Name:
Monday, November 02, 2009
Kayla's Story
Back in March, at the FAAN conference I attended in Baltimore, I learned about some of the newest food allergy studies on the horizon. Dr. Robert Wood (top in the allergy field) spoke of the newest milk studies being done with milk products baked into foods such as muffins, etc. These studies greatly intrigued me, as do all of the studies in the allergy community. As you all know I am a big supporter of these studies. It is the only way we will ever be able to beat out these allergies and cure our children and prevent our future children or even grandchildren from having to live their lives the way our children now do. I raise money for this type of research and am always interested in the outcomes.
In April when Kayla had her food challenge (and failed), not only did her skin test show a very strong reaction to milk, but she reacted with hives and an itchy throat to only a small drop of milk on her tongue. At that time, her doctor and I both agreed that the next time it comes around where she would be ready for another challenge we would first try milk in a baked form.
Then in May I was notified by FAAN about a baked milk study being done in New York City at Mt. Sinai hospital. If you asked me a year ago, if I’d ever consider putting Kayla in a study, I would have said an emphatic NO WAY! But my curiosity got the best of me and I contacted the woman in charge of the study. After a few e-mails I received a telephone call and was able to learn more about the study. Over time my curiosity grew to be real interest. Overall, it took J and me three months to decide to go ahead with the study and even then I scheduled her first challenge for October thinking I had plenty of time to change my mind and back out before then.
The Study itself is very interesting. It is being done at Mount Sinai hospital in New York City led by one of the top allergists and food allergy researches, Dr. Hugh Sampson. The goal of the study is to see if she (or kids in general) can tolerate eating dairy in a baked form heated for a certain length of time at a certain temperature and to see if doing so changes her chance of outgrowing her milk allergy. Over time the goal is to decrease the length of time the milk has been heated as well as the temperature and to eventually have her safely drinking unheated milk. The total length of time this study can last is 3 years 10 months. There are four total possible challenges done over a two day period. The food challenges, in order are muffin, pizza, rice pudding and unheated milk. At any time of even a hint of a reaction, the challenges would be stopped. Whichever food she would have been able to eat successfully would be fed to her at home. For example, if she could eat the muffin yet reacted to the pizza, we would have had to continue to feed her muffins with milk baked in at home for a period of 6 or 12 months. At which time we would bring her back to pick up the challenges with pizza. It would be imperative during that time to keep the rest of her diet the same with all the same strict controls on dairy exposure – both for her safety and the validity of the study.
We opted to do the challenges over two days back-to-back to lessen our trips into the City. On the morning of October 27th, before the challenge they drew blood to do IgE testing and at that time they inserted an IV in case of a worst case scenario reaction. Our first hint of good news came when they did her skin test for dairy. She was tested with the milk extract, milk itself and boiled milk. Her reaction to “real” milk and boiled milk was nonexistent and her reaction to the milk extract was very very very small. This alone made me almost fall off the bed from shock. Her next step was the muffin. All the food was given to her in servings of increasing size every 15 minutes over the course of 1 to 1 ½ hours depending on how much they had for her to eat. Kayla devoured the muffin they gave her as fast as she could (the poor kid was starving!). Let me say here that this was the most nerve-wracking, stressful 2 days of my life! To feed her food that we spent years avoiding for fear of a reaction was so scary. I was watching her like a hawk and even drove her crazy with “how do you feel?” Kayla actually got to a point where she would just look at me and say, “I already said FINE!” :) When she finished the muffin they waited 2 hours (to be sure of no delayed reactions) before giving her a slice of pizza, again in small and increases doses. And let me say this kid LOVED the pizza. She couldn’t get enough. I will admit, I went into this study thinking she may have a chance at eating the muffin, but NEVER in a million years did I think she’d be able to eat pizza cheese. I honestly did not think we’d be staying overnight in the hospital. But that’s exactly what she did. And Wednesday morning, although she has never like rice pudding, she was a trooper and was able to safely eat ALL the rice pudding. Tuesday, Jerome was with me so at least I had someone else to watch her with me and at least keep my nerves company. But Wednesday it was all me (and the 2 nurses in the room) and it was scary and stressful and exciting. Because after waiting the 2 hours after rice pudding, at 11:30am she took her first sip of chocolate cow’s milk (the chocolate flavoring actually helped her overcome her fear of drinking the cow’s milk). In the end she safely drank 6 ounces of real, bonafide cow’s milk with not a reaction or hive to show for it.
