Food Allergy Counseling

Food Allergy Counseling
Sloane Miller, Food Allergy Counselor (Picture © Noel Malcolm 2013)

Friday, June 24, 2011

MTV, I'm Allergic to Everything

**UPDATED with online show link.**

MTV’s True Life series decided to cover food allergies. [Disclosure: they came to me in October last year asking if I could recommend any teens with food allergies for this show; I sent them to FAAN’s Teen program.] The show aired last night. You will be able to watch it online now.

First off, many thanks to the brave Raelyn and Zeke –these are the high schoolers MTV followed. They and their families were generous enough to allow us in to their lives, their struggles, their concerns and their hopes. Thank you again. Secondly, as a reality show, this program pulls for the extremes and they picked two atypical examples of food allergic disease: Zeke has Eosinophilic Esophagitis and Raelyn has idiopathic anahylaxis.

Eosinophilic Esophagitis or EE (or EoE) is, accrording to the University of Michigan: "a chronic disorder of the digestive system in which large numbers of a particular type of white blood cell called eosinophils are present in the esophagus. the esophagus is the tube that carries food from the mouth to the stomach. Eosinophils are an important part of the immune system and play a role in fighting infection. This condition is characterized by vomiting, stomach or chest pain, failure to thrive (particularly in children), and difficulty swallowing."

Eosinophilic Esophagitis is a serious condition that is under the rubric of allergic disease but not a classic food allergy. However, Zeke’s segments follow a relatively typical medically approved path: visits to his board certified allergist in the hospital for scratch and skin testing (and resultant reactions), food challenges in the hospital and under supervision, endoscopy and biopsy of the esophagus, and more food trails after the all clear sign. We see him being bullied and we see him struggling to have a normal life and diet but we also see him following a well-worn and safe medical path to determine how to take small safe steps forward.

Raelyn is given a diagnosis of idiopathic anaphylaxis and in the world of food allergy that is a true gray zone. Idiopathic means that no cause can be determined for anaphylactic reactions. Raelyn’s struggle with this vague diagnosis is very real, as it her anxiety and her wish to be normal. In her segments, we see Raelyn meeting with one of the best allergists in the country: Dr Robert Wood. He tells her that her immune system is going haywire, her anaphylaxis reactions are not coming from an outside source but from within and then he mentions something about her stress levels and trying to control those. (These details are from memory, so they may be faulty.) We do not see her given a clear path toward management. And without a clear answer from the western medical community, Raelyn and her family do what many desperate patients do and turn to alternative methods and practitioners who claim to have the cure.

Bottom line: Right now, there is no cure for food allergies.

What follows is a typical scene of alternative treatment. Raelyn visits a chiropractor who says he can cure her of all of her food allergies. After a month of sessions, he tells her she can reintroduce foods to her diet. She attempts food challenges at home without medical supervision that go dramatically wrong, necessitating a call to 911 and hospital visit. It was disturbing to watch and no, she is not cured.

Did the show raise awareness about food allergies and what our community's families and teens deal with on a daily basis? Will it? I don’t know.

What is clear is that these two teenagers are working valiantly to have normal lives.

My wish? I wish Raelyn would have been given a clear direction from Dr. Wood about how proceed. (As this is a highly contrived reality show, we have no idea if there was medical follow up with Dr. Wood or any other board certified medical provider.) And I wish both teenagers and their families had more support around issues of anxiety and their diagnosis.

Did you see it? Tell me what you thought.

16 comments:

Heidi aka Brooklyn Allergy Mom said...

I watched this show with my family. My husband, who has mild food allergies, and 13 year-old daughter who has multiple anaphylactic food allergies. Raelyn was a wonderful young girl in search of answers. Who could blame her for looking to alternative treatments? For us, though when we have sought them, they have not provided a cure, as you said, there is no cure for food allergies.

Zeke is equally as valiant, playing a demanding sport, Hockey, while undergoing food challenges to see if he can add food back into his diet.

It was wonderful for my daughter to be able to see other young teens like herself who are living similar lives.

At the end of the show, I really did want to see more. I wanted to see Dr. Wood counsel Raelyn on her new approach to her health.

And of course, I want Raelyn to come and visit me so I can bake her safe foods! We always have lots of epi-pens in our house!

Lindsay said...

