Thursday, March 3, 2016

Interview: Kids, Food Allergies and Mental Health

I recently spoke with two experts from the Hospital for Sick Children about food allergies, mental health and childhood wellness.  

Dr. Melissa Lieberman is a Psychologist in the hospital’s Eating Disorders Program and Kellie Welch is Clinical Dietitian, also at SickKids. We discussed the challenges facing parents and the issues that can arise as children grow up and attain independence.

Check out my interview with Melissa and Kellie at the Food Allergy Canada blog.

Saturday, January 30, 2016

"Zero tolerance" vs common sense: Two students suspended for helping classmates with asthma

Let’s start with a quick fact: asthma can be deadly. As blogger Tiffany Self points out, there have been two juvenile deaths from asthma in the US this month. In fact, about 10 Americans die per day during asthma attacks.  Worldwide, asthma is an epidemic and -- as with food allergies -- timely access to emergency medications is absolutely crucial.

Quick-thinking teen Indiyah Rush gave her inhaler to a friend who was having an asthma attack. She was suspended from school – for sharing a “controlled substance” on school grounds. This is despite the fact that asthma experts agree  Indiyah did the right thing. As Dr. David Stuckus notes:  "in this situation, the benefit from sharing albuterol far outweighs any potential harm."


Then, high schooler Anthony Ruelas was in class when another student, Tishica, had a severe asthma attack. The teacher told the class not to help -- while the teacher sent an email to the school nurse and waited for a reply. (yes, you read that correctly...) When Tishica fell to the floor in respiratory distress, Anthony picked her up and carried her to the nurse’s office. Unbelievably, Anthony was suspended for "leaving class without permission". 

“They were more worried about writing me up instead of worried about Tishica,” said Anthony. 

What do these two stories have in common? They illustrate the logical conclusion of school districts’ wrong-headed “Zero Tolerance” policies, which disproportionally target students of colour and do not take mitigating circumstances into account. As the Asthma and Allergy Foundation of America wrote: "Usually we reward Good Samaritans coming to the aid of another human being who is sick -- not punish them."

What is Zero Tolerance?
The concept of Zero Tolerance is based around policies used for maintaining order in prisons. Many school districts began adopting Zero Tolerance policies in the mid-1990s. The basic error of Zero Tolerance is well-documented.
The American Psychological Association reviewed 10 years of research and concluded that there is no evidence to support Zero Tolerance policies. The US Justice Department and the Obama administration have strongly recommended ending the practice of zero tolerance policies in schools. The American Bar Association, which opposes Zero Tolerance, has found that non-white children are the most likely to suffer the negative consequences of it. 

Both Anthony and Indiyah are students of colour.  

Negative health implications
There are negative health implications of Zero Tolerance. Kids with food allergies and/or asthma, may need access to immediate medical care in the form of an EpiPen or an emergency puffer for asthma. They are often well-informed about their health care needs, at times moreso than some teachers and aides at their schools. For example, most children know the difference between an asthma puffer and recreational drugs. But with the selective application of Zero Tolerance drug policies, life-saving medications are lumped into the same category as LSD or MDMA: "controlled substances".

In fact, some schools do not even allow students access to their own medications without a lengthy protocol of permissions. Since time is of the essence in an asthma attack or anaphylaxis, the consequences of such ignorance can be devastating. This is what happened with the heartbreaking death of Ryan Gibbons, who died at recess when he had an asthma attack and did not have timely access to his emergency asthma medication. Ryan's puffer had been confiscated that day by teachers, as it had been on many other days, despite his mother’s repeated attempts to educate the school. The official school policy was to keep all asthma puffers in the principal’s office, away from the playground where Ryan needed it.
Albuterol delivered through an inhaler is unlikely to cause any significant side effects whether administered to someone who does not need it or accidentally given in doses higher than recommended. - See more at: http://www.allergyasthmanetwork.org/sharing-caring-but-should-you-share-inhaler/#sthash.4Fgjdb39.dpuf
Albuterol delivered through an inhaler is unlikely to cause any significant side effects whether administered to someone who does not need it or accidentally given in doses higher than recommended. - See more at: http://www.allergyasthmanetwork.org/sharing-caring-but-should-you-share-inhaler/#sthash.4Fgjdb39.dpuf

The community responded and Ryan's Law was passed by the Ontario Parliament; it secured the rights of any child with asthma to self-carry their emergency medications at school and not have it confiscated. It's important to note that the discussion around Ryan's Law was framed around the health care rights of children. It was clear in that moment that softer approaches, such as "guidelines" or voluntary "education programs" hadn't gotten the job done: a law with teeth was needed. 

