Wednesday, May 13, 2009
FAAW #3 - Full disclosure
When I was at the conference in March, one of the things I took away from it was, it is possible for a child to forever test positive for an allergy via skin test even after they have outgrown it. With this tidbit of wisdom from Dr. Wood, I sought him out during one of the breaks and he was kind enough to take a few minutes to talk to me. I explained Kayla’s history (and her continuously decreasing blood levels and persistent positive skin tests). With that and her age, he recommended that we do a food challenge.
In the food allergy world, testing (both RAST and skin) are not always the most accurate. They are, in a lot of cases, best used as a guide with a child’s reaction (or lack of) to a food being your deciding factor. The only TRUE way to diagnose a food allergy is by eating the food.
Kayla, thanks to our diligence has not had a known reaction to dairy since she was 11 months old and has not ingested it since her first time at 8 months. So in conjunction with her allergist, we decided to challenger her. We did so in early April. This whole thing was a whirlwind for us and had me filled with a ton of anxiety. So much so that we did not share our plan with anyone, friends or family.
So the day before her challenge, I picked up a container of cow’s milk and hoped for the best or rather mostly for the worst to not happen.
Leading up to the challenge, I struggled with how much to tell Kayla. We have always vowed to be honest with her regarding her allergy (in an age appropriate manner of course). She can not learn to advocate for and take care of herself without a full knowledge and understanding of her condition. So I did tell her about the challenge and told her that I would be with her the entire time and both her doctor and me would keep her safe and help her. At first she was uneasy but then said she wanted to eat ice cream from the ice cream truck. After that I dropped it – I figured dwelling on it would only heighten her anxiety. But she’s too smart and remembered. The day of, she was very upset and did not want to “eat dairy”. She got upset and started to cry when the nurse was getting her weight, etc. She did not want to go in the exam room.
Her doc was excellent with her. He explained it to her in simple terms. Although it did not change her mind. Our first step was to put a drop on her skin. So we put a DVD in for her hoping to distract her. It was not surprising to me that when she cried, Alysa cried. I know from experience it’s a kid and sibling thing. Finally, in order to lessen Kayla’s anxiety, I told her doc to “sneak” a drop on her leg while she was watching the DVD. He turned his back and blocked Kayla’s view of the milk. Unfortunately, Alysa could see it and freaked out. I never expected her fear and it took me by surprise. She was crying and yelling, “No cow’s milk!” “We’ve got to get out of here!”. But with Kayla distracted, he was able to get a drop on her leg and when she asked what it was, he told her it was a little liquid. He left and we waited. Kayla’s too smart for us though and told me it was cow’s milk on her leg. After 15 or so minutes, I was encouraged since there was no reaction on her skin.
He did then do a skin prick test which of course came back positive. But to be sure, we went ahead with the challenge. At first she did not want to drink it, but all it took was for me to take a drop in my mouth (oh what bliss). She then voluntarily “drank” a tiny drop and surprisingly she liked the taste. But…it only took a minute or two for her to complain that her lip hurt. He checked and it was red. A minute later, as she continued to complain, she had hives on the inside of her lower lip. He immediately gave her Benadryl. A couple minutes after that she started to grab at her throat and when we questioned her she told us her throat itched. He stayed with us and watched her and thankfully that is where it ended. He let us hang out for a while to be sure she was OK before sending us home.
So Kayla is most DEFINITELY still allergic. And although it is encouraging that she did not react on contact, I am not holding my breath that she will never react on contact again. Food allergy reactions are so unpredictable and one reaction does not predict the next. And since every exposure and reaction can make future reactions worse, we can not let our guard with her history of sensitive reactions.
So although we did not get the outcome we were hoping for, we do know for sure she is still allergic. So we will continue on monitoring her via skin tests at this point and at least we know for her, currently, her skin tests are very accurate (especially with how strong her skin test reactions are). So life in our house has not changed, but we can try to remain optimistic that someday it will.
In the food allergy world, testing (both RAST and skin) are not always the most accurate. They are, in a lot of cases, best used as a guide with a child’s reaction (or lack of) to a food being your deciding factor. The only TRUE way to diagnose a food allergy is by eating the food.
Kayla, thanks to our diligence has not had a known reaction to dairy since she was 11 months old and has not ingested it since her first time at 8 months. So in conjunction with her allergist, we decided to challenger her. We did so in early April. This whole thing was a whirlwind for us and had me filled with a ton of anxiety. So much so that we did not share our plan with anyone, friends or family.
So the day before her challenge, I picked up a container of cow’s milk and hoped for the best or rather mostly for the worst to not happen.
Leading up to the challenge, I struggled with how much to tell Kayla. We have always vowed to be honest with her regarding her allergy (in an age appropriate manner of course). She can not learn to advocate for and take care of herself without a full knowledge and understanding of her condition. So I did tell her about the challenge and told her that I would be with her the entire time and both her doctor and me would keep her safe and help her. At first she was uneasy but then said she wanted to eat ice cream from the ice cream truck. After that I dropped it – I figured dwelling on it would only heighten her anxiety. But she’s too smart and remembered. The day of, she was very upset and did not want to “eat dairy”. She got upset and started to cry when the nurse was getting her weight, etc. She did not want to go in the exam room.
Her doc was excellent with her. He explained it to her in simple terms. Although it did not change her mind. Our first step was to put a drop on her skin. So we put a DVD in for her hoping to distract her. It was not surprising to me that when she cried, Alysa cried. I know from experience it’s a kid and sibling thing. Finally, in order to lessen Kayla’s anxiety, I told her doc to “sneak” a drop on her leg while she was watching the DVD. He turned his back and blocked Kayla’s view of the milk. Unfortunately, Alysa could see it and freaked out. I never expected her fear and it took me by surprise. She was crying and yelling, “No cow’s milk!” “We’ve got to get out of here!”. But with Kayla distracted, he was able to get a drop on her leg and when she asked what it was, he told her it was a little liquid. He left and we waited. Kayla’s too smart for us though and told me it was cow’s milk on her leg. After 15 or so minutes, I was encouraged since there was no reaction on her skin.
He did then do a skin prick test which of course came back positive. But to be sure, we went ahead with the challenge. At first she did not want to drink it, but all it took was for me to take a drop in my mouth (oh what bliss). She then voluntarily “drank” a tiny drop and surprisingly she liked the taste. But…it only took a minute or two for her to complain that her lip hurt. He checked and it was red. A minute later, as she continued to complain, she had hives on the inside of her lower lip. He immediately gave her Benadryl. A couple minutes after that she started to grab at her throat and when we questioned her she told us her throat itched. He stayed with us and watched her and thankfully that is where it ended. He let us hang out for a while to be sure she was OK before sending us home.
So Kayla is most DEFINITELY still allergic. And although it is encouraging that she did not react on contact, I am not holding my breath that she will never react on contact again. Food allergy reactions are so unpredictable and one reaction does not predict the next. And since every exposure and reaction can make future reactions worse, we can not let our guard with her history of sensitive reactions.
So although we did not get the outcome we were hoping for, we do know for sure she is still allergic. So we will continue on monitoring her via skin tests at this point and at least we know for her, currently, her skin tests are very accurate (especially with how strong her skin test reactions are). So life in our house has not changed, but we can try to remain optimistic that someday it will.
1 Comments:
I'm sorry you didn't get the outcome you were hoping for; but you're right - at least you do know whether she truly is still allergic or not and don't have that nagging wondering thought in the back of your mind.
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