Doctors are not infallible, and it's important that we know it even if they don't. The intuition of a father or mother is often worth as much as the education and experience a doctor has, and we should not be afraid to assert ourselves on behalf of our children.
About a year ago my oldest (previously non-allergic) daughter was on Augmentin for pneumonia and developed hives. The doctor at the emergency room told me to give her Benadryl and finish off the last 4 days of the prescription. I was a little shocked at this advice, but I thought for a moment and then said, "I guess as long as I have her sister's Epipen right next to me, I could give her another dose of this." The doctor left the room for a moment to consult with another pediatrician, and returned with a prescription for a different antibiotic.
This doctor's clinical knowledge initially interfered with her ability to make a reasonable decision in this situation. She had learned in medical school and in practice that children sometimes develop hives when they have a virus, influenza, or other types of illnesses. Most likely, my daughter's hives were caused by influenza, which is also what made her susceptible to bacterial pneumonia and led to her treatment with antibiotics in the first place. However, on the outside chance that the hives were from the Augmentin, any doctor worth his salt would change the prescription. Her attitude reminded me of the saying, "Shoot first, ask questions later." My preference, which was honored, is to avoid anything that might be causing the hives and later have an oral challenge.
Since we haven't done the challenge yet, I don't know if my daughter is really allergic to amoxicillan or not. But I am grateful that when I persisted, the doctor listened to my concern and gave my daughter a new prescription. Changing antibiotics certainly didn't hurt her, and continuing Augmentin could have been disastrous. When dealing with doctors, remember that they are people and they make mistakes too--if you feel uncomfortable, push until you get the answers you need. No one is completely infallible!
Thursday, May 27, 2010
Saturday, May 22, 2010
Peanuts first...eggs next...then what?
Reading another allergy mom's post about her child's recent allergic reaction has sent me on a trip down memory lane. Sophie has been blessed to have had no serious reactions for the past 2 years. In fact, her last one was in the allergist's office when we did her peanut challenge in 2008.
Sophie was 6. Her recent tests showed a decline in the peanut and egg antibodies, and our allergist asked her about doing a couple of challenges. Initially, she declined. You may think this is funny, that she was calling the shots, but it is her body and she is the one who suffers if she can't eat what other people eat, so I am inclined to weigh her opinion heavily on these matters. He talked a little more (I had already said it was up to Sophie) and convinced her to try a peanut challenge. She stated that she would only be willing to do the egg challenge if she passed the peanut challenge.
We used peanut butter for the challenge. With the first few doses, she had no problems. No itchiness, no redness, no gasping. After we'd been there about an hour, she got a bigger dose--2 teaspoons if I remember correctly. She was okay for about 10 minutes after she ate it, and then she exploded. Well, not literally, but almost; she projectile vomited a couple of times in a row and then began a rapid-fire sneezing routine. I remember so clearly holding a trash can in one hand and a handful of tissues in the other, doing my best to help Sophie, while the doctor was scrambling around and said to me, "Well, this is 2 body systems, respiratory and digestive. That's anaphylaxis." We both looked at the Epipen sitting on the counter.
Sophie stopped vomiting for a minute, long enough to take some Benadryl. The Epipen stayed put. When she vomited up the Benadryl, the doctor fingered the Epipen and commented aloud that Sophie hadn't sneezed for a couple of minutes. Sophie's body began to calm down--maybe some of that Benadryl stayed in her long enough to do some good, or maybe she was the recipient of a miracle (well, I know that to be true either way), but she stopped vomiting and sneezing. Within an hour, she had taken both Zyrtec and prednisone without vomiting and we were able to go home.
That was 2 years ago, and yesterday Sophie told me that she has no intention of having an egg challenge, since she hasn't passed peanuts yet.
Sophie was 6. Her recent tests showed a decline in the peanut and egg antibodies, and our allergist asked her about doing a couple of challenges. Initially, she declined. You may think this is funny, that she was calling the shots, but it is her body and she is the one who suffers if she can't eat what other people eat, so I am inclined to weigh her opinion heavily on these matters. He talked a little more (I had already said it was up to Sophie) and convinced her to try a peanut challenge. She stated that she would only be willing to do the egg challenge if she passed the peanut challenge.
