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2013: An Allergy Odyssey

I look at pasta and baguettes, at pastries and ice cream with disdain.  In the back of my mind I know they’re inanimate objects, but when I stare at them, I imagine they are lurking with malevolent intentions.  When I walk past bakeries, I sometimes resent that alluring aroma that invades my breathing space.  And when I pass the nut section in my market, I get this sick feeling in the pit of my stomach.  I’m not worried about what these foods may do to my waistline; I’m the mother of a child who is severely allergic to multiple foods.

Months ago, my now 14-month-old son Lumen suffered a series of anaphylactic reactions.  I suspected the culprit was milk after his first anaphylactic reaction.  What I didn’t imagine was that he would be allergic to over 20 additional foods.

After his second anaphylactic reaction, he was given a skin prick test and an immunoglobulin E (IgE) blood test which measures the blood level of IgE, one of the five subclasses of antibodies. The immune system makes antibodies, proteins that attack antigens, one antigen being food allergens.

During the time we were awaiting the IgE blood test results, Lumen suffered two more reactions, one from breast milk.  The doctor ordered me to go on an exclusion diet, eliminating all the foods he suspected Lumen might be allergic to.  While only trace amounts of the allergens were likely coming through my breast milk, these scintilla quantities were enough to cause a reaction.  This is exactly what happened.  As I was breastfeeding Lumen in the hospital, he started to develop a rash all over his face as well as become agitated.  The doctor who was sitting right next to me told me to stop feeding immediately.  She gave him an antihistamine and told me that I was no longer allowed to breastfeed my son.  What had nourished him exclusively for the first six months of his life was now threatening his life.

Test results in, the doctors confirmed that Lumen was severely allergic to multiple foods, including milk, eggs, peanuts, tree nuts, wheat, rye, barley, oats, soy, corn, peas, green beans, sunflower, sesame, lentils, chickpeas, coconut, strawberries, and bananas, among others.

Upon revealing the test results to me, the doctor gazed at me with a look all parents in my situation must get – a look that said it wasn’t the end of the world, but that it would be a voyage for the vigilante, one who would soon become familiar with obsessive compulsive hand-washing, crumb-cleaning disorder, paired with paranoia-induced paralysis which becomes a mild or maybe not-so-mild form of agoraphobia, in addition to becoming a slave to ingredient lists and in the case of swelling, rashes, and wheezing, feeling a lonely contestant in the game of name that food perpetrator.

Before we left the hospital, the doctors prescribed Neocate LCP, a 100% amino acid-based infant formula to be used by babies with multiple food protein intolerance under strict medical supervision.  Without a prescription, one tin of this formula costs £33 ($53).  We walked home, and as soon as we entered our flat, I sat on the floor, holding Lumen and crying.  I couldn’t stop crying.  And I felt very alone.  It was at this moment that Lumen also started crying because he was hungry.  As my breast milk leaked through the breast pads and my shirt, I made a bottle of this new formula for my little guy.  The formula reeked to me of rancid potatoes, making me gag.  Unsurprisingly, Lumen was not interested in drinking it.  He started banging his head on my chest, saying “Oooh, oooh.”  Whenever I would breastfeed him, I’d say, “Let’s have some foooood!”  He was saying “food, food” as he knew how.

From the moment he was born, Lumen has loved his “food”.  I fed on demand, which was about every two hours.  I suffered from mastitis five times because any time he didn’t feed right at the two hour mark, my breasts became too full, and I wasn’t always somewhere where I could empty them.  On this particular day when Lumen’s doctor directed me to cease breastfeeding cold turkey, I could feel a sixth bout of mastitis coming on.  I called my doctor to ask for a prescription for a pill that would dry up my milk as I couldn’t bear mastitis at this already trying time, and I didn’t want Lumen to smell my milk or have an allergic reaction as I held him to my chest.  My doctor refused and essentially said that I would have to endure the pain.  That night, with Lumen still refusing to drink any of this formula and crying as he never did before, I felt completely defeated.  We both eventually cried ourselves to sleep.

I woke up in the early hours, the bed underneath me soaked with breast milk.  I was so frightened Lumen might have an allergic reaction lying on this milk – he is so sensitive that he has not only suffered anaphylactic reactions from ingestion, but from contact – that I moved him and laid several layers of blankets underneath him.  I prayed to a god I was finding it difficult to believe in any longer.

