Peanut Oral Immunotherapy starts today for my son

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  • hoosierdoc

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    My 10yo is allergic to peanuts. Anaphylactic. Peanut IgE > 100 (highest lab will read). We’ve avoided it for years but recently started looking into peanut OIT. Start with very very low oral dose and work up from there. The goal is to be able to eat 8 peanuts a day and not have a reaction. After a year of that he can try to eat whatever he wants.

    https://www.cincinnatichildrens.org/service/a/allergy-immunology/programs/food-allergy/peanut-clinic

    a peanut has 250-300mg of the allergen in it. His first dose today was 0.1mg. After 0.2mg he complained of throat pain which is typical. Got very nervous though and wanted to stop. We’ve been telling him this is serious and to avoid peanuts for years and now we’re shoving it into him. Did the 0.4mg and 0.8mg, dosing every 20 minutes or so. Next is 1.5mg

    talk about courage. Knowing something can kill you and opening your mouth to take it. I’m a bit of an emotional wreck at the moment but we’re both hanging in there. I brought 4 epi pens and a crich kit. The crich has a #6 cannula so not sure what good it would do in. 10yo but I had it in the car so why not :D

    Something to look at if you have a kid with a peanut allergy. Someone in Ft Wayne is doing this now.
     

    actaeon277

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    Good luck buddy.
    I'd say "be careful", but I'm pretty sure you know more than I, and are more careful.

    So, I hope this works.
    If it does, maybe it can help more people.
     

    T.Lex

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    Yeah, doc, good for you for looking at this. I know others who have kids who are hyper-sensitive and it would be great if we (collectively) can find a way to alleviate that anxiety.
     

    hoosierdoc

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    Thanks buddy.

    ideally you start young, like under 3 so your immune system can remodel more. But, at least we’re starting.

    no symptoms after 1.5mg.

    to make the solution we had to buy PB2 powder and a set of measuring spoons down to 1/64 tsp. They put 1/64 tsp powder into 13ml solution and 1ml is 1mg
     

    HoughMade

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    If he can successfully do this, it will make life so much simpler for you all.

    A lawyer I used to work with almost threw me out of the car in I-69 near Charlotte, MI when I opened a bag of French Burnt peanuts...for this reason.
     

    Hohn

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    Is it just me or did allergies to peanuts, whey, gluten, etc etc not really exist much in the 70s-80s when I was a kid?

    Like with autism, too. When I was a kid, nobody knew anyone with these kinds of medical issues. Now, EVERYONE knows someone who is having to deal with these serious challenges.

    I don't think it's just an awareness issue, I think it's legitimately occurring at a much higher rate than 40 years ago. And I'd like to know why.
     

    HoughMade

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    Is it just me or did allergies to peanuts, whey, gluten, etc etc not really exist much in the 70s-80s when I was a kid?

    Like with autism, too. When I was a kid, nobody knew anyone with these kinds of medical issues. Now, EVERYONE knows someone who is having to deal with these serious challenges.

    I don't think it's just an awareness issue, I think it's legitimately occurring at a much higher rate than 40 years ago. And I'd like to know why.

    It's multifactorial.

    Awareness is a big part of it.

    As to autism, there has been a significant expansion of what is thought to be on the "autism spectrum". When you redefine a term to encompass a lot more things, you have a lot more of it.

    As to food allergies, yes, there seems to be more. I'm not saying any of this applies to Doc because there have always been food allergies, but when my oldest was young the recommendation was to not give kids peanuts or things with peanuts in them, for the first year. Guess what? He is mildly allergic to peanuts. He was allergic to eggs, but that gradually subsided. The recommendation is not keeping peanuts away anymore. In addition, what about all the whey, gluten, eggs, peanuts, etc., etc., etc., that we decided was bad for kids and quit giving them? What about lower breastfeeding rates? Somewhat related- antibacterial everything? Our efforts to keep from exposing our kids to things has backfired.
     

    IndyTom

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    It's multifactorial.

    Awareness is a big part of it.

    As to autism, there has been a significant expansion of what is thought to be on the "autism spectrum". When you redefine a term to encompass a lot more things, you have a lot more of it.

    As to food allergies, yes, there seems to be more. I'm not saying any of this applies to Doc because there have always been food allergies, but when my oldest was young the recommendation was to not give kids peanuts or things with peanuts in them, for the first year. Guess what? He is mildly allergic to peanuts. He was allergic to eggs, but that gradually subsided. The recommendation is not keeping peanuts away anymore. In addition, what about all the whey, gluten, eggs, peanuts, etc., etc., etc., that we decided was bad for kids and quit giving them? What about lower breastfeeding rates? Somewhat related- antibacterial everything? Our efforts to keep from exposing our kids to things has backfired.

    Some of the research I read when my kids were coming said it has a lot to do with how foods are processed. In countries (Eastern) where minimally processed or raw peanuts are commonly included in dishes, there aren't a lot of allergies. I don't remember the specifics, but something in the way we process peanuts for peanut butter changes how the proteins are exposed and eating it while pregnant is one of the suspected vectors that can cause the allergy.

    Then again, I don't think those other countries are into all the anti-bacterial crap, either. So, YMMV.
     

    hoosierdoc

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    Hough nailed it. Now they say expose to things quickly and if evidence of an allergy then expose more. It’s odd but seems true. My kids grew up in the era of avoiding peanuts. When it changed our pediatrician still recommended against peanuts and even our Riley allergist recommended against OIT, even though no life-threatening reactions have ever happened in it. He still thinks it’s Too dangerous

    this clinic has an 18-month waiting list for it
     

    printcraft

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    One of mine has the condition, I didn't know you could do this... She is in her 20's now.
    I usually just throw peanuts at her if we go to TexasRoadhouse for dinner. I don't think it helps, but it does make me feel better.