We used peanut butter for the challenge. With the first few doses, she had no problems. No itchiness, no redness, no gasping. After we'd been there about an hour, she got a bigger dose--2 teaspoons if I remember correctly. She was okay for about 10 minutes after she ate it, and then she exploded. Well, not literally, but almost; she projectile vomited a couple of times in a row and then began a rapid-fire sneezing routine. I remember so clearly holding a trash can in one hand and a handful of tissues in the other, doing my best to help Sophie, while the doctor was scrambling around and said to me, "Well, this is 2 body systems, respiratory and digestive. That's anaphylaxis." We both looked at the Epipen sitting on the counter.
Sophie stopped vomiting for a minute, long enough to take some Benadryl. The Epipen stayed put. When she vomited up the Benadryl, the doctor fingered the Epipen and commented aloud that Sophie hadn't sneezed for a couple of minutes. Sophie's body began to calm down--maybe some of that Benadryl stayed in her long enough to do some good, or maybe she was the recipient of a miracle (well, I know that to be true either way), but she stopped vomiting and sneezing. Within an hour, she had taken both Zyrtec and prednisone without vomiting and we were able to go home.
That was 2 years ago, and yesterday Sophie told me that she has no intention of having an egg challenge, since she hasn't passed peanuts yet.
Friday, May 21, 2010
Pregnancy and Allergies
An email from a reader got me thinking today about when I was pregnant after having one child with food allergies. I was worried about the new baby developing food allergies like Sophie's. But I was terrified that she would have allergies that Sophie didn't have--and make our list even longer! I talked with our allergist and he gave me some recommendations based on the current research. Nothing is guaranteed, but it worked out for me--Maggie doesn't have any allergies at all. What are your thoughts on pregnancy and food allergies? Did you have a specific plan to avoid allergies? Did it work?
Saturday, April 3, 2010
You've come a long way, Baby!
For me, a huge piece of managing food allergies has been about managing anxiety. If I had the food allergies, my anxiety level would have been much lower; I am me, and I can trust myself to not eat something if I don't know what's in it. This is simply not the case with kids; when Sophie was really small I wasn't sure if she understood her allergies well enough to protect her if I wasn't around for some reason. Now that she's older, well, I still wonder about that.
When Sophie was first diagnosed, my food allergy anxiety (shall we just call it FAA for short?) was all based on three possible enemies:
1. Sophie
2. Other People
3. Me.
My FAA that Sophie would accidentally feed herself something that would hurt her led me to do a few really drastic things. When she was crawling, I swept or vacuumed the floor at least 12 times every day. I remember at one point my husband called from work at about 10:00am. When he asked me how I was doing I started crying and said, "I've already swept the kitchen floor 6 times!" During those early years, we completely eliminated a number of foods from our home, such as peanut butter, crackers, and most breads. As she's grown older (she is now 8 years old) some of these foods have made their way back into our lives, with no detrimental effects. We've come a long way, Baby!
I found the Epi-Pen to be my greatest ally in resolving my FAA that Other People (grandparents, siblings, friends, aunts, uncles, etc.) would feed Sophie something harmful. Whenever I absolutely had to leave Sophie with someone other than my dear husband, I taught the babysitter how to use the Epi-Pen. After doing this a few times, I realized that people were terrified of it! Teaching someone to use the Epi-Pen practically ensured that they would take no risks, since they didn't want to have to use it! Pretty soon, I started showing it to anyone who was even around Sophie, because something about needles really brings home the severity of food allergies.
Alas, I was most anxious about myself. With all of the terms to learn and information to assimilate in a critically brief period of time, how could I be sure that I wouldn't miss some ingredient on a label? Indeed, I did miss ingredients a few times--only to catch my error seconds before Sophie ingested the offending food. In one instance, I didn't catch it in time, and poor Sophie paid the price in vomiting. But it's been a long time--maybe even years--since I have made such an error. And as I have been more accurate, my FAA has decreased. I no longer wake up in a cold sweat from the nightmare in which I have temporarily forgotten Sophie's allergy to eggs and witnessed her poor body swollen and sick. I have a new nightmare: Sophie is now reading her own labels. She still lets me double-check her work, but for how long? When the time comes, will I be prepared to hand over the responsibility of keeping her safe? Will I be able to trust my precious child with her own safety? Will I be able to say, Sophie, you've come a long way, Baby!"
