We’ve talked to several doctors recently… our own pediatrician, who admitted there aren’t any experts on food allergies in Marin or SF (as an aside – WTF?!?!), but will review our research notes and try to get us some info; the doctor in Portland (who wanted to review the boys records before he would consider even seeing us, and who said he’ll treat tree nuts); the doctor in Dallas (who is doing the treatments, but thinks he can’t get a ‘safe/clean’ source for tree nuts, so isn’t doing them); and our own pediatric allergist, who is, sadly, not cutting edge when it comes to food allergies, but he’s the only thing going in Marin.
Now, through a series of conversations that led to new information, we are now in touch with a doctor (Dr. Kari Nadeau) at Stanford who has apparently morphed her nut desensitization trials (from research trials with criteria that excluded A&A previously) to studies (including for tree nuts!) they might be eligible for. I am harassing pretty much everyone involved in order to get the boys in. At the same time, the doctor in Portland (Dr. Baker) reviewed the kids’ medical records, and agreed to meet with us, so we have an appointment in Portland at the end of August (when we were planning to go up to visit my brother & his wife anyway). I also spoke to a local mom who moved her family to North Carolina a few years ago to put her son through a peanut research trial there, who told me about the process. She said it was pretty rough and exhausting, and that they get more sensitive before they are cleared, but he’s now peanut allergy-free and has to eat peanuts every day. It’s all exciting and nerve-wracking and we’re continuing to push forward on all fronts.
One of the things that makes me push forward is moments like this, from today:
I’ve been emailing back and forth with a mom of one of Ari’s classmates, who is having his 6th birthday party this weekend. She was thoughtful enough to ask me about where they could get safe pizza, to help create a safe environment for Ari, and then we traded emails about the cake. I told her it was ok for her to buy a cake; we’re used to bringing our own safe cake to birthday parties for our kids. She emailed me today that she decided to make the cake and that it would be nut-free. When I responded how much we appreciated that, she wrote back: “My conversation with Ari last year, a few days prior to his 5th birthday party, is forever engrained in my mind. It just about broke my heart when he said all he wished for was to not have his nut allergy and to just eat the same stuff as everyone else. So this is my little gift to him since I can’t make his wish come true. Such a sweet kid.”
It brings tears to my eyes reading it now, as it did earlier today. I want to make Ari’s wish come true, too, and so I will push, and call, and harangue whomever I need to, in order to get them treated.
Friday, July 29, 2011
Thursday, July 21, 2011
From technophile to luddite…
I used to be very cutting edge when it came to technology. I was an early adopter of many cool developments over the years… the Mac, the PalmPilot, email, the Web, TiVo… now I struggle just to set up a basic blog, something which every 6 year old seems to have. I feel like a luddite when I read the terms in the blogging software… it’s like another vocabulary. Seriously, WTF is a gravatar, widget, akismet, Tag Cloud and Vodpod? I just want to write, and publish it to a few people I know, without having to learn a new language… and now that I’ve said that, I officially feel old and curmudgeony.
If you’re reading this, I’ve figured out how to invite you to view this blog; a significant advancement. In addition to the technical challenges, I had to get over my bias regarding blogging… I have been known to mock blogging, wondering why so many people think that the world wants to know what flavor ice cream they think is best or what innane idea popped through their head that moment. Time for me to either eat humble pie (nut-safe, of course) or mock myself (I think I’ll do a bit of each) as I’m now turning to this medium as both a cathartic release and an efficient way of sharing what’s going on with our friends and family. You, after all, have heard and seen the other side… the machinations we go through to manage life with these allergies and the anxiety they bring with them… and so I want to provide you with a window into the optimism and the ups and downs we’ll face in this next stage.
More on who we’re talking to and what they’re saying, soon…
If you’re reading this, I’ve figured out how to invite you to view this blog; a significant advancement. In addition to the technical challenges, I had to get over my bias regarding blogging… I have been known to mock blogging, wondering why so many people think that the world wants to know what flavor ice cream they think is best or what innane idea popped through their head that moment. Time for me to either eat humble pie (nut-safe, of course) or mock myself (I think I’ll do a bit of each) as I’m now turning to this medium as both a cathartic release and an efficient way of sharing what’s going on with our friends and family. You, after all, have heard and seen the other side… the machinations we go through to manage life with these allergies and the anxiety they bring with them… and so I want to provide you with a window into the optimism and the ups and downs we’ll face in this next stage.
More on who we’re talking to and what they’re saying, soon…
Wednesday, July 20, 2011
There’s a first time for everything…
I feel that I’m on the precipice of something big. Something life changing. I don’t want to get ahead of myself, and get too excited (only to suffer the agonizing disappointment that only comes from dreaming so big and wanting so hard), but I really do feel the acid in my throat, the tightness in my head and the pounding of my heart, telling me that life is about to change.
