Wednesday, October 22, 2008

Childhood Allergies

Tharini at Winkie's Way circulated an impassioned e-mail a few weeks ago asking for stories of childhood allergies and how to deal with them. Although I had not experienced them first hand with my children (touch wood), food allergies are so ubiquitous that there is no escaping their impact on everyday life - the food you can pack for your children is restricted by what food allergies their classmates have (the most frequent I've encountered is no nuts of any kind in my son's lunch bag), food to be served at parties involving kids (or sleepovers or playdates) must be vetted beforehand with the list of attendees.

Over the years, we've also seen our friends Sushama and Shyam struggle with this issue from the day their son was born. He was allergic to every single food, even breast milk. Each time we got together with them, we would hear the latest on what they had found out from the doctors, what they were going through and how Aneesh was dealing with it all. We would see them keep a watchful eye on him every time he tried something new. We would see them rush home to deal with a sudden reaction. Slowly we saw their confidence grow as they got a handle on the issue and felt they could deal with what they had been handed.

As he grew older, we also saw Aneesh starting to check with his parents first before putting anything in his mouth, and never make a fuss if he was told not to eat something - usually at gatherings these were things like chips or cake that the other kids were chowing down with no second thought. It was a lot of growing up for a small child. I realized that bringing up Aneesh involved (in addition to all the things parents not facing this struggle go through) not only being vigilant about what he can and cannot eat, but also educating a young child about his condition.

I asked Sushama to write about her experiences and she agreed. Her essay (titled "Nobody is Allergic to Rice" - a myth she and her husband had the experience of debunking first hand) and a table of facts about allergies and what she learned from them appear below.

More posts on this topic are in the pipeline across a few blogs. I'll link to them here when they go up. Thanks to Tharini for starting this off and thanks to Sushama for being willing to rake up some painful memories.


"NOBODY IS ALLERGIC TO RICE" - Sushama Acharya

The Pediatrician, the Dermatologist, The Allergist, The Pulmonologist, The Nutritionist –every one of them told us that: “Nobody is allergic to rice. It is the most basic of all grains. No child is allergic to rice”. I walked out of every one of their offices telling my husband Shyam, “They are so wrong”.

The first time I fed Aneesh Gerber rice cereal when he was six months old, was also the first time I felt the real fear of losing my child. He ate a whole bowl of cereal, and without warning, threw up the entire amount through his nose and mouth. He started gasping for breath while I cried on the phone to a 911 dispatcher. I was convinced he was allergic to rice – despite all the specialists in town telling me otherwise.

Within the first week of Aneesh’s existence it became painfully apparent to us and his pediatrician that there was something terribly wrong with him. He was covered from head to toe in rashes and his skin looked “weird”. After a slew of speculation, a battery of tests, and visits to every pediatric specialist in town, by his sixth month, Cancer was ruled out (Thank God!). The consensus was food allergies, although nobody could tell us what exactly he was allergic to.

They say a mother’s instincts are always right. And they couldn’t be more correct. After convincing his (second) Allergist to do a blood test in his 10th month, I was proven right. Aneesh was allergic to rice… and wheat…and dairy…and soy…and nuts…and most vegetables…and most fruits. The only saving grace was that he was not allergic to oats. Being strict vegetarians, we were out of ideas on what to feed this child. He lived his first year and a half on three major foods – Alimentum (a special formula for allergic kids), carrots, and apples.

In retrospect, his first year was the toughest for him and for us.

NO TURNING BACK

Strict vegetarians and strong theists -- that was our identity in the second year of Aneesh’s life. Two things dominated our lives that year – Aneesh’s nutrition, given our vegetarian diet, and our belief in God. Our parents, siblings, and friends were our pillars of support. They prayed for Aneesh and suggested various treatments and recipes. My in-laws did special poojas for his health and even sent us a talisman. We tied it around Aneesh’s waist. On one of his doctors’ visits, the nurse asked us if the talisman was helping and if he was getting better. Shyam said, “We don’t know about him, but it sure is helping us.”

By now, we had learned not to panic. We had spent endless hours researching food allergies and trying to find alternate treatment. We knew that most of Aneesh’s allergies were probably not life-threatening.