When Sophie was first diagnosed, my food allergy anxiety (shall we just call it FAA for short?) was all based on three possible enemies:
1. Sophie
2. Other People
3. Me.
My FAA that Sophie would accidentally feed herself something that would hurt her led me to do a few really drastic things. When she was crawling, I swept or vacuumed the floor at least 12 times every day. I remember at one point my husband called from work at about 10:00am. When he asked me how I was doing I started crying and said, "I've already swept the kitchen floor 6 times!" During those early years, we completely eliminated a number of foods from our home, such as peanut butter, crackers, and most breads. As she's grown older (she is now 8 years old) some of these foods have made their way back into our lives, with no detrimental effects. We've come a long way, Baby!
I found the Epi-Pen to be my greatest ally in resolving my FAA that Other People (grandparents, siblings, friends, aunts, uncles, etc.) would feed Sophie something harmful. Whenever I absolutely had to leave Sophie with someone other than my dear husband, I taught the babysitter how to use the Epi-Pen. After doing this a few times, I realized that people were terrified of it! Teaching someone to use the Epi-Pen practically ensured that they would take no risks, since they didn't want to have to use it! Pretty soon, I started showing it to anyone who was even around Sophie, because something about needles really brings home the severity of food allergies.
Alas, I was most anxious about myself. With all of the terms to learn and information to assimilate in a critically brief period of time, how could I be sure that I wouldn't miss some ingredient on a label? Indeed, I did miss ingredients a few times--only to catch my error seconds before Sophie ingested the offending food. In one instance, I didn't catch it in time, and poor Sophie paid the price in vomiting. But it's been a long time--maybe even years--since I have made such an error. And as I have been more accurate, my FAA has decreased. I no longer wake up in a cold sweat from the nightmare in which I have temporarily forgotten Sophie's allergy to eggs and witnessed her poor body swollen and sick. I have a new nightmare: Sophie is now reading her own labels. She still lets me double-check her work, but for how long? When the time comes, will I be prepared to hand over the responsibility of keeping her safe? Will I be able to trust my precious child with her own safety? Will I be able to say, Sophie, you've come a long way, Baby!"
Saturday, March 20, 2010
I'm no doctor, but...
I'm not a doctor, but let's just say that I've learned a thing or two about allergies over the years. The things I have learned lead me to believe that allergies are essentially a massive immune system malfunction. Allergic response occurs when the body determines that a usually benign substance (like milk) is hazardous. The immune system builds up antibodies to the benign substance, and on the next exposure, the body responds. Whether the response is minor (a few hives) or dramatic (anaphylaxis) isn't relevant for the purposes of this discussion, the point is that the immune system (which is supposed to fight infections) is waging the wrong war.
So if allergies are essentially an auto-immune system disorder, how do they relate to other auto-immune disorders? Are people with allergies more likely to develop things like rheumatoid arthritis, Graves' disease, PANDAS, etc.? If so, how much more likely? Is it likely enough that people with allergies ought to be educated about other auto-immune disorders so that symptoms will be noticed and early diagnosis is more probable?
It's commonly believed that asthma, eczema and allergies are genetically linked, meaning that if the parents each have at least one of those conditions, then the children are likely to also have at least one of those conditions. Furthermore, children won't necessarily have the same condition as the parents. Does this mean that anyone with asthma or eczema is also more like to develop other auto-immune disorders?
And think about this: aren't most people allergic to something these days? So if most people have an allergy of some kind, does that mean that most of us are walking around waiting for the next auto-immune disaster to strike?
If the majority of people have an increased susceptibility to auto-immune disorders, then that's the new normal. Or maybe this is how we've always been. Maybe humans were never meant to eat such a wide variety of foods, travel to such a wide variety of places, and be exposed to so many potential allergens over a lifetime. Maybe we haven't yet adapted to our new mobility. But maybe we still can.
So if allergies are essentially an auto-immune system disorder, how do they relate to other auto-immune disorders? Are people with allergies more likely to develop things like rheumatoid arthritis, Graves' disease, PANDAS, etc.? If so, how much more likely? Is it likely enough that people with allergies ought to be educated about other auto-immune disorders so that symptoms will be noticed and early diagnosis is more probable?
