Food challenges at home

[CautiousFoodDetective]

Hello everyone!

Our son has quite a variety of food allergies. Some are standard (eggs, milk etc), some not so much (!) (chicken, pineapples, beef). His reactions can be quite severe, and our paediatrician has agreed to do some food challenges in the hospital, but there are others that they want done at home.


We're still very anxious about trying ANYTHING new given his allergies seem so random (to us at least). Our worries are that anything new could be just as severe as other foods he's allergic to. Has anyone got any tips on how to try a food challenge at home?

[hezzier]

How old is your son?  Do you have an epi pen (or two) on hand?  How close to the hospital do you live or how fast can the ambulance get to you?  Do your ambulances have epinephrine on board?  What do they want you to try at home?  In the past, has he had a reaction to a new food? If yes, on the first try or did he have it a couple times and then react?

These are just some of the questions I had after reading your post.

[PurpleCat]

Same questions as above.  Have you looked at foods that are related to each other and do you see any patterns? 

When you say the reactions are severe, my mind assumes anaphylaxis.  Is that the case?  If not, how do you define severe?

In our situation, we refused to test any foods at home that caused anaphylaxis. 

We did try foods at home when the past reactions were typical to oral allergy syndrome.  We did try to test foods at home that were GI specific only reactions.  GI and any other symptom, nope, doctor's office for those.

Our child at the time we were figuring this all out also had asthma (which for her gets exasperated during anaphylaxis) and significant eczema. She often presented with random hives as well.

If we did try at home, I made sure someone else was home to tend to the siblings if we had to abruptly leave via ambulance and also so I could be free to listen and observe.  I made sure it was during office hours for our allergist and nurses so I could call with questions not needing 911. And when I could, I had my mom or my sister come, they are both nurses. I had pens to circle any hives and noted if they got larger and how much bigger and how long it took to do that.  As well as how long the hives lasted.

I had a plan from our allergist about when and how to address any signs of reaction.  Be that the epi pen, Benedryl and any topical creams for hives.  That was why being able to call in was so helpful.  I could talk to a nurse and she would advise any deviations to the plan.

I don't know the age of your child, but having a plan for crafts, board games, coloring or other quiet activities was also something I did so that we could focus on something else, at least for my kiddo so she did not feel like she was under a microscope while I stared at her.

We have quite a few members with different experiences.  This is just mine.

[CautiousFoodDetective]

Wow, thank you for the replies!

Our son is 4. When he first started weaning we discovered his milk allergy (instantly vomiting for hours!) and over time we started to eliminate other foods that were causing him issues (basically all legumes!). His most severe reaction was to chicken, and we had that allergy confirmed through blood tests and skin prick tests (the doctors wanted to do a food challenge for that, but backed down when we explained that observing his reaction at home should surely count as a "food challenge").

Unfortunately, we have been told that he doesn't qualify for an epi-pen because he hasn't been rushed to hospital due to a reaction. This feels like a "chicken and egg" situation to me (he's allergic to egg too!).

The chicken and milk allergies are his two most severe, but because the chicken allergy was so far out of left field (the doctor told us that he'd only ever seen one case of a chicken allergy in his life, so he didn't believe our son was allergic to it too), and added to that he has mild reactions to other things such as beef, latex, pineapple, oats, melons - it feels very difficult to be confident introducing new foods. The foods he is allergic to feel so random.

So this randomness creates anxiety with us introducing new foods. (If he's allergic to chicken, will he be allergic to turkey, duck??).

We have done skin prick tests which have helped guide *some* of the food challenges (any large reaction will be done in hospital), but it's such a scary world trying to navigate this. Even a mild reaction had our boy up at night scratching himself raw, unable to sleep.

Luckily he's started to outgrow some of the allergies, soya being the biggest one he's started to be okay with.

[CautiousFoodDetective]

Apologies, I realise I've not answered all the questions you posted!

How close to the hospital do you live or how fast can the ambulance get to you?

We're about a 15-20 minute drive to a hospital.

Do your ambulances have epinephrine on board?

Yes.

In the past, has he had a reaction to a new food? If yes, on the first try or did he have it a couple times and then react?

Yes, he's reacted to new food a lot. It took a lot of detective work to discover what foods were causing reactions. We had to eliminate almost everything and build our way back up. Before we started weaning him, he was reacting to the breast milk as well (again, doctors were sceptical about this). This is all in hindsight, though. We had no idea at that time that foods my partner was eating, would cause a reaction through the milk.

