I'm Not Nuts: Living with Food Allergies (2009) - full transcript

- Some people are surprised.

They say you know, until my child had it,

I had heard about food allergies

but I never really knew what it meant.

- I didn't realize how serious it was

until I experienced it myself with my son,

and it really scared me,

I was shocked, it really scared me.

- The doctor just said this is something

I just have to deal with.

Even though I've eaten it my
whole life it doesn't matter,



it can change overnight, and it did.

- The common misconception
from the older population is

that oh, it's a food allergy,

that means just don't touch
it because you can get a rash

and it can cause a little
bit of skin irritation.

That's one of the major misconceptions

that we are dealing with,

and it can lead to a lot
of family strife as well

where the grandparents
think, "Oh, Johnny can have

"a little peanut because it'll

"cause a little bit of a rash,"

whereas the parents and Johnny knows

that it can be much more severe than that.

- You know, I guess I get
frustrated with people



who think maybe that Will's allergies

may not be as severe
as they are, you know,

or is this really real?

But when they see him when he's in the ER

and the doctor's listening to his chest

and they notice there's no air moving,

then they know it's real.

I guess people think oh, food allergy,

oh is this a little tummy thing,

or a tummy ache or a little diarrhea?

And in his case it's not what it is.

- Then there's other people
who just can't imagine

that food could be dangerous.

They can imagine that bee
stings can cause anaphylaxis

but for some reason food just
doesn't seem dangerous to them

because it's what we need to live,

to grow, and they can't imagine

that somebody could die from it.

- One of the hardest things
to get people to understand is

there is no difference in
terms of the type of reaction

that happens when someone
gets stung by a bee,

so a honey bee or a yellow jacket,

and the type of reaction theoretically

you can see when ingesting
a food or in fact,

taking a drug that a doctor may give you.

They're all the same parts of

the immune system going awry.

We certainly didn't
have anybody sit us down

and say this is going
to be a family-changing

and a life-changing experience

for someone who will
appear 99.9% of the time

healthy and completely normal,

which you normally would be excited about

except that when you show
this normal happy child

to someone and say, "You
give them the wrong thing

"and they may die."

It's just too hard for them to comprehend.

- It's frustrating to me
when you try and explain

it to people and they don't understand

what anaphylaxis is to begin with,

so you have to explain that to them; and

when you tell them that food
can actually cause that,

sometimes they look at
you like you're crazy.

It's very difficult to explain
to them it really can happen,

I've seen it happen with my own two eyes,

I've had to give epinephrine to my son

because he's blown up into a big hive

from drinking a glass of milk.

- I think the reason
that people often find it

hard to accept that this is
such a significant problem is

we eat food every day.

If you don't live with a food allergy,

it's hard to even imagine
that something as simple as

peanut butter, that is just
a staple part of the diet,

or a tree nut or fish that
most people eat every day

without a problem, how can that hurt you?

It just doesn't even make
sense, it seems impossible.

Even as a physician that takes care of

children with food allergy every day,

I still think it's bizarre
that something you would eat

can, for some people, kill them.

(gentle piano music)

- There are multiple foods
that can cause allergies.

In fact, any food can be a food allergy.

- I'm allergic to tree nuts and coconut.

- [Man] And then what's Emily allergic to?

- She's allergic to sunflower,

eggs, peanuts, and I think tree nuts, too.

- I'm allergic to crustaceans;
shrimp, lobster, crab.

- I'm allergic to nuts,
peanuts, eggs, milk.

- It's a really long list.

Poppy seeds, sunflower
seeds, peanuts, all nuts,

sesame, chickpeas, lentils,

- Chocolate.
- Chocolate.

- I am allergic to a lot of things.

I'm allergic to sesame seeds, sesame oil,

tree nuts, seafood, shellfish,

mangoes and strawberry seeds.

- I am allergic to fish and most legumes.

- He's allergic to milk,
eggs, peanuts, tree nuts,

sesame seed; he's also
allergic to beef, pork, rice,

lamb, and peas.

It's a long list.
(laughs)

- The most prevalent foods
that we see in children,

and in fact the general
population, are things like

soy, wheat, egg, cow's
milk, and of course peanuts

and tree nuts, and fish and shellfish.

We tend to link them all
together in these large groups.

There can be other foods, however,

that fall outside of that 80% range

that can cause food allergies.

We're seeing trends now in sesames,

other legumes, other foods
of any sort can be a problem.

- [Audra] I've gone to
their allergist and actually

had their allergist create a
letter for both of the girls

stating exactly what their allergies are,

that it's life-threatening,
almost like validation

because a lot of people don't
understand from the mom.

I come off to other people as
an anxious overbearing mom,

sometimes I feel, because
I'm very protective

of my children and their allergies.

It's almost like I needed extra proof

that no really, this is a
life-threatening situation

because people tend to
kind of blow it off.

- And when someone mentions
that they have a bee allergy

everyone's aware that oh my
God, this can kill that person.

Whereas for whatever
reason, food allergies,

it falls into a different realm.

Part of this falls back
to this generational gap

where food allergies are
increasing much more nowadays,

or were much less present
40 or 50 years ago,

so that generation
never was exposed to it.

So they think a food allergy will cause

a little bit of irritation and rash.

Part of the disconnect, I think,

between bee sting allergies
and food allergies is

that food is commonly
eaten every single day and

most people tolerate foods
without any difficulties at all.

Most people think of their food allergies

as being well, I get a
little cramping or bloating,

like lactose intolerance, and they think

oh, that's what a food allergy is,

just avoid it and you're fine.

They don't realize how it
can be life-threatening.

- Mark and I both have seasonal allergies,

and Mark took shots for 18
years when he was a kid.

I took shots when I was older,

seasonal allergies shots.

But we didn't know, you
know, that our likelihood of

having a child with allergies
would be higher, but it is.

But interestingly enough our younger son

doesn't have any allergies.

- [Boy] Zip.

- Zero; he has a little bit of eczema

but that's about it.

- Early on, and this
will happen in probably

a not-so-humorous way with some families,

it's like who do you blame?

It must be your genes,
it must be your genes.

And so Laura says that my
mom has multiple allergies

and my brother, so maybe it's
the gene pool on our side.

But as you know, if you look into this,

it's a mixture of fate and genetic pool

and some other things.

- Very often parents will come in saying

I have hay fever, my
husband has hay fever,

why does our child have a food allergy?

And I always use the example of

if your husband's allergic to cat

and you're allergic to dogs,

your allergies are what they are.

Your child doesn't eat cats or dogs.

If you put a cat or dog
into somebody's mouth

they're gonna get the same
itching, the same sensation

as if some child were
to put a peanut, milk,

or some food they're allergic to.

It's a cultural choice.

We don't eat those foods, we
don't see those things here,

that's why we don't have
those particular problems.

But the same potential, the
same reaction's happening,

it's just that in the
parent it happens to be

to dog or cat, and in the
child it happens to be

to a particular food but it
is the same type of reaction

and it's the same response in
the immune system's happening.

- It's interesting growing
up with food allergies

and then having a family
and having children.

Trying to deal with the
introduction or the discovery

that our kids had food
allergies was a surprise,

and it shouldn't have been.
(laughs)

We're both in science and we're both,

we should have understood that there's

probably a genetic component to it.

But we didn't understand.

- [Isabelle] We didn't think about it.

- [Roger] Yeah, we didn't think about it

and we also didn't think about

how life-changing it would be.

- Well genetics definitely plays a role.

We typically will see
families that have kids,

or families that have
asthma, eczema, allergies,

and they'll tend to
have more food allergies

and it tends to run
together as atopic diseases.

- We've actually done studies about

genetics of food allergy
and so we did a study

in peanut allergy, looking
at twins who are either

identical twins where they share
essentially all their genes

versus twins who are
fraternal, they only share

about half of their genes;

and the rate of food
allergy was much higher,

over 65%, in the identical twins,

but 7% in the fraternal twins.

That says that it's very genetic but also

there are environmental influences.

- But we just don't know
what turns that switch

on or off for different patients as to

why they suddenly become allergic or not.

- [Scott] So I have a lot
of families that'll come in

and their child's been
diagnosed with a food allergy

to something, and of
course as being humans

we want to blame it on something.

