Allergy Shmallergy

Simplifying life for families with food allergies.

Food Allergy Treatment: OIT 101 January 21, 2020

[DISCLAIMER: Oral Immunotherapy is always conducted under the direction and supervision of a medical doctor.  It is an individualized plan.  Please talk to your doctor if you’re interested in learning more about OIT.  This is not an endorsement of OIT and is for informational purposes only.]

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UPDATE:  Palforzia was approved by the FDA in late January 2020 and is use today.  If you choose to pursue OIT, discuss whether Palforzia or other OIT programs are best for you with your healthcare provider.

While the U.S. Food and Drug Administration considers whether to approve Aimmune’s  Palforzia – possibly the first drug to be approved for peanut allergy, let’s get an overview of OIT.

Oral immunotherapy isn’t a new concept.  In fact, it has been discussed in medical journals for over a century and used for decades to help patients desensitize to environmental and drug allergies as well as build a tolerance to venom.  OIT has been studied in food allergy (mostly for peanut allergy) for the last 20 years and been in medical trials for just over 10 years.

Following a successful presentation to the U.S. FDA in September 2019, we stand on the cusp of seeing the first oral immunotherapy drug (Palforzia) approved.  Until now, food allergic patients have had no other option but to avoid their allergen for the life of their allergy.  FDA-approved drugs, like Palforzia, and other therapies would offer some patients progress, giving them much-needed treatment options to increase tolerance and protect them from life-threatening reactions for the very first time.

What is OIT?

Oral immunotherapy – or OIT – is a treatment option for some with food allergies that is managed and is strictly monitored by a patient’s allergist.  [NOTE: OIT and desensitization should ONLY be done under medical supervision and with guidance from your personal doctor.]

Oral immunotherapy is a safeguard.  It is a therapy intended to protect patients should they accidentally be exposed to their allergen.  It can also bolster a patient and caregiver’s mental health by reducing anxiety and stress caused by the heavy burden of food allergy management and unexpected, potentially life-threatening reactions.

Immunotherapy (whether oral, epicutaneous, sublingual or otherwise) is a treatment option to help patients tolerate a higher level of allergenic protein and is NOT a cure for food allergies.

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Photo by cottonbro on Pexels.com

How does it work?

OIT is a form of desensitization – that is, the process of retraining a patient’s body to tolerate a larger amount of the allergen to which they are allergic without causing a reaction.

For example, if a patient is allergic to peanuts, a doctor would give a patient an amount of peanut protein (beginning with a tiny dose of 1/100th of a peanut or three milligrams). That dose is gradually increased until that patient can safely eat a level of protein that would otherwise cause a reaction.  The goal of many OIT programs is to get the patient to tolerate at least 600 mg of peanut protein (or the equivalent of 2 peanuts), although these goals vary from practice to practice and patient to patient.

milk OIT

Dairy OIT solution – photo by OakleyOriginals via Flickr (CC BY 2.0)

Is OIT only for those with a peanut allergy?

Although the FDA is currently only reviewing a drug aimed at peanut allergy, oral immunotherapy trials are available for those who suffer from other food allergies as well.

How effective is oral immunotherapy?  Does it work?

Peanut, egg and milk OIT has been studied most closely and shown to desensitize 60-80% of participants.  Studies related to peanut oral immunotherapy specifically have between 85-90% success rates.  Other food allergens have not been studied as thoroughly and initial results show they may not be as effective at increasing a patient’s tolerance.  These  numbers are the result of oral challenges and not real-world accidental exposure.

Can anyone pursue oral immunotherapy?

If you’re interested in OIT, it’s best to speak with your doctor.  The process of going through OIT can be demanding and does not fit every lifestyle.  And, there are certain food allergy-related conditions (such as eosinophilic esophagitis – EOE – and others) that might make immunotherapy more difficult.

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Photo by Negative Space on Pexels.com

Consider this…

There are a few side effects that are possible while undergoing OIT.  The most common issue patient’s experience is gastrointestinal (reflux, cramping and vomiting), followed by oral itching, hives, and wheezing.  The risk for anaphylaxis is higher for those going through immunotherapy due to a patient’s regular exposure to their allergen.   Patients also risk  developing/inciting EOE – which often goes away when therapy discontinues.

The process of oral immunotherapy can be rigorous.  It requires an oral challenge, frequent doctor’s visits, and a comfort with using an epinephrine auto-injector.  Therapy also puts some restrictions on the life of patients as a precaution. For example, after dosing patients are required to rest to keep their body temperatures steady for 2 to 4 hours. And, daily monitoring is required.

Patients often need to take a daily or weekly maintenance dose indefinitely to keep up their tolerance.

Finally…

Oral immunotherapy is a much-needed treatment options for those seeking some protection and relief from the demands of living with food allergies.  Safeguarding patients against cross-contamination and accidental exposure is important for a patient’s physical as well as mental well-being.  But OIT is not for everyone.  If you’re interested, talk to your doctor about OIT and see if it’s a good fit for your lifestyle.

