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This is a FAQ just for parents whose children were recently diagnosed
with food allergies, written by parents with allergic children. It may also be of help to adults recently diagnosed. Remember that all
of the information and advice here is from mothers...not medical practitioners. It's
like talking to another parent in a support group, not a doctor. This isn't a survey,
so please don't send in questions or answers. If you have other questions,
join the FAST Mailing List. We'd all love to meet you!
Questions (and some answers) by Kathy L.; answers byJen M., Jakki, Noreen Evans,
Carol, JennB - mother of a son allergic to 12 foods, and Sharon
. 1) Where did this come from (hereditary, ozone, pollution, pregnancy,
who or what is at fault ...)?
My husband and I both have food allergies so we would say heriditary but this does not hold true for all other cases. Basically there is no
one known cause and no one is at fault.
From what I've read it seems to be hereditary, and some
studies have shown that eating certain foods while pregnant can cause a
child to be allergic to that food.
The origin of allergies is not clearly established. It is not necessarily hereditary (I have one allergic and one non-allergic child), but often
allergies do run in families. Sensitization to allergens can occur during
pregnancy, as it did in my son's case. I ate peanut butter every day for
breakfast and drank lots and lots of milk. I breastfed him from birth and
he was born with hives. They didn't go away until I stopped eating the
foods he was found to be allergic to.
Unknown. My daughter is adopted from Peru.
There is no real "fault" when it comes to allergies, at least no more than you can feel guilty for the color of your child's eyes or the color
of your hair. The predisposition toward allergies is genetic in nature, especially if both parents have allergies in the family. Exposure to
certain environmental triggers can also increase the likelihood of your child developing allergies and/or asthma. So good environmental control
(limit exposure to dust mites, mold, pollens, animal dander, etc) can reduce the chances or severity of allergic disease!
2) Will my child outgrow this?
My research has shown that some, but not all, do outgrow food allergies, but not peanuts or nuts.
Although some allergies tend to be with us for life (peanut is a good example), others tend to lessen or disappear as our children grow older. There are no rules though.
Unknown. But we always have hope. Most likely life long.
The term "outgrow" is kind of misleading. Ungrow is really a better
term. By strict avoidance of all forms of some allergic foods for a
period of up to two years, you allow the anitbody called IgE, which is
the source of the allergic reaction, to die off. At that point the
offending food can sometimes be reintroduced. Milk and soy are the most
common foods to which allergies can be "ungrown." Fish, shellfish, tree
nut and peanut allergies, however are generally lifelong allergies.
3) Will they get new allergies?
Again this is not definite either way. Some children do develop new allergies while some don't.
It is very possible for anyone to become allergic to new things. If
exposed to the same food day in and day out that can increase the chance
of a new allergy.
I suspect that in the highly sensitive individual, sensitization to new allergens is always possible. However, my son is still only allergic to the
items identified in the skin test he had at 4 months of age. He is now 2 years old.
"Ungrown" food allergies can reappear or new ones can be developed later
in life or during periods of stress or prolonged illness.
4)What can I feed him or her?
This all depends upon the allergies. You must eliminate the foods
that s/he is allergic to from his/her diet.
The best way to feed a food allergic child is to use the rotation diet
which is listed in "Is This Your Child?" by Doris Rapp, M.D
As I'm sure all mothers of allergic children know, you MUST avoid COMPLETELY all traces of the food item your child is allergic to. This may seem like
it eliminates everything you eat, but there are alternatives.
Unfortunately, we are all busy and allergic children require that you do a
bit of extra food preparation, but once you get started and develop a suite
of recipes they like, you are well on your way to conquering the problem.
My son (dairy, egg and peanut-allergic) has a varied diet thanks in large
part to the FAST web site and the support of other mothers on the mailing
list.
Each case is unique. Some kids tolerate some things while others seems
to get set off by the tiniest thing. The easiest thing for me was to
begin with the foods I knew he could have. In the beginning my son lived
on rice cereal (Beechnut, Heinz or Earth's Best -- all others made him
ill due to the lecithin/soy added), Nursoy formula, sweet potatoes,
potatoes, turkey hot dogs/bologna, rice cakes, apples, bananas and
margarine! We were shocked when the nutritionist found he was not
deficient in ANY nutrient but instead he was lacking sufficient
calories. From there we added foods and brands slowly and kept a food
journal to track reactions.
5)I'm overwhelmed - where do I start?
Talk to you child's doctor. If s/he is not well versed in food
allergies see an allergist.