So lots of moms will say oh,
I must have eaten something

or maybe not eaten something
while I was pregnant

or breastfeeding that caused this allergy.

Well the bottom line is
that based on the evidence

that we have today, I could
certainly say to a parent

there's no reason for
you to be on a guilt trip

that you ate or didn't eat something.

The studies are, unfortunately, limited

and sometimes unclear on this,

but there isn't strong evidence

that what a mom eats during
pregnancy or breastfeeding

causes an allergy.

The problem is that our
studies are limited.

I can't say for sure
that it's not related,

but there have been many
studies on the topic

and yet there's no conclusive evidence.

- Food allergies are not something

that we've done to our
children, it's not something

that just happens solely during pregnancy

or how you fed your child
in the early parts of life.

Food allergies are a genetic component

as much as they are an
environmental component,

in that it probably
stemmed from the original

genetics of the family,
what the family's genetics

was capable of, and
that certain situations

make it arise in other
families versus others.

The difficulty for
families is families are

searching for answers, and
there's never a simple answer.

It's easy to pinpoint processed foods,

the way you eat, the timing
of when you eat something.

Well maybe those things
do have an influence,

but it's not the complete answer.

(melancholy music)

- I got my allergies through pregnancy.

With Tory, about six weeks postpartum,

I made myself a tuna sandwich
like I normally would have

and I noticed my mouth
began to feel funny,

my lips swelled up, my throat swelled,

and I had a feeling I
knew what was going on.

So we went to the hospital.

With my second pregnancy
it wasn't quite as severe.

I noticed after I had some vegetable soup,

I noticed hives on the outside of my mouth

and I didn't want to believe
it was happening again.

So the next day I had
something else with beans in it

and sure enough I began
getting the hives again.

- We found out he was allergic
to sesame oil and sesame seed

because I had given him
some lip balm in the car

on our way to church,
and he was eating candy,

had an allergic reaction and
we thought it was the candy.

We tested him for everything in the candy,

got to the ER, and really it
took us a while to figure out

that he was allergic to sesame.

- [Melissa] I first learned
about my son's food allergy

when he was about seven months old.

We had a week where we thought he had

in intestinal illness,
but he actually turned out

to be passing blood in his stools.

We took him to the allergist,

he had a history of
eczema and wheezing, and

it turned out to be that he
was bleeding intestinally.

We basically determined that
he was allergic to milk.

- On Emily's first
birthday I was very excited

to bake her her first birthday cake,

and it's tradition that
she gets a big piece,

eats it with her hands,
and you know it's funny

to see the children with the
frosting all over their face.

So I gave her a piece of the cake

and we sang Happy Birthday,
and almost instantly

as she's eating the cake she
started scratching her hands

and was starting to cry a little bit.

And I thought, "Well
that's kinda strange."

It's her birthday, she's eating cake,

how exciting for a one-year-old

to have a big piece of
cake in front of them.

And I realized something
just wasn't quite right.

I looked at her hands and she was covered

with white hives on both of her hands.

So she was crying because her
hands were itching so badly

and she was scratching them to the point

where it looked like they were almost

going to start to bleed.

So it was kind of sad to
see her so uncomfortable

at her birthday, we're all staring at her,

we had all sung Happy Birthday,

and she was not obviously enjoying herself

because at the time I didn't realize

that she had an egg allergy.

And sure enough, there
were eggs in her cake,

and I think that is what sparked
the reaction in her hands.

- The biggest dilemma
when we deal with children

is communication, children
are unable to describe

how they feel, and by the
time a child can physically

tell you how they feel or
emotionally tell you how they feel

they are probably having
some significant symptoms,

and misinterpretation
by parents very often

is a key mistake.

- So she would cry and
we would interpret that

as meaning she was hungry, so
we gave her some more milk.

And the more milk we gave
her the more she cried,

and the more she threw
up, and had diarrhea,

and had more symptoms.

So it was sort of a vicious
cycle that we had gotten into.

After nine long months of
dealing with this condition

and the constant crying,
we finally got a diagnosis

that said she was
allergic to milk and eggs.

- [Laura] We had given her peanut butter,

and she just started reacting right away.

She had hives on her face, she had hives

where she had touched the
peanut butter with her hands.

At the time she was 18 months
old, she wasn't talking,

so she was kind of whining and crying

and we knew something was wrong.

- And the first time we gave it to her

she didn't want to drink it

but she put her hand in her mouth

and she had a rash on the hand.

Then the second time she
had it she had a little bit

mixed with breast milk, and
then she was sitting down.

Is that what you were gonna say?

- Yes.
(parents laugh)

Excuse me, but it was almost
like projectile vomiting.

It was pretty amazing.

- Like the exorcist, you know?

She was sleeping and
suddenly her eyes opened up

and whoo!
(laughs)

- [Roger] So it was pretty clear that

there was something wrong.

- I use my daughter at times,
whether she likes it or not,

as examples of how to
sort of go about things

for our own life
experiences with our child.

My daughter, for a long time,

was being given peanut butter purposely

to try to desensitize her;

what a lot of families
ask to do at points;

and we thought her food
allergy had disappeared.

We'd gotten to a point
where we all felt confident

it had gone away.

And she went through this
particular part of this protocol

to see if this were to go
away, and all of a sudden

one day she looked at us and
just asked us at age four,

"Why do you keep giving me that food

"that makes me feel so sick?"

We finally started to ask
questions of what she felt,

and she told us that
it made her ears hurt,

which later on became ears itch.

And when she was able to describe this

and she wasn't getting the
food any more she said,

"Oh, it made my throat feel funny."

These were words that started
to come out of a child

that was having sensations really

that only when she was able
to tell us did we understand.

That was a big lesson for me.

For someone who takes care
of children all the time

and as a parent, understanding
your child's development

becomes really important.

Things happen to children.

The child, the toddler, that
refuses to eat something

of course that's normal behavior at times,

but sometimes in a food allergic child

it's your first clue that
something's not right.

And when you ask histories well

and you talk to families
enough, they'll go back

and tell you, "He never would eat an egg.

"Every time we'd try to eat
an egg he wouldn't eat it.

"He would always put down the French toast

"and he wouldn't eat it.

And then we found out later on

he had a horrible reaction to egg.

The baby did it before he could even talk,

and that's usually what
happens, and it's very common.

Milk is that way, egg is that way,

peanuts and tree nuts can
be that way for families.

They will tell you later
that when they sat down

and thought about it, they'll realize

something was happening and
the kid was telling them

something that they didn't understand.

(gentle piano music)

- So there are people who
may have a reaction to a food

and wonder, is there something
about a substance in the food

that made them allergic.

Someone bites into an apple
and gets an itchy mouth,

they might think, "Oh, I'm
allergic to a fertilizer

"on the surface of the apple,"

but really the allergy is to the protein

that's in the peel of the apple.

You see it's the natural
protein that's in the food

that the body's immune
system is attacking,

it's not other parts of the food.

So for example the sugars or the fats

or the other components
of the food are not

the things that trigger
the allergic reaction,

it's the protein.

- What typically happens is
an antigen or a particular

foreign protein is recognized by the body;

whether that's through skin,

oral contact through
the mouth, eye contact.

The immune system recognizes
that particle as being foreign.

It sends cells to attack
that particular particle,

and those cells release
other types of chemicals

to help destroy what the body perceives

as something dangerous.

In a food reaction sense,
the major and most common

substance that's discussed is histamine.

It's the same chemical
that causes the runny nose,

itchy eyes, sore throats, that
come with seasonal allergies

but in large amounts.

So when a person reacts to a food,

this can cause significant changes;

well beyond just the itching,
runny nose, and hives;

but can, if released by
enough cells in the body,

cause the GI complaints

which are the stomach cramping complaints.

It can change your blood pressure and

cause the heart issues.

It can cause release of
histamine and other types of

chemical mediators in the
lungs and cause wheezing

and shortness of breath.

Because this particular
chemical is located

all over the body, concentrated in places

such as the nose, throat,
mouth, stomach, heart and lungs,

you potentially get all these
things happening at once

and finally cause the dangerous part of

an anaphylactic reaction.

- She just had this
different look about her.

Her face started to go
a little bit of pink,

and her eyes started to glaze over.

She just didn't look right.

