- Welcome to Food Allergy Support.
Posted by spacecanada
- December 23, 2017, 10:03:23 AMThank you, PC. That makes a lot of sense.
Posted by PurpleCat
- December 23, 2017, 08:43:05 AMSC, from a Mom's point of view.....if you do challenge (and it is worth it if you can eliminate an allergen), after, listen to your gut instincts and your body's signals.
DD and I had a sense egg was not gone, but the medical folk said it was just her fears and worry, she was fine cause she passed. Yes, she actually did eat more egg than originally planned at her challenge. After, those little gut issues kept getting bigger and we should have listened to those. Her body was talking.
It's like when we say here, reactions trump testing.
So challenge and then listen is my opinion and advice.
DD and I had a sense egg was not gone, but the medical folk said it was just her fears and worry, she was fine cause she passed. Yes, she actually did eat more egg than originally planned at her challenge. After, those little gut issues kept getting bigger and we should have listened to those. Her body was talking.
It's like when we say here, reactions trump testing.
So challenge and then listen is my opinion and advice.
Posted by spacecanada
- December 22, 2017, 01:58:34 PMThank you, Links. Your comments were very helpful and reassuring. The allergen we are considering challenging (potato) is the one that stresses me out the least, yet restricts me the most (due to being non top-10), so I think I will do the challenge. I just need more time to process all my lingering thoughts and questions before I actually go ahead and schedule it.
Posted by LinksEtc
- December 22, 2017, 01:28:08 PMQuote from: spacecanada on December 21, 2017, 10:23:37 PM
This is my husband's biggest concern about the possibility of me doing a food challenge - that I will pass the IOFC and then have a reaction at home when reintroducing the food, or developing the allergy again, especially since my allergies don't appear on tests. I read through some of the articles linked in here and had some questions:
- In the experience of members here, would an allergist increase the final dose of an IOFC if a patient requested it? To make the final dose, or total combined amount allergen eaten in the challenge, close to what might be considered a normal dose for an average person. Or, should that already be best practice? (My challenge would be for potato, which could be a very large 'normal' dose when considering eating a whole jacket potato as a dinner, for example.)
Just from my experience, some allergists are more open to patient requests than others. I would probably talk to the doc and communicate your fears and let the doc know that this would help you to feel more confident about introducing the allergen at home if you pass the challenge.
Quote from: spacecanada on December 21, 2017, 10:23:37 PM
- How long did it take people here to redevelop their allergy once they passed an IOFC? Is the timeframe fairly consistent, or is it all over the place? (Just curious if there's a point where one could successfully declare the risk of redevelopment unlikely.)
My daughter had very minor symptoms during the challenge, but it was judged to be a "pass". She then reacted at home when we fed her the allergen 2 or 3 days later. She continued to react at home when we fed her sesame. Earlier this year, she had another challenge and she passed and has been doing great since. I think that there were about 5 years between the challenges. She has been eating lots of sesame with no problems.
Quote from: spacecanada on December 21, 2017, 10:23:37 PM
I'm trying to be as level-headed about this as I can, without freaking out too much (online, anyway). I tried looking for a thread on IOFC questions alone but couldn't find one.
My understanding is that the vast majority of the time, if you pass a challenge, then you are not allergic ... and the allergy usually does not come back (for people who have gone through OIT, they may have a greater risk of symptoms returning). What happened to my daughter was rare, and the symptoms she did have were mostly mild.
There are always risks and benefits with any medical procedure, but generally speaking, IOFC are usually pretty safe and they can free you from having to avoid foods and improve your quality of life. Unless you have symptoms following a passed challenge, I wouldn't worry about the rare possibility of redevelopment ... but I understand that this might be easier said than done, especially with everything that you have been through ... some counseling might help with the stress you are feeling.
Best wishes.
Posted by spacecanada
- December 21, 2017, 10:23:37 PMThis is my husband's biggest concern about the possibility of me doing a food challenge - that I will pass the IOFC and then have a reaction at home when reintroducing the food, or developing the allergy again, especially since my allergies don't appear on tests. I read through some of the articles linked in here and had some questions:
- In the experience of members here, would an allergist increase the final dose of an IOFC if a patient requested it? To make the final dose, or total combined amount allergen eaten in the challenge, close to what might be considered a normal dose for an average person. Or, should that already be best practice? (My challenge would be for potato, which could be a very large 'normal' dose when considering eating a whole jacket potato as a dinner, for example.)