If you have internet access there is an enormous amount of help online. The library also has books that can help. I asked the pediatrician for a
list of books and the best one that I've found is "Is This Your Child?"
by Doris Rapp, M.D. This is my food allergy "bible."
Start here! The support, help and "word of mouth" from lists sites like this one made my life bearable for the first few weeks after we discovered my son's allergies. Depend on the experience of others who have "been there and done that" and you will have a huge head start. Figure out what the allergens in a recipe are contributing to the food (eg. levening agent, thickener, flavour) and ammend all your favourite recipes once you learn the substitutes that work best.
This is one of the best places to begin. Join the FAST mailing list,
there are lots of members with years of experience in living with food
allergic children. There are also other sites which deal with individual
allergies (no milk, egg free, gluten free, etc.). Check out your local
library also. There aren't a lot of books out there but forewarned is
forearmed.
6) Where can I locate premade food, so I don't have to cook everything from scratch?
Simple homemade food are the best to start with. This way you have complete control over what they eat. As you learn to read labels you will find many premade foods but you must be very careful reading labels.
Health food stores are very helpful and can order almost anything. The Whole Foods Store is a "health food" grocery store and this is where I find foods such as hot dogs and ice cream substitutes.
This, of course, depends on the allergies your child has. I find some bakeries make bread without eggs, dairy or nuts and I can also buy things from the health food store (expensive). I find the cooking doesn't really take all that much time though, and I work full-time and have two children.
No you don't HAVE to cook everything from scratch, but it is absolutely
the only way you can be certain there is no cross contamination of your
child's food. There are a large and growing number of companies that
cater to special diets, EnerG Foods, Imagine Foods, Eden Foods, and so
on. These products can usually be found at health food stores and can be
quite pricey. One way to reduce the cost of these items is to join a health food
co-op. To find out more see http://www.cooperative.org/foodhtm for U.S.
companies and http://www.columbia.edu/~jw157/food.coop.html for co ops
worldwide.
7)What is the best formula/source of milk/calcium?
Speak to your allergist or doctor about this. They are best informed.
Sesame seeds are a good form of calcium. I also use Buffered, Powdered Vitamin C which is high in Calcium, Potassium, Magnesium. This is also a
good remedy for accidental exposure to food allergens. This can also be purchased without corn at the health food stores.
My son is NOT allergic to soy so I gave him a soy baby formula until he was a year or so old and then I switched to calcium-fortified soy milk.
Calcium fortified Rice milk. 1 Tums a
day and lots of broccoli.
Again, that depends on the child's particular allergy and their age. My
son had a milk/soy/corn allergy so there was not a single formula
without one of these three ingredients. In the end we had to use a soy
based corn-free (Nursoy which is no longer on the market) formula. We
continued using it till he was three because he was having difficulty
with growth and weight gain (due to the low calorie nature of his diet)
the formula was high fat and helped us get those extra calories into
him. When he was three, Rice Dream Enriched became available and we
switched to that but we also added 2T of canola or safflower oil to each
quart.
To my knowledge there is currently no formula that is completely
milk/corn/soy free. Some children can tolerate the hydrolyzed milk
protein formulas, Pregestimil, Nutramagen and Alimentium. Soy formulas
include Alsoy and Follow Up Soy but these do contain corn as well.
NeoCate is a prescription amino acid based formula and again it contains
corn. For very young children, you really need to work closely with your
doc to find the formula that is the best fit for your child.
8) What nutrients is my child missing - calcium, protein, etc.?
You will have to evaluate this based on the allergies your child has. We get all the calcium from the soy milk and he eats meat so the protein is taken care of. If you can get them to eat some grains, fruit and meats, you are doing well!
Noreen had a great answer. [It is] best to check with a licenced dietician who specializes in special needs diets.
We consulted a nutritionist early on and were stunned to discover that
my son, allergic to 12 foods
(milk/egg/wheat/oat/soy/corn/pork/fish/peanut/tomato/peas and citrus)
was not deficient in ANY nutrient. His zinc was low and he was receiving
adequate calcium. Instead he was not getting enough calories! We increased his fat intake
to 30% and his protein to almost 15% in a effort to get him the calories
he needed to be an active toddler and grow! Seven years later we still
make sure he gets enough fat and complex carbs. We know when he doesn't
because he will begin to crave margarine!
9) How do I read a label/know what alternative names are? How do I know which ones to avoid and which ones are okay?