I called the hospital in the morning to inform the doctor that Lumen refused to drink any of the formula, and he said to bring him in.  After examining him, the doctor said that if he didn’t drink any formula in the next 48 hours, he would have to be admitted for intravenous feeding.  Lumen seemed to understand the doctor, and with the help of prescribed cherry vanilla flavouring, started drinking the formula that night.

Everything in our lives has changed.  We eat differently, we think differently, we behave differently, we react differently, and it is difficult for us – including my six-year-old son Enlai – to completely relax.  Being the mother of a child with multiple severe allergies means that we often do not eat at the same time, as a family.  At this stage, I feel it’s unfair for Lumen – who, in addition to his formula, now eats about 10 different foods regularly – to have to watch his brother and me eat a variety of foods, most of which he is not allowed to eat.

It means only rarely going out to eat and even then, always bringing Lumen’s food with us.  It means limiting the time we spend in bakeries or coffee shops because the wheat allergen can be airborne, as can milk powders, egg powders and “nut dust”. It means complete removal of peanuts and tree nuts from our home and not allowing anyone to enter our home with either.

It means utilising a magnifying glass as if I’m Sherlocka Holmes to read ingredient lists.  And becoming frustrated when the ingredient lists are not available or are in another language.  I’ve become an expert in learning what grano, linsen, and majs are.  It means contacting corporate headquarters to find out the ingredients and even then, sometimes finding out the hard way that they either forgot to inform me of one ingredient or that one of their employees managed to cross-contaminate food.

It means less play dates than we used to have, and when friends do come over, having to give them an unfortunate but necessary education on how a crumb can be responsible for taking a life.  It means scouring rooms, pavements, playground floors, and park walkways for food scraps.

It means separate kitchenware for Lumen – cutting boards, cutlery, sponges, towels, pots, pans, dishes, everything.  While washing items in the dishwasher should theoretically remove the possibility of a food allergen, because he is so sensitive, I do not take any chances.  I wash all of his kitchenware separately, by hand, with dish soap and his sponge.

It means reading toothpaste ingredient lists.  It means having to throw away hundreds of pounds worth of shampoos, conditioners, cleansers, lotions, creams, and makeup.  And seldom wearing perfume.  It means only kissing Lumen when there is nothing on my lips or just Vaseline.  It’s mind-blowing how many beauty products contain food allergens.

It means no teething powders because one of the ingredients is milk.  And no liquid Calpol, Nurofen or Tylenol because they contain xanthan gum, and xanthan gum is derived from either wheat, corn or soy, all three of which Lumen is allergic to.  It means having to become comfortable with using paracetamol suppositories.

It means changing his laundry soap and washing all his clothes separately.  And it means big brother Enlai has to either shower now or, if he wants to take a bath, to only bathe using the same emollients Lumen uses.  It means no harsh chemical cleaners when cleaning our home.

It means having to endure looks from passers-by who see Lumen drinking his pink-tinted formula, often times I suspect because they assume I’m giving him sugar-packed strawberry milk.  One woman felt compelled to tell me off for giving my son “such a bad start in life.”

It means having friends and family afraid to touch or kiss Lumen, which breaks my heart.

It means that when we travel, having to call the airline/train operator well in advance to inform them of Lumen’s allergies, and to call at least two or three more times before our departure to confirm his allergies.  And on the day of travel, to remind the attendant at the counter and the air/train hostesses of his allergies.  It means that if one single person on a flight opens a pack of peanuts and the “protein dust” travels or enters the ventilation system of the aircraft, we are at risk of an anaphylactic reaction in the air.

It means Enlai and I having to apply copious amounts of lotion to our hands because we wash them so much they often crack and bleed.

It means having to show anyone who may ever be alone with Lumen how to use the EpiPen and to remind them often how to use it.  It means familiarising myself with cetirizine, ranitidine, dalivit, seravit, dermol 500, eumovate, hydrocortisone, cetraben, epaderm, asthma inhalers and spacers.  And it means having to thoroughly weigh the cost-benefit of vaccines.