Resources already available
So why, exactly, were Indiyah and Anthony penalized? They didn't hurt anyone or commit any crime; in fact they were Good Samaritans, taking positive action when nobody else stepped up. Another crucial question: will the schools address the errors that allowed the situations to escalate to the point that students had to intervene when teachers didn't? There is ample opportunity for the schools to review their emergency protocols, for example. Both schools are in Texas, which as the Asthma and Allergy Foundation of America (AAFA) notes, does not require schools to have emergency protocols for asthma -- nor does it have policies, procedures or resources available for schools to assist students with asthma. 

The AAFA has called for states to take advantage of new federal granting programs that provide asthma education for teachers, so that each student will have an individualized plan and teachers will respond appropriately. The Obama administration has developed several programs and incentives for teachers to become educated about asthma and food allergies (in addition to stock epinephrine programs). Any district can access these resources, whenever they want. But will they? It is easy for a district to say we don't have time this year for more teacher education. Next year... 

But there is a more complicated reason why these programs haven't rolled out as quickly as they should. Because to adequately address student health means making a fundamental shift in the way that students are perceived as well. It involves opening up to the idea that kids with health conditions deserve a greater degree of autonomy (the right to their personal health management) and that they deserve a seat at the table on this issue in our schools. Especially the Indiyahs and the Anthonys.

Collaboration and common sense
Most children with asthma or allergies who are walking around with their EpiPens or puffers around their waist have known since they were three years old how and when to use them. Many of their peers do, too (for example, Anthony had seen the effects of a severe asthma attack in a member of his own family). Some of their teachers don't have the same level of knowledge or experience and over-rely on school nurses (many of whom are only part time). 


The idea of top-down authority implicit in Zero Tolerance presupposes that only an authority figure (school nurse) can provide information or help to a person in need. 

But this wastes critical time -- life-saving moments, in fact. Let's just look at the EpiPen. The experts all agree that when someone is having a reaction, a friend, a teacher or a parent must use the EpiPen BEFORE even picking up the phone to call 911, and long before the paramedics arrive. In fact, waiting for an "authority" can lead to severe complications or even death. The same is true for using an asthma puffer. You don't wait for the school nurse to email you back. You just do it. This is a hurdle that our teachers and administrators must overcome, but unfortunately it challenges their notion of hierarchy, which may be entrenched in their school or district.

If we truly want schools to be safe -- including safe for children with health conditions -- our school districts need to listen to students, banish the Zero Tolerance mentality and create spaces where everyone can work as a team towards a healthier community. This isn't just about advocacy organizations giving knowledge to teachers: this is about involving the kids themselves in the education and dialogue. It's their health and it's their school. We can all learn a lot from them.

PostScript: From The National Post
"Ruelas told KCEN that he’s more concerned about his classmate’s health than his suspension. Asked whether he would make the same decision again if he was given the chance, he sounded confident.
'Most definitely,' he said."


Tuesday, January 5, 2016

An interesting review of how effectively food allergy organizations manage their money

A blogger reviewed the financials of several American food allergy organizations. Very interesting, especially if you are considering donating.  Here is the article



Sunday, November 8, 2015

What to do about pity?



"Ohh...that is so sad that she can't eat anything fun."
"He can never play with doggies? Poor kid!"
"You must be so scared. I wouldn't be able to deal with it."

I’ve never been sure how to respond when people say things like that to me, especially in front of my kid. But from talking to other parents the past few years, I think I’ve come up with some ideas on and how we can move a conversation beyond pity.

1. Remember that pity is not compassion. I hate to sound harsh, but start by taking these statements for what they are: unhelpful. The person is simply running your experience through their own life rather than showing a genuine desire for knowledge…so think about how much energy you want to invest in explaining all about your life with food allergies to them. There is a good chance they won’t really be listening.

2. Deflect. If your child is the right age, consider deflecting the comment to your child, so they can respond with how they feel. Kids are great at being honest and showing their strengths--and it’s always good when you can give the power back to them. Deflecting also subtly reminds the other person that when they make comments like that, the children are indeed listening. 

