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FAST's Candid Stories from Parents of Children with Allergies
Looking back now I can trace my son's allergies all the way back to the
womb. Nine months preganant, ready to burst, I was so sick I could not
eat. The heartburn was so bad I stopped using a spoon and would chugg
Maalox and Mylanta right from the bottle.
I ended up in the ER, they thought I was in labor due to dehydration and
were shocked to find I was instead, malnourished! They sent me home with
instructions to eat at least an egg a day, whole wheat bread and as much
yogurt as I could swallow. Guess what, my son is allergic to all of
these things, yet I gagged them down with liberal swiggs of antacids
because it was "for the Baby" Poor kid!
I knew right away he had allergies, the first time I fed him he
developed hives on his face. As an allergic person I do know what a
hive looks like, yet I backed down when the doc said no.
I went home and went dairy free and my son did ok although there were
some up and down. We saw a lot more of the downs as we began to add
solid food. The doc started to nag me about switching to formula, he
felt it was the source of my son's poor weight gain and chronic
diarrhea. I resisted but Mother Nature forced the issue as my son
reached his first birthday, I was hospitalized with meningitis. We had
to put him on formula. Naturally they all made him sick but wer finally
found Nursoy was the one which bothered him least. It gave me enough of
a reprieve to recover my own strength and do some research.
Luckily, my son must have a guardian angel who is like Andre the Giant
in statue ... As I lay in bed recovering and watching TV, something I
rarely do, a local talk show had Dr. Doris Rapp as a guest. She was
promoting her book _Is This your Child?_ I was stunned, everything she
discussed, it was as if she knew us, knew my son. I cried for a long
time and then went to work.
Dr. Rapp's office sent us a copy of the elimination diet along with a
wonderful note of support from the doctor herself. The problem I had
was no pediatric allergist would see us with out a referral. Our
pediatrician refused and said "The only problem you son has is his
mother!" I promptly fired the jerk and set out to find a doc who would
refer. It took another anguishing six weeks, but I found one. He got
us in to the allergist on an emergency referral!
Now I had six weeks on Dr. Rapps diet and my food diary in hand when I
walked into the allergist office. When I told him I thought my son was
allergic to six things, he laughed and told me that it would be
extremely rare, but if I wanted to put him thru all that testing, he'd
do it. We tested 19 foods that day and to my own shock, he reacted to
12. The moment which should have been a truimph, mom over snotty MD,
became my moment of deepest dispair! It finally hit me, how in the world
was I going to feed this poor kid? And the thing that scared me most was
knowing with a single look that the allergist was as clueless as I was!
I left the office and never went back.
The last six, almost seven years have been a real learning experience
for all of us, but mostly for me. I had to set aside my career and
devote my time and energy to figuring out how to piece together the
semblance of a 'normal' life.
Guilt, I got lots. I can't help but pour over the pregnancy looking for
'what I did to make him this way'. On bad days I carry on to infancy and
kick myself for not standing up to the first pediatrician sooner.
Anger, I got more. Anger and frustration at doctors who know little
about how to live with a food allergic infant/toddler and now a
precocious six year old. Often it expands to others; schools,
acquaintences, relatives even who just don't understand what we have to
do to get through a 'normal' day, how much real work is involved to step
out of the door for a few hours, how much crap I have to lug around with
us.
And then there's the impact it had had on me personally ... the career I
once had is now a memory, I've had to refuse job after job and wonder
about what might have been. Meanwhile I juggle, meals, meds.,
supplements and even when he is sick there is no respite. Our doc views
me as the 'expert' fearing what a day at any of our nationally known
hospitals could do to him, so at the worst and scariest I manage in home
care.
But there's no time for feeling sorry. I know we have merely done the
best we could do with a bad situation. And as a silver lining to our
stormcloud, it has afforded me the opportunity to try to embark on a new
career, one I never would have tried were it not for my son. And, I also
have the knowlege we were forced to acquire under duress, which I have
been able to share with others who have found their way to me via the
grapevine. It is bittersweet to see them helped, to watch other
people's kids move back to normal diets while we plod along.
The best thing that has come of all of it is our dedication to our
children and our health as a family. Even if all of his allergies were
to magically disappear tomorrow, we would not go back to eating the way
we did prior to this experience.
Garbage in/Garbage out. We've learned to just say no!
(Jenn Borgesen)
Shortly after my daughter was born, she broke out in a rash all over
her body. My son was also born like this, so I immediately suspected
eczema (his was not food related). Dr. insisted "it's just a newborn
rash, it will go away by the time she is six months old. Babies this
age cannot get allergies." After all, what does a 23 year old mother
know that a 50yr old dr doesn't??