    VizziniDeath.gif
     

    hoosierdoc

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    Done with the 6mg dose :rockwoot:

    he got some abd pain and nausea with it so gonna start at 3ml at home. Just adds an extra up dose at the end, not a big deal

    no we wait until 4:50 for observation and I see if I can make it to work in the rain and rush hour by 7
     

    Alamo

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    Holy cow, I ate multiple times the dose for your son just last night. Love roasted peanuts in the shell.

    Good luck with the regimen, I hope it works, he will be much safer in the long run for it.
     

    rhino

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    My 10yo is allergic to peanuts. Anaphylactic. Peanut IgE > 100 (highest lab will read). We’ve avoided it for years but recently started looking into peanut OIT. Start with very very low oral dose and work up from there. The goal is to be able to eat 8 peanuts a day and not have a reaction. After a year of that he can try to eat whatever he wants.

    https://www.cincinnatichildrens.org/service/a/allergy-immunology/programs/food-allergy/peanut-clinic

    a peanut has 250-300mg of the allergen in it. His first dose today was 0.1mg. After 0.2mg he complained of throat pain which is typical. Got very nervous though and wanted to stop. We’ve been telling him this is serious and to avoid peanuts for years and now we’re shoving it into him. Did the 0.4mg and 0.8mg, dosing every 20 minutes or so. Next is 1.5mg

    talk about courage. Knowing something can kill you and opening your mouth to take it. I’m a bit of an emotional wreck at the moment but we’re both hanging in there. I brought 4 epi pens and a crich kit. The crich has a #6 cannula so not sure what good it would do in. 10yo but I had it in the car so why not :D

    Something to look at if you have a kid with a peanut allergy. Someone in Ft Wayne is doing this now.

    This is a good thing. If successful, it could save his life. More importantly, he'll be able to enjoy one of the greatest things in all of God's creation: peanut butter.
     

    Libertarian01

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    Doc,

    Good luck on every step of the process.

    I've heard that these severe allergies have been a growing problem in modern times. Kids don't run around barefoot anymore, so they don't absorb bacteria, both good and bad, through their feet. Their immune systems don't grow and develop with the strength of previous generations so that when they are finally exposed to something later in adulthood- BAM! Very bad results follow.

    Our diets are the same thing. How many children are raised on processed food and almost never, or truly never, eat real natural food? This lack of exposure results in the bodies inability to respond appropriately to what should be normal, natural food. In the olden days we ate what was grown in the garden, slaughtered a few animals if we had them, gathered some natural fruits, nuts, and berries, and ate whatever someone hunted. Our diet was forced upon us by the environment in which we lived. Even later our diet was still controlled by what was in season and available.

    Today, everything is available all the time. And to make it "easy" it comes processed, packaged and treated. The problem is we're on the second or third generation being raised like this. Our separation from the natural world around us is growing more and more distant.

    On a side note I am curious as to whether any studies have been done looking at what pregnant women don't eat and if there is an increased probability of food sensitivity in their children? If mommy doens't eat something the fetus never gets exposed. Lack of exposure could result in the new kid's immune system not being able to differentiate good stuff from bad stuff. That is just a thought from me here.

    Anyway's, I've rambled too long. Just all the best!

    Doug
     

    hoosierdoc

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    I got to bed at 4:30am this morning after work. Shortly thereafter I'm woken up to a son saying something like "isn't breathing at all". WTF. The boys slept together on the family room floor last night. Jump out of bed, then notice the younger son puking in a bathroom and my wife there. Apparently it was "isn't feeling well at all". The oldest was on his computer playing fortnight in no distress. Whew. A little flashback PTSD on that one. Downed some benadryl and back to bed.

    Before dosing they want him calm for at least 30 minutes and not to have increased metabolism from playing/running/fever/etc. That can increase immune response. And he has to be calm for two hours after the dose. And it needs to be done about the same time every day. This is going to be challenging with our schedules all over the place. Gonna take seven months.
     

    actaeon277

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    Doc,

    Good luck on every step of the process.

    I've heard that these severe allergies have been a growing problem in modern times. Kids don't run around barefoot anymore, so they don't absorb bacteria, both good and bad, through their feet. Their immune systems don't grow and develop with the strength of previous generations so that when they are finally exposed to something later in adulthood- BAM! Very bad results follow.

    Our diets are the same thing. How many children are raised on processed food and almost never, or truly never, eat real natural food? This lack of exposure results in the bodies inability to respond appropriately to what should be normal, natural food. In the olden days we ate what was grown in the garden, slaughtered a few animals if we had them, gathered some natural fruits, nuts, and berries, and ate whatever someone hunted. Our diet was forced upon us by the environment in which we lived. Even later our diet was still controlled by what was in season and available.

    Today, everything is available all the time. And to make it "easy" it comes processed, packaged and treated. The problem is we're on the second or third generation being raised like this. Our separation from the natural world around us is growing more and more distant.

    On a side note I am curious as to whether any studies have been done looking at what pregnant women don't eat and if there is an increased probability of food sensitivity in their children? If mommy doens't eat something the fetus never gets exposed. Lack of exposure could result in the new kid's immune system not being able to differentiate good stuff from bad stuff. That is just a thought from me here.

    Anyway's, I've rambled too long. Just all the best!

    Doug

    George Carlin, so language warning.
    https://www.youtube.com/watch?v=X29lF43mUlo
     
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