Although I truly respect Raelyn and Zeke for bravely putting their stories on camera, I'm not impressed with MTV's decision to put two extreme cases (IA and EE) instead of focusing on teens with a severe "typical" food allergy to a Top 8 allergen (or multiple food allergies without EE). The reason? Let's say you're a high school student with a life-threatening peanut allergy. Your friends, who watch MTV True Life, will see Raelyn's story, and think, "That doesn't happen to so-and-so," and could be dismissive of (or even question) the true severity of your peanut allergy. Make sense? In other words, I don't think this show helped the general food allergy community at all in raising awareness about the challenges we face every day. Although it showed prick testing, a food challenge, etc., the vast majority of us with life-threatening food allergies do not have similar conditions to Raelyn and Zeke. This will simply add to the confusion the general public has about food allergies. That being said, I wish those two teenagers the best and applaud their decisions to tell their stories. My issue is with MTV for sensationalizing...which, should I expect any different?

lil O's said...

I am a mom of 2 kids with EoE, just like Zeke. My 10yr old Jake, also has the severe food allergies(over 40), just like Zeke. For us, watching how he carefully managed his allergies, his food trials and his formula, was the best thing my Jake could have watched. Jake is gtube fed, because he wasn't able(at age 6) to drink enough formula to keep him alive. But we have gone through food trials the last 2 1/2yrs, lots of allergy testing, scopes and challenges. Jake now has approx 10 foods. He hopes, some day, to have enough safe foods to be able to stop his formula, just like Zeke. The bullying and how he handled it, was exactly life for these kids. They just want to be "normal" they just want to fit in. Jake has played tackle football the last 3yrs, gtube and all. He doesn't let this disease stop him, slow him down or win. It's kids like Zeke, that help kids like Jake. We have a new hero in our house. Thanks Zeke!!

Whitney said...

I missed the show last night, but I'm going to watch tonight. My almost 2 yr old has EoE. So, Zeke's case interests me. Eosinophilic disorders affect 1 in 2000, and that number is growing as foods allergies are. I am glad to see that MTV is bringing awareness to this disorder. The more awareness and education there is, the more compassionate people seem to be.

7cc01e2c-54ce-11e0-9959-000bcdcb471e said...

I was so disappointed last night! First, I was shocked that there was no clear plan of action given to Raelyn by her doctor. Was she ever even tested for food allergies? Yes, I know her dx, but perhaps if she were tested she would know some of her definitive triggers. Everytime I saw her eat gluten and dairy I would cringe, knowing what was coming. Also, that chiropractor didn't tell her to start food challenges, he said she still needed to wait. (I know there is no cure, I'm just saying...let's not blame the chiro here) the family and herself made an irresponsible choice and did not do a proper food challenge. As for Zeke, those food challenges were crazy! A food challenge should not consist of that much food. His mom was complaining about the few extra carrots he snuck in at the office, but at home gave him 4-5 tuna steaks. That is a bit excessive. I felt that these parents didn't have the proper guidance and were just "winging" it as best they could. They need the help of these blogs and networks the FA community is a tight knit group and am so surprised they have found no worthwhile help.
I wanted to reach through the screen and help them, teach them everything I know and help them be proactive and not feel that FA define who they are! For them I wish personal acceptance of their dx and learn how to keep themselves as safe as possible.

Food Allergy Families said...

I agree with Lindsay in that the show could end up causing more confusion about food allergies rather then awareness. I myself was hoping to see a more typical food allergy case in hopes of bringing a better understanding to young kids and teens about what it's like for the majority of those classmates, teammates, etc. living with food allergies. I felt that Zeke's story was essential in bringing awareness to EE and although hugely related to food allergies, I felt it could have been a topic all its own with perhaps a separate episode to help eliminate confusion between the two. However, it was a great attempt at bringing a much needed awareness to food allergies and I do applaud MTV for that.

GingerGirl said...

I made a point to watch it, as I have EE myself (just diagnosed last month). My gastroenterologist did not even suggest FA testing. I self-referred to an allergist and it turns out I am allergic to 12 know foods at this time (as well as every environmental allergy they tests, except for bermuda grass!). I appreciate the attention it brings to these diseases and those who suffer from them!

Poker Chick said...

I saw it and have very conflicted feelings about it. On the one hand, I applaud MTV for educating the public on the impact food allergies has on daily life, the more we get this into the public, especially this age group the better.

