>Hi all!  I am new to the group.  I have a two year old son who is fatally
>allergic to milk protien (along with peanuts and eggs).  He is just now
>getting to the point where he realizes he is 'different'.  Any tips out there
>from either other parents who have been through the same thing, or people who
>have had milk allergies all their life?  I would LOVE anything you have to
>tell me.  Obviously, we hope he will grow out of it, but right now we treat it
>as if this is a lifelong thing.
>

Sally - our son Josh is now 11-1/2. He also has life-threatening allergies
to milk, eggs, and all nuts, as well as food-allergy-triggered severe
eczema and potentially life-threatening asthma. We do not expect him to
outgrow any of these.

The trick for us has been to have him understand that he has serious
allergies, but to also have him feel as normal as possible. We have worked
hard to make sure that his food is as much like other people's food as
possible and that when people around him are eating something "special"
that he also gets something special. We have made sure that his teachers
had a stash of special snacks to give him when his classmates bring in
birthday treats, we keep in close contact with teachers to know when there
are food-oriented activities, and we make sure that he understands that if
he has to endure the frustration of watching others eat something and he
doesn't have an equivalent available, that we would soon reward his
patience with something at least equally special. There were times in
preschool where his friends were envious that he got something interesting
and different and all they got was a cookie or cupcake(!).

We constantly try to keep our eyes open for special foods that he can eat.
When I had a special desert on an airplane (I'm allergic to dairy) and I
noticed that he could eat it, I not only saved it for him, but also called
the manufacturer to find out where to buy it. We did the same thing when we
found an egg-free, milk-free, nut-free donut at a roadside Burger King, and
we now order them by the case. You'll find yourself calling manufacturing
companies often, and it turns out to be easier than you might expect - many
food companies are quite familiar with this type of call.

We try every new ice cream substitute and sorbet (watch out for Haagen Daas
sorbet - many types contain egg whites), and try to keep a stock of it and
other delights. Even though most store-bought cookies, etc., contain at
least one of the three allergens, there are numerous varieties available -
mostly the store brands at some stores - that he can eat.

There are numerous food-allergy cookbooks around, with many wonderful
recipes. OUr favorite recipe is for "whacky cake", a  world-war-2 era cake
that was invented to "make do" because of shortages of milk and eggs. It's
a rich, moist chocolate cake made with flour, baking powder, milk-free
cocoa powder, water, vinegar, and oil. Everybody who tastes it can't
believe that it's "Josh-safe."

When you're a kid, having sweet treats is really important, especially if
you're on a restricted diet. We've found ourselves letting Josh have more
"junk food" that we normally would, especially since his diet is so
limited. With his restricted intake, he gets a lot less fat in his diet
than most of his peers, so we're willing to let it creep in via what we
would normally consider junk food.

We also have identified the various restaurants in the area where he can
eat, since eating out is also a special treat that makes him happy and
helps him to feel normal. We've learned how to ask for food ingredients and
how to talk to the kitchen staff. It helps to call or visit in advance at a
non-busy time. We also know that it comes with a certain amount of risk,
and always tell the waiter about the seriousness of his allergies, we
always take his rescue meds, and we're always prepared for the worst. So
far, we've had few incidents. We do avoid all restaurants that serve brunch
(*lots* of eggs) or at least stay away from grilled foods during this time,
to reduce the risk of contamination. This, due to a bad experience :-(

Josh is now 11-1/2. He is well-adjusted, knows what foods he can and cannot
eat, can read ingredients lists, is able to order foods on his own at a
restaurant, can tell when a waiter "doesn't get it", and can self medicate
if necessary. We've always been up-front about his limitations and
matter-of-fact in our discussions with him and with others. We've tried to
model good, competent food allergy management. He has internalized this
quite well, and has become quite competent. (Some of this has little to do
with us and much to do with his personality). We do not hold back
information, and we have not worried about scaring him - his reactions are
much more frightening than anything that we can tell him.

We recently sent him to stay with his grandfather for several days (quite a
nerve-wracking ordeal for us, but great for him). When he arrived, he and
his grandfather shopped together, they went out to eat together, and they
had quite a good time - all without incident. We wouldn't have done this
without first having visited with him several times and definitely would
not have risked it if we did not believe that his grandfather could handle
it. But he, too, has allergies, and we prepped him with a rather
frightening information packet a couple of weeks in advance; he and his
wife rose to the challenge. It was well worth the effort, especially since
we didn't want to deprive Josh of an essential childhood experience.

It's a lot harder to raise a food-allergic child, and some days are worse
than others. But the end product of all of that work can be pretty special.
I know that Josh is pretty special, and so do his brothers, teachers, and
friends.

Keep the faith and don't dispair too much - you, too, can raise a wonderful
kid, even if he is a bit different.

Good luck and good health

Mark
____________________________________________________________
Mark Feblowitz                  GTE Laboratories Incorporated
[log in to unmask]              40 Sylvan Road, Waltham, MA 02154-1120