And then one day, I cooked and mashed a little potato, and gave it to him in a spoon. And I witnessed a miracle. He ate it and nothing happened. I remember running to find his allergy report. There it was in plain letters – he was allergic to potatoes. My initial confusion was replaced with a certain confidence. What if the report was not accurate? After all, his Allergist did tell us to experiment with small amounts of different foods. So, I started cooking a different vegetable every day and feeding it to him. Although he was still allergic to most of them, it somehow made me feel like I was helping him.

That year we started Aneesh on two things that I believe reversed his condition -- homeopathic medicine from a doctor in India, and whites from eggs with a high Omega3 content. After a couple of months of starting him on these, I noticed he was less fussy especially at meal time. Armed with my new-found confidence and my friends’ suggestions, I started experimenting with different grains. Wholefoods became my favorite store to shop.

Although he was still allergic to most foods, Aneesh’s second year was definitely his “Jump Start” year.

“MUMMY, WHY CAN’T I EAT CAKE?”

The first time he asked me that question at a friend’s birthday party, I fought hard to hold back my tears. How could I explain to a three year old what food allergies are? More importantly, how could I explain it to him, and still make him feel like he was just like other kids in many ways?

Aneesh’s third and fourth years were probably the years that drained my energy and challenged my sanity the most. By the time he was three and a half, he had outgrown his allergy for rice, wheat, tapioca, some vegetables and fruits (what a blessing!). But he had also learned to talk and understand that he was “different” from other kids. At birthday parties, he got his “special pizza” and cup cake, and was still not allowed to eat what his other friends ate. He had started going to a Montessori, and was not allowed to get lunch from the school.

I started talking to him about his allergies and his reaction to various foods. I learned to answer his questions patiently. “Why can’t I eat cake?” “Because you are allergic to stuff that is in the cake. When you grow up, you will be able to eat it too.” “But why am I allergic and not my friends?” “Because they don’t fuss over their food, and they eat what their moms give them. If you eat without fussing, you will outgrow your allergies too”. “Why don’t you and daddy have allergies?” “Because, not all people are alike. We all having something or other that is not right with us. Daddy and I need glasses to see things clearly. You don’t.” “What will happen if I eat cheese?” “You will throw up and start itching all over”. This last question was repeated so many times, that one day we sat him on the kitchen counter, set a bottle of Benadryl next to him, and gave him a 1 millimeter piece of cheese. Before even swallowing it completely, he stuck his tongue out and started panting. We stuck a spoonful of Benadryl in his mouth and told him, “See what happens when you eat cheese?”

It has been over two years since that incident, and I have not heard the “cheese question” from him again. Sometimes, “tough love” works.

When he was four, my son did me proud. At a friend’s birthday party, the lady serving the kids put a slice of cheese pizza on his plate before I could get to him. He told her, “No, thank you. I am allergic to cheese. I cannot eat this. My mummy has brought my pizza for me.”

I knew then, that my baby had become a “big boy”.

Shyam and I made a pact with each other. We would not “baby” this boy any more. He had reached a point where he was capable of understanding his situation and accepting it. Although we had always told him that he was just like other kids, for the first time, we started to believe it ourselves. For the first time I thought that maybe, just maybe, he will do alright in a public school without someone supervising him at lunch time.

Also for the first time since his birth, Shyam and I entertained the thought of a real vacation.

THERE IS HOPE

When he turned five and a half, we took Aneesh to India after four years. The last time he had been to India, he had suffered several allergic reactions, and we almost lost him to a respiratory infection. This time was different. He was able to eat a few Indian foods and stayed healthy through the month long trip. I carried some of his foods and snacks from here, but it was worth the effort. For the first time since he was born, we had a real family vacation.

I think back now to the day I fed him a bowl of rice cereal, and say, “Thank You, God”. His doctors will tell you that Aneesh is still allergic to dairy, soy, nuts, some lentils, chick peas, and kidney beans, although to a much lesser degree. If you ask Shyam and me, we will tell you he is no longer allergic to rice, wheat, some lentils, most vegetables, and fruits.

