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Posts Tagged ‘egg allergy’

In the end, we did go to the emergency room, and a very good thing too.  As I said in the postscript to my last blog post, E2 got me back up again around 3.15am (though I say she “got me up”, I had yet to actually sleep) and, this time, she was having to work very, very hard to breathe.  She was asking for milk, but what she really needed was an immediate breathing treatment, and I carried her straight downstairs to set it up.

The medicine is a strong stimulant — this is what forces the airways open again — and the result is almost always a burst of activity, as if she’s suddenly ingested four cups of strong coffee.  It’s hard to judge her breathing at this point — I have to wait until she’s calmed down a bit to get a true idea of whether the treatment has worked.  She ran around until around 4am, and then slowed and I could begin to see…  and I just wasn’t happy with what I saw.

She was still working to breathe — less than before, for sure, but still visibly working.  And that meant it was probably time to go to the emergency room.  But… I wasn’t sure.   It was 4am, I hadn’t had much sleep for nights on end and no sleep that night at all, I was exhausted…  it was chucking down rain and cold, and dark, and hospital has recently moved to a new location which I don’t know that well…  I thought of my other daughter, fast asleep in her bed upstairs…  I wasn’t sure what to do.   She was working for the breath but…  was it that bad?  Or was it just the usual struggle from having a cold? I couldn’t decide.

I woke M from his deep sleep and made him watch her breathe.  He  wasn’t sure either.  She was so happy and lively in herself, smiling at her daddy, but still… there was that rasping, the belly working with each breath, a slight collapse at the base of the neck…    “Mmmm… ” he weighed it up, “I think she’s ok.  Let’s just wait a bit and see.”

I agreed, relieved to share the burden of the decision.  “But I don’t want to put her in her room.  I want her to sleep here with us.”  It was a sign of his true uneasiness that he agreed immediately — he has always been adamantly against the girls sleeping in our bed.

She didn’t sleep.  She tossed and turned, and sang, and played with her daddy’s ears and his nose, and smacked me gently on the face.  So exhausted was I that I managed to slip into blessed unconsciousness even still, and so grabbed my only sleep of the night — about 30 minutes.  But when I came to again, there was no question — she was not getting better.  I rang the doctor’s office — it was now about 5am.  The nurse on call listened to my description and then said, “You know what I’m going to say, don’t you?”  I did.  “I’ll ring ahead to let them know you’ll be coming…”

Poor E1 sat up with a start start when I rudely flicked on the light, and she blurted out in confusion, “What’s… what’s going on?!?” I told her we were going to hospital and I needed her to get up, use the toilet, and get dressed.  My recognised my tone and followed the orders without complaint.  But when her knickers wouldn’t cooperate, the sleeiness got the better of her and she faltered.  “Mummy, I think I might cry…”  Big eyes, wobbling lip.  I fixed the knickers, gave her a squeeze and a big kiss, and she composed herself again and carried on — so exactly the big girl I needed her to be at that moment.

I rang my mother and asked her to meet us at the hospital, then grabbed a change of clothes and whatever food I could find — breakfast would be corn muffins and leftover pasta with garlic-tomato sauce — and bundled everything and everyone in the car.

I took a wrong turn in the dark and got lost in the city, then found my way again, then took another wrong turn and got lost again.  “Sweetheart, are you ok?” I called out every few seconds, and she’d squeak a small sound in reply.  I barked at E1, “Watch her! Watch her breathe!  Is she breathing?”  This time, the nurse had not suggested an ambulance.  And we’d made the trip every time before in the car so I just hadn’t thought…  Oh, why hadn’t I called an ambulance?!?  I turned left… found it was a road I recognised, worked out the way to the hospital, and gunned it.

She didn’t respond to the first treatment, even after a full hour.  The wheezing continued, the effort with every breath still painfully apparent.  And, more worryingly, even the stimulant no longer perked her up much — she laid on the hospital bed, listless in a little blue gown covered in dinosaurs.  They tried another treatment, with a different medicine and, thankfully, that one.  She began to breathe more easily and her eyes brightened.  We stayed another hour for observation, and then we were released, and left feeling disorientated, surprised to find that it was lunchtime.

The doctor had asked me — no, ordered — to take her for a follow-up the next morning.  He was adamant that he did not want it delayed until after the weekend.  But when we arrived, the pediatrician was running behind, and we sat in the waiting room for over an hour, surrounded by all the other children who also so sick that they couldn’t wait for Monday.  One mother, her arm around a bleary-eyed, coughing girl, told the woman next to her that 300 children had been out that week from her daughter’s school with suspected or confirmed swine flu.  I made E2 put her book down, and slipped into the bathroom to wash her hands.