On the other hand, they are, as you note, extremes and in I way I worry that this will perpetuate the vast amounts of misinformation people have about people with food allergies.

Overall, while I applaud the effort, I don't think this helped anyone get a better understanding of what it's like for kids with just plain, not sensationalist, food allergies and I worry that it may have caused even more confusion.

Mrs. Peak said...

I watched it and was sooo hoping that Dr. woods would have mentioned the GAPs diet to help heal the intestines.

Thanita said...

Great post Sloane! I think it is another step towards awareness. The misinterpretations, mismanagement, constant reactions and need for medical attention, worry,anxiety, bullying etc was portrayed and guess what? We all have gone through this in our allergy life at one point. I think it did a good job of showing the public that food allergies is extremely dangerous and most importantly, difficult to manage.

Bridget said...

I thought it was horrible! It did nothing to raise awarness of food allergies. Instead, it showed very irresponsible parents urging their children to try foods that could possibly cause a life threatening reaction and not be afraid of it. Minutes later, the ambulance was shown. The girl's father was the absolute worst. He seemed to get annoyed that she couldn't eat what he cooked, even though it could kill her. I was truly dissappointd.

Tim Skaggs said...

For raelyn, I think the chiropractor did a great job, he never claimed he would cure her of anything, just that he could help, and he definitely did. With his testing he came up with a whole list of trigger foods for her. It was not the chiropractor's fault that she ate a bunch of the wrong stuff and had to take epinephrine, and her friend called the ambulance. I think Dr Roselle empowered her by definitively identifying her trigger foods. How much is that information worth to an allergy sufferer? It is priceless to know that about yourself because it puts you in control of your sickness.
My allergies had been identified by a chiropractor who used muscle testing too, in my opinion it is invaluable to quickly and inexpensively know what are your allergy triggers. I could not imagine my life not knowing what I was allergic to what I wasn't.

scilla said...

I have severe allergies and think that Raelyn may have something other than idiopathic anaphylaxis. I have a condition called systemic mastocytosis and it sounds similar. I was very upset with Zeke's allergist. If someone has severe allergic reactions the allergist should NEVER do scratch tests to determine allergic reactions. A real allergist draws blood and introduces the allergens to the blood and watches the reactions that way. They both are seeing quacks.

FAAN (The Food Allergy & Anaphylaxis Network) said...

FAAN™ has been receiving a lot of questions regarding the episode and in response we’d like to remind everyone that:

1. There is no cure for food allergies. Currently, there is no FDA-approved cure for food allergies. Strict avoidance of the allergy-causing food is the only way to avoid a reaction.

2. The first line of defense for treating an anaphylactic reaction is epinephrine. Epinephrine works to reverse the symptoms of anaphylaxis and helps to prevent its progression. For people diagnosed with a food allergy, it is important to always carry your epinephrine auto-injector (Adrenaclick™, EpiPen® or Twinject™). Antihistamines (such as Benadryl®) and steroids (such as prednisone) are often used to help the recovery of a person with an anaphylactic reaction. Antihistamines and asthma medications (such as albuterol) may be administered with epinephrine, but never instead of epinephrine during anaphylaxis, because they cannot reverse many of the symptoms of anaphylaxis. If you or your child has an anaphylactic reaction, it is also important to go to the emergency room.

3. Food allergies are life-altering for everyone involved and require constant vigilance. While food allergies are manageable, the constant attention to ingredients can bring worry and fear about reactions. FAAN recommends that anyone who experiences chronic anxiety about their food allergies seek treatment from a mental health professional to help ease the burden.

In “real” life and on television, food allergies should be treated responsibly. As the trusted source for information with food allergies, FAAN is here to help.

Theresa said...

My husband and I made sure to DVR it so that we could watch it together when we had a chance. What we deal with seems so mild compared to what was portrayed on the show and definitely made us thankful that our situation (after some getting used to) is very manageable.

I hadn't really thought about it causing people to dismiss less severe allergy cases, but I'm sure that's true. We already battle with people not taking it seriously.

221133 said...

My wife is a nurse and is doing extensive research in this field, Raelynn's symptoms do not add up to just an allergic reaction. The type of seizure she was having doesnt corrispond with a food allergy. I believe Dr Wood did do work with her but this wasnt shown on camera by MTV. I am in no way calling into question Raelynn's condition but it is possible that she is effected by something other then severe food allergies.