For more information, please read:

The Current State of Oral Immunotherapy from AAAAI

 

Armed with Words: Teens and Food Allergies October 25, 2017

Ah… the teenage years!  Although my son is only 12 now, I can feel them coming on and am seeing a preview of the food allergy challenges we’ll be facing for the foreseeable future.

 

Teens and young adults with food allergies are at the greatest risk of having a reaction.  Risk taking behavior is all part of the teenage brain.  And when hormone changes, the desire to fit in and peer pressure are combined with food allergies, innocent situations can turn deadly.

 

Studies show that preadolescents and teens – who typically do not want to draw attention to themselves – shy away from mentioning their food allergies and often intentionally leave their emergency medication at home.

 

What can parents do?  Continue talking to your teen about his or her food allergies and the new situations they face.  Play out various scenarios and involve them in the problem solving.  Importantly, arm them with the language to use to avoid putting themselves at risk.  If we can give them some ways to deal with their food allergies in a smooth, off-handed manner, they may be more likely to self-advocate, speaking up when it matters.

 

Share your child’s go-to lines and we’ll include them below.

 

Practice these.  Make them your own: deliver the lines with humor, sarcasm, be nonchalant or matter-of-fact.  However you decide,  just speak up!

 

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Situation:  (Friends are at a restaurant/cafeteria/movie theater hanging out)  Mmm… Try some.  It’s so good and I think it’s nut-free.  Here have some!

Straightforward Reply:  That does look good.  But, I’m allergic to nuts.  I’d love to try it if it’s safe- is there an ingredient list?

Alternative Reply:  That’s a great looking [brownie, cookie, dumpling…etc].  I think I’m going to pass.  But, thanks for offering!
These approaches work because they alert your friends that you have an allergy and simply can’t eat things that aren’t safe.  But if they are persistent:

Situation Progresses:  Come on!  Have one little bite!!!

Reply: (Distract)  No chance.  But have you tried the donuts [or insert food – either at the location or elsewhere]?  They’re insane!

Reply:  A little bite can make me really sick.  I’d rather hang at this party/football game/movie than head to the hospital.  I’m good!

 

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Situation:  Your teen is worried about bringing his/her epinephrine auto-injectors out with their friends.

Reply:  Hey guys, I have my auto-injectors in this bag just in case anything happens.  Do you want to drop your phone or sweatshirt in here too?  Might as well fill it up!

Solution:  Carry two Auvi-Qs!  Each Auvi-Q is about the size of a deck of cards and can fit in most pockets.  You DO need to carry two – if necessary, place them in a jacket pocket.  And, let a trusted friend know they are there.

 

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Situation:  You’re at a restaurant/food court/concession stand with your friends. You need to ask several food allergy-related questions, but you’re embarrassed.

Reply: (to friends) I have to ask the manager a few questions.  I’ll be right back.
In this scenario, you can ask questions about ingredients without drawing attention to yourself.  Don’t miss the chance to eat safely and without worry or you’ll miss having fun with your friends!

Reply:  (Before you order… to your friends)  Hey, guys.  I’m going to need to ask a bunch of food allergy questions.  Do you want to order first?

OR:

Reply: (Before you order… to your friends)   Hey, guys.  I’m going to need to ask a bunch of food allergy questions.  Just keep talking so I don’t get nervous.  (Jokingly) You know I have stage fright!

 

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Situation:  You’re at your friend’s house.  Your friend’s mom offers to get you “something to eat.”  “I’ll grab you guys a snack!” she says, with no further description.

Reply:  I have a food allergy.  Do you have a piece of fruit I could eat?

OR:

Reply:  I have food allergies.  If you don’t mind, can I read some ingredient labels to see what’s safe for me?

OR:

Reply:  Thank you for offering, but I have a food allergy.   I’m okay for now.
OR:
I brought my own snack – all I need is a bowl/spoon/fork!

Parents love kids who take charge of themselves and are forthcoming with important information.  Telling an adult on-site that you have a food allergy gives you another layer of protection – a second set of eyes and someone to help if you feel you’re having a reaction.

Situation: A boy/girl you’ve been eyeing just asked you to go out for ice cream – but you have concerns about your food allergies at ice cream shops.  

Solution:  Find a coffee shop or restaurant with a similar fun feel that you know is safe and suggest you go there to hang out.

Solution:  Try an activity-based date.  Bowling, mini-golf, watching your school’s football game, seeing a band play, etc are sure to bring the fun without too much worry about food.

Reply:  I’m actually allergic to dairy/nuts/peanuts.  Would you mind if we tried this new frozen yogurt shop?  I’ve been dying to try their sorbet flavors!
Mentioning your allergies right away isn’t a deal breaker; it’s a way to ensure that you’ll feel relaxed on your date.  And when you’re more relaxed, you’re more likely to have fun!