The doctor’s eyes went immediately to E2’s chest and belly, from the moment she walked in the room.  “She’s working for it now, isn’t she?” she observed before we’d even begun.  “She needs a treatment now.  We could do it here… but, no, that will cost you.  How far are you from home?”  Ten minutes, I told her, and we agreed we could do the treatment the minute we got home.

I like this doctor very much — she is gentle and respectful with my daughters, shows them all the instruments before she uses them, and sings a quiet and soothing  song as she examines them.  More importantly, she genuinely understands that I am generally hesitant to resort to medication, because she is of the same persuasion herself.  So when she suggested at our previous appointment (that is, after the last breathing-trouble run to ER) that perhaps we should consider giving E2 a nebulised steroid treatment — daily steroid, for the next six months — my initial gut instinct to reject the idea was tempered by the knowledge that she wouldn’t be suggesting it if the situation weren’t really that serious.  And yet…  and yet, I couldn’t hide my revulsion.  “Think about it for awhile,” she had said, writing the prescription.  “Pick up the medicine from the pharmacy…  Maybe discuss it with the allergist too.  But the way she goes down so fast…  I think we might need to do something to help her get on top of this, for the future.”   And now the doctor brought the subject up again, suggesting in her gentle manner thatperhaps we should be using that daily steroid treatment — and this time I had to agree with her.  It all gets so critical so quickly with E2…  It’s dangerous to carry on like this.

I asked about swine flu: could the girls be vaccinated, given their egg allergies?  No, but M and I can.  In fact — she pointed her pen at me, concern on her face — we probably should be as soon as possible.  With E2’s history…  She didn’t finish her thought, but I understood.  I have no doubt that if this child contracts swine flu, it will not be the “mild case” that we’re told most people get.  I will be that mother praying fervently, with her forehead resting on the edge of a hospital bed, next to the child fighting for her life.  I need to register the two of us with a doctor — or perhaps ring the allergist — and hope my explanation of the situation is enough to persuade him or her to bend the rules and give the two of us the H1N1 vaccine.

But for now, sat here at the computer and up far too late again, I am just counting my blessings — grateful that we made it to the hospital in time, and that my daughter responded to the treatments at last, and that tonight she is sleeping peacefully upstairs… her little chest rising and falling gently in the dark.   The last few days have been exhausting, draining.   Tackling the next hurdle can wait until tomorrow.

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Four days after E2 finally recovered from her ordeal of having two teaspoons of lentils move through her system (and I recovered from my ordeal of not sleeping for three nights on end), and just as I was beginning to feel human again, my mother handed me a small bag of wonderfulness.  She’d picked it up for herself from Trader Joe’s but decided I needed a treat…  It was a bag of mini stroopwafels — those decadent little discs of caramelly deliciousness which I love so much, imported straight from the Netherlands.  My mouth began watering even as I took them from her hand and I heard bells ringing from the sheer excitement of it.

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At least, I thought the bells were ringing out of sheer excitement.  If I’d stopped for a moment, I would have thought about why I hadn’t allowed myself any stroopwafels since I’d found them at Trader Joe’s months and months ago.  If I’d been thinking, I would have checked the ingredients.  If I’d stopped for just one moment, I would have asked myself why those bells were actually tolling, not ringing.

But I didn’t think.  I was tired and strung out and so I ripped into the bag and popped one of those beautiful, buttery, caramelly little circles of pure love into my mouth.  And I melted as it melted.  Oh, I do love them!

I had another later that evening with my tea…  and then (oh!) another.  Just as good.  Even better, in fact, curled up on the couch with my feet tucked underneath me and a steaming cuppa tea in my other hand.  I had time to savour them…  Oh, I do love them!

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The pain came quickly — within an hour.  I had failed in my diligence and there was a price to be paid.  I went back through my day — what had I eaten?!? — and then realised who the culprit probably was and dashed up the stairs to check the packet.  There is was…  of course! Those bells!  There was a reason I’d always bypassed the stroopwafels before…  They contain soy and even though I’d only had three and they are tiny, that didn’t get me off the hook.  Stupid girl!