The Food Allergy Network offers small laminated cards listing all the names for various food ingredients for the most common allergens. These are great to take shopping with you.
Research via the Internet can be the easiest way to find out the hidden names of allergens, unless you can find someone who has the same allergen. The food elimination diet is a great way to find out severe reactions vs. mild or no visable reactions to the allergen.
I got a great list of dairy, egg and peanut equivalents, and there are now more sources of great lists on the web. I carry cards with all the names of alternatives in my wallet and consult it in the grocery store when I'm in doubt. If the name is on my list of dairy or egg or peanut offenders, I don't buy.
10) How do I find a good doctor/allergist?
If you trust your pediatrician/family doc speak to them first. Also, talk to friends family and others with allergy problems for references.
The pediatrician can usually best refer you to a good allergist.
My family doctor recommended an excellent one, but I think this was the exception, rather than the rule. The best way is to find another parent in your area who likes their allergist and go there.
I would highly recommend an allergist who is Board Certified. These docs
go thru extra training, exams and continuing education. Find a Board
Certified Doctor by contacting
Am Academy of Allergy, Asthma and Immunology at
http://www.aaaai.org
or
Allergy and Asthma Network/Mothers of Asthmatics
http://www.aanma.org/
11) Where can I find good recipes?
FAST -- https://www.angelfire.com/mi/FAST offers some great recipes. Please be aware, you don't need all new recipes, you need to learn how to substitute allergic ingredients from your favorite recipes.
The Internet has several food allergy sites that you can find recipes to try and adapt. Once you're familiar with the foods to avoid you can easily adapt almost any recipe to fit your needs. I substitute water for milk and maple syrup for corn syrup. I also use sea salt which is naturally idoized and doesn't have corn in it. Getting on a bulletin board with others who have food allergies can be a great way to get specific recipes, all you have to do is ask and everyone pitches in to help.
[The FAST mailing] list is one of my best sources of recipes. I have three recipes books for allergic individuals but I have only ever found one recipe in these that we like.
FAST recipes pages, Newsletter, Mailing List and both FAST and Online
Resources have a recommended book list. And don't be afraid to
experiement a little!
12) How do I get my family/friends/school/church to take these allergies
seriously?
My sons food allergies are life threatening so I have made that very clear to all. At daycare I speak to every new teacher my son sees. I have an emergency plan in place and I try to keep everyone up to date with articles and pamphlets.
Putting together some material that shows studies and reactions to foods can be very helpful. This can also help you to know that you're not alone.
Explain the gravity of the situation and the seriousness of a reaction and hope they are listening. If they don't appreciate the importance of total avoidance of the food, you could try getting some educational material (eg., videos) from organizations. Keep trying, and be "in their face"on the issue, but also weigh the importance of the relationship you have with these people/organizations against the fact that they don't respect you enough to honour such a fundamental request.
We talk to them and explain that our daughter can die if she
ingests any of the foods she is allergic.
Boy that's a toughie ... I still struggle with this especially because
my son now looks so health and active! People refuse to see that he is
healthy BECAUSE we are so strict with his diet.
I have had to become very stern and direct about my son's care. Family
and friends are the hardest because you must be polite but I have had to
become VERY angry on occasion and remind the offender that just a taste
can kill, maybe not this time, but the risk is always there!
Where school is concerned I put as much as I can in writing, including
an emergency action sheet with my son's picture on it is posted at
strategic locations throughout the school so subs and food service people
can quickly recognise him.
I also spoke at length with our school nurse and showed her a food allergy school lunch program. She was so impressed she convinced her boss to buy
the program for the ENTIRE DISTRICT. She runs a staff inservice on food
allergy at the beginning of the year and demonstrates how to use the
EpiPen. She and I also did a lesson for my son's class during Food
Allergy Awareness Week. [This is held by Food Allergy Network once
a year in May.
13) How will my child be affected - socially?
I work hard for my son not to be affected socially. He has lived this way his whole life so he doesn't know the difference.
My son is only two years old so I can't comment directly on this. I think there is always going to be an element of teasing when someone is different, but it could just as easily be for wearing glasses (as I did from age three) as from food allergies. Teach your child to be strong and confident enough to choose friends who understand.
We try to make foods for her that look similar to what the other children eat. Also, the other children have
been very supportive to our daughter.