It started three weeks ago. Well, to truly tell the story, it started four years ago… we just didn’t know the story existed until three years ago.
That our children have life threatening food allergies to peanuts and tree nuts first manifested on May 27, 2007, when Ari had a bite of a cookie with nuts in it, and went into anaphylaxis. At 21 months old, his airways began to close up. We called 911 and he was rushed to the hospital. We had no idea that Ari was allergic to tree nuts – not prior to that day, nor that day itself. The ER docs and paramedics concluded he had choked on the cookie, and after ensuring he was breathing safely again, sent us home. It was a year later, in April 2008, when Ari had his second anaphylactic reaction (this time to trace amounts of walnut), that he was diagnosed with severe nut allergies, and our lives changed. It took us a while to truly believe what this diagnosis meant, both in actual risks and changes in lifestyle, and it felt surreal. Could it really be that the same box of cereal that we had always eaten (that didn’t have nuts in it, but was made in a facility with nuts) was now considered lethal? It didn’t make sense. It didn’t comport with our reality.
In September 2008, Ari had his third anaphylactic reaction, was shot with an EPI-pen, and was again rushed to the hospital. His reaction this time was triggered by a minuscule amount of walnut that was in the saliva on his brother’s water bottle, that Ari had put in his mouth. It started to sink in for us how real and easily triggered this allergy was, and so we became more diligent about our segregation of nuts within our house and from our kids.
Four months later, Aviv (then almost 2 years old) had his first reaction, and his was to an even more remote allergen – the granola bar he took a bite from didn’t have nut ingredients, but had been made on the same equipment with nuts. As we learned the hard way, that seemingly innocuous connection was enough to trigger a strong reaction.
And so our lives changed again, this time significantly hightening and tightening the restrictions further. Over the past three years, we made our home nut-free, not allowing any food items into our home that had nut ingredients, or were made in a facility (or on equipment with) nuts. We wanted to create a environment for our children in which they – and the adults who take care of them – could feel safe eating and touching anything. We grieved over the changes in our life, and were fearful about what life would be like for our kids with these risks and restrictions. We made the decision (against our allergist’s recommendation) to continue going to restaurants, but learned what questions to ask to ascertain whether they could make food safely for our kids. We made decisions about what we would eat near our children. We educated anyone whose home we went to about exposure risks, and asked about (and advised on) menus. We took wipes with us everywhere, and cleaned all surfaces that our kids would touch so that leftover nut oils wouldn’t get on their hands. We worked with their schools and toddler programs and appealed to them to ‘go nut-free’ – that is, to not serve any snacks with nuts (or those made in facilities, or on equipment, with nuts…), and asked other parents not to bring unsafe foods. We trained any adult who spent time with our kids – nannies, grandparents, camp staff, preschool staff, etc. – on what symptoms to look for, and how to properly use an EPI-pen. We learned how to navigate events like birthday parties, where every snack table and colorful cake felt like a death sentence. We learned how to explain about their nut allergies in several languages, and had notes written up in other languages to hand to restaurant staff when we travelled. We learned how to make flying as safe as possible, including making our own ‘airplane meals’ for flight staff to heat for us, informing crew and nearby passengers, and cleaning a ‘safe space’ for our kids on the plane. We made safe cupcakes and froze them for easy defrost and bringing to birthday parties. We asked everyone who touched our kids, or came into our home, to wash their hands first. We helped educate other parents who recently had kids diagnosed, and were – like us a few years earlier – devastated and stunned, and didn’t know where to begin. We found online resources to learn from, and online shops to buy safe food from. We learned how to make nut-free charoset. We found tiny little Medic Alert bracelets for each of our boys to help alert those around them to their allergy, and we taught our children to wear them proudly and point them out to (and talk comfortably about them with) new people they met. We cried when we felt our children were left out of things because of their allergies, and we strengthened (and left behind) certain friendships based on their levels of support and accommodation of our kids. We ordered emergency cards (with their allergy info and emergency contact info) that we placed in their clothes and bags. We struggled to answer the tiny voices that asked the big questions of ‘why us?’, and sighed and said ‘me too’ in response to our kids’ quiet whispers of “I wish I wasn’t allergic to nuts.” We wrote letters to other parents in our kids’ classrooms letting them know about their allergies, and thanked them for their cooperation in maintaining a safe environment. We tirelessly explained what nuts are (and aren’t), and that a severe allergy is not a diet preference. We developed hand and mouth washing protocols (after eating nuts elsewhere) to avoid contaminating our kids. We helped our preschool implement their decision to go nut-free for us, sourcing safe foods and assisting with education. We made decisions to not attend certain schools, restaurants, parties, camps, events and homes, because we didn’t feel the environment would be safe for our kids. We read labels… thousands of food labels and cosmetics labels… to see what had nuts or nut oils hidden inside; grocery store visits took hours initially, as we scoured every box and package to find safe products. We spoke to manufactures to learn about their manufacturing processes. We researched and drafted lists that we handed out to schools, parents and camps, indicating common brands and foods that were safe (i.e. nut-free) for kids lunches, and where to buy them. We fought tears and anxiety on an ongoing basis. We had near misses, where despite all steps being taken to prevent nuts from being served to our kids, they were… and were caught in the nick of time. We kept EPI-pen and Benadryl kits everywhere - 9 kits, last time I counted – and never let the kids go anywhere without one. We didn’t feel comfortable trying out new care givers/babysitters, as the training and trust needed was too intense. We caused a topical allergic reaction by kissing them on their cheeks, 6 hours after eating nuts elsewhere. We made decisions about jobs to take, based on the employer’s flexibility in regards to our children. We learned everything we could in order to manage these allergies (and their corresponding risks) as closely as possible. We taught our kids to protect themselves, to ask questions about their food, and to not take food from others. We taught them not to feel ashamed or second-class, and to be able to talk about their allergy confidently. We asked others to not use a piteous tone when talking with our kids about their allergies. We answered with an informed ‘no’ to the oft-asked question of whether they are likely to outgrow their allergies, and felt a quiet twinge of sadness each time. We appreciated the fact that our kids had, at least, the same allergies, as we strive to ‘find the gift’ in every situation. We tried not to let these allergies define us and our kids and our lives, but the truth is that they do.