I turned to go downstairs and sit on the couch, to shiver until the pain left me, when my eye caught something else on the ingredient list that made one last bell suddenly clang loudly, but…  no…  no…  it’s way down on the list…  and I’ve only eaten three of them…  and they’re tiny, only an inch across…  and my body will surely filter it out before it gets to my milk… That’s what a mother’s body does, isn’t it?  Steps in and filters the world to protect the baby even when the mother fails to…

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When I got her up the next morning, she’d done a poo that was so strange it startled me.  It was as big as I’ve ever seen her little body do and was the colour and consistency of liquidised seaweed — so dark green it was almost black.  How odd!, I thought.  And that evening, when her father change her nappy and it was still that  same strange colour, I marveled at it alongside him, but still didn’t put two and two together.  And when the skin on her chin flared up with redness and when she had a miserably fitful night’s sleep and had me up five times to comfort her, I only cursed our bad luck and still never twigged what was really going on.

It wasn’t until the next day, when the dark green poos turned acidic and began coming in rapid-fire succession that I finally — finally — realised what was happening inside her.  My body had not managed to filter out the ingredient that had set that one lone bell to clanging.  And even though it was buried way down in the ingredient list, that wasn’t protection enough.  I’d only had three little stroopwafels, but it was enough…  Enough for at least one egg protein to pass through my stomach, through my gut, and up into my milk which I’d then lovingly fed to her.  And now her body was reacting with a wild vengeance that was putting her through hell, exhausting me, and turning the skin on her bum red-raw.

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That night was awful.  She couldn’t sleep, she couldn’t get comfortable.  She threw herself about in my arms in a exact replay of her lentil-ordeal less than a week before.  From midnight to 2am, she screamed and cried and flailed about, as I held her in helpless despair.  And from 2am to 4am, her body began a violent campaign to rid itself of this intruder, and she sat miserable and wide-eyed as poo after poo exploded out of a body she couldn’t control, leaving her bottom was so raw that it was bleeding, and had her screaming pitifully through every nappy change.

By 4.30am, it was all over and we both fell into an exhausted sleep.  The next morning, she and I were like zombies — it had been our second bout in a week with this allergy-imposed misery and it had knocked the stuffing out of both of us.  But she was on the mend, thank goodness — the poos returned to normal colour almost immediately, though the nappy rash took days to subside and left her screaming in heartbreaking pain every time she wee’d or pooed and whenever I changed her.

And I have, once again, learnt a lesson.  And perhaps for the final time…?  How many times do I have to get it wrong before I realise there is no leaway?  There is no room for manouevre.  There is no forgiveness, there are no second chances.  There is only this crazy, unnecessary, wild and violent reaction that she must endure — poor, innocent she.  And guilt and guilt and guilt and no sleep for me.

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My mum found that one of her favourite shops was having a major sale and so she swung round to pick up the girls and me for a day of girly shopping, of the sort we rarely got the chance to do while I lived on the other side of the world.  It was wonderful fun — we found a ton of adorable dresses for the girls, and even a few really nice pieces that fit my still depressingly lumpy body.  And afterwards, we were all tired and hungry, so we looked for somewhere to eat.

This is easier said than done.  With a combination of allergies and intolerances that rule out eggs (both girls), soy (me and E2), peanuts, treenuts, chicken, dairy, avocados, and bananas (all E2), not just any place will do.  Most chains ares simply out of the question — indeed, when I mentioned a problem with soy, Olive Garden and TGIFriday’s quite happily told me they’d rather I ate somewhere else — and even individual places struggle to accommodate us.

So when my mother suggested Chili’s, I was dubious.  Leaving everyone in the car, I went in first to ask whether they were geared up to handle our allergies.  Imagine my surprise when the hostess — far from getting that weary look that I know so well — smiled and said, “Yes, let me just grab our allergy menus.”  Allergy menus?!?  I was delighted to discover that Chili’s has gone to the trouble of putting together individual lists of the items from their menu that are ok for people with a variety of allergies — one list for each of the top eight allergens.  I was over the moon that someone would take our needs so seriously, after so many brick walls and downright hostility.  And when I noticed the egg list was missing, the hostess ran back to the office to print a fresh one.  Fabulous!

And on that high note, I began the hard work, attempting to cross-reference all the lists and the menu spread out on the table before me to find something that the girls and I could eat.  But they were tired and cranky and starting to act up, my mother had chosen and was ready to order, and I was getting nowhere fast.  There was too much information, too much to check, and I couldn’t process it all to determine what was safe for E2 to have.  I was too acutely aware that if I ordered the wrong thing, I was putting my daughter’s life at risk, and the enjoyment was quickly draining out of this rare chance to go out.

