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Posts Tagged ‘food allergies’

Going into this week, it was not without a little trepidation, but I wasn’t fully aware of my own feelings.  I just knew there was an uneasiness hovering, lurking, in the back of my mind.  When I finally put my finger on it, I realised that I wasn’t wrong to be a little uneasy.

Blogging has not come easily to me lately.  I’ve chalked it up to everything that’s been going on, but I know that’s just an excuse.  After all, we’ve been through a lot of fraught and stressful times in the past few years, and I’ve been able to blog right through them — no sooner would I sit down at the computer than the words would spill forth, so fast that I could hardly type them all out.  But, just lately, the words have… stopped.  Just stopped.  I sit down at the computer and nothing comes.  My mind goes blank, even as only moments before I had been writing blog post after blog post in my mind.  When I come to type those thoughts out, I find they are no longer there –just gone — and trying to force the words out is as futile as trying to push a pile of sand up a hill.  And that has caused me to panic a little inside, because I don’t want to stop writing.  I don’t want there to be nothing there.

I have never been overly keen on those blog posts that recap and look back at other blog posts from the past.  I know they’re useful and relevant sometimes, but they remind me too much of when you turn on your favourite television show and find all the characters are sitting on the couch, drinking coffee and laughing, and saying, “Do you remember when…?” while the screen fades out to various clips from old episodes.  Arghhhh… I’ve seen all this before, and I switch over to something more interesting.

But, wading through the deep sand of this dry spell, I’ve considered doing one of those “looking back” blog posts, to sail through this drought on the coat-tails of what I’ve written before.  I know I’m not writing anything of worth these days, but look!… look!…  I’ve written good things in the past! So I sat down for a moment and looked back at my past posts, from this time a year ago, two years ago.  Of all the weeks in the year, and with that strange feeling of foreboding looming in the back of my mind, I choose this week to look back.

It was a year ago almost to the day that we rushed E2 to the Emergency Room for the first time, as her breathing grew slower and slower and more laboured and we finally realised that this was serious.  It was the night that they gave her breathing treatment after breathing treatment that had little effect, and the doctor finally explained to me — exhausted and hardly believing what I was hearing — that if she didn’t respond to this last treatment, they would have to cut a hole between her ribs and insert a tube into her lungs, because her muscles were going becoming fatigued and she was not going to be able to keep breathing on her own.  It was the first sighting of her (now diagnosed) asthma.  It was the night I realised that my daughter had nearly slipped away…  that had we been living only a couple of generations ago, she probably would have slipped away quietly as we slept.  And that was the night I realised that her own mother hadn’t spotted the seriousness of the situation and that, if I’d been left to make the call on my own, she might well have died.

It was two years ago exactly that I finally couldn’t take another moment of this mysterious, excruciating pain in my breasts and, with all the doctors’ offices closed on a Sunday, spent seven hours waiting to be seen in the Emergency Room, where the doctor examined me and thought she found an “irregular lump” and — eight days into our new life in the United States — I contemplated all the dark and frightening scenarios that come rushing in after those words.  It was the day that we tumbled head-first into the ridiculously complicated pit of confusion that is the American healthcare system, with only a high-deductible temporary policy to break that fall, and learned first-hand that it is not only the uninsured who face misery when disaster strikes, but America’s under-insured as well.  It was the start of the difficult journey to eliminate soy from my diet that led me to realise not only what a detrimental effect this seemingly innocuous food can have, but also to nearly turn my life upside-down in order to avoid the all-pervasive soy in the typical American diet.

So, two years and two trips to ER.  Two years and two stressful days that I’ll be glad never to repeat again.  And then I cast my mind back one more year, to three years ago…  You can’t read about that day — I wasn’t blogging back then — but we spent that one in hospital too.  We made another rushed and stress-filled journey along icy roads in the dark of night.  And there were hours of pain and an awful lot of blood, and that strange sensation of time slowing down and everything coming into sharper, excruciating focus.  And it went on for hours and then… it stopped.

And I looked down and asked the midwife in surprise, “Is it a girl?!?”, because I’d been sure we were having a boy.  And the midwife nodded, and my baby took in a great lungful of air and let it out with a loud cry, and we all smiled with relief.  And then without any delay — without even cleaning her off or even cutting the cord — the midwife lifted her onto my belly, so the baby and I were skin-to-skin, and she latched on and began to feed hungrily, drawing comfort from the warmth of my milk and the warmth of my skin, and slowly letting go of all the fear and stress that the last few hours had been — for her as much as for us.