It's commonly believed that asthma, eczema and allergies are genetically linked, meaning that if the parents each have at least one of those conditions, then the children are likely to also have at least one of those conditions. Furthermore, children won't necessarily have the same condition as the parents. Does this mean that anyone with asthma or eczema is also more like to develop other auto-immune disorders?
And think about this: aren't most people allergic to something these days? So if most people have an allergy of some kind, does that mean that most of us are walking around waiting for the next auto-immune disaster to strike?
If the majority of people have an increased susceptibility to auto-immune disorders, then that's the new normal. Or maybe this is how we've always been. Maybe humans were never meant to eat such a wide variety of foods, travel to such a wide variety of places, and be exposed to so many potential allergens over a lifetime. Maybe we haven't yet adapted to our new mobility. But maybe we still can.
Thursday, February 25, 2010
Granola
I have had a couple of requests for a granola recipe. I have used this one for ages. The original idea for it came from a cookbook by Kathleen Daelemans called Cooking Thin with Chef Kathleen, but I have made a few of my own modifications.
10 cups oats or 8 cups oats and 2 cups puffed cereals (such as rice or corn)
1 tablespoon cinnamon
1 1/2 cups brown sugar
1/2 cup water
1 teaspoon salt
1 teaspoon vanilla
Preheat the oven to about 325.
Place 10 cups of cereal (oats or a mixture of oats and puffed cereal) in a very large bowl. Add the cinnamon and stir to combine well.
Put the brown sugar and water in a bowl and cook in the microwave for 5 minutes, or until it gains a syrupy texture. You will want a bowl that holds several cups of liquid since the mixture will bubble up while cooking.
As soon as the syrup is finished cooking, add the vanilla and salt and stir until the salt dissolves. When as much salt as possible has dissolved, pour the syrup over the oat mixture. Do not scrape out the syrup bowl--it is likely that a little salt will cling to the edges and it won't taste so great in your granola!
Stir the syrup into the oats mixture. When it is well combined, spread it onto 2 large, greased baking sheets (or baking sheets that are lined with a Silpat or parchment paper) and pop them in the oven. Bake for a total of 40 to 50 minutes, until you can just barely see the oats beginning to brown. Allow the granola to cool and then store it in airtight containers. I imagine you could probably store it for a couple of weeks at room temperature, although with 4 kids, this granola has never lasted much more than a day at my house.
If you like to have dried fruit in your granola, I suggest adding it after baking (otherwise the fruit will scorch). There are lots of great possible variations. A couple that my family likes include:
Add 1 tsp. powdered ginger with the oats and mix with 1+ cup dried cranberries after baking.
Add a mixture of raisins and dates after baking.
Other things you could try would be to add coconut or sunflower seeds to the oat mixture--remember keep your total at 10 cups--and/or try other spices and dried fruits.
10 cups oats or 8 cups oats and 2 cups puffed cereals (such as rice or corn)
1 tablespoon cinnamon
1 1/2 cups brown sugar
1/2 cup water
1 teaspoon salt
1 teaspoon vanilla
Preheat the oven to about 325.
Place 10 cups of cereal (oats or a mixture of oats and puffed cereal) in a very large bowl. Add the cinnamon and stir to combine well.
Put the brown sugar and water in a bowl and cook in the microwave for 5 minutes, or until it gains a syrupy texture. You will want a bowl that holds several cups of liquid since the mixture will bubble up while cooking.
As soon as the syrup is finished cooking, add the vanilla and salt and stir until the salt dissolves. When as much salt as possible has dissolved, pour the syrup over the oat mixture. Do not scrape out the syrup bowl--it is likely that a little salt will cling to the edges and it won't taste so great in your granola!
Stir the syrup into the oats mixture. When it is well combined, spread it onto 2 large, greased baking sheets (or baking sheets that are lined with a Silpat or parchment paper) and pop them in the oven. Bake for a total of 40 to 50 minutes, until you can just barely see the oats beginning to brown. Allow the granola to cool and then store it in airtight containers. I imagine you could probably store it for a couple of weeks at room temperature, although with 4 kids, this granola has never lasted much more than a day at my house.
