Half way to the school to pick up the kids this afternoon I get a phone call from my son's teacher.
"Mrs. K, your son woke up from his nap and he's all blotchy."
(To myself) Great.
(To her) I'll be there in less than 5 minutes, please just keep an eye on him.
(Teacher) I will.
I get there less than 3 minutes later. Yup, that is hives. For the 3rd time in 2 weeks. But from what? I have no idea. None whatsoever.
So I picked him up, and picked my daughter up while I was at it. He's had his benadryl and his face is getting better by the minute.
Thanks for the heart attack kid!
Monday, March 29, 2010
Sunday, March 28, 2010
How we became diary free
As promised, here is the story of how we became a food allergy family. It's long and exhausting and at time emotional as well. It's really a chronicle of my son's first year as well. Grab some popcorn and settle in.
My son was born in July, in California. His birth was an easy one. I wanted nothing more than to get out of that hospital, despite it being a very nice one. We were discharged shortly after he was 24 hours old. Honestly, that is what saved him from death. If we'd stayed I would have put him back in the nursery that night, and he would have passed from this earth without a sound.
After we left the hospital we went to Babies R Us to get him some padding for his car seat. He was quite skinny. Then we went to Applebee's for lunch. The waiter asked us how old he was, and when we told him 26 hours, his eyes nearly bugged out of his head.
We came home and my husband picked my daughter up from the neighbor's house. The neighbors all came over to take a good look at him in his bassinet. From that moment when I was alone in the house with him, and he was in his bassinet while I attempted to read a magazine, I started to get a feeling that something wasn't right with him. I'd had a newborn before, and she didn't act like he did. Nothing crazy, just some niggling thing in the back of my mind. Nothing I could really put my finger on.
The day went on, I nursed, he slept and ate, I cuddled him and introduced his big sister, then 18 months old, to him. Many pictures were taken. I was exhausted by bed time.
I laid him in his bassinet right next to my bed. I couldn't get him to really settle down, he kept fussing. I couldn't fall asleep, so I was reading with the light on. At 3am I looked over to him because he seemed to stop fussing, and he was blue. Rigid arms and legs splayed out, completely blue from head to toe. He had made no noise.
I jumped out of bed and grabbed him. I thought he was having a seizure. I started screaming at my husband to wake up and threw the telephone at his head screaming "Call 911!" He did, then threw the phone back at me and grabbed the baby. He started doing CPR as I talked to the person from 911.
Suddenly I heard a tiny cry. He was alive! Moments later the entire fire station and half the police station burst through my front door. They slammed around and stomped around in huge boots. They took my son and checked him out, but couldn't find anything actually wrong with him. They loaded him into the ambulance. I tried to go too, but someone pointed out I was in a nightgown. I threw on a maternity shirt and pants, stuffed my bare feet into a pair of shoes and left in the ambulance, without my purse.
My husband woke my daughter, who had slept through it all and took her next door. The neighbors we had at that time were truly wonderful people. They took her in for the night, and most of the next week. He then raced to the hospital and got there just slightly after we did.
They admitted my son and did every test imaginable on him. Blood, urine, x-ray, EKG, EEG, and everything else under the sun. I remember being too afraid to touch him. I couldn't nurse him, I was so scared. I eventually did start pumping though, after he'd had formula for a few days.
I was exhausted. I had just given birth and I had not slept in more than 3 days at one point. I got in the elevator to get outside and get some sun, and on the way back up I remember thinking to myself that it had been days since I slept, ate, took a shower, or even changed my clothing. I was so tired I was dizzy and had to hold on to the wall of the elevator to keep from passing out. There was a well dressed man in the elevator, and he kept giving me these weird looks. When it stopped on our floor I stumbled out and back to my son's room. The man followed me. It turns out he was a cardiologist, and I was so embarrassed that he was going to be one of our son's doctors after seeing my moment of weakness.
About a week after he was admitted we took him home. He was hooked up to an apnea monitor that would tell us if he stopped breathing. He was to have a respiratory therapist come out every few weeks. We were to see this cardiologist fellow on a regular basis, although nothing was wrong with his heart. We were to see the pediatrician as soon as possible.