And Kayla made J and me so very proud. She was a trooper. She knew what we were doing, she knew she was being fed dairy, but she took it in stride. She listened to the nurses and did what they told her to do. I know she was scared because the night before right before bed, she got a monster of a headache. Tuesday morning when we got into The City and parked, she clung to me as we walked the few blocks to the entrance of Mt. Sinai. She never complained or argued about eating the muffin or the pizza. She even initially questioned whether the pizza had cheese on it. By Tuesday night she had warmed up to the nurses and was giving out hugs. She was also going stir crazy but we were able to get down to the children’s play room area for toys and arts and crafts that evening. Kayla seemed to sleep pretty well; I on the other hand really didn’t sleep at all. Those chairs they say fold into a bed are a joke!!! Wednesday morning she even ate all the rice pudding even though I could tell she hated every bit of it. She’s never liked rice pudding so I wondered how it would go, although until Tuesday night I never thought we’d get that far. The only time she showed fear was when I told her she’d have to drink cow’s milk. That, to her, was it – the real stuff. And the thing she remembers having a reaction to (just 6 months ago). She kept telling me she didn’t want to and wasn’t going to, no matter how much I explained it to her. Finally I told my antsy girl that it was the only way for us to be able to go home. But when the nurse came in all she had to say was she could flavor it with chocolate and Kayla was then ALL about drinking it. She, again, couldn’t get enough of it. In the end she ate a whole muffin, a slice of pizza, a whole lotta rice pudding and 6 ounces of cow’s milk over a 2 day period and nada – zippo, NO reactions.
We are still in complete shock and now trying to navigate the murky waters of re-entering normal world with no food restrictions. For me, anyway, this is pretty hard. I know it will be a loooong time until I stop reading ingredients and I am constantly washing my hands after touching dairy – it’s ingrained and I feel dirty! I catch myself watching her like a hawk after she consumes some. It is just all surreal right now.
Kayla, on the other hand has made a seamless transition. She didn’t really get it when we were leaving. So as we’re walking through the halls of the hospital on our way out, I told her she was no longer allergic and could eat dairy. She jumped up and down, danced around and sang, “I can eat dairy now!” And now she just keeps thinking of all the things she can do and have now that she couldn’t before. Friday was her big day at school having pizza for lunch. She wants ice cream from the ice cream truck. She announced it to everyone at school. Speaking of school – those people, the ones whom we would not be here without, if they had not taken her allergy so seriously and really really tried, and been successful at keeping her from reacting at school, she would not be where she is. And it touched me to see them rally around her. I was told they were literally jumping for joy and I have gotten so many congratulations. I was also told other kids were going to the teachers – “Did you hear? Kayla can have dairy now!” So it goes beyond the adults and it is so sweet.
Kayla enjoyed her first ever Halloween being able to eat what she was given. She loves peanut butter cups, candy corns, kit kats and m&m’s. She continues to drink cow’s milk with chocolate syrup but so far does not like cheese. I’m trying to moderate her a bit as to not overload her stomach with new foods, but still give her some daily. Not to mention I had gone food shopping just before the study so we’re not in need of much. :) But I can not wait to get English muffins – oh how I’ve missed those.
Although she never was an active part of the study since she passed all the challenges the first days out, she’s still in it and we will be following their protocol. So in 3 months (January) we will go back to NYC for a check-up. At that time we’ll have to remove all dairy from her diet for 1 month. Then in February we’ll go back again for some testing and another unheated milk challenge. The point of this is to confirm those kids working their way through the foods gradually are really cured and not just not reacting due to a tolerance of foods they were used to maintaining in their system. I don’t foresee any issues with Kayla since she’s fine now after 5 years of no dairy. But technically she’s still in the study. I know that month will be hard on her – not just practically (back to her own snack at school, etc) but also hard to understand. But the study is the reasons we know right now that she can eat dairy again so I do not want to pull out on them. But her restrictions will be less since I’ll know dairy is not a danger, so we won’t have to be insane due to fear of an accidental exposure.