 

Managing Food Allergy Anxiety April 20, 2017

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According to a study out of the Children’s Mercy Hospital in Kansas City, Missouri, children with food allergies are more likely to experience anxiety and depression than their non-allergic peers.  And, the more foods they are allergic to, the more likely they are to internalize those feelings of helplessness and vulnerability.

 

How does anxiety present itself in children?  What are the signs parents should look for?

Because children often lack the ability to identify the source of their stress and articulate their feelings clearly, anxiety tends to present in a number of different ways.  Some of these include:

  • stomach aches
  • headaches
  • clinging
  • avoidance: not wanting to go to events or school
  • changes in sleep and eating
  • tearfulness
  • daily persistent worries

 

Periods in a child’s development also make them more susceptible to anxious feelings; such as ages 7-10 when kids are old enough to understand serious health risks but are still too young to manage their fears efficiently.  Similarly, pre-adolescents (tweens ages 10-14) typically develop an awareness of germs, disasters and things that could possibly go wrong, making this age range primed for feelings of nervousness and worry.

 

What can parents do to help their children manage their anxiety?

  1. First and foremost, parents need to model calm. (More on that below…)
  2. When speaking about their food allergies, frame risk in a positive way.  For example, “reading ingredient labels, asking questions and carrying your epinephrine will help keep you safe;” “eating peanuts may make you feel sick;” “having regular cheese can make it hard for you to swallow and breathe…”.  DO NOT talk to kids about death, dying or their mortality.
  3. Give them words for their emotions so that they can express themselves and relieve some of that private, pent-up worry.
  4. Validate their feelings.  Anxiety about food allergies can spill over into more generalized anxiety.  Their fears and perspectives are real to them.
  5. Tell your child a story about a time you had anxiety.  And, if possible, maybe something you did to overcome it!
  6. Explain to your child that everyone experiences some level of anxiety.  It’s a normal part of being human.  But when it becomes overwhelming we need to talk about it to help let it go.
  7. Encourage your daughter or son to socialize with friends and family.  Being with others is a great distraction and reminds them of the support that surrounds them.
  8. Teach them skills to relieve stress, such as breathing techniques, getting out to exercise, or compartmentalizing the discussion of food allergy worries to 10 minutes a day and then moving on.  These are important techniques for life!
  9. Reassure your child that they are in good hands, both at home AND away, like at school, at grandma’s, etc.  Kids need to know they are secure and that those in charge know what they’re doing.
  10. Empower them!  Practice what to say to their friends, family, teachers, and restaurant staff about their food allergies.  Teach them what to do in case they suspect they’re having an allergic reaction.  Work together to read ingredient labels and manufacturing warnings.  Allow them to ask questions at the doctor’s office. The more capable they feel, the more in control they will be!

 

What about us?  

As food allergy parents, we – too – are familiar with the stress and anxiety related to the management and realities of food allergies.  It is as, OR MORE, important that we manage our own anxious feelings as parents so that we can be a model of calm and security for our kids.

 

Anxiety – in all forms – clouds good decision-making (it’s science!).  Keeping worries in check allows us to be more effective parents by approaching decisions and assessing situations with cautiousness and calm.

 

When adults feel out of control, they tend to overcompensate.  This primal need to protect our children kicks into overdrive, leaving parents spinning their wheels in a world they cannot sanitize or make safe enough.

 

Kids tend to absorb the perspective of their parents and they can become frightened if adults around them are very stressed or scared.  Therefore, it’s critical for parents to adopt a healthy attitude towards food, food allergies and the greater world to help their children manage their own food allergies.

 

What can we do to keep ourselves calm?

  1. Find support.  Connect with other food allergy parents or spend time with understanding friends.  Socializing reminds us that we’re not alone with our concerns.  Feel free to use Allergy Shmallergy’s Facebook page to post questions or connect with like-minded parents.
  2. Arm yourself with information.  Familiarize yourself with food labeling laws, causes and symptoms of a reaction, and your emergency action plan.  If you can, learn to cook!  In short, empower yourself!
  3. Adopt simple solutions for your food allergy hurdles.  Resist the pressure to be the perfect baker, for example, and focus on surrounding your child with LOVE.
  4. Trust in others who’ve shown understanding towards food allergies.  A lot of food allergy parents only feel their child is safe when he or she in in their total control.  It’s important to let go a little and let others help.  If you’re at a friend’s house, let the host find a safe snack  – you can still approve the ingredient list, but it will give you a window into their decision-making abilities.  Let your child’s teacher become his or her food allergy-ally while they’re at school.  Every child needs a village.  More importantly, every parent needs one too.
  5. Prepare and approach food-related situations with CAUTION without assuming CATASTROPHE.
  6. Get out and exercise.  Talk a nature walk.  Have a date night.  Be sure to find outlets and activities that bring you joy.

 

 

 

 

 
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