That afternoon Ryan's commanding officer and his wife came to our home. He expressed his sympathy, and told us that they weren't going to make Ryan deploy in several months, which he had been scheduled to do. I was so grateful.
My mother came into town a few days later. It was the first time I had been left alone with him and I was terrified. His apnea monitor would go off randomly, frequently. We didn't know why. He was a good baby. He ate like a champ, had normal diapers, and slept well. All testing came back normal. He just couldn't remember to breathe.
After a couple of months fighting with the pediatrician we finally saw a gastroenterologist. She thought it was reflux. She put him on high calorie formula because he was so thin still. She put him on antacid. He saw her from 5 months old until 15 months old. He was still so thin, he was off the charts. He was not getting any better. I fought the insurance company to let us have the apnea monitor until his first birthday, and it kept going off. He started showing signs I recognized as markers of autistic behavior from my days working in group home with autistic people.
Every other month he had pneumonia. He was admitted to the hospital over and over again. He had cystic fibrosis testing, he had lung and gut biopsies. One time he passed out in front of me from dehydration, but he'd been eating and drinking just fine. Everything kept coming back normal, but he was wasting away in front of me, despite being a happy little guy who loved to eat and be cuddled.
Ryan finally did have to leave for a deployment. I was starting to get mad that no one could figure out what was wrong with my son. I wanted him to see a pulmonologist. I fought with the pediatrician about it, and she finally authorized us to take him to an allergist.
That was when we met Dr. Au and our lives turned around. Dr. Au actually listened to me talk about my son's medical history. He didn't interrupt. He didn't act as if I was some crazy mother. He didn't condescend me for being concerned. He actually told me that first day that he thought he knew what was wrong with my baby, but that we'd need to do testing.
We did blood testing and skin prick testing. On the day my son turned 16 months old I got the call. He had Heiner's syndrome. It makes your lungs bleed when you eat dairy. He also was allergic to dairy in the normal way, as well as wheat, bananas, and tree nuts, and he had asthma from the destruction of his lungs. They also found that a good few of his inoculations didn't give him immunity to deadly diseases, and he had to have repeat shots a couple of times before that issue was cleared up. Dr. Au told us to stop the formula immediately and take all these things out of our diet right away.
Within the next month I saw great improvement in my son. He was happier, he was able to eat, he stopped having apnea episodes. He didn't catch pneumonia again for 3 months. His x-rays started coming back with less and less crap in his lungs. He actually gained weight. And, most important, he stopped having autistic-like behavior.
My husband came home from Kuwait, and he had to get into the swing of a gluten, dairy, and nut free diet as well as the plethora of medications my son was currently on. I started noticing more food allergy signs in my daughter as I learned more about it. She was tested too, and came back allergic to pinto beans, peanuts, oats, carrots, pineapple, cinnamon and bay leaves. We removed those from our diets too.
Then I started noticing my son didn't look at me when I was talking to him, he didn't seem to respond, or really talk much at all. These things were in the background for so long with all the other more obvious issues. I took him to the ped, who referred us to an ENT. They said he had enough fluid behind his ears that it was seriously impacting his ability to hear. He got tubes placed that April.
By that summer we were well on our way to having a happy healthy family for the first time in two years. It was heaven. We moved to Pennsylvania. We got a new allergist who told us to trial all of my daughter's food allergies. It turned out she'd outgrown them all but peanuts and oats.
She also told us to trial all of my son's allergies, at home. This was where I got a little upset, since he'd had anaphylaxis after anaphylaxis as an infant (that's what the "apnea" episodes were), and I thought it was unsafe. We did trial wheat and bananas though, and he was able to eat those foods again. The allergist refused to do an in office test for my son's dairy allergy, or even run an x-ray to check on the Heiner's syndrome. So we quit her and decided to take up with Dr. Wood in Johns Hopkins Hospital in Baltimore, MD. We've had quite a good experience with him so far.
Out home is still 100% dairy and nut free. We still eat that way every single day. My son is 3.5 years old now. He still has asthma. He still has deadly food allergies, he's still thin for his age. But he's energetic, he's intelligent, and he's fairly healthy. Last year he didn't need hospitalized even once, and this year so far only once. Antibiotic resistant pneumonia.
