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.

32 comments:

Tharini said...

What an amazing story Suj. It is such a feel good, positive one.

Hats off to Sushama for putting down her story in such a clear and concise and yet touhching manner. Its an amazing success story!

ggop said...

Kudos to your friend Sushama for summarizing things in a dispassionate manner.

I was especially happy she was fair in her assessment regarding the homeopathy-steroid connection.

I don't believe I had chickpeas or kidney beans regularly at all for the first few years of my life. I think maybe during Navarathri sundal time.

Anonymous said...

As a parent of a child who is allergic to the TOP-8 and more, reading this post gives me HOPE. While we try to stay positive, there are times when you feel really down and think "Why Us"? Thanks for the fresh dose of hope:)

DotThoughts said...

what an amazing story, Suj!

Aspi said...

Suj, loved this post! No wonder I miss your writing.

This is entirely a matter of me projecting but what your post tells me is that no one can put together the end to end picture of a kid's health better than a parent. So a parent has much more say.

This is something I feel very strongly about when it comes to fuzzy conditions (like allergies or Alzheimers)

Girl Next Door (gnd) said...

A BIG Thanks to Sushama for coming forward to write such a well-thought-out message.
SOoooo agree with all you've said!

orangearrows said...

Very nicely written article

Imp's Mom said...

Beautiful motivating post.

first timer, here from Tharini's space

Sushama said...

Hi Suja,

Thanks so much for posting this article and for the great intro. The intro is so well-done that it makes people want to read the article.

A special thank you to all of you who have commented on the article. I am so glad you all took it in a positive light. Deep down we are all optimists. Its just that sometimes life happens, and then we lose sight of our optimism. Until the ray of hope comes through....

Sushama.

scribblermom said...

Amazing and heart warming story...

Loved it and moved to tears knowing that the child had to grow up really early than his age

Sushma has explained her success story in a clear and concise manner...

Aruna said...

Hi Sushama,
Thank you for sharing your amazing story with us.

Your story touched my heart as I am going through the same phase right now but for a different kind of food restrictions on my baby.

Your story gave me the strength that one day my 1 yr old baby will understand why I am putting all the restrictions on him now.

Aruna

Preethi said...

Hello Sushama,

My name is Preethi and live in Chicago. My 14 month old son has similar food allergies. After reading the blog it gives me hope that my child can eventually grow out of this allergy. I have a few questions for you.
1. What homeopathy medications were recommended to ur child and how long did you have to give?
2. Did you see immediate results?
3. What kind of food did you 1st start?
4. Where there any special agenda/procedure you followed?
5. Do you have any homeopathic contacts in Chicago?

If you could please email me at the follwing id, I would greatly appreciate it.

My email id is: preethijagadish@gmail.com

Rohini said...

"Sometimes, a mother’s instinct tops a doctor’s experience."

Amen to that!

Sushama, great post. I think it will really help people whose kids have allergies and give them hope.

Question: why do kids in US tends to be more allergy-prone than in India?

the mad momma said...

great post Sujatha... lets hope this helps.

Sushama - thanks so much for sharing your experience.

Sujatha said...

Hi all, thank you for your lovely comments. I've been encouraging Sushama to write and what a great job she did with such a personal and difficult topic! Preethi and Rohini, I've alerted Sushama to your request.

Sushama said...

Thank you all again, for being so generous with your appreciation.

Rohini, I asked the same question of every doctor I met. How come we have never heard of allergies of this nature in India? And every one of them gave me the same answer: "The US is so clean, that it is too clean and sterile. The immune system of children born here is not used to the kind of germs that they are exposed to in India when they are born. As a result, the body does not build enough antibodies to fight certain allergens." Every one of them also told me that in Aneesh's case, there were auto-immune disorders in both sides of the family, so he just got hit with a "double whammy", so to speak...

Never mind what anybody tells me, I am convinced that with age, and the proper stimulus, one day he will be just like other kids. I refuse to give up hope and lose my faith in God. I know that sounds crazy, but that's just the way it is...

Preethi, I have emailed you the answers to your questions. Hope they help.

Sujatha said...

Just to set the record straight on the 'allergic to even breastmilk' statement: No babies are really allergic to breastmilk, though they can react to foods that the mother eats. So if the mother is willing and able to moderate her diet to adjust, it could be a less expensive alternative to special formulas such as Alimentum.

Source:
http://www.fda.gov/fdac/reprints/breastfed.html
"No babies are allergic to their mother's milk, although they may have a reaction to something the mother eats. If she eliminates it from her diet, the problem resolves itself."

Sujatha said...

Oops, didn't mean to imply in the previous post that I'm the author of this blog.
I'm just another Sujatha who blogs on Blogger :)

Sujatha said...

Sujatha, you make a good point. Thanks for mentioning it. I'm not an expert on food allergies, but, in a child with severe allergies, as Aneesh was, there is nothing really that the mother can do. And what about children with lactose intolerance? Will they not be allergic to breastmilk no matter what the mother eliminates from her diet? I don't know.

Sujatha said...

P.S. Sujatha - I was on your blog this morning and wanted to leave a comment, but didn't. Glad you came over. Thanks, and hello from further down south on 95. :)

Sujatha said...

Regarding the lactose in breastmilk, I did find this useful Q&A on answers.com. It's a possibility to try and reduce/eliminate milk ingestion by the mother, but could be hard if the mother relies on dairy as a primary nutritional source. It would depend then on how determined the mother was to continue the breastfeeding.
I've had friends who tried to cut back on dairy intake in similar lactose intolerant situations, with some degree of success. My kid was also sensitive to whenever I had too much dairy, so I did reduce my intake of it somewhat, though not entirely, while I nursed her.
Thanks for stopping by my blog (I've turned comment moderation on after a crazy poster kept flooding it with silly comments ;), so hopefully that doesn't deter you from leaving any comments you might like to make.)