By and large my son is a normal seven year old. We do have to be careful
about outings and I often pack meals and snacks for my son when he has
play dates and other outings. He is a very happy social kid. We have
experienced bouts of peer related sneeking but he created his own
punishment really, the discomfort wasn't worth it. None of his friends
have teased him, in fact many are jealous because his stuff looks and
smells better! The only real downside is that he cannot buy breakfast or
lunch at school like his friends. But on special occaisions the lunch
room supervisor will place a lunch I made on a disposable tray for him.
14) How do I handle special occasions/holidays/restaurants?
I carry what my family calls the bottomless bag. It is filled with
all of his favorite foods and juices. When we go anywhere this goes with us. When it is time to eat I let him choose what he wants. I also always have Benadryl and an EpiPen in this bag just in case.
Always have "safe" foods available when going anywhere. I keep a backpack filled with snacks, and if we are dining out I'll fix a special sandwich
as well as call ahead to make sure they have something he can eat so that he feels as if he is involved.
The only restaurant we eat at is McDonald's because I know what is in the food and I know what is safe for him. It is relatively predictable from one restaurant to the next. I have still had to administer Claratyne once when he ate a burger which had obviously come into contact with an allegen (cheese?). When in doubt, bring your own food or bring something in advance that they can warm up for your child and bring to the table with everyone else's food. I cook all the food over holidays and we live on the other
side of the world from our family so family get-togethers are not much of a problem! I bake all the cakes for everyone's birthdays and they are always allergy-free so my son can share some too.
A little more of a challenge but we will either bring our own food or we bring food to the restaurants and
she will have the salad bar.
[It] depends. Most family/friend/work or school related event I bring what he
needs. We even keep emergency rations (a box of granola bars, juice and
milk boxes) in the car in case we get tied up somewhere. Some family
members are great about having or making stuff he can have, others are
not. We've only begun to frequent restaurants in the past two years. We
usually eat at McDonald's and Boston Market but at nicer restaurants we
order him a steak or hamburger patty, salad (no tomato or dressing) and
a baked potato. I bring his drink and margarine along with us. We are
also VERY explicit in explaining how his food is to be prepared. And of
course, we always that that Epi Pen handy. 15) Have you ever used the EpiPen? What should I expect?
Though we've carried one for four years, thankfully we've never used it. Keep the expired ones, and practice using them on an orange or grapefruit to get the feel of the "kick" it puts out. Ask your doctor how to use them properly, how long the drug lasts, how often it can be readministered, and so on. Many people are carrying these life-saving devices around without instructions.
We have been so strict in his diet at home that the few times he's accidently had something the reactions have been uncomfortable, but not life threatening.
My daughter (17 y.o.) ate a brownie with ground up nuts and had to inject herself at dance class. She injected it in the upper thigh right through the tights. She did not complain about it hurting. She was upset that it bled a little. We went directly to the emergency room and she was treated there with injected Benadryl and inhaled steroids. She was there about five hours and released.
16) How do you prepare the schools/babysitters/daycare for your child?
Educate, Educate, educate. This is your job as a parent. Find all
info you can, read it and share it. Only use babysitters you trust completely.
I leave lists everywhere at the daycare on emergency procedures (with his picture) and I have a mobile phone on at all times so I can always be contacted. I closely monitor the pantry of the daycare kitchen for items that contain his allergens and have the cook call me if he has any questions. I have evaluated the entire menu at the center and gone through all ingredients with the cook. I provide alternate meals for my son when I know there is gong to be a need and I provide a mock cheese spread which the cook can use in lieu of cheese in some recipes. I am lucky to have a center where the staff is excellent, sensitive to our needs and considerate of my son in every way. All I can suggest is that you are NOT passive and stay very high profile on the issue.
Our babysitter apprenticed with us while I was at home until I felt confident she understood what needed to be done. Start early, well before
your child begins to attend so you have time to meet with all the folks
who will have contact with your child ... yes even the art teacher!
Peanut butter, corn and egg whites are common art project ingredients!
17) What about boy scouts/camping/overnights?
Don't push yourself to let go before you're ready, but it is best to
give your child an opportunity to take responsibility in little steps. Remember, when s/he's a teenager, if s/he still has allergies, s/he'll be caring for his/her own health more and more. As with any caregiver, be sure the counselors and other adults are trained and prepared - to avoid an accident and to handle an emergency.
I speak to the nurse, the principal and the teacher about my daughters allergies. I spoke to the camp director in January and was able to arrange the menu for
my daughter. I did bring all her food and the camp did speak to the EMT'S
as well.We eat everything that my daughter eats with an occasional treat for the
rest of us. We don't want her to feel different. Besides, I do not want to
make several meals.