The journey is far from over though. We're hoping for an in hospital food challenge in the next couple of years. We're hoping to get some answers as to why he still gets weird illnesses. He'll need immunology testing done, and possibly genetic testing as well.
I've learned so much from all of this about who I can be, how strong I can be, and what I can do to help others. I've joined a group of parents and children who live life in a different way than most people around them. A group of people with disabilities you can't see from just looking at them. And the movement to advocate for them to be able to live their lives in the least restricted, most safe way possible.
I've learned how to cook from scratch, and I can almost quote the allergens in almost any food you ask me about. To the point that people make fun of me about it once in a while.
I don't mind. I'm just glad I have my baby. That he's alive. That he's not hurting all the time. And that I can do something as simple as prepare his food, and it keeps him safe.
My son was born in July, in California. His birth was an easy one. I wanted nothing more than to get out of that hospital, despite it being a very nice one. We were discharged shortly after he was 24 hours old. Honestly, that is what saved him from death. If we'd stayed I would have put him back in the nursery that night, and he would have passed from this earth without a sound.
After we left the hospital we went to Babies R Us to get him some padding for his car seat. He was quite skinny. Then we went to Applebee's for lunch. The waiter asked us how old he was, and when we told him 26 hours, his eyes nearly bugged out of his head.
We came home and my husband picked my daughter up from the neighbor's house. The neighbors all came over to take a good look at him in his bassinet. From that moment when I was alone in the house with him, and he was in his bassinet while I attempted to read a magazine, I started to get a feeling that something wasn't right with him. I'd had a newborn before, and she didn't act like he did. Nothing crazy, just some niggling thing in the back of my mind. Nothing I could really put my finger on.
The day went on, I nursed, he slept and ate, I cuddled him and introduced his big sister, then 18 months old, to him. Many pictures were taken. I was exhausted by bed time.
I laid him in his bassinet right next to my bed. I couldn't get him to really settle down, he kept fussing. I couldn't fall asleep, so I was reading with the light on. At 3am I looked over to him because he seemed to stop fussing, and he was blue. Rigid arms and legs splayed out, completely blue from head to toe. He had made no noise.
I jumped out of bed and grabbed him. I thought he was having a seizure. I started screaming at my husband to wake up and threw the telephone at his head screaming "Call 911!" He did, then threw the phone back at me and grabbed the baby. He started doing CPR as I talked to the person from 911.
Suddenly I heard a tiny cry. He was alive! Moments later the entire fire station and half the police station burst through my front door. They slammed around and stomped around in huge boots. They took my son and checked him out, but couldn't find anything actually wrong with him. They loaded him into the ambulance. I tried to go too, but someone pointed out I was in a nightgown. I threw on a maternity shirt and pants, stuffed my bare feet into a pair of shoes and left in the ambulance, without my purse.
My husband woke my daughter, who had slept through it all and took her next door. The neighbors we had at that time were truly wonderful people. They took her in for the night, and most of the next week. He then raced to the hospital and got there just slightly after we did.
They admitted my son and did every test imaginable on him. Blood, urine, x-ray, EKG, EEG, and everything else under the sun. I remember being too afraid to touch him. I couldn't nurse him, I was so scared. I eventually did start pumping though, after he'd had formula for a few days.
I was exhausted. I had just given birth and I had not slept in more than 3 days at one point. I got in the elevator to get outside and get some sun, and on the way back up I remember thinking to myself that it had been days since I slept, ate, took a shower, or even changed my clothing. I was so tired I was dizzy and had to hold on to the wall of the elevator to keep from passing out. There was a well dressed man in the elevator, and he kept giving me these weird looks. When it stopped on our floor I stumbled out and back to my son's room. The man followed me. It turns out he was a cardiologist, and I was so embarrassed that he was going to be one of our son's doctors after seeing my moment of weakness.
About a week after he was admitted we took him home. He was hooked up to an apnea monitor that would tell us if he stopped breathing. He was to have a respiratory therapist come out every few weeks. We were to see this cardiologist fellow on a regular basis, although nothing was wrong with his heart. We were to see the pediatrician as soon as possible.