And now I sit at the precipice of yet another life change. This time, however, the tide is moving the other direction. Three weeks ago we met with a doctor in Israel that rocked our world. His clinic - and two clinics that he told us about in the US - are administering desensitization treatments for common food allergies. TREATMENTS. Not research trials, as have been taking place for the last few years, that we have watched enviously, not able to participate in due to age restrictions or geographical location; actual treatment. We are in contact with these three cutting edge clinics (one in Israel, one in Portland, and one in Dallas), and we are soaking up information. It doesn’t seem real, and we have a lot to learn and think about (and doctors to talk with and questions to ask) before any decisions can be made, but this is big. This is life changing. This is the closest we’ve come to believing that this risk could be eradicated.
So here I am… late at night, typing instead of sleeping, hopeful but apprehensive, teaching myself how to start a blog so that I can capture this journey. This journey that will be hard (emotionally and physically) and scary and probably long. The journey that I hope ends with a final posting saying simply, “It’s over.”
It started three weeks ago. Well, to truly tell the story, it started four years ago… we just didn’t know the story existed until three years ago.
That our children have life threatening food allergies to peanuts and tree nuts first manifested on May 27, 2007, when Ari had a bite of a cookie with nuts in it, and went into anaphylaxis. At 21 months old, his airways began to close up. We called 911 and he was rushed to the hospital. We had no idea that Ari was allergic to tree nuts – not prior to that day, nor that day itself. The ER docs and paramedics concluded he had choked on the cookie, and after ensuring he was breathing safely again, sent us home. It was a year later, in April 2008, when Ari had his second anaphylactic reaction (this time to trace amounts of walnut), that he was diagnosed with severe nut allergies, and our lives changed. It took us a while to truly believe what this diagnosis meant, both in actual risks and changes in lifestyle, and it felt surreal. Could it really be that the same box of cereal that we had always eaten (that didn’t have nuts in it, but was made in a facility with nuts) was now considered lethal? It didn’t make sense. It didn’t comport with our reality.
In September 2008, Ari had his third anaphylactic reaction, was shot with an EPI-pen, and was again rushed to the hospital. His reaction this time was triggered by a minuscule amount of walnut that was in the saliva on his brother’s water bottle, that Ari had put in his mouth. It started to sink in for us how real and easily triggered this allergy was, and so we became more diligent about our segregation of nuts within our house and from our kids.
Four months later, Aviv (then almost 2 years old) had his first reaction, and his was to an even more remote allergen – the granola bar he took a bite from didn’t have nut ingredients, but had been made on the same equipment with nuts. As we learned the hard way, that seemingly innocuous connection was enough to trigger a strong reaction.