I sent my daughter who was 8 to girl scout camp and called the camp director and camp nurse ahead of time to monitor diet. She wore the medic alert bracelet. I was nervous and by the phone all weekend. They were very careful and she had a great time.. This year she went on a retreat with her class. I called ahead to the manager of food services and the school coordinator and nurse. They checked the ingredients for allergens. They gave me the labels and menu. I packed a cooler full of alternatives, a diet alert card, and the EpiPen and Benadryl. I called ahead several times to check and assure myself they understood the severity of reaction in case of an accidental ingestion. Again she had a good time, no problems occurred. On overnights with the girl scout troop I was always the mom who chaperoned.
18) Should the rest of the family eat what the allergic child cannot or should everyone abstain?
My son has never had a problem with other people eating the allergic foods around him. He has had very serious reactions in the past and knows that these were caused by food. We just make sure that we have plenty of good tasting and nutritious(when possible) food available for him.
With a small child I think it is best to start out eating the same foods and gradually add other foods to the non-allergic members can have and always have a food to substitute for the allergic one.
Most of our food is now allergy-free, except for pure milk and cheese which the rest of us eat and my youngest cannot. He has soy milk and a "mock" cheese I prepare for him instead. Occasionally my eldest son can have an item of food that his brother is allergic to (like milk chocolate), but only when his brother is asleep. My eldest know all of his brother's allergies and is very protective of him. I think that part of being a family is supporting one another through times like these. No one is suffering for not eating eggs or peanut butter and the risk of accidental exposure fro having these items in the house is not worth it to us.
Obviously we could not all adopt Rigel's diet ... it was just too strict and expensive! I try to modify as much as I can. I prepare meals as far as I can without adding the things he is allergic to and then separate
out a portion or two for him before continuing. Also, when I do make
meals we all can have I make and store extras to pull out on nights when
we do not eat the same. Some foods, like fish we no longer cook at home.
For a long time we also could not peel oranges in the house with out
having him react. The most important thing to do is to make sure they
have alternatives that are as good or better than what you are eating.Eating something different makes them special.
19) If I have other children, will they be allergic too?
I have one who has allergies and one who has none.
Maybe yes, maybe no and maybe later. By adopting good in-home allergy control you can reduce the likely hood of subsequent kids developing severe allergy. Research has linked the development and onset of asthma
with early exposure to dust mites. Working to reduce the allergic load experienced by everyone in your house can help all family members to enjoy improved health.
20) What about the other problems I'm dealing with, like eczema, asthma, reflux, delays? Anyone else whose allergic child has these?
My sons eczema cleared up once I removed the allergic foods from his diet. He has severe asthma and receives breathing treatments daily. Mothers of Asthmatics and the American Lung Association both have wonderful, informative websites.
My son has skin problems (eczema) if he eats dairy products but so far, no asthma. The one with no allergies has asthma, however! Go figure!
My daughter does have acid reflux. I guess this is something that is not uncommon.
Some of these are pretty common. Eczema (atopic dermatitis) and food allergy have also been linked - in a recent study kids with eczema were skin tested for common food allergens and 30% displayed positive reations! That's huge, especially when you consider skin testing is only about 50% accurate. Current studies are also looking a pediatric reflux and food allergic connections. The next few decades could present some startling findings and perhaps real therapies.
21) My child is allergic to so much - I feel so alone - anyone else out there dealing with so many allergies?
We are dealing with multiple food and enviromental allergies. The
more informed and involved you become the less alone you will feel.
My son is allergic to beef, pork, chicken, corn, milk, beans/peas,
peanuts, celery, white potatoes, bananas, apples, mold, dust mites, dogs
and cats.
You are not alone and this site proves it. There are many, many of us going through the exact same thing. If we all hang together, we will all pull each other through. It is tough and scary having children with allergies and we'll never be able to protect them 100% of the time. We can only do our best.
Lots of us and more coming every day. Allergic diseases are on the rise and as are deaths attributable to asthma, once considered a nuisance or
psychological disorder! FAST is a good place to connect with these folks.
22) Has anyone found that another disease was first diagnosed but is not really the problem?
My son was suspected of having ADHD because of his allergens.
My son's first pediatrician felt he might have irritable bowel syndrome and refused to discuss food allergy as a source of his many symptoms even with my own history of food allergy and asthma. All the spitting up we found so amusing, was probably reflux (my husband has this as well).
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