This is not the post I had planned for today. I just saw this article on Janeen's website. It also came across my Google alerts. It is a tragic story of a man who lost his life from a bite of a cookie. All it took was one bite and 90 seconds. Unfortunately he chose not to carry an Epi pen and the life saving measures they did take were not successful. You can read the story here.
This story has got me thinking about my own kids. My son R. has a severe peanut allergy (98.9 IgE on his last RAST,) but I have no idea what kind of reaction to expect if he were to be exposed to a peanut. He has only every had one reaction almost 3 years ago. He ate some of my peanut butter toast and broke out in hives. He had eaten peanut butter before did not have a reaction. We do not have a history of allergies ,so I was surprised he reacted. I knew immediately what was happening so I gave him Benadryl and took him to the pediatrician. He was fine and we have been carrying an Epi pen ever since. I guess we are doing a good job avoiding peanuts ever since. But, I have this huge fear of the unknown. What would happen if he were to eat a peanut? Is he one of those kids who will drop right away? Or will his reaction be gradual? Not knowing what will happen really has me concerned. I do not think he is contact sensitive, but I can not think of a time he has even been in a room with a pure peanut product.
Does anyone else have this same concern?
I also wish I had insisted that he have a RAST test done as part of the initial diagnosis. I did not know anything about food allergies then, and figured that the scratch test was enough. I would love to know what his initial IgE levels were. Have they increased over the last few years? I suppose one piece of advice I would offer moms who are just starting on this journey is to get a RAST done. It may not mean much right away, you need to avoid the allergic food regardless. However, it can be useful to track the progress of the allergy from year to year.
10 comments:
I have a similar fear of Jason with wheat. His RAST numbers for wheat and rye are great than 100. His first reaction was to wheat and it was anaphylactic. Wheat scares me to death.
We had a RAST done at the time of his first reaction, and all of his numbers have steadily gone up (except the grains they've gone through the roof). But at our last food allergy meeting, most of the people there were saying that they don't get RAST's only skin testing every year. We've only ever had the initial skin test. I wish we'd done skin testing every year for at least the egg and milk too. I'd like to see if the hive has grown for that, stayed the same, or is going down. He doesn't seem to be outgrowing anything and I'm very discouraged for him. We practice STRICT avoidance. I'm thinking of seeing another allergist (one I met at one of our meetings. He's just out of med school) 6 months after our last RAST for a second opinion. Maybe I'm doing something wrong? Maybe we aren't getting a view of the big picture? Maybe Jason is just a quircky allergy kid and it's going to take him longer to outgrow the milk and egg (or maybe God forbid he never does)?
Hi there! My son has a peanut allergy. His scratch test revealed it but blood work showed it was not there. On Monday his doctor gave him peanut butter thinking the blood work shown he had outgrown it and we ended up in the ER. (I have a post on my blog about this right now.) So the blood work is not always accurate.
My understanding of this allergy is each expose to peanuts is worse than the time before. So a mild reaction one time can lead to a more deadly one the next time. My son had no reaction the first time he had a peanut but ended up in the ER the second time. Peanut allergy is the most deadly food allergy there is. Scary for us parents. Avoiding peanuts all together (even things processed with peanuts) is the key to safety. I hope that helps.
I can totally identify with your fear. I find it stressful to be a mom of a child with severe allergies & asthma. At home, I feel fine b/c to the best of my knowledge we've eliminated all traces of peanuts. But going anywhere just raises my stress level. (My son is too young to take on the responsibility himself.) How do other moms deal with this?
I feel like we could write a book on this topic. There are just so many variables in dealing with food allergies. Robyn - I have also heard that reactions can worsen with each exposure. Even doctors can not tell you for sure what will happen when there is an exposure. Clearly strict avoidance is the key.
We relied on scratch tests for our daughter's first 3 years of testing, and have only 2 years of RAST data. In her first 2 years - tests revealed she was not allergic to peanut. In her third year - she tested mildly allergic to peanut. In her fourth year - she tested highly allergic to peanut. (Mind you, she had never seen, smelled, or eaten a peanut. Her only known exposure to peanuts was through the scratch test.) Over the past year, she had a contact reaction to peanuts in a summertime pinata (long story) and her RAST score jumped another 20 points. As I fill out camp and school forms, I struggle over the question when to administer benedryl vs. an epipen, because I don't want an epi applied unnecessarily, but I do not know how quickly a particular reaction might progress.
Hi! I also have son that is crazy allergic to peanuts, other legumes, garlic, etc. RAST numbers for peanuts started at 67 when he was two and it has been "over 100" for the past couple of years.
He will be entering a peanut allergy study over the next 5 years to reduce is allergy to peanuts. The researchers will be giving him small amounts of peanut flour, hoping to lessen is reaction to the peanut protein. My first reaction was are you crazy his RAST number are over 100. The researches explained that they have found that the RAST number just shows that you have an allergy to the food and that there is a lot of the IGE antibodies in your system. It does not mean that they will have an anaphylactic reaction, they could but it is not certain. You can even have an anaphylactic reaction with smaller IGE numbers. We will be blogging about Ethan's Journey over the next five years. He starts on July 21. We are neverous and excited!
I also struggle with how to properly instruct my son's teachers on how to handle a reaction. Since we do not know what to expect ourselves, it is hard to give the proper direction. I will post my plan when I get it all worked out.
Robyn - good luck with the study I look forward to reading the progress on your blog.
Hey there - we've had our RAST done both years so far and at 7 months old, she was at .45 and last November at almost two yrs with no exposure, she's at .25 - some good news, but still no party. All I have to compare is that her milk allergy is at .15 and her two accidental ingestions was the full blown anaphlaxis within four and then two minutes, so any peanut ingestion is going to be much worse. I do not fear having to give her the Epi pen and almost thankful I've had the experience to gain confidence and share with others.
I suppose that the RAST number is not necessarily an indication As to how severe the reaction will be.
I know how scary this is, but I find that if I inform teachers and caregivers and make sure people know what to feed (or NOT feed) my child, I feel more confident.
Also, as your kids get older (my nut-allergic daughter is now 8), they get a lot better at taking care of this themselves. Really! Hang in there, ladies.
Also, Modern Allergy Mom, I tagged you on my site. If you want to participate, visit my blog to view the rules. Thanks!
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