In our facebook supports groups, we’ve had a few misunderstandings regarding pre-OIT v. food challenge (the TEST).
Under the care of a board certified allergist who specializes in OIT:
OIT starts in nearly invisible amounts, MICRO grams, and builds up during the day to find an acceptable, NON-reaction, spot where the doctor feels you could go home with that amount and dose for the next week or two. WITHOUT REACTIONS. If you have side-effects or reactions, you need to call the office ASAP for instructions and perhaps modified dosing amounts.
Safety Note: If an anaphylactic reaction occurs, which is rare but possible, you would treat the symptoms, epi and call 911. Then call the office once the emergency is handled. Sometimes reactions have escalated quickly during an office call and the doctors have talked parents through the administration of epi. The safest thing to do is treat the symptoms as you would in any food allergy reaction.
After completion of the OIT increase phase, some OIT allergists will request a food challenge– “Graduation.” “Passed Challenges after OIT increases.” Some OIT allergists do not require it. Some patients do not get as high as an amount they would challenge but you can still have “Program Completion” celebrations. Example: Child makes it to 5 peanuts and simply cannot proceed due to taste, tolerance, attitude, etc… You can still CELEBRATE their achievement– ABSOLUTELY!!! You don’t have to default to made-up-member vocabulary that they are “only ‘biteproof’ “. No need. And not necessarily accurate. In other countries, that could be the LIMIT anyway. And they are still able to eat freely (versus “free-eating” which is made up vocabulary too) if the doctor gives the OK after a series of introductions (perhaps “challenges”).
All that OIT stuff aside…………………………………….
Scenario: I’m pretty sure my child is allergic to XXXXX.
A food challenge is a TEST to determine if a patient is allergic to a particular ingredient. If so, that ingredient is termed “allergen.” These challenges can start with touching an almond to the lip of a patient to see what happens? Scratching the skin and placing a bit of the food on that spot to see what happens?
TO SEE WHAT HAPPENS is KEY here. THEY HAVE NO CLUE. They can make an expert guess based on tests and history of reactions, but NO ONE KNOWS what will happen until the food is actually ingested. Will they tolerate or not?
Different doctors do different challenges.
A BAKED CHALLENGE is using baked food products such as a muffin to INTRODUCE the ingredient. Now, if they are truly allergic, there will be some sort of reaction. And NO ONE KNOWS based on an IgE if that will be a mild or severe reaction. IgEs of less than 1 (one) have resulted in anaphylactic reactions. IgEs of over 80 have resulted in the patient PASSING and being able to eat whatever they’d like in however many quantities. It’s a crazy science.
OIT allergists do not require a food challenge TEST to start OIT but they do not want to treat you needlessly.
SKIN TESTS are not 100% predictive if a patient can safely consume the ingredient. Eli has been in OIT for 7 years. If you skin test him, he might show a hive. But he eats 8 peanuts safely every day. Someone said, Dr. Nadeau said, “The skin is the last organ to remember the allergy.”
Eli’s skin test was negative btw. He has/had a 2 minute window to full blown anaphylaxis. We could have killed him based on the result of that test. The Children’s Hospital said, “Go ahead! He’s not allergic.” Even though he had had 2 serious reactions which prompted blood testing (off the charts) and skin tests. A private allergist tested his skin again and saw a definite positive reaction.
If you are waiting and watching and hoping that your child will naturally OUTGROW the allergy, you need to have this conversation with a BOARD CERTIFIED ALLERGIST who is WILLING AND ABLE to do OIT if they do not outgrow. The best source of information is going STRAIGHT to the doctor who is going to treat them all the way through.
Example: A dentist can only tell you so much about what the orthodontist is going to do. The orthodontist can only tell you so much about what the oral surgeon is going to do. When my daughter broke her jaw, I needed all three because I was hysterical. Plus a dietitian.
When my son started reacting to peanuts, our well meaning pediatrician told us to “keep trying”– and I could have killed him TWICE!!! When the Children’s Hospital allergist told us “He’s not allergic. These things happen,” I did not believe him. I went to a private allergist, recommended by our pediatrician, (who felt awful btw), and they determined through their own component blood and skin tests that he was indeed anaphylactic. The lab created anaphylaxis in his blood. There was no question.
That allergist told us about the Duke study and that they were having fantastic results. And when I came back to our allergist with options for treatment– Dr. Wasserman in TX or any of the Duke researchers I was trying to talk out of leaving their jobs and opening a private practice closer to our house, HE is the one who HELPED US determine our best options. But he wouldn’t DO OIT. He still doesn’t do OIT, but one of his partners does now.
See how each doctor can work together to help you. Our local allergist does all our tests and we wouldn’t hesitate to let them do a food challenge if that’s what needed to be done. He would speak with our OIT allergist and they would work that out.
So you have TESTING, TREATMENT and ROLES of each physician to consider. First and foremost, the OIT allergist who will be treating you or your child. No one’s feelings get hurt in this process. Doctors are more than capable of recognizing and appreciating a specialist with any field of medicine or procedure. If they are not, they are not in your loop. You can still update them but if they are not willing to work on your TEAM, they get to receive updates only.
My best suggestion is to keep a notebook with your information, the source, any questions you need to ask the specialist and records of sharing that information with the other doctors involved. Every increase Eli took, I sent an email to our local allergist, the local allergist I wanted to offer OIT first, and our Children’s Hospital Head of Ped. AAI so everyone would LEARN and know what was happening. Both allergy offices are now offering OIT. The CCH is offering OIT studies now.
Gather and share your information. Be careful about making up vocabulary even though it’s easier for a post-sake. It’s not always accurate in the medical arena.
KNOW THE DIFFERENCE between pre-OIT challenge (so you don’t treat unnecessarily), OIT, post-OIT challenge (if desired or required by specialist), basic food challenge TEST (to determine if you HAVE an allergy).
And then what type of a food challenge TEST are you agreeing to? Baked protocols for OIT have “miserable” results according to our doctors. But as a late-stage food challenge option, a piece of a muffin may not be so detrimental. I’m not a doctor, but experience has shown us that starting a food challenge TEST to see if you are allergic to milk or egg or flour, with a piece of a muffin, isn’t always the best first option. At the BEGINNING of a challenge, the amount of protein must be CONTROLLED. If not, it’s basically like an accidental exposure but on purpose.
THESE ARE ABSOLUTELY DOCTOR QUESTIONS. Please see our website oit101.org for the OIT Provider Listings. Give them a call. You might have to fax medical records and schedule a phone or in person consult. Then share your information here so we can all compare and learn.
It’s a course: OIT101. Some will enroll. Some will add/drop– especially if you pass challenges and do not need treatment.