Her rash never got better, it got worse. On her face and head it would
ooze puss and then get crusty. It was infected, but the Dr. said it was
just cradle cap, and to oil her up. Even knowing our family history
(both parents with allergies, me with asthma, brother with
asthma/allergies, and on)he didn't believe it could be allergies. We
tried different soaps, detergents, creams, a determatologist,
everything.
Finally, he suggested an elimination diet (I was breastfeeding to give
her the best chance against asthma and allergies). I went off dairy and
egg, then wheat and soy, nothing worked. I finally got angry and said
"Just give me a referral!!!" She was six months old at this time.
The allergist tried her on a formula (Nutramigin) for a week. She
seemed to get better, so we put her on it permanately. A few weeks
later she was back to the same. He finally sent her for a RAST test,
testing for 13 most allergic items. A few weeks later, a very surprised
Dr. called with the results. She tested positive for all of them. The
nutramigin also contained corn and casein. Amongst others, she was
allergic to corn and milk. The Dr. never gave me any suggestions on how
to deal with this. She was eating only sweet potatoes, Cream of Rice,
bananas and and apple juice. At 7 months old, she didn't even have
formula. I knew I couldn't feed her only these things forever. She was
already small for her age, and she needed better nutrition.
I didn't know how to feed her and even a second allergist didn't offer
much assistance. So I started looking everywhere and reading
everything. All the cookbooks offered such abstract recipes, nothing
she would eat, and all the literature offered only certain food
allergies. I thank God for the
people in FAST because they have really given me hope. It's nice to
know that I am not the only out there dealing with this problem, there
are many others who can offer assistance. Our pediatrician often
comments on how well we have progressed and calls me an "expert" on
learning how to feed her. I guess they thought that I was just going to
sit around and feed her sweet potatoes and rice for the rest of her
life.
I find it very difficult and discouraging when we have to go anywhere
and I have to pack so many things to eat when she should be able to eat
what everyone else is. Or when we end up in the ER and they think we
don't know anything when we start talking about allergies. But she is
only fifteen months and I know it will only become harder as she grows
older. But I'm very thankful for a supportive family , who do their
best to help out and understand, and for my new friends at FAST. We are
going to re-test now in April and I'm hoping for the best!!! (Jeanette
Martinez)
My son Z. was born last June. He is fully breastfed. Since birth he has had
mucousy (stringy, goopy) green bowel movements, rashy cheeks and scales behind
his ears. He sometimes has red rashes on the skin on the inside of his knees
as well. He has never slept well, sleeps in our family bed, and nurses all
night. He used to cry frequently at night and draw his knees up as if he was
in pain. He was not, and is not colicky during the day fortunately.
Z's doctor was not concerned about his bowel movements. Z. gained weight
slowly and the doctor was unconcerned with this. After trying unsuccessfully
to convey my concern to the pediatrician I told him that I was going to try
an elimination diet. He said I could if I wanted to but he didn't think it was
necessary as Z was thriving.
I am a LLL leader and had read about food allergies a little. I have an older
son who is allergic to corn and sugar and seems to behave better on the
Feingold salycilate free diet so I am not completely unfamiliar with
elimination diets. I began with the basic diet, eliminating dairy, corn,
wheat, soy, chocolate, eggs. No improvement. Over the next several months I
kept a food journal and gradually eliminated almost everything from my diet. I
finally talked to someone at the feingold association to ask if there were any
common threads among the foods Z seemed to react to. He still had the mucousy
green bms but the stomach aches were mostly gone.
The person at the Feingold assoc. suggested that the foods Z reacted to
contained salycilates, sulfates, benzoates & artificial colors. When I
eliminated those groups, Z had relatively normal bms for the first time ever.
He still doesn't sleep much and nurses ALL night. Truly. But he is a much
happier baby and the rashes are gone. My diet is extremely limited and will be
until Z weans. He is now almost 10 months old and is just starting to eat. He
can eat rice (including Erewhon rice crispies which he loves) rice milk,
chicken, maple syrup. He has recently eaten kasha and has a rash on his
bottom. It may be too tough for him yet but he's ok when I eat it. He has also
eaten and LOVED watermelon, but that may be the cause of the rash. We'll see.
I can eat chicken, fish and shellfish if fresh or frozen natural, rice, grains
except for wheat, walnuts, cashews, pecans, maple syrup, yams/sweet potatoes,
string beans, lettuce and mushrooms, rice dream ice cream and rice milk,
coconut, pears, kiwi, melon, mango (I think - that may also be the cause of
the rash now that I think of it).
We shall see whether he outgrows any of this. My parents don't accept that
this is real and think I am just displacing my own issues with food on my
children. This is a real problem. I don't know what Z will be able to eat as
he grows and expect him to nurse for years. My mother is worried about my
health and I haven't been able to take any supplements yet. I would love to
hear from others with older children in this situation. Please email
rachelpk@juno.com.
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