their mornings at the park or playgroup happily playing the game of mommy one-upmanship and enjoying adding to the banter what their child was doing that was new and wonderful. Harry was sweet. But Harry wasn't talking and his motor skills were delayed. Any stories I might have to tell were old news to the other moms, their children had reached these milestones months before. I had no bragging rights. I had only worries.
Harry's pediatrician told me he was fine but I knew better and I finally heard the small voice in my head that said, "He's yours to protect. Do what you believe is right." So I called a speech therapist. It took her five minutes to tell me the tympanograms were flat, meaning Harry wasn't hearing enough to learn language. It took the pediatrician, upon getting this news mere seconds to tell me to take Harry to an ENT pronto. Pronto? Pronto? For months, I'd asked her, "Is it time for me to take him to a specialist?" and she'd assured me it wasn't. I'd listened, but I also picked out the ENT I wanted Harry to see when it was time. Now the pediatrician said there wasn't time to wait for him - his practice was too busy. Fortunately, I again listened to my gut, and called this man's office, and he had an opening. Harry got ear tubes to drain the fluid in his ears, and an adenoidectomy.
By this time I was on a roll. My faith in outside advice was shattered. I started to trust myself more and to stand my ground. A week after my one-year old daughter was home following hospitalization for severe dehydration, I felt she and Harry were both ill. I brought them to the pediatrician. Admittedly, my reasoning seemed sketchy: their moods were off. The doctor gave them cursory exams and told me they were fine, I just needed a day off, that I was upset from the hospitalization. "No," I insisted, quite uncharacteristically. "Give them strep tests." "No," the doctor said, "They're fine." I wouldn't leave the office, she finally relented and agreed to give one child the test. Which was positive. She still wanted to send us on our way. "Test the other," I demanded. That test was positive, too.
I can go on and on and on. But this was the start of my listening to that small voice deep inside myself. After it was suggested that we take Harry to a child psychologist to help pin down what his learning problems were, that voice kept me taking him to psychologist after psychologist until we found one who didn't say, "He'll never make it past third grade," or "He'll have significant problems throughout his life," but instead said, "He's 95% the same as every other child and start focusing on that 95% rather than the 5% of him that's different." It lead me to write a long, teary, and heartfelt letter to a cranio-sacral osteopath who'd been recommended by a friend. Bonnie's practice was full, but after reading my letter she called and told me she'd make room for Harry in her practice. We drove the hour and a half trip to Woodstock three times a week to see her. I believe her care was instrumental in healing Harry.
We hunted down allergy treatments and any therapies we thought would help. Harry's occupational therapist told us when he was five to not even bother trying to teach him penmanship, that he'd never learn. Instead, we started Harry on vision therapy. The director of special education in our school district was appalled: she said that not only were we wasting our money, but we were wasting Harry's precious time. Shortly after starting vision therapy, Harry learned to write. He delights in remembering how when he started middle school, after being homeschooled for many years, his teachers commented on how nice his handwriting was.
I still struggle to hear the voice. I still question if I should trust my instincts. I still read whatever I can when a decision, medical or otherwise, has to be made. But I know my best decisions have been made from my gut. I know that some of those unpopular and unusual decisions are the ones that allowed Harry to get healthy, and get the help he needed to be a boy who thrived and who learned and who will walk across the stage tonight, earning a high school diploma with honors. I know he'll live a happy and productive life, achieving what so many were so convinced would be impossible for him to do.
I'm awed by Harry's drive, the hard work he's put in over the years, and the wonderful man he's on the verge of being. I've learned so much more from raising him than he could have possibly have learned from my mothering him.
Do I write this to congratulate myself on a job well done? Or to highlight how I know so much more than others? Not at all. I pass this story on because although I don't feel I know much of anything, one of the few things I do strongly believe is that we all have a voice deep within us that can point us in the right direction unlike anything else can. This voice can be so soft that at times it may be almost impossible to hear. But with trust and practice, and as we honor it and listen to it more, that voice gets louder and more distinct. We all have our own lives to live and ultimately, when the stakes are on the line, the best answers lie within.
Harry had the kind of early childhood that led to years of sleepless nights for my husband and me. Side by side we'd lie, rigidly awake, together, yet alone. As I'd stare through the blackness toward the ceiling, I'd have tears running down the sides of my face and puddling in my ears. They came from a mixture of fear, grief, anger, and frustration. My husband Hank was kept awake wondering if his son's biggest achievement in life might be to secure employment as a supermarket bagger.
We struggled in shock through the weeks shortly after Harry's birth when he suddenly stopped gaining weight and started losing weight rapidly. I was told to keep breastfeeding.
A friend's triplet son, who underwent numerous heart operations as an infant, had more strength as a one-year old than Harry had. I desperately clung to denial, refusing to explore what this might mean.