- How long did it take people here to redevelop their allergy once they passed an IOFC? Is the timeframe fairly consistent, or is it all over the place? (Just curious if there's a point where one could successfully declare the risk of redevelopment unlikely.)
I'm trying to be as level-headed about this as I can, without freaking out too much (online, anyway). I tried looking for a thread on IOFC questions alone but couldn't find one.
- In the experience of members here, would an allergist increase the final dose of an IOFC if a patient requested it? To make the final dose, or total combined amount allergen eaten in the challenge, close to what might be considered a normal dose for an average person. Or, should that already be best practice? (My challenge would be for potato, which could be a very large 'normal' dose when considering eating a whole jacket potato as a dinner, for example.)
- How long did it take people here to redevelop their allergy once they passed an IOFC? Is the timeframe fairly consistent, or is it all over the place? (Just curious if there's a point where one could successfully declare the risk of redevelopment unlikely.)
I'm trying to be as level-headed about this as I can, without freaking out too much (online, anyway). I tried looking for a thread on IOFC questions alone but couldn't find one.
Posted by justme
- April 08, 2017, 10:13:18 PMUnfortunately the more people I meet in the allergy community the more I have to link to thread ☹️ I am glad I documented it, though.
Posted by PurpleCat
- April 28, 2016, 07:30:58 AMI can relate to both of those symptoms. They don't happen to my DD for baked egg, only direct egg.
Even right now, DD does not want to be around when eggs are cooked. It's not an "I don't like the smell reaction, I believe it is a flight to safety reaction" I air out the house if I cook any for the boys.
Ditto for my DD with egg exposure and eczema....I could not believe what gorgeous skin DD had when egg left her diet!
I hope there is no other progression of symptoms for your DD.
Even right now, DD does not want to be around when eggs are cooked. It's not an "I don't like the smell reaction, I believe it is a flight to safety reaction" I air out the house if I cook any for the boys.
Ditto for my DD with egg exposure and eczema....I could not believe what gorgeous skin DD had when egg left her diet!
I hope there is no other progression of symptoms for your DD.
Posted by CMdeux
- April 27, 2016, 03:19:57 PMReally awful eczema. Her legs are a MESS.
We don't really know if it's egg or some combination of things, but the eczema hasn't been this bad since she was 8-12mo. She's also developing a fresh aversion to the smell of eggs cooking, which had gone away.
We don't really know if it's egg or some combination of things, but the eczema hasn't been this bad since she was 8-12mo. She's also developing a fresh aversion to the smell of eggs cooking, which had gone away.
Posted by PurpleCat
- April 27, 2016, 11:59:51 AMOh no! What kind of symptoms is she having?
Posted by CMdeux
- April 26, 2016, 11:27:27 AMYep-- to me, as well.
I'm really hoping that doesn't happen to DD, in fact, and it worries me-- she ate eggs more or less normally for a couple of months, but now her tolerance seems lower again.
I'm really hoping that doesn't happen to DD, in fact, and it worries me-- she ate eggs more or less normally for a couple of months, but now her tolerance seems lower again.
Posted by LinksEtc
- April 26, 2016, 08:59:51 AMQuote from: PurpleCat on April 26, 2016, 07:22:42 AM
Then she ate eggs at home for awhile, then some stomach issues started to pop up but the allergist did not think much of them, and then DD had an unexpected reaction to direct egg and at that time her blood work numbers for egg were back up.
For DD, I am not afraid of doing any other food challenge except egg. I even reluctantly agree to do pecan at home....which after the stress of the clam challenge failure at home is a big step for me.
Last year the allergist said lets do a challenge for egg but won't discuss our fears or concerns or even speculate why or what may have happened. Dismissing history is a big red flag.