That afternoon Ryan's commanding officer and his wife came to our home. He expressed his sympathy, and told us that they weren't going to make Ryan deploy in several months, which he had been scheduled to do. I was so grateful.
My mother came into town a few days later. It was the first time I had been left alone with him and I was terrified. His apnea monitor would go off randomly, frequently. We didn't know why. He was a good baby. He ate like a champ, had normal diapers, and slept well. All testing came back normal. He just couldn't remember to breathe.
After a couple of months fighting with the pediatrician we finally saw a gastroenterologist. She thought it was reflux. She put him on high calorie formula because he was so thin still. She put him on antacid. He saw her from 5 months old until 15 months old. He was still so thin, he was off the charts. He was not getting any better. I fought the insurance company to let us have the apnea monitor until his first birthday, and it kept going off. He started showing signs I recognized as markers of autistic behavior from my days working in group home with autistic people.
Every other month he had pneumonia. He was admitted to the hospital over and over again. He had cystic fibrosis testing, he had lung and gut biopsies. One time he passed out in front of me from dehydration, but he'd been eating and drinking just fine. Everything kept coming back normal, but he was wasting away in front of me, despite being a happy little guy who loved to eat and be cuddled.
Ryan finally did have to leave for a deployment. I was starting to get mad that no one could figure out what was wrong with my son. I wanted him to see a pulmonologist. I fought with the pediatrician about it, and she finally authorized us to take him to an allergist.
That was when we met Dr. Au and our lives turned around. Dr. Au actually listened to me talk about my son's medical history. He didn't interrupt. He didn't act as if I was some crazy mother. He didn't condescend me for being concerned. He actually told me that first day that he thought he knew what was wrong with my baby, but that we'd need to do testing.
We did blood testing and skin prick testing. On the day my son turned 16 months old I got the call. He had Heiner's syndrome. It makes your lungs bleed when you eat dairy. He also was allergic to dairy in the normal way, as well as wheat, bananas, and tree nuts, and he had asthma from the destruction of his lungs. They also found that a good few of his inoculations didn't give him immunity to deadly diseases, and he had to have repeat shots a couple of times before that issue was cleared up. Dr. Au told us to stop the formula immediately and take all these things out of our diet right away.
Within the next month I saw great improvement in my son. He was happier, he was able to eat, he stopped having apnea episodes. He didn't catch pneumonia again for 3 months. His x-rays started coming back with less and less crap in his lungs. He actually gained weight. And, most important, he stopped having autistic-like behavior.
My husband came home from Kuwait, and he had to get into the swing of a gluten, dairy, and nut free diet as well as the plethora of medications my son was currently on. I started noticing more food allergy signs in my daughter as I learned more about it. She was tested too, and came back allergic to pinto beans, peanuts, oats, carrots, pineapple, cinnamon and bay leaves. We removed those from our diets too.
Then I started noticing my son didn't look at me when I was talking to him, he didn't seem to respond, or really talk much at all. These things were in the background for so long with all the other more obvious issues. I took him to the ped, who referred us to an ENT. They said he had enough fluid behind his ears that it was seriously impacting his ability to hear. He got tubes placed that April.
By that summer we were well on our way to having a happy healthy family for the first time in two years. It was heaven. We moved to Pennsylvania. We got a new allergist who told us to trial all of my daughter's food allergies. It turned out she'd outgrown them all but peanuts and oats.
She also told us to trial all of my son's allergies, at home. This was where I got a little upset, since he'd had anaphylaxis after anaphylaxis as an infant (that's what the "apnea" episodes were), and I thought it was unsafe. We did trial wheat and bananas though, and he was able to eat those foods again. The allergist refused to do an in office test for my son's dairy allergy, or even run an x-ray to check on the Heiner's syndrome. So we quit her and decided to take up with Dr. Wood in Johns Hopkins Hospital in Baltimore, MD. We've had quite a good experience with him so far.
