Would you want them participate in a trial study? We have an appointment for consent and intake but I’m having second thoughts mostly about exposing my child intentionally to an allergen (to prove a reaction) and how uncomfortable it might be over the course of the trial. Thoughts?
I know the food exposure ones (where they incrementally increased the amount of peanut a person eats every day until they build up a tolerance) resulted in a lot of reactions requiring epinephrine, and I'd have a hard time with that when it's preventable.
On the other hand, I so badly want to cure the allergy for my son and contribute to the finding of a cure more broadly that it would be really tempting.
Post by starburst604 on Feb 14, 2020 14:59:18 GMT -5
I can certainly understand your discomfort. My daughter has allergies to egg, PN and TN. I have a FB friend whose son participates in a clinical study for PN that has resulted in several (medically supervised) reactions. It is his choice to participate so I think that’s the important part. He genuinely wants to help move the scientific research along. How old is your child and how do they feel about it?
Different but with similar misgivings, my DD has been doing OIT for her egg allergy for a few months now. It has brought on a couple of non-life threatening reactions (for her, baked egg means vomiting and/or nausea) but she hasn’t asked to stop. She’s almost 5 and is really motivated to get rid of her allergies.
I wanted to do a trial with my eight year old who has Peanut and tree nut allergies, but he was very, very against it. It made him very anxious to think about the exposure. I make a lot of medical decisions for him, but this was one where I though we needed his buy in, so we didn’t move forward.
How old? A doctor by us does peanut and tree nut OIT and we have talked about maybe doing it when DS is old enough to have a say in it. I still have reservations though.
She is 3 years old. The trial is for 1-3 yo for a year through the children’s hospital. She has had 2 unexpected reactions that we had no idea what the cause was but have not had to use her epipen yet, just benadryl, but they were still scary. I know it will be controlled and she could get the placebo but still have reservations about putting her through that.
Yes. My son is in the age for a peanut trial they're running at his allergist, and I desperately wanted to do it, BUT he'd have to leave school early 2x a month and I'd have to leave work early 2x a month early (I'm a teacher so there's no flexing hours) so I just can't make it work. If I could, I'd jump on it. As he gets older I have new fears (like if he kisses someone who ate nuts, etc) that hadn't concerned me when he was a baby, and I desperately want him to be able to be ok if accidentally exposed.
I would likely participate. You can always stop if needed. Clinical research is so important — we are generally excluded from most studies because of our job, but I always look for opportunities to participate.
Post by AdaraMarie on Feb 14, 2020 17:49:52 GMT -5
I am interested in trials for my dd who is nearly 7 but she is adamantly againstit. I don't know if I would do one for a kid that young - at that age they can't tell you how they feel about things with any nuance so they might have to force a more extreme reaction. I would think that if the kid describe their throat feels funny or something like that they would keep going until they start throwing up or something.
On the other hand, if you introduce the idea of food challenges at the doctor being safe at a younger age, maybe they won't be so resistant to the idea when they're older.
Oh man, 3 is tough. Do you think you could talk about it in age-appropriate terms and see what she thinks? I’d have a hard time doing that without some kind of consent from my kid.
I don’t think we can explain it to her. She is super picky about food and luckily doesn’t even like the foods she’s allergic to. She failed her food challenge because she refused to eat enough. That may be another issue actually, whether they can get her to eat the test food at certain times.
In theory, I’d like to participate and have there be a treatment to help her and others and initially thought of course we will do it. But reading the consent doc and process was concerning.
I don’t think we can explain it to her. She is super picky about food and luckily doesn’t even like the foods she’s allergic to. She failed her food challenge because she refused to eat enough. That may be another issue actually, whether they can get her to eat the test food at certain times.
In theory, I’d like to participate and have there be a treatment to help her and others and initially thought of course we will do it. But reading the consent doc and process was concerning.
Post by Dznyprnces on Feb 14, 2020 19:20:15 GMT -5
I would not, because my daughter would not want to participate if there was a chance of a reaction. She has some anxiety around her allergy, made worse by experiencing her first reaction in November. Even though she knew it would help, she was terrified of the epi. She is almost 11, and even though she now knows from experience the epi works and starts reversing symptoms almost instantly, she’s still afraid of it.
I don’t think we can explain it to her. She is super picky about food and luckily doesn’t even like the foods she’s allergic to. She failed her food challenge because she refused to eat enough. That may be another issue actually, whether they can get her to eat the test food at certain times.
In theory, I’d like to participate and have there be a treatment to help her and others and initially thought of course we will do it. But reading the consent doc and process was concerning.
What about the consent docs concerned you?