Then her breathing was affected,

and her blood pressure
was probably dropping

because she stopped
responding to our questions

and stopped talking and so forth.

- Analphylaxis is
defined as a multi-system

or multi-organ event in the body

caused by an allergic reaction.

It can manifest itself in many ways,

most commonly hives which
are rashes on the skin,

as well as breathing issues; wheezing,

difficulty and chest tightness,
shortness of breath issues.

Also in terms of stomach issues
or gastrointestinal issues,

vomiting, diarrhea, significant cramping.

Of big concern however, of course,

are the cardiovascular issues;
changes in blood pressure

causing what's called a
loss of blood pressure

or hypotension which can
potentially be life-threatening.

Some people have noticed
neurologic symptoms.

Some patients complain
of what they feel is

an impending sense of doom.

They can feel that something
bad is gonna happen to them

but can't describe it any further.

Young children will describe this.

Itching can also be another complaint

which is a painful type
situation for some children,

and how children interpret
how they feel can vary.

We all believe that anaphylaxis isn't

just one thing happening to the body.

The real definition is multiple things

happening at the same time.

So very often someone will
break out in hives on their face

or their lips or their arms,
but in addition to that

start to wheeze, cough,
and then ultimately vomit.

The worry is once more
systems are involved

the more deadly or theoretically dangerous

a particular situation gets.

What makes it scientifically
hard to understand is

nobody knows exactly what
the next reaction will be.

And what gets very confusing for patients

and why vigilance is important is

that some people will have reactions

that seem very minor at first.

At the next exposure or
the next time the reactions

could appear to be 10 times worse.

Or, more importantly,
somebody could have a reaction

that completely appears out of the blue

and seems to have no
explanation whatsoever.

(gentle piano music)

- [Scott] We've seen
an increase in asthma,

in allergic rhinitis or hay fever,

and also in allergic skin disease; and

we think we're seeing a rise
in food allergy as well.

So why are all these
allergy-type problems increasing?

The main theory that people
talk about these days,

and it's just a theory,
it's called the hygiene

or cleanliness hypothesis.

To sort of boil that down, the idea is

that our body's immune system
is supposed to fight germs.

Well, we're using lots of
antibiotics and vaccines,

and we're living pretty clean lives.

So that immune system's looking
for something to attack.

Without all those germs to attack,

it might attack harmless
proteins like animal danders,

like pollens, and ultimately
even proteins in our food

causing food allergies.

- Other misconceptions
about the hygiene hypothesis

is it has nothing to do with how you and I

wash our hands on a daily basis.

It is based on how society
has changed over time

and how we address systemic
illness and global illness.

Washing our hands more tomorrow,

getting more vaccinations tomorrow,

living on a pig farm tomorrow in Iowa,

is not gonna make food allergies

less a problem for your family.

The process has already started,

the genetics are already there,

and it is a society-based issue
versus an individual family.

(gentle piano music)

And if you look at a survey of people

around the United States,
almost 40% of people

will tell you they have changed their diet

at one point in their
life because they felt

they had a food allergy.

That's contrasted by the
actual percentage of people

who have true IgE-mediated
allergic food allergy

which is at the most 6%
in children and probably

one to 2% in the adult population.

We manipulate our diets
more for lots of reasons

that we don't understand,
and it's misunderstanding.

Lactose intolerance,
which is the inability

for the body to break down lactose sugar

which is found in cow's
milk can give people

sensations of cramping,
diarrhea, upset stomach,

which sound very similar to
anaphylaxis in food allergy

but is not an allergy.

- [Ben] We worry about
food allergies as being

the life-threatening reactions, the ones

that can cause anaphylaxis.

Whereas food intolerances
basically encompasses

all the other reactions to foods

that are not IgE-mediated;
the cramping, bloating

that you get after eating
foods is a food intolerance.

Whereas hives, trouble
swallowing, vomiting,

that fits more of a food allergy.

- [Harvey] And again,
the general population

tends to misunderstand that and
blame everything on allergy.

Because of that I think we
see the definition of allergy,

how the public perceives
allergy, as a catchall phrase

for all sorts of problems.

(wondrous music)

- I would say that the most important test

for food allergy is a conversation.

That sounds a little bit
weird but the history about

what's happened is the
most important part of

the food allergy evaluation.

How much of the food was eaten,

what happened when it was eaten,

were the symptoms consistent?

There are all kinds of
details that the doctor,

the allergist, wants to
know and needs to know

in order to say is this a food allergy,

is it some other kind of thing

that looks like a food allergy but is not?

That's a big difference.

Then when it comes down
to things for testing,

we have basically three
major ways of testing.

We have allergy skin tests
which is just scratching

the surface of the skin with
a little bit of the food

to see if it causes a
little swelling, a hive

that we're able to measure
and look at to think about

whether that's pertinent or not.

There are also allergy blood tests

that look for a protein
that your body makes

called IgE antibody that can
trigger that allergic reaction.

Then there's actually a
feeding test which is done

under a doctor's supervision of course,

because if the tests are not so clear

whether there's an allergy or not,

sometimes we have to watch
someone gradually eat the food

to see if they're able
to tolerate it or not.

(gentle music)

- But there is a lot of emotions

that come along with the
diagnosis of food allergies,

because it tends to be something

that can be life-threatening
and when they hear that

for a young child, that
this can be something

that affects them on a day-to-day basis

when everyone has to eat and
be exposed to these foods,

how do you deal with that?

- By the time they drive
home and think about

what am I gonna feed my child for dinner,

it starts to sink in.

This is bigger than I thought.

The doctor says avoid milk,
but as soon as you go home

and start reading labels you realize

that's more than just not drinking milk.

That involves a lot of foods
that you never realized

that milk was in, and it's the
same way with any allergen.

- Um, I never really gave
it much thought before.

I knew it affected
people, felt bad for them,

but I thought well, you
know, it is what it is.

I thought it was along the lines of

you're allergic to cats so
you stay away from a cat.

But now that my daughter
and I are both allergic,

I've become so much more
aware and it's definitely

changed our way of life tremendously.

- It's kind of like getting hit by a bus.

And I would say now, as life progresses,

knowing what can happen to him

if he is exposed to allergies;

I wouldn't necessarily
say it's more like waiting

for a bus to hit you but it's kind of like

navigating a mine field.

- Everything is a danger.

Going to someone's house, you never know

when they're gonna pull out some food.

Learning to have thick skin, to say no.

Being able to identify
all the different things

that could be a danger.

It's everywhere, it's in
soaps, food is in shampoos,

hair spray, lotions.

So our lives have really
changed in the manner

that we've had to
scrutinize everything we do,

everywhere we go.

- The thought of having
a third child has been

a question that my husband and I

have been wrestling with for a while;

because number one we have,
with our second daughter,

we don't know if she's
got any allergies yet

and she's got a five to 25% chance of

developing a food allergy.

So we could potentially have
two food-allergic children

and that's definitely a concern.

With the thought of having a third,

we know we're running
that same risk of having

a third child with food allergies.

It's not the end of the world
but it's definitely something

that affects your life in such a way

that you don't want it to
happen, and it's a real concern.

I had talked to my allergist
about this recently

and he had said that if we
end up having a third child

he would recommend that
I would feed the baby

hypoallergenic formula
for the first six months.

For me that's a personal struggle

because I breastfed both of
my daughters for 15 months.

Everyone talks about how breastfeeding is

the best way to go, and
to hear my doctor tell me

that no, that's not the best way to go,

it's really hard, really
hard to hear that.

So the thought of again, having to forego

all the benefits of
breastfeeding for the chance,

not even a guarantee but just the chance

that the baby might not
become food allergic

is really hard; as well as
the fact that for myself,

I might develop another food allergy.

The ones I have currently
might become more severe.

So it is a really difficult decision

we're faced with right now because we have

very seriously considered having a third,

and one of the biggest reasons
we're leaning away from it

is because of these allergies.

- Families understand
that it's very difficult

what we ask them to do;

and the fears and concerns
we have as parents

sometimes overwhelm what
we may think logically,

and that's difficult.

- [Audra] Yeah definitely,
I'm very anxious about it

and it is stressful.

But when you are faced
with a situation like this

you just take one day at a
time, one event at a time.