If that isn’t hope, what is?


FACTS AND WHAT I LEARNED FROM EXPERIENCE
  • Fact: 30% of all children born in the USA suffer from food allergies. That is one in every three children.
    Experience: The US has the most number of grocery stores that carry foods to meet the needs of allergic children. Wholefoods, My Organic Market (MOM), and ROOTS are all stores that are easily accessible and “allergic-kid friendly”. Their staff is trained to help parents find specialized foods. They can help me find foods that I didn’t even know existed.

  • Fact: Doctors speak from scientific knowledge and experience.
    Experience: A mother speaks from instinct. Sometimes, a mother’s instinct tops a doctor’s experience.

  • Fact: Homeopaths have done more research on food allergies than experts in any other branch of medicine.
    Experience: Not all homeopaths are legit. In fact, a lot of them add steroids in their medicine. Checking a homeopath’s (or any other doctor’s) references before seeing him/her are of paramount importance.

  • Fact: Most kids with multiple food allergies also suffer from multiple air-borne and chemical allergies.
    Experience: Keeping a home clean and dust-free goes a long way in keeping the child comfortable. Changing air filters in the house regularly helps immensely. So does using natural cleaners like Baking Soda and Vinegar. Chemical fumes can affect an already weak immune system.

  • Fact: Children with the classic triage – food allergies, Asthma, and Eczema – almost always have a very high eosinophil count.
    Experience: Just because a child has a high eosinophil count does not mean that the child has cancer. I should not believe everything I read on the Internet.

  • Fact: A RAST test can determine what a child is allergic to.
    Experience: Results of the RAST test should be taken as a guide, and not the word of law. Results of this test may vary depending on what the child has been exposed to and eaten during the day. Very often, experimenting with my child’s diet can tell me more about his allergies than a RAST test can.

  • Fact: Children pick up on anxiety and nervousness in adults around them. This compounds their allergic reaction.
    Experience: Panicking is not going to help anyone. Staying calm, holding my sick child, and telling him that everything is all right can sometimes make symptoms disappear in a matter of minutes.

  • Fact: The psychological and emotional well-being of allergic children requires just as much attention as their nutritional well-being.
    Experience: It is a question of mind over matter. If I believe that my child is going to be alright, my child will believe it too. The day my child believed he is going to be alright was the day he started to heal himself.

  • Fact: Children with allergies often turn psychosomatic. They will themselves to “turn allergic” to foods they don’t want to try.
    Experience: Earning my child’s confidence is more important than trying to feed him foods he doesn’t find appealing. Telling him how much I love him and how I hate to see him hurt, makes him feel secure and trust me more.

  • Fact: Children with allergies are often unwilling to accept new food from their parents in their home.
    Experience: The human brain works by association. When a child has numerous painful allergic reactions during meal time, his brain eventually associates the place and the person feeding him with the pain. It helped me when I leveraged the support of friends, family, and a trusted daycare provider, and had them offer him new foods in their homes.

  • Fact: Pumping an allergic child’s system with allergens can lead to the child’s immune system taking a beating.
    Experience: A lot of parents think they are helping their child build immunity by giving them allergic foods. On the contrary, I felt if I did that, I would be bombarding his immune system with an allergen it cannot tolerate, and make it even worse. What is more, I would have caused the child unnecessary pain, and therefore lost his trust.

  • Fact: Children with food allergies need special care.
    Experience: A child with food allergies doesn’t have to be malnourished. The guidance of a qualified Nutritionist can help keep the child healthy.

Update:

1. The Washington Post had a small note in the Kids' Post section about how allergies have soared in the last few years.

2. I've corrected the name of Tharini's blog in the first sentence. Sorry T!

Links to Allergy Awareness Posts on Other Blogs:

  • Tharini has a post on the difference between food intolerance and food allergies. Good info!
  • Dotmom's post on her personal experience with Chip's allergies and some do's and dont's for parents of children not facing the allergy issue.
  • Imp's mom post with more personal experiences and information on how they dealt with the issue.
  • Sundar Narayan's personal story.

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