Out home is still 100% dairy and nut free. We still eat that way every single day. My son is 3.5 years old now. He still has asthma. He still has deadly food allergies, he's still thin for his age. But he's energetic, he's intelligent, and he's fairly healthy. Last year he didn't need hospitalized even once, and this year so far only once. Antibiotic resistant pneumonia.
The journey is far from over though. We're hoping for an in hospital food challenge in the next couple of years. We're hoping to get some answers as to why he still gets weird illnesses. He'll need immunology testing done, and possibly genetic testing as well.
I've learned so much from all of this about who I can be, how strong I can be, and what I can do to help others. I've joined a group of parents and children who live life in a different way than most people around them. A group of people with disabilities you can't see from just looking at them. And the movement to advocate for them to be able to live their lives in the least restricted, most safe way possible.
I've learned how to cook from scratch, and I can almost quote the allergens in almost any food you ask me about. To the point that people make fun of me about it once in a while.
I don't mind. I'm just glad I have my baby. That he's alive. That he's not hurting all the time. And that I can do something as simple as prepare his food, and it keeps him safe.
Friday, March 26, 2010
National Jewish to conduct survey about food allergy families
http://www.medicalnewstoday.com/articles/181837.php
"Families have a range of responses to their children's food allergies. Available data suggest that half of parents with food-allergic children experience a pervasive fear for their child's safety, and a sizable subgroup restrict normal child and family activities because of food allergies. Others do not appreciate the potential severity of a food-allergy reaction and are casual about their precautions and preparations."
This is a great idea. I run into families all the time who have different standards than my own. Some make me look like I ought to be wearing a tinfoil hat, whereas others make me look like the queen of calm. I wish I had a child between 6-12 years old so we could participate!
"Families have a range of responses to their children's food allergies. Available data suggest that half of parents with food-allergic children experience a pervasive fear for their child's safety, and a sizable subgroup restrict normal child and family activities because of food allergies. Others do not appreciate the potential severity of a food-allergy reaction and are casual about their precautions and preparations."
This is a great idea. I run into families all the time who have different standards than my own. Some make me look like I ought to be wearing a tinfoil hat, whereas others make me look like the queen of calm. I wish I had a child between 6-12 years old so we could participate!
Thursday, March 25, 2010
That explains it
After giving my son benadryl for a "mystery" reaction this afternoon on the way home from school *more on that later*, I realized it's been like 3 weeks since I got ahold of the allergist's office and they never returned my call.
Here's why: http://foodallergyassistant.blogspot.com/2010/03/food-allergy-conference-this-week-end.html
Probably due to the fact that our world-famous awesome allergist Dr. Wood is preparing to speak at the 17th Annual Food Allergy Conference on Saturday. Too bad I can't afford a ticket to it, I'd love to go!
** Ok, back to the reaction. I suspect it's something he got into at school since they just had lunch before I picked them up. It was a half a day. Maybe it got hectic and everyone didn't wash their hands, I don't know. All it was was just hives on his face this time. Regardless, benadryl was to the rescue, and now he's napping upstairs.
Here's why: http://foodallergyassistant.blogspot.com/2010/03/food-allergy-conference-this-week-end.html
Probably due to the fact that our world-famous awesome allergist Dr. Wood is preparing to speak at the 17th Annual Food Allergy Conference on Saturday. Too bad I can't afford a ticket to it, I'd love to go!
** Ok, back to the reaction. I suspect it's something he got into at school since they just had lunch before I picked them up. It was a half a day. Maybe it got hectic and everyone didn't wash their hands, I don't know. All it was was just hives on his face this time. Regardless, benadryl was to the rescue, and now he's napping upstairs.
Wednesday, March 24, 2010
Welcome
Welcome to my blog! Later on in the week I'm going to start off with a little bit of background. It helps to know where we started, and how we got to this point in our lives. For me it's a very emotional story, and so I hope you all can gain some understanding of why our lives are the way they are.
I also hope that through this blog I can raise awareness of what it is like to live every day with food allergies and asthma. Some days we can almost forget and live like everyone else, but most days there is at least one reminder of how different we really are.
I also hope that through this blog I can raise awareness of what it is like to live every day with food allergies and asthma. Some days we can almost forget and live like everyone else, but most days there is at least one reminder of how different we really are.
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