E2 is three this week — and she is beautiful… wonderful… everything I could have hoped her to be as I gazed down on her in my arms that night she was born.  Over the next few days, we will sing “Happy Birthday” to her and open gifts and celebrate these amazing three years and the miracle she is to us.  And I will thank God that she is with us — because there are so many ways that she might not have been.  And I am aware of them every day.

And if we don’t end up in hospital this year (touch wood), that will be fine too.  Because things come in threes, and we’ve done our three, thank you very much.  This year then, perhaps just a nice quiet birthday, eh?  And maybe another slice of that (surprisingly good) egg-free, dairy-free, nut-free, soy-free birthday cake.

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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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Another night of watching her breathe, of watching her chest rise and fall and having to make that judgment call.  What has caused E1’s nose to run and M’s throat to feel a bit scratchy has attacked E2 ferociously.  She is wheezing and rasping… and I know those sounds so well.

She spent the day trying to be her lively self.  But she kept crashing and coming over to me, heavy-limbed and whinging, and we’d feed or just sit and cuddle, until she’d regained herself again and would scramble down to join her sister.  But it wouldn’t be long before she’d be back again, asking for milk, or to be held, or just crying because she felt miserable.

The holding and the feeding I didn’t mind — not even the crying, really — but the breathing was worrying me.  When it turned raspy and I saw the first hint of that collapsing at the base of her neck, I pulled out the nebuliser and gave her a breathing treatment — remembering the doctor’s words that I was not to follow my instinct and hold off, but use it as soon and as long as she was wheezing.  Her breath quietened for a while.  And then began to grow noisy again as she played.  I watched nervously…  looked a the clock…  thought about the drive to ER…

Dinner was coaxed into her, and then another breathing treatment, her face hidden behind the mist rising from the mask.  I should have put her to bed — she was so ready, exhausted at the end of her long day — but I held her in my arms and kept her up for another hour, just to watch that her breathing was stable.

M came and sat with us.  She seemed fine, but the rattle was on the edge of each breath.  M looked at me, his mouth pressed tight with concern.  Silent, but our fears the same.  I checked the clock again.

I carried her upstairs and fed her again, and laid in the dark listening to her breathe, feeling healing milk flow out of me.  Her nose was blocked and so she kept having to stop and come off to take air in through her mouth — a frustrating way to nurse.  Eventually, I realised she’d fallen fast asleep, peaceful and safe in her mother’s arms, her mouth open and her breath warm on my skin.  I stayed where I was for a little while, holding her, watching her.  Still and resting at last, her chest rose and fell easier now, the wheezing barely noticeable.  I stood up carefully and carried her to her bed, my apprehension calmed just enough.  She hardly noticed when I laid her on her mattress and gently, gently pulled my arms away.

A few days ago, I was writing a letter a friend in the UK — a real letter, with a pen and paper, as my friend doesn’t really do the the internet that much.  This friend is so dear to me and, yet, it’s so rare that I get the chance to sit and write that I hadn’t done it in nearly a year.  So much to tell…  I was trying to summerise E2’s condition, to explain everything without drowning her details…  the allergies diagnosed, and then more of them, choice between child and cat, the tininess of her, the breathing troubles, the trips to ER, the way she succumbs to every little thing…  Compared to so many dread diseases that she could have, what we face with her is nothing really.  And yet, it’s constant, never-ending…  It touches everything.  It’s changed our lives.

I searched for a word, a way to describe her, to describe her condition…  A nightmare?  No, that wasn’t not right — cancer is a nightmare, not this.  A misery? No!  She’s such a joy!  Even with all there is to contend with, misery wasn’t right either

And then I got it.  I knew how to express it — all the frustration, all the worry and the fear, the tests, the disappointments, the way she ends up so close to the edge with every little thing…  She is an exasperation.  My daughter is a medical exasperation.

But tonight, she is upstairs in the dark, breathing peacefully.  And that is everything.

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Post-script: I stayed up a bit too late writing this, and then realised I had to stay up a bit later to finish loading the dishwasher and get it running.  So it was very late by the time I finally laid down in bed…  A few minutes later, E2 was crying for me, alarmingly weakly.   As I lifted her out of her bed, I could see how she was struggling, the base of her neck collapsing in that grotesque way.  I’ve just given her another treatment and she is breathing freely again (though coughing a lot and hoarse) and running around the room like a lunatic, completely hyped up from the stimulant in the drug.  It will be awhile yet before I can see if this will hold, and feed her down again.  It is 4am and I have had no sleep.  ER may still be on the cards.