Responding to you and thinking about this thread has given me some clarity....the only way I can agree for DD to do another egg challenge will be if the allergist takes into account and discusses with both DD and I, DD's egg allergy history and how a new challenge will be done and how she will follow up with DD differently.
What you said totally makes sense to me.
Posted by PurpleCat
- April 26, 2016, 07:22:42 AMQuote from: LinksEtc on April 09, 2016, 10:36:55 PMQuote from: CMdeux on April 09, 2016, 01:55:48 PM
Something, though-- they rely upon assumptions and tend not to question their own beliefs and biases. They EXPECT that the "rare" is instead the "impossible."
Yes, exactly.
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The language that I would prefer to hear on the webinars would be something like this:Quote
Although it is very rare, it is possible to experience allergic symptoms following a passed challenge. If this does occur, you should let your allergist know. They will be able to work with you to develop a medical care plan that takes into account your personal risk factors and medical history. You may be advised to continue carrying epinephrine and a FAAP/ECP. In some cases, the allergen dose may have to be lowered. In other cases, going back to strict allergen avoidance may be necessary. It is also possible that your allergist might request that you come back in for another OFC. The important thing is that you and your allergist should work closely together to decide what the next step should be.
That statement you wrote speaks to me as how our outcome may have been different.
DD's shrimp and coconut challenges were clear passes and she eats both of those foods now. Symptom free! I do like our allergist and appreciate her extensive knowledge.
With Egg, the challenge was a clear pass. I watched DD eat first yolk and then egg white without any symptoms, other than our nerves. She had been safely eating baked egg for 3 months.
Then she ate eggs at home for awhile, then some stomach issues started to pop up but the allergist did not think much of them, and then DD had an unexpected reaction to direct egg and at that time her blood work numbers for egg were back up.
For DD, I am not afraid of doing any other food challenge except egg. I even reluctantly agree to do pecan at home....which after the stress of the clam challenge failure at home is a big step for me.
Last year the allergist said lets do a challenge for egg but won't discuss our fears or concerns or even speculate why or what may have happened. Dismissing history is a big red flag.
Responding to you and thinking about this thread has given me some clarity....the only way I can agree for DD to do another egg challenge will be if the allergist takes into account and discusses with both DD and I, DD's egg allergy history and how a new challenge will be done and how she will follow up with DD differently.
Posted by LinksEtc
- April 25, 2016, 12:11:12 PMQuote from: PurpleCat on April 25, 2016, 08:13:21 AM
and I worry now with DD's egg numbers down again that the allergist will push re-challenging egg.....which was a clear pass, and then returned for DD in direct egg form (she can tolerate baked).
Neither she nor I want to go there.
We would never trust the results of another pass.
I'm actually still a big fan of challenges. Most of the time, they are accurate and they let you know whether a person is allergic to the food or not.
In fact, we are scheduled for another OFC in 2017.
The reason that I'm not nervous about another challenge is that I have a lot of confidence & trust in the professionals where we are now. I don't think that they would label symptoms as anxiety without making sure 1st ... and if there was anxiety, I have trust that they would treat us kindly and try to help.
The way that I was treated after that other challenge was just wrong imo & it should never happen to another family again ... it hurt me deeply ... & in my opinion (which could be wrong), it was a dangerous situation for dd ... which is why I am not happy with the wording of those webinars & I think that some allergists need to handle post-challenge care better.
Posted by PurpleCat
- April 25, 2016, 08:13:21 AMand I worry now with DD's egg numbers down again that the allergist will push re-challenging egg.....which was a clear pass, and then returned for DD in direct egg form (she can tolerate baked).
Neither she nor I want to go there.
We would never trust the results of another pass.
Neither she nor I want to go there.
We would never trust the results of another pass.
Posted by CMdeux
- April 24, 2016, 11:56:00 AMI'd like to second that request-- with the additional note that there are quite a handful of us who are, or have been, part of this particular online community who have experienced this passed-challenge-but-apparently-it-doesn't-hold-in-the-real-world thing. Our allergist worries about this, even-- he ALWAYS checks in after a passed challenge to see how things are going, and it's (IMO) a reason why he's not entirely sure that OIT is ready for general clinical use.