The manager came over to answer our questions, and we found that there was a risk of dairy contamination (butter) with any food cooked on the grill, so we had to retreat to our safe standbys: the girls would have a plate of plain corn, broccoli, and carrots.  Soy being particularly insidious, I ordered the only items that were available to me out of the entire six-page menu: a burger with no bun and no fries and no mayo, and a side-salad with the one non-soy dressing (low-cal vinaigrette).  It wasn’t exactly what I would call much of a choice, but it was safe, and we were eating out for once, and I was still on a high because of all the care Chili’s was taking with us.

And after all that, the conversation continued on theme — my mother and I discussed the dangers of cross-contamination, my fears about sending the girls to school, and the horrible possibly that a moment’s lapse in concentration could have devastating results.  I told my mum the story of Sabrina Shannon, and we both stopped mid-bite, frozen at the thought that anything like that could happen to the two precious girls digging happily into their dinners next to us.  My daughters’ world is constant crossfire of danger and to keep them safe, we both agreed, vigilance was everything.

Eventually, the conversation changed and the mood relaxed.  The girls’ bellies now filled, they began to settle a bit and enjoy the novelty of being out for a meal.  My mother and I discussed with glee the bargains we’d snagged that day.  We had nearly finished our meals and all was well.  I sat back and relaxed for the first time since we sat down.

I turned to E2, who was wildly excited, pointing at the pictures on the walls, and we began discussing them one by one.  After a while, I realised E1 was making that whinging noise that three-year-olds do so effectively, and I looked over to see her leaning on my mother’s arm and reaching out for her plate, as my mother dug around in her salad bowl.  “Hold on, darling,” my mother said, “I’ll find one…”

“Mother,” I said, suddenly going cold.  “What are you doing?”

She picked up on the tone in my voice, but still remained cheery.  “I’m getting a tomato for E1.  She saw me eat one and she asked for one,” she replied, still digging.

“Mother, what is the white stuff all over your salad?”  I couldn’t hide my fear and irritation.

“It’s my blue cheese dressing.”  She stopped digging, a juicy cherry tomato now poised on her fork.

“Is it…”  I couldn’t believe I was having to say this… I suddenly felt like my head was being squeezed in a vice and I’m not sure I kept my tone under control.  “Is it egg-free?

There was pause and she put her fork down.  “I don’t know.”  Anger rose up inside me and made my vision go blurry on the edges.  E1, seeing that her prize was slipping away, began whinging afresh.  I picked up the egg-allergy list and looked at the salad dressings they listed as safe — blue-cheese was not there.

“It’s not on this list,” I said, not trusting myself to say more.  I looked at her for a moment, and then had to close my eyes and clench my jaw, and I couldn’t stop myself from pulling a face that I know revealed everything I was feeling inside.  It was the face of a mother who felt sick at what might have just happened.  It was the face of a mother who is afraid for her children every time she steps into a restaurant or a snack bar or a cafeteria.  It was the face of a mother who knows, in her heart, that her children are not safe, moment to moment, even with their own grandmother, even as I sit right there with them.

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Epilogue: The next words out of my mother’s mouth were, “I don’t think there is any dressing on this tomato though…” as she eyed it carefully.  After all we’d just discussed about cross-contamination of utensils, of Sabrina Shannon’s death…  I could have cheerfully smacked her.

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“No, no, not that one,” my mother yelled from across the garden, waving a pointing hand in that way that always makes me want to grab it and force it to be still. “That one will contain soy — yours is the one in the jar with the blue lid.” Too late — I was on my second serving of salad and I’d picked the wrong dressing the first time round. When my mother had said she’d brought some non-soy dressing for me and it was in “that jar there,” indicating casually in its general direction, my eyes fell on the wrong jar and I inadvertently coated my salad in lashings of my personal poison. Now that I realised my mistake, I knew that evil stuff was already in me, being metabolised even as I stood there, and marching onwards towards the places which will react to it with pain. There was nothing to do but wait. “Oh, it won’t be much,” called out my mother, dismissively, “…just a little soy oil. It probably won’t be enough to cause any harm.” I was more dubious, having been at the sharp end of the pain more times than I care to remember. Nothing to do but wait…

It was the kind of beautiful, balmy evening that makes a casual American barbecue such a perfect way to end the weekend. That dreaded Sunday-night-before-Monday-morning feeling never got a look in. The steaks were pink and juicy, the salad crisp and refreshing, and the wine flowed just enough, not too much. Sometimes I struggle in my parents’ company, but not tonight — everything was easy. The girls ate their dinners and then chased lightning bugs around the garden while we sat back in our chairs around a table of emptied plates and chatted. It was lovely.