If they have a birthday
party to go to, well,

this is what we have to do for it.

They fully understand that
there are certain things

that they can and can't have.

I don't think they understand
the severity of the situation

but they're little, I
don't feel it's important

to tell them it could possibly kill them

if they have this delicious-looking cookie

because to them it's just a cookie

and to me it's a cookie
made out of poison.

- A friend in high school
who died from a nut allergy

and you know, it was a case where

they had a chocolate bar,

which is known to have
nuts, and she ate it.

It was tragic because all her parents,

I'm sorry for going into the details

but this rings in my mind all the time;

that all her parents heard upstairs was

the thud of her hitting the
floor, so that was the end.

It certainly resonates when
I think of that as a parent.

- Every death from an
anaphylactic reaction is horrible.

I've seen it, it's something
that you'll never forget.

To talk to a family
afterwards and tell them

that that's what caused
their child's death

is just the most horrific
thing you could ever imagine.

It's unforgiving and
it will always haunt me

thinking of those situations.

But I have to put that in light of

all the other bad things
that have happened to people

during the day, and the world;

and we can do some things about this

and be reasonable about
this, and that's what I want.

I still go places with my daughter.

I take her to places
where there are peanuts

and we feel okay.

We're protective but we
still go do those things.

(gentle piano music)

Once we diagnose a child
with a food allergy,

the next question is
when will it be outgrown?

- We've had a lot of
people say when Tori was

first diagnosed with the peanut allergy

that oh, well she's gonna outgrow it

because most kids outgrow it.

And we've had people say well, just try,

after a few months just try it and see.

If you give her a little bit
maybe it'll be gone by then.

In the very beginning it was hard

because there were some
people that didn't understand

that this is very
serious, this is something

that she's probably not going to outgrow,

and even a very small amount can hurt her.

- My mother always says to me now,

"Do you think he'll ever outgrow these?

"When will they retest him
again, what's the likelihood?"

I said, "You know, no, unfortunately,

"with the type of allergens
that he has, unlikely.

- [Woman] Very.

- [Beth] Not gonna happen.

- [Woman] Very, very, like none.

- [Beth] So I wish, they'll
retest him every so many years,

but the likelihood of it
going away is very small.

- [Audra] In my children's
case, especially Emily,

because she's so highly
allergic to the foods

that I've said before such
as sunflower and peanuts

and eggs and tree nuts,
there is very little chance

that she'll outgrow those food allergies,

it's highly unlikely.

The only food that her allergist did say

that she would most likely
outgrow would be the eggs,

and that wouldn't be
until elementary school.

- Our daughter Mariel
outgrew her allergies

by the time she was about eight years old.

She then could drink milk and be exposed

to milk protein and egg protein
in a variety of sources,

including eating ice cream
which she is very pleased about.

- And although we do believe

that the majority of food allergens,

particularly milk and egg,
will be outgrown by the child

by the time these children get older,

there are some food allergies
that will persist longer.

And yes, most commonly peanut and tree nut

and shellfish are more life-lasting,

or can occur later in life unexpectedly.

(gentle music)

So as we treat anaphylactic reactions,

our major treatments we have immediately

are things like antihistamines,

medications that block the release of

a histamine-like chemical in the body

to keep these reactions from happening.

That's why when someone
has hay fever or allergies

they use medicines that
block antihistamines.

The second chemical, if
that goes beyond that,

is epinephrine; and epinephrine
is essentially adrenaline.

What we have available now
is injectable adrenaline

which we've used for years in this country

to treat all sorts of physiologic issues.

But in an anaphylactic
reaction this chemical

reverses the detrimental
effects of histamine.

It increases blood pressure,
it causes what's called

vasoconstriction of blood vessels

throughout different parts of the body

or reduces swelling overall.

So it can combat hives,
stomach issues, lung issues,

and of course the heart issues.

Right now our only choice in epinephrine

is an injectable form.

It allows the medicine to
distribute quickly into the body,

enter the bloodstream quickly,

to combat the worries that
we have with anaphylaxis.

But because it's injectable
people do have a natural fear

and apprehension of having
needles placed into them.

- Interesting thing that I
would not have expected is

any child, and most adults including me

would have been not
scared maybe, but at least

a little put off by them coming
at her with the injection,

because they actually
drew up the epinephrine

in a syringe with a
needle that she could see.

She was able to let them do that

and then afterwards said, "Oh,
it really wasn't that bad,

"so now I'm not scared of the EpiPen

"if I had to use it on myself or

"if somebody else had to use it."

- It wasn't a fun feeling
in the car on our way there.

It was getting more and more
difficult for him to breathe

and he was getting more
and more uncomfortable.

So as I was driving he
pulled out his EpiPen

and gave himself a shot
in the leg as we were,

(clears throat) sorry,

as we were driving through intersections.

- [Beth] Red lights.

- [Mark] So I was kind
of running red lights and

made it to the hospital.

- The point is to try to avoid

having those severe reactions.

I mean we know the level of antibodies

that Zoe has to peanuts, she
has a 100% chance of reacting.

We don't want to know if
it's going to be anaphylaxis.

So we're avoiding it completely.

But they have enough experience
to know from these tests

that she has a 100% chance
of reacting to peanuts.

(laughs)

So yeah, we've been lucky and we have not

had to use an epinephrine pen on them.

- You're waiting for
that next food allergic

reaction to happen.

It's going to happen at some
point in time, I know it is,

so the best thing for us
to do is to be prepared.

We always make sure that we
have his medication with us.

Right now we've actually started
to transition that to him

and it's his responsibility
to carry it now.

We have a little case that he carries

and it has the epinephrine injectors and

his asthma inhaler, because
he's asthmatic as well,

and it has his antihistamine in it.

We just make sure that
no matter where we go

when we leave the house,
whether there's gonna be

food involved or not,
that we take it with us.

- [Will] I always have
my epinephrine with me

and a lot of other things,
like I have the epinephrine,

I have my inhaler, I have all that stuff.

I just have a med bag to carry it.

If I'm at school or something we can carry

our backpacks to class.

- [Beth] It's always with him.

- [Will] So I throw it in my backpack.

- So we always have them on hand

in case there is an emergency.

If we're going on a walk, we're not sure

if the girls are allergic to bees.

Because they do have some
of the other allergies

including seasonal allergies,
there's a strong possibility

that they could have a reaction to bees.

So if anything were to
happen along the way,

or if they were to see a
delicious looking M and M

or a piece of candy on the sidewalk

and they pop it in their
mouths, we're prepared.

With a life-threatening food allergy

if there's going to be a reaction
it happens within seconds

and time is of the essence.

You really have to react
almost immediately,

and if you don't have
your medicine with you

it's a life or death situation.

- When we look at fatalities,
when people and children

die of their food reactions,
it usually always is

because the epinephrine was
given too late or not at all.

It's always better to err on the side of

being conservative and offer
the epinephrine earlier,

even at the mistake or the expense of

not needing it at that
point and giving somebody

a medicine that they may not have needed.

For the very young children,
epinephrine itself is

a relatively safe medication when given

in appropriate doses.

The major concern we have
is with older individuals,

older people who have heart disease,

other medical issues have become complex

that too much adrenaline or epinephrine

can cause significant problems.

Thus anything that increases heart rate,

causes blood pressure to go up,

especially an older individual,
the major concerns are

heart issues that come up.

But for the very young
children and young adults

it probably isn't an issue at all.

We would encourage people, however,

if they've used epinephrine
to head to the emergency room

for further evaluation.

There are other medications
that the hospitals

will have available that can be used

if things are not going quite as well.

But epinephrine is a good bridge.

It's a bridge to get yourself
to more medical attention

and it does have approximately
a 15 to 20 minute

working effectiveness and
can be repeated if need be.

(gentle piano music)

Airborne reactions are
probably one of the most

feared types of reactions for parents,

children, and older individuals.

The most common one that's
discussed is peanut allergen

that's airborne, and
there's a confusion between

what's a true airborne allergen versus

just noticing the smell of
peanut butter or peanuts.

Peanuts have a very volatile chemical

that can be smelled
from far distances away.

The true airborne reaction, however,

is typically related to
particle-sized amounts of antigens

that are put into the air in
aerosol forms and inhaled.