When Harry was a toddler, as soon as one infection cleared up another immediately attacked his body. I was repeatedly told that prophylactic antibiotics were perfectly safe. I followed this advice even though it was counter to everything I knew about antibiotics.
Finally, Harry became a little boy, whose body was so ravaged that there were times he'd just sit on the floor and drool, a blank look on his face. A speech therapist told me he wasn't hearing well enough to learn to speak. An ear, nose, and throat doctor asked me where the hell I'd been and why hadn't I brought Harry to him sooner. Where was I? I was listening to other people - "experts" - even when my every cell was screaming at me that my son needed different approaches.
I had listened to my gut when Harry was an infant. After trying everything I could to nurse him successfully, including having a lactation expert come to my house, handle my breasts, and watch me nurse, I disregarded everyone's advice (except Hank's and my own) and tried bottle feeding Harry. Harry's pediatrician, who was opposed to this, told us that I'd have to be out of the room or he wouldn't take the bottle - that if he heard me or smelled me, he'd only want to nurse. I remember the first night Harry drank from a bottle - Hank was sitting in a chair in our bedroom holding Harry in his arms; I gave the bottle to Hank and before I'd taken two steps Harry was hungrily sucking on the rubber nipple. He drained the bottle in moments. Out of the room? I was still by his head. He started drinking formula like the starving baby he was. And, as Hank likes to say, Harry plumped up like a ball-park frank.
I know that Harry was probably allergic to something to the formula. We found out later that he was allergic to dairy. I know that by no stretch of the imagination is infant formula as healthy as breast milk. But my child was starving on breast milk (or the lack thereof). Did the formula cause other problems for my baby? Quite likely, yes. But it kept him alive.
Fast forward two years: I was beside myself that my toddler couldn't even say "no." I wanted to experience the terrible twos, every other parent I knew was. Every other mother I knew was spending their mornings at the park or playgroup happily playing the game of mommy one-upmanship and enjoying adding to the banter what their child was doing that was new and wonderful. Harry was sweet. But Harry wasn't talking and his motor skills were delayed. Any stories I might have to tell were old news to the other moms, their children had reached these milestones months before. I had no bragging rights. I had only worries.
Harry's pediatrician told me he was fine but I knew better and I finally heard the small voice in my head that said, "He's yours to protect. Do what you believe is right." So I called a speech therapist. It took her five minutes to tell me the tympanograms were flat, meaning Harry wasn't hearing enough to learn language. It took the pediatrician, upon getting this news mere seconds to tell me to take Harry to an ENT pronto. Pronto? Pronto? For months, I'd asked her, "Is it time for me to take him to a specialist?" and she'd assured me it wasn't. I'd listened, but I also picked out the ENT I wanted Harry to see when it was time. Now the pediatrician said there wasn't time to wait for him - his practice was too busy. Fortunately, I again listened to my gut, and called this man's office, and he had an opening. Harry got ear tubes to drain the fluid in his ears, and an adenoidectomy.
By this time I was on a roll. My faith in outside advice was shattered. I started to trust myself more and to stand my ground. A week after my one-year old daughter was home following hospitalization for severe dehydration, I felt she and Harry were both ill. I brought them to the pediatrician. Admittedly, my reasoning seemed sketchy: their moods were off. The doctor gave them cursory exams and told me they were fine, I just needed a day off, that I was upset from the hospitalization. "No," I insisted, quite uncharacteristically. "Give them strep tests." "No," the doctor said, "They're fine." I wouldn't leave the office, she finally relented and agreed to give one child the test. Which was positive. She still wanted to send us on our way. "Test the other," I demanded. That test was positive, too.
I can go on and on and on. But this was the start of my listening to that small voice deep inside myself. After it was suggested that we take Harry to a child psychologist to help pin down what his learning problems were, that voice kept me taking him to psychologist after psychologist until we found one who didn't say, "He'll never make it past third grade," or "He'll have significant problems throughout his life," but instead said, "He's 95% the same as every other child and start focusing on that 95% rather than the 5% of him that's different." It lead me to write a long, teary, and heartfelt letter to a cranio-sacral osteopath who'd been recommended by a friend. Bonnie's practice was full, but after reading my letter she called and told me she'd make room for Harry in her practice. We drove the hour and a half trip to Woodstock three times a week to see her. I believe her care was instrumental in healing Harry.
We hunted down allergy treatments and any therapies we thought would help. Harry's occupational therapist told us when he was five to not even bother trying to teach him penmanship, that he'd never learn. Instead, we started Harry on vision therapy. The director of special education in our school district was appalled: she said that not only were we wasting our money, but we were wasting Harry's precious time. Shortly after starting vision therapy, Harry learned to write. He delights in remembering how when he started middle school, after being homeschooled for many years, his teachers commented on how nice his handwriting was.