3. Reposition. Position your child and your family as they truly are: strong and fulfilled, with food allergies being just one facet of your lives. When someone said it was “sad” that our son “couldn’t play with doggies”, I answered back “It’s fine. Humans make great companions too.” (because really!) Mention that we live in a diverse society that accommodates, and that people have all kinds of challenges, physical and otherwise, but that (of course) happiness is not tied into being exactly the same as everyone else, is it?

4. Leverage the opportunity to educate. Not so much about food allergies, but more about the rules of conversation. Tell the person in your own way that comments like that don’t help your kid. You don’t have to have the perfect smooth segue and everyone doesn’t have to feel warm and fuzzy in the end. Get it out there. The next mom or dad will thank you.

5. Or don’t. Maybe you have your hands full educating friends and family already. We become so good at it, and we feel responsible for raising awareness that we can lose sight of self-care. But self-care is the most important part of your family’s life, and walking away from an unwanted conversation comes with benefits of its own.

6. Talk to your kid. This is a great opportunity for discussion of your family’s values and the role of compassion in friendship and social life. Was it funny or weird what that lady said? Did it hurt your feelings? Where does pity (or accepting others' pity) really take us in life? When have we experienced compassion--and how did that feel different?

If you have a child with food allergies, you probably have seen that their own level of compassion, and their understanding of disability and difference is quite nuanced. If you think about it, our kids are amazing at maintaining social graces in sometimes high-pressure or awkward situations! By deflecting, confronting and refusing the model of pity, we as parents model a more positive way to our kids, while keeping them aware that we understand how they feel. Because above all, our kids need to know that WE get it.

Thursday, October 1, 2015

The Restart


Ordering something to eat at a café is not always possible: Bax carries an EpiPen for wheat as well as 5 other allergens and even a small amount of wheat from cross-contact has caused him to have serious reactions. So like all allergy moms, I carry enough food in my purse to feed an army and we will often just get drinks to go with our snack. Which is what we did that day. Bax got fresh squeezed OJ, pre-made, from the cooler. We sat on the bench outside and he took a sip.

“This juice is bad. It’s bad!” He said it like he was going to cry. Ten seconds later BAM. His head was in my lap. How could he be having a reaction? Maybe it’s the flu. But why was I even thinking that? He was having a reaction. Hives, check for hives (that telltale flag from the early days). But why was I even looking? He was having a reaction. I should call Roger. But why would I even consider wasting time with that? He was having a reaction.

Don’t think: act. Common sense kicked in. An epi and a trip to the ER later he was better, and late that night as he slept peacefully Rog and I pieced together what must have happened. Knife. A knife cut the oranges. The knife was in the café kitchen. So, there was hummus on the counter (sesame), or the knife had cut bread (wheat), or it was somehow near the ice cream (chocolate-peanut butter was on the menu). We remembered back to a milder reaction to a drink at a café, which again had probably come from food handling. What is the deal with cafes? Can we even get anything at a café anymore? How insane is this fucking SHIT? (Don’t think: go to bed.)

For the next week or so, Bax was really full of questions about his allergies -- coming into a new awareness about them and about their presence around him. He is almost six now and his world is getting a lot bigger, of course. We kept our responses measured, wanting to be honest but also not wanting to get him freaked out or anxious. Death came up; that was a new topic. It was a rough slog. 

Those gun-shy days after a reaction that are almost inevitable, I guess. You need to find a way to restart, or hope that a restart comes your way. I guess my biggest challenge has been to square my own reality with my kid’s, because he seems more adaptable. When we talked about the café and the cc he said to me, sounding practically glib: “Not going there again!” “Nope,” I reassured him. But where will we go, I was thinking. Where’s the restart?

Luckily, I talked to some other allergy moms and found out about something amazing in our city. The next Saturday I told Bax there was a surprise -- and the three of us walked across town to a new takeout resto that’s like no other in Toronto. Everything in their deli is free of the Top 10 allergens! Yes, for real. Everything that comes in is checked for cc by the owners, who themselves have food allergies. Kitchen practices: totally together. You don’t even have to have the conversation…the due diligence was done before you walked in the door!!!