I had worried a little when I saw E1 reaching to steal a piece of steak off of her daddy’s plate, because it was nestled next to his salad covered in a creamy dressing. My first thought was that the dressing probably contained egg, so I immediately stopped her and gave her a piece of meat off my plate instead. And for the rest of the meal, I kept one eye on that plate with its creamy residue round the edge and one eye on her, until it was finally swept up with some other dirty dishes and taken into the kitchen.

And my guard was instantly awoken when a Ziplock bag of walnuts appeared, to be sprinkled on the salad. E2 saw it and began pulling at M’s trouser leg and making a noise that insisted she wanted to try whatever intriguing thing it might be. He took a handful of the nuts and chucked them neatly into his mouth and then bent to pick her up, as I yelled out with a slightly panicked voice, “Wipe your hands first! Quickly, please! And your mouth…” With nut-allergy results as severe as hers were, there is the risk that even the walnut dust left on his hands might trigger a dangerous reaction.

When, at last, I fed E2 and got her down to sleep, the pain came on quite quickly. If there’s soy in my system, then breastfeeding will set it off like flicking a switch. I had forgotten how sharp it is — how it takes my breath away, screws my face up, and leaves me unable to tolerate little annoyances with grace. I barked at M for waffling on about something that didn’t interest me. He looked at me in surprise, and we suddenly both remembered this person that I haven’t been for so long now. I apologised, and slumped down at the kitchen table, my head in my hands. It would pass in an hour — or perhaps three. Nothing to do but wait…

After it began to ease off a bit, I picked up the phone and rang my mother. “Guess what? I’ve been in quite a bit of pain.” She felt terrible — and took it as a criticism, as she so often does — and quickly began explaining how it had all been a misunderstanding… I stopped her — no need, I knew. I had just wanted us to both be aware of the lesson I had just learnt: even the littlest bit of soy brings the pain. Vigilance and complete abstinence are the only solution.

And then I realised it had to go a bit further. I told my mother that it had been a lovely evening, except that I had spent half of it being worried about leftover creamy salad dressing and the possibility of dropped walnuts. Our family barbecue should be a relaxed environment for everyone. I asked if next time, and from now on, we could make our family get-togethers allergen-free for everyone — no wondering if that has eggs, no watching to see where the nuts are, no guessing which salad dressing is safe — just a nice, relaxing time for everyone. There was a little part of me that felt angry that I even had to ask this, and I wondered if she might think I was being over the top, but she agreed right away. I was surprised by how relieved I felt — I had been more stressed during that relaxing evening than I’d realised.

And then I sat down to ride out the last few waves of pain — brought on by a simple misunderstanding and a mere teaspoonful of the wrong food. Small mistakes can have very big consequences. Lesson learnt — again.

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When E2 was diagnosed with a plethora of allergies and so plunged us into a startling new world of food dangers, I began researching the subject. I was hoping to educate myself in the science and management of her condition, but found myself diving head first into its politics. I had never considered that food allergies would have a political element to them — indeed, I had never much considered food allergies at all — so I was amazed when I discovered what an inflammatory issues they can raise, creating a reaction that often borders on hate in otherwise ordinary people.

It was our realtor who really got me thinking about it. He has a client who has recently had to sell her house and up sticks because the local school district has no peanut policy and it is simply too dangerous to send her son to school there. When I mentioned E2’s allergies, the realtor suggested that perhaps I ought to be researching local allergy policies as well, so that we don’t end up in the same situation in a few years’ time. I was gobsmacked — I’d been thinking of E2’s allergies in terms of eliminating foods, not potential houses and towns and school districts!

My initial reaction, as an inexperienced allergy-parent, is that I’d want E2’s school to eliminate her most dangerous allergens (nuts and eggs) as much as they reasonably could, at least during her youngest years, and to set an example of support for her that would present a firm stance against any bullying or dangerous behaviour by her classmates. To me, in my position, it seemed reasonable to want a school to take steps if it could to ensure that its allergic students were safe while they were in the school’s care. But I could quickly see from my research that, to many people, it was not. To what seemed to be the majority of people, it was more reasonable for allergic students to eat their lunches separated from the rest of the children — at another table or perhaps in another room — and to be excluded from activities that might be dangerous to them (school birthday celebrations, field trips), or even to be segregated out altogether — homeschooled — rather than to have their medical needs impact the food choices and activities of the rest of the school.