It means Lumen not being allowed to go to nursery because he requires 1:1 care, and there are no nurseries that provide this.  And if he is in any infant classes or is eventually allowed to go to nursery, it means having to make certain they know he is not allowed to be near a wide assortment of products, including egg boxes, egg shells, face paints, play dough, certain crayons, markers, and paints, modelling materials, such as nutty cereal boxes, and collage/filling materials such as pasta, nuts, beans and seeds.  And if ever there’s a field trip to a petting zoo, farm or any place with animals, it means extra caution is required.  While Lumen does not have an allergy to cats and dogs now, children with food allergies are more likely to develop additional allergies later, including to animals, dust, grass, mould, etc.

It means having to educate fellow parents that while it may be the most convenient thing for them to make a peanut butter sandwich for their child to take to nursery/school (for nurseries/schools that still allow any peanut products), it puts children with severe nut allergies’ lives at risk.

It means relying on the frankness of folks at the Anaphylaxis Society, and leaning on fantastic friends who also have children with food allergies.  I have two friends who have been nothing short of amazing, one of whom was my own bona fide You Have Just Learned You Have A Child With Multiple Allergies Tour Guide at the market.  She taught me in about one hour what must’ve taken her months, if not years, to learn after reading countless ingredient lists.  I was lent a practice EpiPen and allergy cookbooks, and received incredible support when we’ve discussed new allergies, skin prick tests, food challenges and other allergy issues.

Despite the change, my sons and I are happy.  We laugh a lot.  Lumen is thriving, in the 90th percentile for both height and weight.  His skin is beautiful.  And he hasn’t had an anaphylactic reaction in eight months.  He is the subject of an article being written for the British Medical Journal.  Enlai continues to be Enlai, always caring and very protective of his little brother.

Enlai and I are still trying to come up with a name for the evil villain who wears a cape emblazoned with a capital “A”.  Allergy Man just doesn’t seem a wicked enough moniker.  Moveable Feast Mobster, I ask him.  Or how about Comestible Crook?  He wasn’t keen on either suggestion.  He asked what my cape will have on it in this battle, and I replied, “I guess M for ma.”  He laughed and responded after much thought, “Maybe it should be C for crazy crumbs-cleaning ma.”  Perfect.  I’ll do whatever it takes, including being a crazy mom who is constantly cleaning crumbs and giving dirty looks to the croissants in the patisserie window.

Category: Allergies, General, This Parenting Stuff

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2 Responses

  1. Rebeca says:

    I’m really sorry for this challenge you are going through. My daughter also suffered from a few allergies and we found out about them when she turned 1 and now that she is turning 5 things are away better. I do hope things get better for Lumen and I hope God gives you the strength to carry on. It is not easy, but there will be a point where you will find balance.

    Take care.
    -Rebeca

  2. Gaynor says:

    I can totally empathise with everything you are going through. My little man is now 4 and is allergic to dairy,soya,eggs,wheat,corn,maize,peanuts, treenuts,
    pork,chickpeas,penicilin, housedust mites ,grass pollen tree pollen, cats and most fruit and veg cause oral allergy. i too breast fed, and he would have open sores on him because his eczema was so awful,each new food given would end in a hospital admission, and a new allergen diagnosed. last year was our worst so far, with reactions so bad, that despite using the epipen, he required life saving treatment and admittance into high dependency care, this happened three times in four months as more allergens surfaced (one time he went into shock because of chicken pox)sometimes you feel like you live in a parallel universe, of trolley wiping, swing wiping and park inspecting,hes desperate to go to the cinema but cant, and we have had to stop going to play areas that serve food, because like your son he is airbourne and contact reactive and would always become ill. Sometimes even with all these checks in place he will still have a reaction, although as of last week(heavily knocking on wood) we have not had to use the epipen for a whole year. like your son my boy is happy, accepts that he can’t have these foods and because my son is a little older understands why. we had a huge mile stone this year, my son has started school, only three hours a day, and because his medical needs are so high, he has a one to one. i never thought i would relax and let him out of my sight, but the school are fab, removing all allergens out of the classroom, including playdough etc, even given me the ingredients in the paints they use. when it comes to your son starting school. contact your local education authority and hopefully Lumen will get the same support my son is getting. much respect, and hugs. Gaynor and Tom

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