At the counter, the guys ordered (which was whatever they wanted, because it’s all allergy-friendly). I chatted with the owner, while they settled in to the front window benches with their lunch. By the time I got to them there weren’t any seats left, so I stood behind Bax. He leaned his head back against me and none of us said much, just looked out the window at the world going by. Just a regular family having a snack at a café after our kid’s class. Nothing ever tasted so free. 

Check out Feast cafe at thisisafeast.com

Tuesday, July 28, 2015

Experimental Treatments and Trials: Is Hope the Only Option?


Recently, some parents I know were discussing experimental treatment for food allergy, as one family was getting ready to enter a clinical trial. “Hope is the only option!” they all agreed.

But is hope really the ONLY option? Can scientific rigour, patience and even healthy skepticism be options, too? Could hope actually be, in some cases, an impediment to making an informed decision, or to being prepared for the hard work of a clinical trial? 

If you are considering a food allergy clinical trial for your child, here are some questions you may want to consider:

1. Have you accepted your child’s allergies as they are today? Have you been modeling for your child how to integrate their food allergies into their life -- or has the family harmony been in a state of disruption while you wait for a cure? If the treatment doesn’t work and you return home with the same allergies and the same child, will you feel like anything (or anyone) has failed other than the trial itself? Does your child understand this as well?

2. Do you and your child understand the physical rigours of undergoing experimental treatments? Most Oral Immunotherapy (OIT) starts off with doctors administering just enough of an allergen to determine the child’s threshold… which means bringing them to the brink of anaphylaxis and treating them medically to prevent severe shock. Has this been explained to your child, and are they prepared for the fact that anaphylaxis may also occur during the trial? For Chinese herbs (TCM), there is a lot of work involved (taking multiple herbs, daily soaks, frequent cream applications). Is everybody in your family, including your child, prepared for what's to come?

3. Is there informed consent? Has your child given informed consent: understanding the risks and knowing they have the “out” to leave the study without guilt if they so choose? Are they old enough to understand and give consent? Are you and your child comfortable with the perameters of the study?

4.  Has your allergist -- using numbers and facts -- told you the odds of success or failure? If it's a clinical trial or experimental treatment, it means they are still testing their ideas and more research needs to be done to determine if it will (or won't) become a useful treatment that is accepted by the larger medical community. Has your allergist explained what researchers know, and what questions they are still trying to answer?

5. What will happen to you if the treatment doesn’t work? If you travel home from your final appointment with the news that it hasn’t worked, what type of conversation will happen in your car or transit? Will you take a balanced view of the results, or feel an embittered sense of lost hope? Are you ready for your child’s tough questions? Ready to go back to the way things were?

6. How hopeful is your child? What if you are a hopeful parent with a pragmatic child, or a pragmatic parent with a hopeful child? How will you reconcile these differences?

7. What about anxiety? Fears about reactions or other health concerns are natural, and for some, these are a clear barrier to participating in a clinical trial. You know your child, and yourself, and what those limits are. Your GP and other care providers can also help to get a sense of whether it is psychologically appropriate to go forward with a trial. And remember that, if your child undertakes a study, fears about getting an unwanted result (being disqualified, etc.) can also come into play. Pressure to succeed could lead your child to hide their feelings (and their reactions). Your allergist should be modeling a low-pressure approach, which hopefully everyone will adopt.

8. Is the experimental therapy scientifically valid? Does it seem worth the risk to you?  There are certain therapies that have no medical value and are dangerous (NAET and chelation, for example). But keep in mind that for any experimental treatment, there is risk and you are entitled to feel and express all your questions, even doubts. As a physician, your allergist should give you clear answers (and cite peer-reviewed studies). Good scientists trust facts over magical thinking. No one should be offended by your questions or see them as negative.

Nor should you; you can be a pragmatist and still be optimistic. In fact, you can even be pessimistic and it actually won’t impact the scientific outcomes of the trial… at all! Whether you are thoughtful, skeptical or otherwise, there are many paths to take in considering to enter a clinical trial. Hope most certainly is not the only option, and hope -- on it own -- is clearly not even the best option. 


NOTE: I am not a medical professional. The perspective above is very much a layman (or laymom's) perspective. :)

Friday, July 24, 2015

Link: Stats on Outgrowing Food Allergies

An interesting summary of some stats on the likelihood of outgrowing various food allergies. Read it here.