If you like to have dried fruit in your granola, I suggest adding it after baking (otherwise the fruit will scorch). There are lots of great possible variations. A couple that my family likes include:
Add 1 tsp. powdered ginger with the oats and mix with 1+ cup dried cranberries after baking.
Add a mixture of raisins and dates after baking.
Other things you could try would be to add coconut or sunflower seeds to the oat mixture--remember keep your total at 10 cups--and/or try other spices and dried fruits.
Monday, February 8, 2010
Life is about...
Sometimes I feel like life might just be about driving the kids to the places they need to go. Most days I suspect that life is really about figuring out what to cook for dinner next. Ever since I started working on the Sophie Safe Food Guide, I thought that life should be about working on that. Whenever something new comes up with my health or my kids' health, I'm certain that life is really about managing health--allergies, endocrine system, strep throat, sinus infections, asthma, etc. But in the end I always realize that life is about balance.
I struggle to balance the needs of our 6 person household with my desire to have a successful business. Most days this struggle results in one of two things: either I work on the couch using my laptop while there are children snuggled in as close as they can get with me still being able to type, or I work late into the night, past the kids' bedtime, and mine as well.
I wrestle with managing the day to day requirements of the house while keeping up with my business goals: every day at 5:00 I feel panic surge through me as I realize that I must, once again, make dinner.
I wonder if I'm doing the right thing when I give Sophie an extra treat because she couldn't have what everyone else had at a party or event. Is it enough? Is there a better way to compensate for what she misses? Is it unfair to the other children?
And at school, with friends, at church, I debate about taking care of Sophie's allergies completely by myself, or asking others to make accommodations. I feel the constant need to balance her (and my) need for acceptance and friendship with the desire not to burden others. Do I ask her to "just make do" too often? Have my requests for others to adjust been too demanding? When it's an issue of safety, the question is easy--I won't put my child in danger for anyone's convenience. But often it's an issue of desire, not safety. Yet how often can a child's simple wants be denied before there is emotional damage?
I hope that I am balancing things in a way that will teach my children that through prioritization, they can accomplish great things. I hope that I am managing Sophie's allergies in a way that will help her understand how to accommodate others and be compassionate. I know that she feels the compassion of others as our friends frequently pack her a special little bag of treats for Halloween, or go to multiple stores to find cookies that she can have, or offer to make something Sophie Safe for the class Christmas party, or keep their pantries stocked with a handful of Sophie-Safe snacks for when she comes to play. I hope I can teach her to focus on the blessings of love and kindness that have come into her life because of her food allergies. I hope I can set that example.
I struggle to balance the needs of our 6 person household with my desire to have a successful business. Most days this struggle results in one of two things: either I work on the couch using my laptop while there are children snuggled in as close as they can get with me still being able to type, or I work late into the night, past the kids' bedtime, and mine as well.
I wrestle with managing the day to day requirements of the house while keeping up with my business goals: every day at 5:00 I feel panic surge through me as I realize that I must, once again, make dinner.
I wonder if I'm doing the right thing when I give Sophie an extra treat because she couldn't have what everyone else had at a party or event. Is it enough? Is there a better way to compensate for what she misses? Is it unfair to the other children?
And at school, with friends, at church, I debate about taking care of Sophie's allergies completely by myself, or asking others to make accommodations. I feel the constant need to balance her (and my) need for acceptance and friendship with the desire not to burden others. Do I ask her to "just make do" too often? Have my requests for others to adjust been too demanding? When it's an issue of safety, the question is easy--I won't put my child in danger for anyone's convenience. But often it's an issue of desire, not safety. Yet how often can a child's simple wants be denied before there is emotional damage?
I hope that I am balancing things in a way that will teach my children that through prioritization, they can accomplish great things. I hope that I am managing Sophie's allergies in a way that will help her understand how to accommodate others and be compassionate. I know that she feels the compassion of others as our friends frequently pack her a special little bag of treats for Halloween, or go to multiple stores to find cookies that she can have, or offer to make something Sophie Safe for the class Christmas party, or keep their pantries stocked with a handful of Sophie-Safe snacks for when she comes to play. I hope I can teach her to focus on the blessings of love and kindness that have come into her life because of her food allergies. I hope I can set that example.
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