That gets absorbed by the
lungs or the body itself

and then causes an anaphylactic reaction.

It can happen, it can even
happen with peanuts and tree nuts

but typically more with
dusty-type environments.

So peanut shells or
hulls at baseball games

are much more likely to cause a problem.

A lot of people always bring
concerns about airlines

and flying on airlines with
the use of peanuts on airlines

and whether or not that can
cause an airborne reaction.

Theoretically it could; however
it's extremely difficult

to create that much airborne
allergen in a particular area.

What's more common
however is an individual

will smell something that is similar to

what they're allergic
to, smell peanut butter.

Most likely what that triggers is a

natural avoidance reaction,

just like you and I would smell a skunk

and become worried that a
skunk is coming into the room.

What's very difficult
though is the initial panic

and concern that someone exhibits;

throat tightening, unusual
sensation in their body.

It's very well often related
to the actual panic of

being in a very scary situation,
and it gets misinterpreted

for an anaphylactic reaction.

People can have airborne
allergens, they can be dangerous,

but are less common than I
think most people perceive.

So although airborne
allergens are the most feared

of all allergens, they're
least likely to happen.

What's more common in very
young children however

are contact reactions,
especially amongst toddlers,

because of the inability to wash hands

and control themselves.

This often gets misinterpreted
for airborne issues,

especially in the very young.

Contact ultimately is
what becomes important,

hand-to-mouth contact of toddlers

which is what we've
always encouraged parents.

Washing hands is probably
your best defense

against these allergens and problems.

(gentle piano music)

- One of the most important aspects of

treating food allergies is avoidance.

One of the key aspects
of that is label reading.

So any time you put
anything into your mouth

or in a child's mouth
that has a food allergy,

you have to make sure that that
food allergen is not there.

This would entail label
reading which is a new concept

for families that are
newly diagnosed with this.

They have no clue before
about label reading

and now as opposed to
reading for calories or fat,

now it's reading for peanut
products or milk products

or soy products.

That's a big change in their lifestyle,

it's a big impact that that can have

and it takes a lot of time to get used to.

- I remember when I first
went to the grocery store

when he was first diagnosed.
- Took forever.

- It took, it seemed
like it took five hours.

I walked into the store thinking,

"Oh my God, this stuff could kill him."

- [Laura] In order to keep
her safe from all these foods,

we essentially when we go grocery shopping

we need to call all the
manufacturers of all the foods

that she eats.

So in the case of her allergy to sesame

unfortunately most manufacturers
in the United States

don't label for it.

So you know, I'm running down
the aisles picking up food,

read the ingredient
labels, and often enough

there's something that
says it's natural flavors

or spices or flavorings,
and I usually end up

having to call them.

So we spend hours on the
phone talking to manufacturers

asking them about their ingredients.

- So what's the story with food labeling?

Well, a great thing
happened in January of 2006

and that's the Food Allergen
Label and Consumer Protection

Act came into effect, and that meant that

different from before, I used
to have to give my patients

like a dictionary almost,
like they were scientists,

that words like casein meant
milk or whey meant milk,

who would know?

Or products that say natural flavors,

well who know what that is?

They're not even telling you.

But as of that law coming into effect,

now the labels have to
say in plain English words

the allergens that might be
in there with some exceptions.

The law covers milk, egg,
wheat soy, peanuts, tree nuts,

fish and crustacean shellfish
like shrimp, lobster,

and crab; and it has to
say the type of tree nut

or the type of shellfish
that's in the food.

So that has made life a lot easier,

it's no more guesswork, it's
no more calling a manufacturer

to try to figure out what
they're talking about.

No more carrying a list of words

that mean milk or egg or soy with you.

You can just look at the
label and figure this out.

Now, there are some
limitations of the current law

which still cause confusion.

First of all, the law
doesn't cover everything.

So if you have a sesame
allergy it's currently

not in the U.S. labeling laws;

it is in the labeling laws
for some other countries.

Currently without sesame on the list

or some other seeds for that matter,

well sesame is kind of like number nine

out of the big eight food in food groups.

So if something said spices,
maybe that company thinks

spices and sesame are
the same kind of thing,

and you would have to call
the company to find out.

I have a sesame allergy,
is this food safe for me?

It says spices and I'm wondering.

- You still have to read
the label every time.

One time you might buy a
certain box of crackers

and you know usually that
box of crackers is fine

but there could be that
one time where they had

an accidental contamination,
or they might have

changed their recipe and as a consumer

we're not aware of it.

- What we are seeing now
though is a proliferation of

statements on labels such as
"may contain an allergen,"

or "made in a facility with an allergen."

Those types of statements
are typically used

when there's a risk because of the way

the product is manufactured,
perhaps it comes

in contact with the allergen
and they can't ensure

that it's safe.

But because they aren't regulated,

we're seeing so many different
versions of those statements

that consumers are frustrated

and some of them are
trying to make choices.

Like well, does made in a
facility mean it's safer

than if it says may contain?

You can't really judge that,

but it's confusing for people

and the bottom line is if
there is a statement like that,

the safest thing is to avoid that food

if you have that allergy.

(gentle piano music)

- Because it does take quite
a bit of time and energy

in preparing food for my children;

I try to make sure because they
have so many food allergies

and allergies to other things

that they eat wholesome foods
that are very nutritious,

that are as close to the
actual form of the food

as it's supposed to be.

I'm finding that the fewer ingredients,

less preservatives,
things like that in foods

tend to react better with them.

- Again one of those things
since you're reading the labels

and you have to be careful
about what you're eating

and we make a lot of
things nearly from scratch.

We're not going off into the fields

and grinding our own wheat
or something like that.

But with that, we have
fun cooking food together.

- [Heather] So that's one thing
that we do cook from scratch

a lot more now because we
know what's going in it,

and that makes us feel a little
more comfortable with that.

- [Melissa] You have to take
precautions in your kitchen

if you do have those
allergens in your home

to make sure that the
cooking surfaces and whatnot

are not cross-contaminated
with the allergens.

- My mommy brings me things
that are really special

and she looks up all the recipes to see

if I might like it, and she bakes it

if it doesn't have anything
in it that I'm allergic to.

Oh, and if I'm not allergic to it

my mommy calls me to the
kitchen and she tells me

if I want to help her, and I do.

First I look at the recipe
picture and it looks good

so I want to try it, and I tell my mommy.

- [Deb] It's important
to focus on preparing

good things that your child
can have and not to convey

your sense of loss to the child,
because the child is happy.

The child just wants to be healthy and

have good foods to eat, and can,

if you work together and have
a positive attitude about it.

- I did go online and
basically found recipe books,

because it was hard to cook
without wheat, dairy, eggs.

Especially the first birthday cake

for Zoe's birthday was awful.

But over time they actually have come out

with a lot of products,
and now you can live it

pretty well if you know what to look for.

(gentle piano music)

- [Scott] In terms of restaurant eating

which our studies show is one
of the biggest areas impacted

in terms of quality of life
and living with a food allergy;

sometimes I'll tell
families to go ahead of time

without their food-allergic
child and talk about

getting a safe meal.

A lot of times families
will find a restaurant

that works real well for them

and they'll go back repeatedly;

but every time they have to
explain what the story is

for their child, just to remind everyone.

- Are you gonna feel comfortable
asking the restaurant,

would they be capable of
cooking a meal for him.

We've done that a few times and

(sighs) both of us sat
there like eagles, hawks

watching him, just waiting
for him to get sick.

- So we try to make things
as normal as possible.

We still dine out as a family.

We know where to go and what restaurants

are more accommodating than others.

We obviously want to make sure

that our children are safe
wherever we take them.

So not only do we go to places prepared,

we have wet wipes, things like that

to wipe their hands off in
case they touch anything.

We avoid restaurants that
have peanuts on the tables.

A lot of steakhouses have the peanuts

where they just shell them
and throw them on the floor;

we know that we can't go
to those certain places.

And we are always prepared with bringing

an antihistamine medication
in case they do have

a reaction, and also having
their epinephrine pens.

- And what we find is very important is

to really clearly communicate
that this is an allergy.

It's not like I just don't like milk,

it's really an allergy.

Those words that I suggest people use are

things like my child is
allergic to this food,

even a tiny amount could make them sick,

send them to a hospital
and potentially even

have fatal implications.