So that is our scoop. It was an amazing thing and I’m now looking forward to care-free events of the future that were so stress-filled in the past. First up is 2 birthday parties in November and Thanksgiving in Ohio. This will be one heck of a Thanksgiving for us with more than our normal to be Thankful for!
And please note – once she’s discharged from the study – we will be having one heck of a PIZZA PARTY!!!!!!!!!!!!
In April when Kayla had her food challenge (and failed), not only did her skin test show a very strong reaction to milk, but she reacted with hives and an itchy throat to only a small drop of milk on her tongue. At that time, her doctor and I both agreed that the next time it comes around where she would be ready for another challenge we would first try milk in a baked form.
Then in May I was notified by FAAN about a baked milk study being done in New York City at Mt. Sinai hospital. If you asked me a year ago, if I’d ever consider putting Kayla in a study, I would have said an emphatic NO WAY! But my curiosity got the best of me and I contacted the woman in charge of the study. After a few e-mails I received a telephone call and was able to learn more about the study. Over time my curiosity grew to be real interest. Overall, it took J and me three months to decide to go ahead with the study and even then I scheduled her first challenge for October thinking I had plenty of time to change my mind and back out before then.
The Study itself is very interesting. It is being done at Mount Sinai hospital in New York City led by one of the top allergists and food allergy researches, Dr. Hugh Sampson. The goal of the study is to see if she (or kids in general) can tolerate eating dairy in a baked form heated for a certain length of time at a certain temperature and to see if doing so changes her chance of outgrowing her milk allergy. Over time the goal is to decrease the length of time the milk has been heated as well as the temperature and to eventually have her safely drinking unheated milk. The total length of time this study can last is 3 years 10 months. There are four total possible challenges done over a two day period. The food challenges, in order are muffin, pizza, rice pudding and unheated milk. At any time of even a hint of a reaction, the challenges would be stopped. Whichever food she would have been able to eat successfully would be fed to her at home. For example, if she could eat the muffin yet reacted to the pizza, we would have had to continue to feed her muffins with milk baked in at home for a period of 6 or 12 months. At which time we would bring her back to pick up the challenges with pizza. It would be imperative during that time to keep the rest of her diet the same with all the same strict controls on dairy exposure – both for her safety and the validity of the study.
We opted to do the challenges over two days back-to-back to lessen our trips into the City. On the morning of October 27th, before the challenge they drew blood to do IgE testing and at that time they inserted an IV in case of a worst case scenario reaction. Our first hint of good news came when they did her skin test for dairy. She was tested with the milk extract, milk itself and boiled milk. Her reaction to “real” milk and boiled milk was nonexistent and her reaction to the milk extract was very very very small. This alone made me almost fall off the bed from shock. Her next step was the muffin. All the food was given to her in servings of increasing size every 15 minutes over the course of 1 to 1 ½ hours depending on how much they had for her to eat. Kayla devoured the muffin they gave her as fast as she could (the poor kid was starving!). Let me say here that this was the most nerve-wracking, stressful 2 days of my life! To feed her food that we spent years avoiding for fear of a reaction was so scary. I was watching her like a hawk and even drove her crazy with “how do you feel?” Kayla actually got to a point where she would just look at me and say, “I already said FINE!” :) When she finished the muffin they waited 2 hours (to be sure of no delayed reactions) before giving her a slice of pizza, again in small and increases doses. And let me say this kid LOVED the pizza. She couldn’t get enough. I will admit, I went into this study thinking she may have a chance at eating the muffin, but NEVER in a million years did I think she’d be able to eat pizza cheese. I honestly did not think we’d be staying overnight in the hospital. But that’s exactly what she did. And Wednesday morning, although she has never like rice pudding, she was a trooper and was able to safely eat ALL the rice pudding. Tuesday, Jerome was with me so at least I had someone else to watch her with me and at least keep my nerves company. But Wednesday it was all me (and the 2 nurses in the room) and it was scary and stressful and exciting. Because after waiting the 2 hours after rice pudding, at 11:30am she took her first sip of chocolate cow’s milk (the chocolate flavoring actually helped her overcome her fear of drinking the cow’s milk). In the end she safely drank 6 ounces of real, bonafide cow’s milk with not a reaction or hive to show for it.