[hezzier]

Wait...so your son has tested positive to having a food allergy by skin prick and blood test AND he doesn't qualify for an epi pen?  What country are you in?  Exactly who is determining that he is "not qualified"...the doctor?  If yes, then it's time to get a new doctor.  If it's your health insurance company, I would challenge that with a letter from the doctor stating that your son needs an epi pen.  If it's the country, then I'm not sure where to go with this other than challenge that rule with a letter from the doctor stating he needs it.

I personally would not be agreeing to any kind of food challenge at home if there is no epi pen available to use in case he reacts.

What are his reactions to pineapple and melon?  Does he have any environmental allergies?  Grass, weeds, tree pollen?

[CautiousFoodDetective]

We're in the UK. We've asked a few times in various departments, but no luck. They have said he needs to have a reaction so serious he is hospitalised, before they'll give an epi pen. It's a horribly backwards way of doing things, almost like we're being punished for keeping him safe, if that makes sense.

For pineapple and melon - he had hives round his mouth, upset stomach and itching all over. Pineapple was worse than the melon. Our plan is to try him on those every 6 months to see how he gets on. The reaction isn't TOO bad, so we're comfortably doing that at home.

We did one of those blood tests kits you send through the mail, and there weren't any environmental allergies, but it did suggest an allergy to dog hair and saliva, which we noticed ourselves with some dogs (he loves dogs, and can't resist saying hello when he sees one). So we're lucky that pollen and cut grass isn't also causing issues.

[PurpleCat]

I do not understand why the doctor is not prescribing an epi pen or one of the other epinephrine injectors.  Is the doctor an allergist?  do you have access to an allergist?  a pediatric allergist?

My DD reacted to pineapple and melon particularly during ragweed season.  They are botanically related and her "cup is full" during peak pollen.

One year we discovered melon the hard way.  She was little and had always eaten cantaloupe.  Same melon, 2 meals later and she spit it out and said my chest is squeezing! Hives within minutes. Scared the pants off me!  Some of her tree nut allergies were also botanically related to tree pollen.

In her case, in high school and college she had allergy shots for grasses, a variety of trees, dogs and cats.  Over time, it totally helped and she no longer does them.  She is a Veterinarian!  (although she can never work with horses, that allergy is severe and never improved).  She can tolerate some of the tree nuts without experiencing anaphylaxis.

Allergies like these are not easy to manage and figure out on your own.  Our pediatrician was not good with them but she ended up working well with the allergist once the relationship was established.

You are close to the hospital, but still, UGH!  I would myself be in the parking lot at the emergency room if I was forced to test foods myself. 

I do not know how medical care works in the UK.  Is there an allergy organization you can find to help with information and guidance.  We have FARE (Food Allergy Research and Education) in the US. I got some very good information from that organization when we were starting out. I just googled and found this:  Allergy UK – Helpline (01322 619898).  Maybe a resource for you?

[hedgehog]

Is anyone who is still here in touch with the member we had who is in the UK?  I don't remember her name, and I haven't see her here in years.  But maybe she would have some knowledge of the epi-pen situation?

[hezzier]

I was thinking the same thing HH.  I am friends with her on FB so I can reach out and see if I can share her contact info that way.

[hezzier]

We're in the UK. We've asked a few times in various departments, but no luck. They have said he needs to have a reaction so serious he is hospitalised, before they'll give an epi pen. It's a horribly backwards way of doing things, almost like we're being punished for keeping him safe, if that makes sense.

For pineapple and melon - he had hives round his mouth, upset stomach and itching all over. Pineapple was worse than the melon. Our plan is to try him on those every 6 months to see how he gets on. The reaction isn't TOO bad, so we're comfortably doing that at home.

We did one of those blood tests kits you send through the mail, and there weren't any environmental allergies, but it did suggest an allergy to dog hair and saliva, which we noticed ourselves with some dogs (he loves dogs, and can't resist saying hello when he sees one). So we're lucky that pollen and cut grass isn't also causing issues.

So first thing, you definitely need to be seeing an allergist not just a regular doctor. 

Second, blood test kit through the mail is not reliable.  It needs to be ordered by an allergist and blood samples taken at a lab. 

Third, the pineapple and melon could absolutely be cross reactivity to pollen or latex.  An allergist would be able to sift out what's a true allergy vs oral allergy syndrome or cross reactivity.

Next question...are you on Facebook?  I'm going to reach out to one of our members in the UK who has grown children and has been dealing with allergies all of their lives.  She is extremely knowledgeable and will know  how to work the UK Health system.