I still struggle to hear the voice. I still question if I should trust my instincts. I still read whatever I can when a decision, medical or otherwise, has to be made. But I know my best decisions have been made from my gut. I know that some of those unpopular and unusual decisions are the ones that allowed Harry to get healthy, and get the help he needed to be a boy who thrived and who learned and who will walk across the stage tonight, earning a high school diploma with honors. I know he'll live a happy and productive life, achieving what so many were so convinced would be impossible for him to do.
I'm awed by Harry's drive, the hard work he's put in over the years, and the wonderful man he's on the verge of being. I've learned so much more from raising him than he could have possibly have learned from my mothering him.
Do I write this to congratulate myself on a job well done? Or to highlight how I know so much more than others? Not at all. I pass this story on because although I don't feel I know much of anything, one of the few things I do strongly believe is that we all have a voice deep within us that can point us in the right direction unlike anything else can. This voice can be so soft that at times it may be almost impossible to hear. But with trust and practice, and as we honor it and listen to it more, that voice gets louder and more distinct. We all have our own lives to live and ultimately, when the stakes are on the line, the best answers lie within.
Wednesday, June 2, 2010
Harry is an Addict!
Last night, over dinner, Harry confessed. He's an addict. If I don't seem surprised it's because I'm not. Disappointed, of course, but not surprised. He's not alone and he's in good company. Many people who have food allergies are addicts. They're addicted to the foods they're allergic to. I'm not exactly sure of why this it but if you're wondering if you have any food allergies, the best place to start is by looking at your diet: what do you crave and eat every day?
To recap: back in April, I put my 17 year old son Harry on an elimination diet to test for food allergies and sensitivities. I suspected some "childhood alllergies" to wheat, eggs, and dairy were again causing him problems. I also suspected that he had Candida, a systemic overgrowth of yeast. He did well on the diet, feeling calmer and more energetic. When challenged with the offending foods (meaning, eating them after a 2-week break), he was clearly sensitive to sugar (he was able to report a clear physical reaction to it). I also noticed a reaction to oats, which I hadn't expected. Other results were murky, which is not uncommon in the realm of food sensitivities - some reactions are quick and severe (i.e. anaphylaxis) but others can take days to develop and are more subtle. These were the reactions I thought Harry was having to foods (brain fog, a general sense of dis-ease).
A friend mentioned having great success with a functional medicine chiropractor. Functional medicine focuses on correcting underlying causes of disease, rather than focusing and treating the symptoms. It is integrative (looks at the whole body and whole person) and individual (recognizes that conditions may have different origins in different people). Functional medicine looks to affect healing without the use of pharmaceuticals whenever possible. For example, whereas most conventional medical doctors will prescribe a statin drug for high cholesterol, a functional medicine doctor would first have the patient try diet and exercise to control it.
Dr. Wayne Hogan (www.waynehogandc.com), the chiropractor, also uses energy medicine. Functional medicine is based on science. Some energy medicine has much scientific testing behind it as well, and some does not. Some energy medicines does have thousands of years of practice and experience (think acupuncture).
So, into this triple-whammy world of complementary medicine (chiropractic, functional medicine, energy medicine) went Harry. Dr. Hogan confirmed that Harry is allergic to wheat, dairy, and eggs and that he's having problems with his pancreas and that's why he's having problems with sugar. He didn't think Harry has a Candida problem, but thinks he's having a problem with molds. He thought gluten and the food that typically exacerbate a Candida overgrowth were okay. But.....
On this newer, less restrictive diet (yeast, spelt), Harry's back to feeling poorly. When I mentioned this to Dr. Hogan, he won me over because he said that it doesn't matter what the tests show, what matters is how the person feels. Of course.
With all the recent fuss over food allergies saying that they are over diagnosed - let me state my opinion clearly. I don't care what you call it (food allergy, food sensitivity, a food that makes me feel lousy), and I don't care if you test positive or negative on an IgE, IgG, or any other test or not. If a food you're eating makes you feel poorly, call it what you may, but keep ingesting something that makes you ill! There's really no food you must eat to be healthy. If a food is making you feel sick, there's no benefit to be derived from eating it. There are alternative sources of nutrients for all foods out there.
That said, our next step is to get Harry tested (conventionally) for Celiac disease and gluten sensitivity. The reason for this is two-fold. First of all, if you go off gluten, a blood test for gliadin will come up negative and this is usually the first (though possibly inconclusive) step in testing. Many doctors will stop testing right there. A test of the intestinal villi, which is damaged in people with Celiac disease may also come up negative if you've already stopped eating foods that have gluten. Also, should he have Celia disease, Harry would need documentation of this - gluten is in many products, more than just food (shampoo, envelope glue, medicines) and no amount of gluten is safe for people with Celiac disease, so it's good to have this confirmed in case of emergency so that you're not given any gluten-containing meds in an ER, for example.