Hope to see you blog more frequently:)

Sushama said...

Sujatha (the guest here, that is...:-)

Thanks for pointing this out and taking this discussion to the next level. Yes, you are right. No child is allergic to breast milk. But it is also true that in the US doctors are especially careful not to recommend formula until they have first put the mother on an "elimination diet" -- a diet that eliminates one food at a time.
In our case, Aneesh was severely allergic to rice and wheat, milk and soy, nuts and eggs, dals and vegetables, all at once when he was born. They did put me on an elimination diet, but I was consuming at least one of these every day, since my body needed the nourishment having gone through childbirth as well... Mine was one of those rare cases where the elimination diet did not work, and the doctors had to weigh the options, especially, since Aneesh's system was taking a severe beating through all of this experimentation. In fact when he was three months old, his eosinophil count was at an alarming rate of 20000 over the normal limit. At that point, they suspected it could lead to multiple problems (irritable bowel syndrome, some kinds of cancer, etc) and had to advise me to put him on formula.
And I am not unique in this experience. There are lots of people who go through this experience, and have to weigh their options carefully and do what they believe is the best option for the child. In hindsight, when I think about it, I think we picked the best option for Aneesh when we moved him to formula.
There are also a lot more tests, discussions, and experimentation that goes on in cases such as ours. For the sake of brevity, I didn't detail all of those in the article.
So, yes, you are right, no child is allergic to breast milk. But it is also true that in a lot of cases, parents don't have a feasible choice other than moving the child to formula.
I hope this clarifies some of the doubts that mothers with allergic kids may have when reading this blog.

Sujatha said...

@Sushama (from the other 'Sujatha'):

Sorry that your case turned out to be so trying, with even the multiple diet elimination not working out. One of my acquaintances had a kid with a similar problem, he was on Alimentum as well for a long time till he outgrew some of the allergies. It all depends on the severities of the food allergies in the individual cases- some may work by simple cutting back or single food elimination, other cases are much more complex and time-sensitive as was the case for you and Aneesh. All the best to you for keeping him healthy:)

ray said...

Hi,

I was reading ur blog posts and found some of them to be very good.. u write well.. Why don't you popularize it more.. ur posts on ur blog ‘blogpourri’ took my particular attention as some of them are interesting topics of mine too;

BTW I help out some ex-IIMA guys who with another batch mate run www.rambhai.com where you can post links to your most loved blog-posts. Rambhai was the chaiwala at IIMA and it is a site where users can themselves share links to blog posts etc and other can find and vote on them. The best make it to the homepage!

This way you can reach out to rambhai readers some of whom could become your ardent fans.. who knows.. :)

Cheers,

Laavanya said...

Thank you for this very informative post. My 3 yr old daughter had severe eczema and now has been having asthma quite frequently. Though her blood tests show moderate allergies to most foods (wheat, soy), some are high (like egg whites, dairy & nuts). The dairy allergy has changed from moderate to high in the past year and they've asked us to stop it because it may be triggering her frequent asthma. Except for a few foods (cashews), she doesn't show any reaction when she eats the rest so I've been giving them all. I have an appt with an allergist later this month and am in the process of switching her to soymilk now.

Can you perhaps email me some details of the homeopathy dr? I got medication from one for her asthma but it isn't helping as much. Thank you once again.

Shree said...

hi it was nice to read ur post. I was one among the unaware desi crowd. I recently came across a get together , wher my friends child was allergic to peanuts. So i made food with extra care.
MY question is : are these allergies only for the children born in US ? or does this happen in india too ?
I havent plannd a kid yet , Am a bit scared reading and hearing so many such allergies.
Is this due to the intake of food which a pregnant woman has in US ?

Anonymous said...

My 18 month old has eczema and allergic to almonds and cauliflower. We have been using 1% hydro cortisone and aquaphor. I would like to try homoepathy medicine. Could you please let me know the name of the medicine and perhaps I can get this from India if it is not available here.

GettingThereNow said...

Such a touching account! A mother does know best.

It was scary to know that many homeopaths mix steroids in their remedies. Formy daughter's alopecia, we went the homeopathy route BECAUSE we wanted to avoid the recommended steroid treatment. I am glad we went with a certified homeopath and not with just anyone.

bird's eye view said...

Sujatha - thanks for getting your friend to write in. Sushama - amazingly written. And I can imagine just how hard it was for you to figure out what was wrong with Aneesh and to handle it. It must hurt, sometimes, to see him have to refuse simple treats that other kids enjoy. Hope he outgrows all his allergies really soon.

PG said...

this is such a good piece. very informative and there are so many things i totally agree with. wonderful! Thank you so much for sharing this with us.

Sundar Narayanan said...

came here via s.b.'s comment

wow!

your kid is lucky that he was born now and not forty years ago!

one thing that strikes me after reading your post is that at least while you were in the US when you first figured out this, you were free to follow just your maternal instinct and were able to protect your child! If you had to deal with grandmas and greatgrandmas who insist on "saami prasadam" not doing any harm to a child!! ie., if a thing the kid refuses to eat like an ellu urundai (sesame seed ball) that is offered to dead ancestors on their rememberance anniversaries (srarth days), force him to eat it using the "it was gods prasadam. it is harmless!".

I would just eat the thing, knowing it was poison! and hope to throw it up soon..

great post! glad your kid is doing much better now.

:)

Sujatha said...

Thank you for reading and for your comments. I'll forward them to Sushama.

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