Just the description of what it actually involved, the blood draws, and stuff. I am sure it’s normal, I just hadn’t thought it through until I looked at it.
I would not. My child is allergic to peaches so not a life threatening allergy, but I wouldn’t want it to become that way. I also have limited time to spend on doctor appointments.
I have participated in studies before but the only commitment was to sign a paper. It’s been a while so I can’t even remember but it was probably just release of information.
My daughter was anaphylactic to oats when she was younger. We had to use the epipen on her twice and it sucked ass. She would react to touch with any oat products. We had did an OIT trial and she can now eat foods with oat products and even touch them without reacting. She is almost 8 years old and we started the OIT before she entered kindergarten and continued that first year. It saved a lot of anxiety as I wasn't sure how the school would accommodate that as it is a very uncommon allergy.
My daughter was anaphylactic to oats when she was younger. We had to use the epipen on her twice and it sucked ass. She would react to touch with any oat products. We had did an OIT trial and she can now eat foods with oat products and even touch them without reacting. She is almost 8 years old and we started the OIT before she entered kindergarten and continued that first year. It saved a lot of anxiety as I wasn't sure how the school would accommodate that as it is a very uncommon allergy.
This is so good to hear. We started OIT for egg recently in hopes of her being able to tolerate baked egg by the time she goes to kindergarten in the fall or soon after. We will possibly do it for peanut and tree nut down the line, but the egg is the one that feels more limiting for her and harder to avoid.
My daughter was anaphylactic to oats when she was younger. We had to use the epipen on her twice and it sucked ass. She would react to touch with any oat products. We had did an OIT trial and she can now eat foods with oat products and even touch them without reacting. She is almost 8 years old and we started the OIT before she entered kindergarten and continued that first year. It saved a lot of anxiety as I wasn't sure how the school would accommodate that as it is a very uncommon allergy.
This is so good to hear. We started OIT for egg recently in hopes of her being able to tolerate baked egg by the time she goes to kindergarten in the fall or soon after. We will possibly do it for peanut and tree nut down the line, but the egg is the one that feels more limiting for her and harder to avoid.
She still won't eat much in oats but I do give her oatmeal cookies. She still has the mindset that she can't have it. I told her she went from 5 cereals to all and yet she still chooses one of the original 5. We don't have an epipen for her anymore as she has passed the challenges. She did fail a food challenge test for oats about 8 months prior to the trial.
This is so good to hear. We started OIT for egg recently in hopes of her being able to tolerate baked egg by the time she goes to kindergarten in the fall or soon after. We will possibly do it for peanut and tree nut down the line, but the egg is the one that feels more limiting for her and harder to avoid.
She still won't eat much in oats but I do give her oatmeal cookies. She still has the mindset that she can't have it. I told her she went from 5 cereals to all and yet she still chooses one of the original 5. We don't have an epipen for her anymore as she has passed the challenges. She did fail a food challenge test for oats about 8 months prior to the trial.
I wouldn’t be surprised if my DD is the same about what foods she chooses. Even when someone gives her a baked good that’s egg free like a cookie or cupcake she won’t eat it. I think it’s just ingrained in her brain that baked goods are not for her. Which is good as far as keeping her safe but it’s a pain to feed her!!
At 3, I would probably do it. I think it is so necessary and have done it before with my son. if we can logistically make it work we will likely do one in the next few months with my daughter. They have not been that invasive before so we will see what this entails.
I would not participate but full disclosure, we did OIT. We did peanut OIT starting at age 3 and cashew OIT starting at age 4 and successfully completed both at the speed my daughter's body could successfully tolerate, rather than the speed being dictated by a trial. Having to abide by the trial "rules" is the biggest turnoff to me when there are OIT providers out there.
My kids don’t have food allergies, but I did allergy shots with my older daughter which I will assume is vaguely similar in that you expose the body to more and more of the allergen over time. And the risk of anaphylaxis is there.
In any case, I did actually end up with an anaphylactic reaction doing those shots. Because you have to stay at the allergist for awhile after getting the shots for monitoring, I was able to get epi and steroids very quickly and the reaction was very short lived. It was vaguely scary, but I would risk it for my other kids if they end up having allergies. And knowing how quickly they were able to take care of the reaction and keep it from becoming very serious (I hadn’t yet progressed to being unable to breathe, I just turned bright red from head to toe and my brain was reacting sluggishly because when I looked down at my arms I sat there wondering when I’d gotten sunburned and I felt not very well). I would imagine any trial with a potential of anaphylaxis would be monitored very closely and they’d be able to stop any reaction quickly. And if it potentially helped my kid from having an uncontrolled/unmonitored reaction I’d be all for it!