So I really need to be sure
that this food is clear

from what my child's allergic to.

I also suggest using written materials

like a chef card or a handout

that explains a little bit
about cross-contact issue,

food touching other food,
shared utensils, et cetera;

so that the family really
could meander their way

and get a safe meal.

And usually it's fine,
restaurants are very receptive

to making sure that
they're doing it right.

They don't want a problem either.

- Actually that's how
we pick our restaurants,

we pick the ones that
understand and you know

that they're doing something particular.

There's a restaurant here
in Ann Arbor where they,

one day because one of our
children is allergic to wheat,

the other one is not, the
guy in the kitchen came out

and said did you know
that this contained wheat?

The thing that I had
ordered, and I said yes

but that's for the other child
that's not allergic to wheat.

But some people are very conscious

and more and more conscious,
and they will come out

and they actually know.

They have procedures
in some restaurants on

how to cook for your food-allergic people

because it's getting to be more known.

(gentle music)

To make sure that they don't
come in contact with foods,

I guess what we have done
is really educate them.

From early on, that's the
first thing we did with her

was no, you can't eat this,
this is not your food,

you're maybe allergic to this
or you're allergic to this.

She was so little, you know?

One day I was looking at ingredients

on a container of mustard,
wondering if she could have it,

and she goes, "No, I allergic that."

She took it out of my hands,

put it back in the fridge.
(laughs)

- Well as he gets older he
learns more about himself.

One morning I almost
gave him the wrong milk

and thank God he
recognized it and he said,

"Daddy, this is not my milk."

It was my mistake, my mind got
caught up on something else,

the phone rang at the same
time, so I gave him the milk,

this and that, and it was
the wrong kind of milk.

He stopped me (snaps)
right then and there.

And that was very nice,
that was very smart of him.

- Tori's in dance class
and whenever there's like

a special holiday a lot of the moms

want to bring in a special
treat and I think it's great.

I'm one of those moms who wants
to do the same thing, too.

But nine times out of 10
they're bringing in cookies

or cupcakes or candy.

I still remember the very
first time we had to encounter

one of these situations;
Tori was in dance class

and she was only three
years old at the time.

One of the moms was passing
out these Halloween treat bags

and inside of it were
like peanut butter cups

and different types of candies

that had peanut butter
in them, and I saw that,

and that was the very
first time we ever had

an experience like that, and I, you know,

my heart stopped and I thought,

"Oh my goodness, we've got peanuts here."

I took the bag and I said,
"Thank you very much."

I didn't want Tori to have
it because at the time

she still didn't quite understand

that she had the allergy, she
didn't know what it meant.

So I took the bag and I thanked them

and I explained to the mother
that we couldn't accept it.

When I took the bag from Tori she

thought she did something wrong.

She got really upset because
she saw every other kid

had one of these treat
bags and she didn't.

I just, my heart sank because here she is

feeling like she did something wrong.

I made up for it because when we got home

I quickly put together
something special for her

and I promised her when we get home

we'll have a special treat.

So I was able to compensate
for it in that way but

it's true, any party you go to,

especially kids' birthday
parties or any holiday,

it is based on food.

- We tell I would say everybody

that all food is dangerous to
her until proven otherwise.

So we started out by
saying well this is bad

and this is bad and
watch out for this one.

Then the list just go
so big we finally said

she's a smart little girl, big girl now;

she'll get her food eventually.

No food goes in her, or
as best we can control,

unless we know what it is
and we've tracked it down

and everything else.

- [Audra] Madelyn knows that
she can't have certain things

that people give her,
that she can't have candy.

If we go trick-or-treating
it's a little difficult

because there's a lot of
candy and things like that

that she gets.

The first year that we took her out

when she was diagnosed
with food allergies,

Emily was not even one
and she was almost three,

and every door that we
went to she would say,

"Does this have nuts in it?

"Because I can't have nuts."

And you know, the people would
just kind of look at her,

and I'm kind of laughing thinking

she's well-informed at three years old,

it was kind of funny.

But I had to explain to her that we would

just sort out the candy when we got home.

And that's what we did, we kind
of had an exchange program.

I had candy that they could have,

and we just did sort of like a swap

and she was perfectly happy with that.

- Just educating the rest of your family

about food allergy is a challenge.

- I've caught people at
family gatherings before

asking about it.

"Well he can just have a little bit."

No, you know?

No, he can't have anything, you know?

He's very good at it now,

but when he was much much younger

I remember running across
the room to stop my grandma

from giving him a bite of her cake.

She didn't understand, "What to you mean?

"It's just one bite," and
one bite is all it takes.

- The reactions from
our family and friends

have been nothing but just concern over,

especially for Tori's well-being,

wanting to make sure that she's able to,

for example at parties, participate,

and they've found the
right products to help her.

In the beginning people
were not too sure about

what it all meant, and we didn't either.

We thought it was as easy as

just avoiding peanut, avoiding fish.

They've come to understand
now through our education

that it's more than that.

Everyone's understanding
of that and they go

to great lengths to
ensure that we are able to

go to family functions
and have safe things

for all of us to eat.

- People need to share with anyone

their child comes in contact with

that this is a serious matter and

that avoidance is the only way;

avoidance to the allergen is the only way

to prevent a reaction.

- [Harvey] In stages,
what we typically see,

especially in the school system is

the families who are in
kindergarten and first grade

for the first time letting
their children leave the home

are usually the most upset,
worried, and panicked.

- [Laura] Creating a safe
environment for her isn't just

by meeting the teacher for five minutes

and then sending her off her merry way

for the rest of the school year.

It's a continuous education,
continuous dialogue

with the schools.

- Usually I sit at my own table

where I could sit next to somebody

if they don't have any
peanuts or anything.

If they do, then they have
to sit way far away from me.

- We're very fortunate we go to a school

where they understand that,
and so we're able to put in

multiple layers of defense,

and they take all those
layers very seriously.

The fact that they're all present

that's what keeps Katie safe.

It's not a single one,
so we're very lucky.

But we have also been
in various activities

in other schools where
things don't go that well.

- It's so important from all
the way from the school nurse

and the principal, through the teachers,

even the aides, the
janitors, the school buses;

they all need to know about food allergies

and what to do if they see a child

who's having allergic symptoms.

- When we were selecting a school

that was one of our criteria
was finding a school

that was understanding of the allergy,

that had good programs
in place to handle it.

The school that she's at right now,

all of the teachers and staff are trained

on how to handle allergies.

It is not a peanut-free school, however

they take food allergies very seriously

so outside of each classroom
if there is an allergy

they've got a big sign
stating that this is

a nut-free classroom, a
peanut-free classroom.

So she has her medication
right there in the classroom,

the teachers will handle it.

We have a special snack box there.

They also have a
refrigerator-freezer in the classroom

and so they've said we could bring in

frozen cookies or cupcakes to defrost

on days that other kids are
bringing in birthday treats.

They've gone out of their way to make sure

that she's included in everything

and that she doesn't feel
different in any way.

- [Isabelle] And I
remember being so concerned

that she was going to be different,

and we're going to have
to be different things,

and she won't be able
to have the same snack

as the others when they're having a sweet.

We have their own snacks, they don't eat

the same snacks as everybody else.

And not just at lunch,
everything is different.

And the teacher said, "But you know,

"isn't it nice that she can learn so young

"that she can be different
than everybody else

"and it's fine?"

(laughs) You know?

Maybe she won't be such a
follower later, you know?

Because she knows from the start that

(laughs) it's okay to be different.

- [Roger] The other thing was
that she almost recognizes it

as almost like, I'm
special, I get to have this

special thing, which she likes.

So for Zoe it worked very well.

- We have a donut table in our classroom.

It's where our teacher sits, too.

- But you know, I know she's responsible,

I know she's careful.

- [Audra] It's been
rather frustrating because

trying to explain to people,
especially at school,

their teachers, they don't understand

that they really can't
even be around other kids

that have nuts or peanuts or anything

that they're allergic to
because there is a possibility

that they might swap food.

They're little kids, you know?

They might grab something
off of someone else's lunch

and pop it in their mouth, and you'd have

a really bad situation to deal with.

So it's constantly reminding them.