So, back to last night. Harry confirmed that after going off the elimination diet, he realized he felt much better on it. He also realized that once he started eating the foods that were eliminated, although they made him feel sick, he still craved them. Therefore, my super-straight-laced son realized he's an addict. But, he's ready to go back to rehab. Hard as this diet is (and believe me, Harry's personal chef), it's hard - he's found he likes feeling good.
BTW, an hour later, Shay, my younger son walked into the kitchen and told me he's an addict. What's the Collins family coming to? Shay realized he's addicted to the computer. Oh. Phew. This is something his father and I have known since he was three. My daughter declared us all enablers. Guilty as charged.
To recap: back in April, I put my 17 year old son Harry on an elimination diet to test for food allergies and sensitivities. I suspected some "childhood alllergies" to wheat, eggs, and dairy were again causing him problems. I also suspected that he had Candida, a systemic overgrowth of yeast. He did well on the diet, feeling calmer and more energetic. When challenged with the offending foods (meaning, eating them after a 2-week break), he was clearly sensitive to sugar (he was able to report a clear physical reaction to it). I also noticed a reaction to oats, which I hadn't expected. Other results were murky, which is not uncommon in the realm of food sensitivities - some reactions are quick and severe (i.e. anaphylaxis) but others can take days to develop and are more subtle. These were the reactions I thought Harry was having to foods (brain fog, a general sense of dis-ease).
A friend mentioned having great success with a functional medicine chiropractor. Functional medicine focuses on correcting underlying causes of disease, rather than focusing and treating the symptoms. It is integrative (looks at the whole body and whole person) and individual (recognizes that conditions may have different origins in different people). Functional medicine looks to affect healing without the use of pharmaceuticals whenever possible. For example, whereas most conventional medical doctors will prescribe a statin drug for high cholesterol, a functional medicine doctor would first have the patient try diet and exercise to control it.
Dr. Wayne Hogan (www.waynehogandc.com), the chiropractor, also uses energy medicine. Functional medicine is based on science. Some energy medicine has much scientific testing behind it as well, and some does not. Some energy medicines does have thousands of years of practice and experience (think acupuncture).
So, into this triple-whammy world of complementary medicine (chiropractic, functional medicine, energy medicine) went Harry. Dr. Hogan confirmed that Harry is allergic to wheat, dairy, and eggs and that he's having problems with his pancreas and that's why he's having problems with sugar. He didn't think Harry has a Candida problem, but thinks he's having a problem with molds. He thought gluten and the food that typically exacerbate a Candida overgrowth were okay. But.....
On this newer, less restrictive diet (yeast, spelt), Harry's back to feeling poorly. When I mentioned this to Dr. Hogan, he won me over because he said that it doesn't matter what the tests show, what matters is how the person feels. Of course.
With all the recent fuss over food allergies saying that they are over diagnosed - let me state my opinion clearly. I don't care what you call it (food allergy, food sensitivity, a food that makes me feel lousy), and I don't care if you test positive or negative on an IgE, IgG, or any other test or not. If a food you're eating makes you feel poorly, call it what you may, but keep ingesting something that makes you ill! There's really no food you must eat to be healthy. If a food is making you feel sick, there's no benefit to be derived from eating it. There are alternative sources of nutrients for all foods out there.
That said, our next step is to get Harry tested (conventionally) for Celiac disease and gluten sensitivity. The reason for this is two-fold. First of all, if you go off gluten, a blood test for gliadin will come up negative and this is usually the first (though possibly inconclusive) step in testing. Many doctors will stop testing right there. A test of the intestinal villi, which is damaged in people with Celiac disease may also come up negative if you've already stopped eating foods that have gluten. Also, should he have Celia disease, Harry would need documentation of this - gluten is in many products, more than just food (shampoo, envelope glue, medicines) and no amount of gluten is safe for people with Celiac disease, so it's good to have this confirmed in case of emergency so that you're not given any gluten-containing meds in an ER, for example.
So, back to last night. Harry confirmed that after going off the elimination diet, he realized he felt much better on it. He also realized that once he started eating the foods that were eliminated, although they made him feel sick, he still craved them. Therefore, my super-straight-laced son realized he's an addict. But, he's ready to go back to rehab. Hard as this diet is (and believe me, Harry's personal chef), it's hard - he's found he likes feeling good.
BTW, an hour later, Shay, my younger son walked into the kitchen and told me he's an addict. What's the Collins family coming to? Shay realized he's addicted to the computer. Oh. Phew. This is something his father and I have known since he was three. My daughter declared us all enablers. Guilty as charged.
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