Realising that I am very new to this and that my gut reaction is hardly an impartial one, I took a poll on a internet-forum I belong to, to get a better feel for others’ thoughts on the subject. The reaction backed up what I’d suspected: over 60% felt that no foods should be banned from schools, even if there were students with severe allergies to them, and that the more reasonable course of action was to segregate allergic kids to reduce the danger. I came away better educated, but deeply disheartened. I do not want E2 to be singled-out like that, ostracised from lunches and school activities. School is hard and children are cruel… I was hoping for a different attitude to emerge from my research, one that made it easier for my daughter to blend in rather than be excluded.

At one point in the discussion, I asked if severe allergies could be considered a disability. I was thinking in terms of them being recognised as the legitimate and serious medical conditions that they are — rather than less serious food preferences or intolerances as they often seem to be regarded — and thus being afforded a legal status which would compel schools to take the sorts of measures that are required for children with conventional disabilities. I was not trying to denigrate the enormous challenges that the disabled face or even to put allergies on the same level, just trying to think of a legal umbrella under which they could be placed, but my suggestion caused some offense in the discussion. I saw the point, suddenly suspected I was acting like the sort of over-precious parents that I instinctively dislike, and backed away. But I still wondered where allergies could be placed on the spectrum between full disability and full “normality”. Certainly a child who is only minutes away from death should he come into contact with a wayward peanut must be considered to be some distance away from “normal” on that spectrum. And when the penalty is that quick and that severe, are his parents over-reacting if they want to control his environment to remove that possibility as much as is possible?

So I was intrigued to see, only a couple of weeks later, that the Office of Civil Rights has asked a school board to re-examine its decision that a child with severe allergies did not have a disability and so did not warrant a 504 plan. The OCR found that,

“the Division’s decision that the Student is ineligible for Section 504 services could result in death or serious illness of the student, and that this case therefore involves ‘extraordinary circumstances’ that support a substantive OCR review of the result of that decision.”

It would appear there is something to this disability debate — something that, while rightly not calling an allergy a disability in the same sense as more conventional disabilities, yet still may eventually compel schools to take measures that handle allergies from a position of inclusion rather than exclusion, integration rather than segregation, accommodation rather than anger. I imagine the parents of children with conventional disabilities wanted the same for their children when the possibility of mainstream schooling first became a reality for them, and I suspect there was a similar hostility from the general public to the changes it would require, which has lessened over time. I hope that eventually severe food allergies can come to be seen in the same way.

And there is an unrealistic part of me that hopes that struggle can all be sorted and finished within the next four years, for E2’s sake.

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I am thoroughly confused. No sooner had I said that the pain had gone away for a few days than it came back again with renewed intensity. It has been going on for three months now, on a daily-to-near-daily basis, and I am sick of it so, naturally, I am trying every sensible avenue to figure out what it is and to make it go away. And the more I do that, the more frustrated and confused I become.

For anyone who is not familiar with the story — and on the off-chance anyone out there can diagnose me — let’s start with a little synopsis:

  • I had the stabbing pain in the UK, in my right breast right after feeding. But it was annoying-but-livable, so I wrote it off to being one of the myriad aches and pains that are par for the course in early motherhood.
  • In the first week here in the US, the pain escalated to excruciating levels — to the point where I was writhing on the floor, shaking all over, losing control of my bladder — and seemed to have lost its connection to feeding and was instead coming at any point in the day. After 4 or 5 days of this, I could stand it no longer and ended up in ER.
  • The ER doctor — stumped — referred me to a breast surgeon, who — baffled — referred me for mammograms (7) and ultrasounds (2). It was the radiologist — perplexed — who finally asked if I ate much soy and, upon hearing that I drank soy milk instead of dairy, declared that it was well-known that soy caused severe breast pain and told me to cut out the soy and watch my symptoms improve.
  • I did and they did — to a point. After two weeks of no soy milk, the pain had halved from utterly debilitating to merely disabling, and there it seemed to plateau. I began a witch-hunt for soy in other products and discovered, to my dismay, that it was in nearly everything that had a label attached, from rice milk to bread to salad dressing to herbal tea to my calcium tablets. I began to cut everything out that wasn’t confirmed 100% soy-free.
  • That process resulted in a truly radical overhaul of my diet, and took a lot of effort and quite a few failures along the way. I made the mistake of eating the family Easter meal even though I didn’t know all the ingredients, and I paid a painful price for it that same day. I discovered that eating out — anytime and anywhere — was impossible. I spent weeks living on toast and peanutbutter and a bit of fruit, before eventually fleshing out my diet to include plain meats, fresh veg and fruits, and carefully checked breads — nothing extra, nothing more.
  • During this process, it seemed that the pain came in quickly after eating anything with soy — more like a reaction than the result of a build up. My mother brought us a bowl of her jalapeno spicy beef one night and I was in pain within an hour — I rang her and asked her to check her labels (she hadn’t!) and there was soy in the tomato sauce she’d used and in the jar of jalapenos. My body had known and, with reactions as quick and clear as that, I began to wonder… perhaps it was actually an allergy?
  • In the meantime, I registered with an OB/GYN and met with the nurse-practitioner there, and registered with an internist/PCP (equivalent of a GP) and met the nurse-practitioner there. The first was as perplexed as everyone else and eventually prescribed an ultrasound of my gall-bladder, just for process-of-elimination purposes. I don’t think she’s right and haven’t booked the ultrasound yet — that’s another copay I can put off until next month. The second didn’t have any more insight than anyone before, but when I mentioned my thoughts on the possibility of an allergy, she jumped on it and suggested I see an allergist. I’d already got two such appointments lined up for the girls, so it was easy to make another for myself.
  • Through all this, the elimination diet seemed to be bringing about an improvement of sorts. I now had the occasional pain-free day, though when it returned, it was with particular intensity. And it had seemed to return to always occurring post-feed, just as it had been so long ago in England. It was better, to be sure, and yet… still it was there, still nearly every day, and I was sick of being in such pain — stopped in my tracks, hands to my chest, unable to speak — nearly every single day.

I went to see the allergist today. He had been so friendly during the previous two appointments for the girls, but now seemed a bit wary — perhaps he was wondering if this woman who had turned up in his office for three weeks running was actually some kind of allergy-fetishist with problems in her mind rather than her body. Undaunted, I explained everything to him, the story now so long and convoluted that I had actually written down notes so I didn’t mangle it or forget important details.

He didn’t believe it was an allergy. There were no supporting symptoms — no rash, no nose or breathing problems. He asked how old E2 was and how long I planned to continue breastfeeding her. I explained that I wanted to feed her until she wanted to stop and that, besides, I didn’t know what I would wean her onto — she’s allergic to dairy and I am most certainly not putting her onto a soy-based milk after all this! He suggested rice milk, and I explained (to his surprise) that I’d been unable to find one that didn’t contain soy. He mused aloud as to what she actually needed milk in her diet for… protein could be had from meats, calcium from other sources, vitamin D from supplements, and liquid from water or juice. I wanted to explain that it is so much more than milk… it is antibodies… it is comfort… it is bonding… it is so much a part of the kind of mother I want to be. But I felt he was already viewing me with suspicion, so I listened and mmmmm’d in reluctant agreement.

He said he could do a skin-prick test if I wanted, though he felt it was unnecessary and didn’t see any reason to recommend it. I said I’d like to do it anyway — at least it would rule out an allergy definitively, even though it would probably also confirm in his mind that I am a silly attention-seeking freak. He left while his nurse applied the test. It proved negative, which gives me confirmation that this is something I can eliminate from my concerns.

He was gone a long time and, when he returned, he told me he’d actually been on the phone consulting with his daughter, an OB/GYN in California. She had said that soy doesn’t cause pain in breasts — it’s progesterone that does that, not estrogen as is in soy — and, in fact, soy can soothe breast pain and they actually prescribe it to counteract the pain caused by progesterone-rich contraceptives. She had even checked on MediLine (?) to confirm it. He said that the radiologist must have got it wrong. And beyond that, he was at loss — just like everyone else. He explained, with practicality and resignation, that I had two choices: I could deal with the pain and carry on searching for an answer, or I could wean the baby. I could see which choice he felt was the more sensible, as he gazed down at my baby, standing on her own two feet, trying to talk, and rapidly becoming more of a toddler than a baby…