- In his school field
trips, he's actually been

left out of a few field
trips where he's had to

just go to another
classroom during the day.

For instance, the school went to a bakery

and it was just not a
safe place for him to be

because of the milk and
the eggs and the nuts

that they had there.

The kids were gonna be kneading the bread

and that type of thing,
and it just was not

safe for him to go,

and that was a bit disappointing for him.

- So there was a lot of education to do

and teachers are usually more receptive.

(laughs)

Some parents are very receptive
but some parents were not.

When I realized that Mia
was allergic to wheat

and that there were
crackers all over the room

in the daycare where she was, she said

"If you're so concerned,
keep your children at home

"because I'm not gonna have my child

"not be able to eat crackers

"just because your child is allergic."

- In his classroom it's a peanut-free and

tree nut-free classroom.

I think sometimes parents feel it's unfair

for the school to dictate to them

what they have to pack
for snack or for lunch.

I do sense that frustration
from them sometimes.

- People were concerned
that this was infringing on

the liberties of their
own children, you know?

But really, if your
child could die (laughs)

maybe they would just have a
different attitude, you know?

- It becomes so vitally important

that schools and teachers
and other adults and families

support those families at those times,

to show that their child can
do anything that they want.

(gentle piano music)

- The teenagers, well
they're a big problem

for people with food allergy.

We've actually done studies on this

because fatality registries,
so people who die

unfortunately from a food allergy,

they tend to be teenagers
and young adults.

So the risk factor there is age

in addition to them having a food allergy

and often underlying
asthma, and often not using

their medications like
injectable epinephrine

when they need to.

So there you have the issue.

- Of course I try not to do it too much,

but if I look ahead into his life,

if he still has these food
allergies when he's older,

I worry about what that's
gonna be like for him

when he's dating, and
finding a wife that would be

willing to cook for him a
special way, that type of thing.

I worry about college and
sending him off on his own.

So we can just hope that
he's able to outgrow them

or learn how to manage
them well on his own.

- I can see as she gets older,

towards the preteen and teenage years,

I can see how it might be
a little more complicated

because at that age nobody
wants to be different.

Even though there might be
two other kids in her class

who have allergies, it's still gonna

single her out as being different.

So I can see getting
older it might be an issue

but we're trying to instill
as much confidence in her,

and build up her self
esteem so that she can be

comfortable with who she is,

she can accept the fact
that this is who I am.

I am allergic to this, but it's okay.

There's a lot of other things I can do,

a lot of other things I can eat.

So we're hoping by talking about it now

and helping her be comfortable with it

and educating her about it,

that that will hopefully help

prevent problems later on.

- The teenager who,
from our studies, says,

"I don't always carry
my medications with me

"because I think I might not need it,

"so I'm not gonna carry it then;"

or may have a reaction and say,

"Well, maybe this will go away

"and I don't need my
medication," but really they do.

They might eat more dangerously

because they don't want to stand out as

different from their friends.

So that embarrassment or
concern of being different

also prevents them from
treating themselves correctly.

And teenagers are risk takers in general.

So here we have an age group

that really needs extra education.

Teenagers are also venturing
out more on their own.

So we're talking about
someone who might be

going to parties, situations
where there might be

other problems around like alcohol

that might impair their judgment.

Issues with dating, for example,

that they may have passionate
kissing with someone

who maybe ate what they're allergic to

and that exchange of
saliva can pose a problem

if the partner ate something
that they're allergic to.

We found out that teenagers say

that they may not carry their medication

if it's inconvenient, so for example

a stylish purse or tight jeans

that don't fit
self-injectable epinephrine,

that was when they admitted

that they might not carry it with them.

So there are a lot of barriers
that we need to overcome

and educate for when
it comes to teenagers.

(gentle music)

- So just speaking with other people and

knowing that they get
you, that they understand,

because they're
experiencing the same thing

that you're experiencing
is very comforting.

Just knowing that there's
a support group out there

is great for us.

- Knowing other people
who are going through it,

there's a lot of synergy.

So if anyone has a reluctance
to talk to a school

about what they think should be in place

to help keep their child safe,

seeing another family do it,

I mean it sort of inspires
you to do it as well

and I think that's probably the best thing

that comes out of these support groups is

that you inspire each other

to take on these challenges.

It helps us a lot every night.

I see other families and
certain things that they do

and I think, "Well gosh, that
makes a lot of sense to do,

"I should be doing this with our school,"

and vice-versa, so that
would be the best thing

that comes out of it.

- As physicians oftentimes we're limited

what we can do in the office.

We're trying to get the story, diagnose,

do the testing, and deliver at least

the key medical information
that the parents

or the child need to know about.

Part of the reason that I
like to see patients back

regularly is so that we can hit

some more of these finer points.

I always try to pass out
information with regard to

The Food Allergy and Anaphylaxis Network.

It's a great online resource to look at

to explain more about food allergies.

- FAAN was originally founded back in 1991

because we have a
daughter with food allergy

and what we discovered
was that it was a very

difficult process to manage well.

We had done it for a number of years

and decided that it was time
to share what we had learned

with others who were
affected by this condition.

- From our office here,
we provide the resources

but we can't be out there
to hold everybody's hand.

We can't be out there to educate

in every community situation.

So the support groups are
doing that important work.

Families, when they're
dealing with food allergies,

oftentimes feel very isolated.

They feel confused, they need help

from someone who's been there.

And the support groups are there for them.

They are there on a
local level, so they can

get together people who
have common interests

and are dealing with common problems.

They can work together on things

that are going on in
their community such as

educating a school, or
planning an activity

to raise awareness about food allergies.

So they do an important
job, and they're out there

at the grassroots level, if you will.

They're out there with the individuals

who need the support.

FAAN appreciates the work that they do

and we want to help them to do that.

So we are trying to form
a network of those groups

that are out there doing
that important work.

We're trying to bring them together

so that they can talk to each other

and they can learn from each other

what's been successful for you,

what did you do in your area?

And they can work off of
that and help each other.

- I had asked on this online chat board

about food allergies, did anyone know of

a support group in my area,

and she didn't either but she said

maybe we should do something.

So we did get together and we decided to

start a support group.

We went online and found
some different information

from other types of organizations about

how do you start a support group.

So we came of with a name,

the Circle of Food Allergic
Families, our acronym is COFAF.

Basically we put a note up on the internet

and scheduled a meeting for a park,

and we actually had eight
people show up the first day

which was really interesting
and very comforting

to know that there were
other people in the area

that were actually going
through the same thing

that we were going through.

Before I knew it we had 20
people at the next meeting.

It's now been up and running
for about three years now,

and we have over 200 families

from all over the
metropolitan Detroit area

that come to our meetings.

It is very helpful to have other people.

The benefit's far-reaching from

just the emotional support
that you would have.

People find new products all the time

and share that with them, we
share recipes with each other.

If you're in need of finding a new doctor

for whatever reason, that
might be helpful as well.

So I would strongly encourage them

to reach out to other
people in their community

that have it, and if there
isn't a support group

to maybe start one.

- And my mom took me on a food
allergy walk that was special

to raise money for a cure.

- [Terry] Last year we did about 19 walks

around the country.

This year we're hoping to do more than 25.

So it's a way in which the
families can participate

in raising funds for
research and awareness

and education about food allergy,

and sort of to come together as a family

with other families that are
affected by food allergy,

and have their kids feel like
they belong to a community.

So there's a real sense of community.

The families work together
to raise awareness

in their local communities,
on a broader basis.

It's a feel-good opportunity
for the entire family.

Everyone that we've had,
the story is the same.

The people love coming there,
the kids have a great time

and we raise funds in the process.

(gentle piano music)

- Families and grandparents will say,

"Well this has never happened
before in our family,

"we don't understand
why it's happening now."

One of the things to think
about is it probably did happen,

it's just people were
unable to recognize things.

I sit in front of you as
one of the perfect examples.

After my daughter was
diagnosed with a peanut allergy

and my sister's daughter was
diagnosed with an egg allergy,

my mother, after all this 30-some years

finally came up and said,
"You and your sister were

"the most food-allergic
children we had ever known.

"You always threw up when
you ate milk and egg,

"you could never eat milk and egg

"until you were six or seven.

"And even to this day you
still won't eat milk and egg."