And so our lives changed again, this time significantly hightening and tightening the restrictions further. Over the past three years, we made our home nut-free, not allowing any food items into our home that had nut ingredients, or were made in a facility (or on equipment with) nuts. We wanted to create a environment for our children in which they – and the adults who take care of them – could feel safe eating and touching anything. We grieved over the changes in our life, and were fearful about what life would be like for our kids with these risks and restrictions. We made the decision (against our allergist’s recommendation) to continue going to restaurants, but learned what questions to ask to ascertain whether they could make food safely for our kids. We made decisions about what we would eat near our children. We educated anyone whose home we went to about exposure risks, and asked about (and advised on) menus. We took wipes with us everywhere, and cleaned all surfaces that our kids would touch so that leftover nut oils wouldn’t get on their hands. We worked with their schools and toddler programs and appealed to them to ‘go nut-free’ – that is, to not serve any snacks with nuts (or those made in facilities, or on equipment, with nuts…), and asked other parents not to bring unsafe foods. We trained any adult who spent time with our kids – nannies, grandparents, camp staff, preschool staff, etc. – on what symptoms to look for, and how to properly use an EPI-pen. We learned how to navigate events like birthday parties, where every snack table and colorful cake felt like a death sentence. We learned how to explain about their nut allergies in several languages, and had notes written up in other languages to hand to restaurant staff when we travelled. We learned how to make flying as safe as possible, including making our own ‘airplane meals’ for flight staff to heat for us, informing crew and nearby passengers, and cleaning a ‘safe space’ for our kids on the plane. We made safe cupcakes and froze them for easy defrost and bringing to birthday parties. We asked everyone who touched our kids, or came into our home, to wash their hands first. We helped educate other parents who recently had kids diagnosed, and were – like us a few years earlier – devastated and stunned, and didn’t know where to begin. We found online resources to learn from, and online shops to buy safe food from. We learned how to make nut-free charoset. We found tiny little Medic Alert bracelets for each of our boys to help alert those around them to their allergy, and we taught our children to wear them proudly and point them out to (and talk comfortably about them with) new people they met. We cried when we felt our children were left out of things because of their allergies, and we strengthened (and left behind) certain friendships based on their levels of support and accommodation of our kids. We ordered emergency cards (with their allergy info and emergency contact info) that we placed in their clothes and bags. We struggled to answer the tiny voices that asked the big questions of ‘why us?’, and sighed and said ‘me too’ in response to our kids’ quiet whispers of “I wish I wasn’t allergic to nuts.” We wrote letters to other parents in our kids’ classrooms letting them know about their allergies, and thanked them for their cooperation in maintaining a safe environment. We tirelessly explained what nuts are (and aren’t), and that a severe allergy is not a diet preference. We developed hand and mouth washing protocols (after eating nuts elsewhere) to avoid contaminating our kids. We helped our preschool implement their decision to go nut-free for us, sourcing safe foods and assisting with education. We made decisions to not attend certain schools, restaurants, parties, camps, events and homes, because we didn’t feel the environment would be safe for our kids. We read labels… thousands of food labels and cosmetics labels… to see what had nuts or nut oils hidden inside; grocery store visits took hours initially, as we scoured every box and package to find safe products. We spoke to manufactures to learn about their manufacturing processes. We researched and drafted lists that we handed out to schools, parents and camps, indicating common brands and foods that were safe (i.e. nut-free) for kids lunches, and where to buy them. We fought tears and anxiety on an ongoing basis. We had near misses, where despite all steps being taken to prevent nuts from being served to our kids, they were… and were caught in the nick of time. We kept EPI-pen and Benadryl kits everywhere - 9 kits, last time I counted – and never let the kids go anywhere without one. We didn’t feel comfortable trying out new care givers/babysitters, as the training and trust needed was too intense. We caused a topical allergic reaction by kissing them on their cheeks, 6 hours after eating nuts elsewhere. We made decisions about jobs to take, based on the employer’s flexibility in regards to our children. We learned everything we could in order to manage these allergies (and their corresponding risks) as closely as possible. We taught our kids to protect themselves, to ask questions about their food, and to not take food from others. We taught them not to feel ashamed or second-class, and to be able to talk about their allergy confidently. We asked others to not use a piteous tone when talking with our kids about their allergies. We answered with an informed ‘no’ to the oft-asked question of whether they are likely to outgrow their allergies, and felt a quiet twinge of sadness each time. We appreciated the fact that our kids had, at least, the same allergies, as we strive to ‘find the gift’ in every situation. We tried not to let these allergies define us and our kids and our lives, but the truth is that they do.
And now I sit at the precipice of yet another life change. This time, however, the tide is moving the other direction. Three weeks ago we met with a doctor in Israel that rocked our world. His clinic - and two clinics that he told us about in the US - are administering desensitization treatments for common food allergies. TREATMENTS. Not research trials, as have been taking place for the last few years, that we have watched enviously, not able to participate in due to age restrictions or geographical location; actual treatment. We are in contact with these three cutting edge clinics (one in Israel, one in Portland, and one in Dallas), and we are soaking up information. It doesn’t seem real, and we have a lot to learn and think about (and doctors to talk with and questions to ask) before any decisions can be made, but this is big. This is life changing. This is the closest we’ve come to believing that this risk could be eradicated.
So here I am… late at night, typing instead of sleeping, hopeful but apprehensive, teaching myself how to start a blog so that I can capture this journey. This journey that will be hard (emotionally and physically) and scary and probably long. The journey that I hope ends with a final posting saying simply, “It’s over.”
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