And Kayla made J and me so very proud. She was a trooper. She knew what we were doing, she knew she was being fed dairy, but she took it in stride. She listened to the nurses and did what they told her to do. I know she was scared because the night before right before bed, she got a monster of a headache. Tuesday morning when we got into The City and parked, she clung to me as we walked the few blocks to the entrance of Mt. Sinai. She never complained or argued about eating the muffin or the pizza. She even initially questioned whether the pizza had cheese on it. By Tuesday night she had warmed up to the nurses and was giving out hugs. She was also going stir crazy but we were able to get down to the children’s play room area for toys and arts and crafts that evening. Kayla seemed to sleep pretty well; I on the other hand really didn’t sleep at all. Those chairs they say fold into a bed are a joke!!! Wednesday morning she even ate all the rice pudding even though I could tell she hated every bit of it. She’s never liked rice pudding so I wondered how it would go, although until Tuesday night I never thought we’d get that far. The only time she showed fear was when I told her she’d have to drink cow’s milk. That, to her, was it – the real stuff. And the thing she remembers having a reaction to (just 6 months ago). She kept telling me she didn’t want to and wasn’t going to, no matter how much I explained it to her. Finally I told my antsy girl that it was the only way for us to be able to go home. But when the nurse came in all she had to say was she could flavor it with chocolate and Kayla was then ALL about drinking it. She, again, couldn’t get enough of it. In the end she ate a whole muffin, a slice of pizza, a whole lotta rice pudding and 6 ounces of cow’s milk over a 2 day period and nada – zippo, NO reactions.
We are still in complete shock and now trying to navigate the murky waters of re-entering normal world with no food restrictions. For me, anyway, this is pretty hard. I know it will be a loooong time until I stop reading ingredients and I am constantly washing my hands after touching dairy – it’s ingrained and I feel dirty! I catch myself watching her like a hawk after she consumes some. It is just all surreal right now.
Kayla, on the other hand has made a seamless transition. She didn’t really get it when we were leaving. So as we’re walking through the halls of the hospital on our way out, I told her she was no longer allergic and could eat dairy. She jumped up and down, danced around and sang, “I can eat dairy now!” And now she just keeps thinking of all the things she can do and have now that she couldn’t before. Friday was her big day at school having pizza for lunch. She wants ice cream from the ice cream truck. She announced it to everyone at school. Speaking of school – those people, the ones whom we would not be here without, if they had not taken her allergy so seriously and really really tried, and been successful at keeping her from reacting at school, she would not be where she is. And it touched me to see them rally around her. I was told they were literally jumping for joy and I have gotten so many congratulations. I was also told other kids were going to the teachers – “Did you hear? Kayla can have dairy now!” So it goes beyond the adults and it is so sweet.
Kayla enjoyed her first ever Halloween being able to eat what she was given. She loves peanut butter cups, candy corns, kit kats and m&m’s. She continues to drink cow’s milk with chocolate syrup but so far does not like cheese. I’m trying to moderate her a bit as to not overload her stomach with new foods, but still give her some daily. Not to mention I had gone food shopping just before the study so we’re not in need of much. :) But I can not wait to get English muffins – oh how I’ve missed those.
Although she never was an active part of the study since she passed all the challenges the first days out, she’s still in it and we will be following their protocol. So in 3 months (January) we will go back to NYC for a check-up. At that time we’ll have to remove all dairy from her diet for 1 month. Then in February we’ll go back again for some testing and another unheated milk challenge. The point of this is to confirm those kids working their way through the foods gradually are really cured and not just not reacting due to a tolerance of foods they were used to maintaining in their system. I don’t foresee any issues with Kayla since she’s fine now after 5 years of no dairy. But technically she’s still in the study. I know that month will be hard on her – not just practically (back to her own snack at school, etc) but also hard to understand. But the study is the reasons we know right now that she can eat dairy again so I do not want to pull out on them. But her restrictions will be less since I’ll know dairy is not a danger, so we won’t have to be insane due to fear of an accidental exposure.
So that is our scoop. It was an amazing thing and I’m now looking forward to care-free events of the future that were so stress-filled in the past. First up is 2 birthday parties in November and Thanksgiving in Ohio. This will be one heck of a Thanksgiving for us with more than our normal to be Thankful for!
And please note – once she’s discharged from the study – we will be having one heck of a PIZZA PARTY!!!!!!!!!!!!