It was never recognized.

It probably was the same type of reaction

we're seeing in my own children now.

What our parents and our
grandparents noticed was

probably happening, it
just went unrecognized.

So one of the dilemmas we're
trying to figure out is

the prevalence and increase in allergies,

especially food allergies,
is this due to the fact

that these things are happening more often

or as doctors and scientists
are we getting better at

recognizing these problems?

And it probably is a combination of both.

The medical science definitely suggests

that food allergies and
all allergic disease,

hay fever, asthma,
allergies, are all increasing

just as much as food allergies
in the past few years.

- So it's a huge mystery
as to why are we seeing

this apparent increase in food allergies

and other allergic
problems for that matter?

The only way to really know
if the allergy's increasing

is to do the same exact
study at two points in time,

and actually we did that.

We did a survey study
in the U.S. population

where we were focusing on peanut allergy

and tree nut allergy.

We did that study in 1997 and repeated it

with the same methods in
2003, and what we found was

that for peanut allergy there
were twice as many reports

of peanut allergy in young children

between those two periods in time.

In the UK a similar study
was done on birth cohorts,

also separated by about five or six years,

and they found the same thing.

They actually found a tripling
in positive allergy tests

to peanut, and a doubling
in reported peanut allergy.

So at least from those
studies it seems pretty clear

that there really is an actual increase.

There have been studies also
looking at allergy tests

just in the general
population, and those also

have increased over time in the U.S.

So I don't think it's
just more diagnosis or

just more reports in the news,

I think there really is an increase.

(gentle piano music)

Well what does the future hold in terms of

treatment for someone with a food allergy?

There's basically great news which is

that there's more in the
pipeline now than ever.

It's actually quite amazing
how in the last several years

there are a number of clinical studies,

meaning people getting
treatments to try to

reverse, cure, or at least make life safer

for someone with a food allergy.

The types of treatments basically
fall into two categories.

One is a food-specific
treatment, like I'm going to

treat your milk allergy or
egg allergy or peanut allergy;

or a treatment that would
make food allergies better

and it doesn't matter what the food was.

So examples of some of the studies

that are looking at maybe just treating

whatever you're allergic to,

at the Jaffe Food Allergy
Institute here in New York,

doctors including Xiu-Min Li
who is a Chinese physician

who studied herbal remedies in China

has concocted a food
allergy herbal formula

that at least so far in mice has shown

very good treatment for food allergy.

We're hoping that it's safe
and effective in people

and we're starting to look at that now.

There's also a medication called anti-IgE.

IgE is that protein that causes allergies.

This particular injected medication

lowers the IgE in the
body and there have been

a few studies getting a feel

that this might make life safer, although

you wouldn't be able to eat
the food you're allergic to

but while you're avoiding
it, if you had an accident,

maybe it would make it better.

So there's more studies
going on with that.

In terms of studies
looking at specific foods

and trying to treat, for
example, a peanut allergy

or a milk allergy, there are
already allergy therapies.

For example if you have
an insect sting allergy

you might have allergy
shots for your bee stings.

These have been tried for
foods, like a shot for peanut,

but there have been a lot of side effects.

So people are looking
at different strategies.

So what are the strategies for people

who might have an
allergy and you're trying

to treat that specific allergy?

A vaccine-type of therapy is one route.

Instead of giving a shot of peanut

that might cause a reaction itself,

people are looking at changing the protein

so that it doesn't trigger
an allergic reaction

but still makes you get used to peanut.

So giving that as some
type of a vaccine therapy,

either a shot or a medication
given in another route

like by mouth for example,
to try to teach the body

to gradually learn to accept
peanut or some other food

and not attack it, so that's
a specific food therapy

we call immunotherapy.

Another treatment that's been looked at is

trying to actually feed
the person the food

that they're allergic to in tiny amounts

to get their body used to it,

either by having them swallow it or put it

under their tongue for a while.

These therapies, this
is not to try at home,

are being looked at as well.

Potentially again, they
could cause some side effects

because you're trying to give something

that a person's allergic to.

But under a doctor's supervision
in very controlled trials

we're starting to look at that as well.

- As a society I think
what we're looking for is

some solution and answer
that ties everything up

in a neat bow, so that we can understand

a particular process that happens.

But human beings are complex.

What makes us up as
individual human beings

and what influences lots
of us is very complex

combinations of genetics,
environmental exposure,

timing of exposures, society issues,

and foods that we choose to eat.

For example, why is a certain food allergy

worse in Japan than it is here?

It's a combination of the
genetics, how people eat there

compared to what we eat here.

- The thing with research
is though, it takes time.

And for people who have the allergy

they want a cure today,

they want a cure six months from now

and it takes longer
than that for research.

But when we look down the
horizon it is so promising,

and we're so very much certain

that there will be therapies,
there will be treatments,

hopefully there will be a cure.

There's a lot of very promising things

that are showing us that yes,

we are moving in that
direction, we're just not moving

quite as fast as people with the allergy

would like for it to happen.

(cheerful piano music)

- [Harvey] So children are
the most wonderful examples of

how we probably should live our lives.

The child's innocence usually
is a great indicator of

really how we should all perceive
a potential food allergy.

Most children aren't bothered
by their food allergy.

They live their life the
way that they want to

and are very happy living
the way they want to.

- It is much more of a deal for you

than it is for your child.

You're the one that's dealing
with the frustrations over it

and it's probably more so because

I myself don't have food allergies,

so to some extent internally I think,

"Oh, isn't it so sad that
he can't have ice cream."

Well he can, he just has
to have soy ice cream.

He just has to have something different,

and you don't want your
child to be different.

Unfortunately that's
just the nature of this,

they have to be in order to stay safe.

- They do treat me differently and I feel

that you have to treat me differently

because if you treat me like a normal kid

then they're gonna give me normal food,

and that normal food
could have nuts in it.

So I have to be treated
differently in some ways

but I don't want to be treated like oh,

that's the kid that has food allergies.

- You want your children to live,

I mean they're normal (laughs)

they just have food allergies.

You want them to be able to
live a normal life, you know?

- They don't think of themselves as

any different than other
kids, other than the fact

that they can't have certain foods.

- [Harvey] One of the
most common misperceptions

about food allergies is that this is

a life-changing even to the negative.

People can live a normal life,

they can have a wonderful life,

while having the burden of
food allergies in their life.

It does not end that child's potential of

where they can be, or an individual's.

There are plenty of
people who can tolerate

their food allergies
and live very happily.

It's nothing more than a speed bump.

- It has some significant consequences

if they don't manage it well.

But it's a way of keeping
a very close family unit.

They all work together for the same ends,

and in the final analysis
there's a lot of happy

food-allergic kids out there who grow up

and either they outgrow their food allergy

or they grow into very
happy food-allergic adults.

- So for every extra 10
minutes we have to spend

to figure out is somebody
gonna take care of her

or whatever, the hidden surprise that

because we spend so much time together

we get to be probably closer
than maybe a family would

when people are going
90 different directions.

- My bottom line is that
a family with a child

with food allergy, an
adult with food allergy,

should be able to do just about everything

that the other people are doing

except eat the food
that you're allergic to.

That takes advance planning,
it takes education,

it takes reading resources
to really get to know

what to do so that it doesn't
ruin your quality of life.

- What was a typical normal childhood

for myself and for my husband,

we're just making our own changes here

and making it a unique
experience for our children.

We're not looking at it
as we're taking something

away from them, we're adding to it

and we're creating new fun things and

trying new things with them.

It's just, it's different.

- At the end of the day
when people ask about

how difficult it is to
live with food allergies,

I would assume I sit in
front of everybody here

and my families I take care of,
and I can tell them honestly

I was one of those kids
and it didn't stop me

from doing what I wanted to do.

Unfortunately it's
happened in my family again

with my own child, but
I hope my daughter has

the same experiences I do,
lives life the best she can,

do what she wants to do,

and that it's frustrating
at times as a parent.

It makes me sad sometimes
that I have to see this.

It makes me sad when I'm with my families

taking care of them.

But I'm here, I'm happy, I
think I've done pretty well.

My job is to help other
families understand that

and take care of them with
their children and families

and show that this food allergy
issue is not as concerning

as it should be if the
right tools are in place.

(cheerful music)