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Just got the call from the allergist’s office…  E2’s RAST test for coffee has come back negative!  She is (probably*) not allergic to coffee!!!  I am over the moon!!!

And I’d love to natter more about it, but I gotta go.  It’s been three weeks since those hives appeared on her belly and I’ve had not one sip of coffee since.  So I am out of here and off to the coffee shop for a well-deserved — and long delayed — cup o’ Joe!

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*Now, this joyous news was of course delivered with that standard warning that RAST tests do not actually confirm the existance or non-existance of an allergy — they only indicate the likelihood of an allergy.  So, it is possible for a person to have a negative RAST result but still, in fact, have the allergy.  And vice versa: it’s possible to have a positive RAST result (even a very high result) and be able to eat the food with no allergic symptoms.   RAST tests are like that — simultaneously helpful, confusing, and frustrating.

But the negative RAST is a strong indication — an almost surefire indication — that E2 is not allergic to coffee.  Which is great news!  And also ever-so-slightly concerning… because something caused those hives and now we don’t know what did.  Continued vigilance and caution, advised the allergist’s office.  Yes, I agreed.

As always.

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But the thing with your daughters finally getting to eat cake — and your mother realising that she can be the source of this new joy to her granddaughters and so embracing the opportunity to make sure there is cake to be had every single day — is that you get used to them running around with chocolate crumbs all round their mouths.

So even though I did realise, after a few days of this chocolate-covered mayhem, that it isn’t necessary for them to have cake every day and I did ask my mum to perhaps scale it back a bit, it’s still been common enough to see those choccy-smiles gazing back at me.

And so I didn’t give it a thought the other day when E2 came running up with chocolate icing spread all over her face, covering her teeth, a bit streaked in her hair, and the ends of several fingers coated in the stuff and spreading it in little clumps on everything she touched.  Part of me sighed at the inevitable (and unenviable) clean-up job ahead, but there was another part of me — the part that worried so when she stopped gaining weight, the part that was so afraid when she dropped from the 98th percentile to the 1st percentile, the part that has struggled every day for the past year with her incredible dietary restrictions — that was just so happy to see her eating and enjoying and just being a regular kid.  It may not seem like much, but it is.  Oh, it is.  And I put aside all my healthy-food fanaticism to just soak up the joy of seeing my kid covered in chocolate-y goodness.

Until I remembered that I hadn’t given her any cake that day…  And then she turned around and toddled off, and I spotted ther was more chocolate — much more than was ever on her face or hair or hands — coming out of her nappy and spread down one leg.

And I realised, with sudden horror, that it was not chocolate.  And the clean up was a completely different job than I had thought…

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The first time I cried after E2 was diagnosed with all her allergies was in the car on the way home from the appointment.  The news had come suddenly and with no real explanation and I was feeling shell-shocked.  The implications her (then) eight food allergies were beginning to dawn on me…  And the first thing I realised was that she would probably never be able eat cake on her birthday, and that thought upset me so much that I burst into tears right there behind the wheel.

Handling birthdays and other celebrations is one of the hardest things to deal with when you have kids with food allergies (or, I’m sure, when you are a child with food allergies).  When the allergy is nuts, wheat, soy, dairy, or eggs, the cakes and treats at most parties will be entirely off-limits.  And that’s tough on a kid, to sit by and watch everyone else dig in when they can’t, or to have to eat something that’s different (but safe) from what everyone else is having.  It takes a lot of maturity on the kid’s part to handle that gracefully, and a lot of patient explaining — and extreme vigilance — on the part of the parent to get them to accept it.

I’m not that good parent.  I’m far too lazy, and so I’ve avoided the issue completely thus far by simply not letting the girls know about the parties I’ve declined on their behalf.  Alright, it’s only been one but I dread the prospect of sitting by as a dozen pairs of sticky hands touch the same tables and toys and gifts and balloons that my girls’ hands will then touch.  I don’t want bring our own food, and corral my kids to their own table, and make the host-mother feel so uncomfortable and inconvenienced.  And I know I can’t keep an eagle-eye on both girls at the same time — my eyes don’t work independently of each other.

But even I, lazy mother that I am, can’t back out of their own birthdays, so the cake issue had to be addressed!  And my mother, fairy grandmother that she is, performed the small miracle that her granddaughters needed.  Somehow, she took the nut-free, soy-free, wheat-free, dairy-free cake mix from Cherrybrook Kitchen and, without adding any dairy or egg at all, created such a delicious birthday cake that we have had it for every occasion and celebration since.