And so, I am confused. I am utterly and completely confused. Is it caused by soy? Is it soothed by soy? Is it due to feeding? Is weaning the only way of stopping the pain? Was the radiologist right? Is the allergist right? So long as I can find the answer, I don’t care what it is — I have no agenda. I am not against soy as such — if it turns out to not be caused by soy, I will be the overjoyed to jump back into a normal diet again. I will eat at restaurants again! I will buy what I fancy at the supermarket! I am not doing this to seek attention — I don’t need the endless appointments, the being poked and prodded, or emptying our bank account with copays. I just want this pain to stop. That’s it. We have a million difficult and stressful things to deal with at the moment, and I just want to end this pain being one of them. And… I don’t want to wean my daughter — my tiny, underweight, food-intolerant daughter — until she wants to.

———————

As the doctor was leaving, and the girls were rapidly and very vocally coming to end of their patience, I asked him about E2’s blood test results. Ah yes! He rushed through them: she is significantly allergic to egg, mildly allergic to dairy, borderline allergic (“it is hardly a positive at all, but it isn’t a negative…”) to soy, mildly allergic to bananas, wheat is a negative, and significantly allergic to a plethora of nuts, including peanuts. The results for avocado and oats aren’t in yet — I’m to ring next week for those.

The baby was yelling for her milk by now, and he had to repeat himself at times over the din. I stood up and bounced her on my hip as I asked, what does “significant” mean? He explained it in terms of E1’s reaction to egg — that reaction to a mere trace of egg clinging to piece of pepper she ate, which had caused her face to puff up quite shockingly, her eyes to begin to swell shut, and had her sobbing in distress, coughing and gagging violently, and tearing at her face so as to pull her very skin off and rip her eyes out. From her blood tests, E1’s egg reaction registered a 2.09 on his 0-10 “International Something-or-Another” allergy scale. E2’s nut reactions,by contrast, had all returned a result in the 10 range — these are very, very serious allergies. I asked, hopefully, if she might outgrow it? He said she might, but his expression showed clearly that he didn’t think it likely. The girls were fed up, their patience was gone, and he had to go — I never got a chance to ask about the other reactions.

When I got home, the reality of the whole appointment hit me… No answer about the pain (and I had been so damned hopeful!), my best option being to wean E2 before she’s ready, and these test results! Egg, dairy, and nuts… Try to think of foods that don’t contain any of them — any trace of them. They’re in everything — cakes, cookies, candies, cereals, Chinese food (peanut oil), anything with mayonnaise in it, hamburgers (egg to bind), meatballs, anything that’s been breaded… Egg shells are used to clarify coffee. Even breads and sweets are often brushed with milk or egg to make them glisten. So hard to avoid! And the nuts allergies (and possibly the egg) are to life-threatening levels!

I looked at my little girl, so unsteady on her spindly legs, at that moment bending down to pick something unknown off my kitchen floor, and I realised the implications of this. I would always need to worry about every tiny thing. I will be obsessively reading labels for nuts the way I have been for soy for the rest of her life, but not to avoid pain — to avoid death. I will be worried — life-and-death worried — every time I send her to a birthday party, or on a school trip, or to a slumber-party. If someone gives her the wrong thing… if she eats the wrong thing… will they know how to use the epipen?… will they take her to ER?… will they realise how serious an allergy is? It suddenly felt like a life sentence. It was too much. My tiny, tiny, precious daughter! How could I possibly protect her? How could I keep her safe from this?

I had wanted to sit down and talk it all through with the doctor much more than we’d been able. I wanted to go through her reactions properly, have each one explained so I understood it and knew how to handle it. I wanted to ask him a million questions (…we have to avoid food containing nuts, but do we have to avoid all traces of nuts?… what about food made on equipment that’s previously handled nuts?… do I need to stop eating nuts while I breastfeed?… are her spindly legs thick enough to use the epipen on, or will the needle jab into the bone?…). It seemed a hell of a bombshell to be dropped like that, in a rush, at the end of an appointment. I thought about ringing up and making another appointment to go through it all properly, but I felt sure that would put him over the edge of suspicion with me — four appointments in as many weeks would have me chalked up as an attention-seeking loony for sure.

It was all suddenly too big for me — so much stupid medical stuff, so much pain, and now this worry and all these swirling questions… I was sick of it all. I turned toward the kitchen sink and leaned heavily on the counter-top, my head sinking low, my hands in my hair. The girls were playing happily with some blocks and a doll behind me. I started sobbing and I couldn’t stop.

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