My girls can have cake!  My girls can have cake! And have it, they do…

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“Mmmm… I fancy some coffee,” I said.  M made it, and we stood in the kitchen and drank it, enjoying the quiet of that room as if it were a haven, while chaos reigned in the family room.  It was as close to bliss as I can find these days, with two toddlers about — to stand in the kitchen and drink coffee in silence with my husband.  When I finished the first cup, I poured myself another.

It was over too quickly, as ever, and time to get the girls down for their naps.  M took E1 up to the loo and then get settled, while I attempted to grab her little sister, who was running away from me as fast as her tiny legs could carry her and yelling at the top of her voice, “Nooooooooo!”  When I finally got caught her, she struggled so hard that I knew laying her down to change her nappy would pointless, so I hoisted her up onto my shoulder instead to create an exciting diversion.  Ooooh, this was new, being up so high!  She stopped screaming and looked at me, intrigued and starting to smile.  I capatalised on this upswing and told her I was a tiger! and then began to bite her bare belly.  She erupted into giggles, pushing at my face with her outstretched hands, and protesting most unconvincingly.  I was laughing, she was laughing, and my ruse had worked: when I laid her down, it was on the changing mat, but now she hardly noticed.  The whole operation was down before she even realised what was happening.

And then, as I was fastening the tabs on her nappy, I noticed the patch of red forming on her stomach.  Like someone pulling the needle across an old vinyl record, everything stopped.  I looked closer, and saw three white spots — three tidy little hives evenly placed amid the patch of angry skin.

My mind went straight to Code Red and began the drill:

When did she last eat? A while ago…  maybe an hour…

What did she eat? Nothing unusual, nothing new.

Alright, what touched her skin there? Oh!… My mouth.

And what did you eat? Coffee.

Coffee…  Coffee… Coffee!  Coffee beans!  Beans…! Oh shit.

The RAST tests say she’s allergic to beans, though we’ve never field-trialled the hypothesis, and I always knew in the back of my mind that that meant coffee was risky as well.  And here now, on her skin, the three perfect little hives staring up at me seemed to be telling me that it was.  Oh, and another, higher up where… yes, she’d bent down in her giggling convulsions and I’d nibbled her a bit there as well.  Yes, there was no doubt…

So this is a contact reaction! It takes a special level of allergy to break out in hives just from mere contact rather than actual ingestion — it’s a food allergy on hyper-drive.  This, I was slowly beginning to comprehend, was a serious allergy — possibly one of her most serious to date.

And… and… not even a reaction to the actual drink itself, just to the trace of it left in your saliva!… It got more serious still.

I stopped and pulled it back — it could have been the milk in my coffee.  We know she has an allergy to dairy, but it’s always been relatively mild — she can tolerate the bread I make even though it uses a small amount of milk powder and wee bit of butter.  And though I don’t drink milk directly, or even have it in my umpteen cups of tea each day, she does tolerate a splash of milk in my occasional cup of coffee.  But maybe that kind tolerance has now disappeared… maybe it was the milk.

I thought about testing it myself — putting just a drop of milk on her skin to see — and then quickly realised I’d be a fool to do that.  If her milk allergy was indeed on the march, morphing quietly from “mild” to “contact”, then a second exposure could potentially move directly past hives and escalate to something far, far more dangerous.  No, I wasn’t going to conduct any stupidly curious experiments on my daughter.  I would ring the allergist office on Tuesday and ask their advice.  Until then, we’d just have to treat coffee and milk with equal suspicion.

But no need!  Sod’s law ensured that the very next day, she made a bee-line for her sister’s milk cup when it fell to the floor, and got to it before any of us could catch her.  It was snatched from her grasp with moments, but a drop… a drop… a milky white drop flew from the lip of the cup and arched through the air, falling, falling, falling in slow motion, until it landed with a gentle plop on the top of her bare foot.

I froze.  M froze.  And she, sensing our tension, stood stone-still and looked at us in confusion with her blue eyes wide.  A paralytic moment and then we rushed into action — I wiped the droplet with my finger and reached for the wipes in order to wipe again more thoroughly.  And then… just stopped myself and looked at her foot… Nothing.  I made myself wait on the wipe for a minute more…  Nothing.  I let five minutes pass and then checked again…  Nothing.

It wasn’t the milk then.  It was the coffee.  We have found her thirteenth food allergy.  And it looks to be fierce.

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