Category Archives: Food Allergies

Carissa K: What It’s Like to Be an Allergy-Mom

This. Much more reasoned than my angry rant yesterday. The other thing about managing chronic illness in children: sometimes you just get mad.

Most of us never grew up with a friend or sibling with food allergies. Unfamiliarity leads to a misunderstanding and a missed tone about food allergies. So while our kids seem to get it just fine, there’s a great deal of mental reconditioning and a real shift in mindset that needs to happen for us adults.

via Carissa K: What It’s Like to Be an Allergy-Mom.

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So Angry

I am so angry right now there are not words in me to express it.

I had a long conversation last night with a mother whose son has autism. What they are going through is heartbreaking. Heartbreaking in ways that it is difficult to imagine. She said she doesn’t know what to do anymore. And I didn’t know what to say. All I could do is listen. Listen and pray. And theirs is one story among thousands and thousands.

My own son was gasping for breath just two nights ago, doing that pacing thing that I recognize from my own asthma attacks, when your body moves to try to find the oxygen because you don’t instinctively know what else to do. Yeah, imagine that. And now picture that he only recently learned to walk and is still covered head to toe in baby fat. We avoided the hospital this time and were able to get his breathing back to normal, but my God it was scary.

My older son is getting new allergies every day, it seems. He is miserable and frustrated. We all are.

They will most definitely need special accommodation in their schools for their allergies and asthma. And I’ve already heard it from other parents of “normal” kids: why should we have to change what we do just because your kid has a problem? Why should I not be able to send nut-covered cupcakes to the classroom just because your son has allergies – it’s not fair! Yeah – talk to me about fair after living for one month in my house! You can take your nut cupcakes and shove ’em where the sun don’t shine.

And then I read this:

We just went and visited our local township community preschool. Out of 400 kids, 100 had a delay of some sort. The classroom they were going to put my son in had 20 kids, 12 autistic – with 1 teacher and 1 aide.

The kicker is they get to call these classrooms “mainstream” and “general education,” even though we all know they are anything but. If the ratio is 300 NT to 100 ASD, why are rooms over 50% autistic? Funny.

The point is – even if we are to shove off all these kids into their own special segregated rooms (“developmental preschool”) to spare the neurotypical 4 year olds not having as much attention bestowed upon them – it’s the same freaking thing. There’s TOO many of them. EVERYWHERE.

So my son is going to church-based K with an ABA-trained aide, paid for by ME. My school district told me these were my choices. Put my son in a room with 12 other ASD kids with no structure and no expectations, or pay for something else myself, all while my tax dollars go towards educating everyone else’s kids – just not mine.

And if we are going to get honest – *really* honest – I think that’s a load of shit. Why do I have to pay to educate your NT kids, and then pay out of pocket for my own just to get him an approprate education? Total crap.

It’s a giant, giant mess – and getting worse every single second.

And it makes me want to SCREAM. “There’s too many of them.” Them.

Why do you have to pay to educate our kids (at public school)? WHY? Because this is what it means to live in a community!! And do you think these kids or parents caused their problems? Do you want to hear my theory on what is causing epidemic levels of ASD and allergies in our children? I think we did this. I don’t know how, but my money is on toxins in our environment (GMOs, pesticides, etc.) or the use of technology we haven’t fully tested for long-term side effects (sonograms, medicines).  We have bought wholesale and willy-nilly into whatever any damned swindler is selling us.

The least we can do is show a little fucking compassion. Let’s stop with all the “us” and “them” shit and get to work on finding a cause and a solution and do the best we can by all of our kids. Your “normal” kid and mine. All of our kids.

And guess what? In this generation of children, if your child is neurotypical and immunotypical, you are not more virtuous – you won the fucking lottery.

And yes, I said fuck and shit and damn.

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(Not) Enough!

We spent yesterday in the hospital ER. Little N woke up in the middle of the night unable to breathe.  Allergy-induced asthma. Seasonal allergies this time. We tried to treat him at home, but it just wasn’t working. His breathing was getting worse and worse. At 9 AM, we decided we couldn’t wait anymore. He was getting lethargic. Alarm bells ringing like crazy in my sleep-deprived head. We packed up the kids, grabbed our ER “Go Bag” and headed off to Mt. Sinai.

His blood oxygen level was 92 when we arrived. That’s still normal range, but toward the bottom. Worrisome. The doctor said that they don’t like people at home below 94, so it’s good we brought him in. The first round of medication didn’t help him enough, so we sat and sat and they gave him a second dose, and we waited to see if that was going to work. It did, thank heaven, and we weren’t admitted this time. (Last time, we were, and it was 3 days in the hospital.) We are really getting to know the hospital. This was our fourth trip in six months. My husband was even giving other patients’ families directions to the cafeteria. Sad.

The day before was stressful, too. We had martial arts class for Big E in the morning and an awards concert we were singing on together in the afternoon. Easy, right? Two things? Simple! Not with two little kids. My general rule is that we schedule only one thing per day because that’s all we can guarantee will happen. However. Martial arts is Big E’s favorite thing of the week (ours, too) and the concert was important to us.

The stress happened before the class. Husband (from now own I will refer to him as RHR – less typing) was in the shower. I was responsible for getting the kids fed. Big E is looking small lately – we are concerned with allergy elimination diet for him. He’s growing and needs his nutrition, so we have cautiously added back Little N’s allergens. But it makes me a nervous wreck. Big E can have milk on his cereal, but only if Little N is asleep in the other room or is strapped into his high chair. Otherwise, Little N will find a way to pour his brother’s deadly milk all over his vulnerable little head.

So – you can see this coming a mile away – we are running late. We need to leave in 15 minutes. I need Big E to eat and Little N to eat and I have to finish getting dressed. I try to oh so tenderly place Little N in his chair, at which point he arches his sweet little back, stiffens his tender little legs, and shrieks like all of the cats in hell. No WAY that child was going in that high chair. I try to press the point with him. Shrieking gets louder, more determined. “Buh buh buh buh BUUUHHHHH!!!!!!!!,” he yells.  Well, SHIT! I just nursed him. Literally minutes ago. This kid is NOT in need of a nursing session. He NEEDS to sit in the high chair and eat some cereal and fruit and let me feed his brother. “RHRRRRRRRRRRRRRR!!!!!!!!!!!!!!” I yell. Nothing. He either can’t hear me or is strategically ignoring me. I sit down with Little N and nurse. But I’m really frustrated and angry. If we are late, Big E can’t participate in the class. Discipline is part of the whole deal – they don’t let lazy parents just waltz in whenever they feel like it to let their undisciplined children disrupt everyone else. No, we have to be there on time. And They. MUST. EAT. But picture it – how am I supposed to pour what is essentially poison to Little N into Big E’s bowl while I’m holding a thrashing screaming Little N? Man, oh MAN I was wishing for telekinesis just then!

But I don’t have it, so my tension level got higher and higher and higher and I started to imagine smashing a baseball bat into a wall, and then I picked up a pillow and screamed sang a high A in alt into a pillow. (RHR heard that one!)

Did I mention yet that I haven’t had any caffeine yet at this point?

The rest of getting to class is somewhat of a blur. RHR got dressed and somehow we got Big E fed and we arrived in class just in the nick of time.

And then we sang the afternoon concert and then we spent Sunday in the hospital, forced to cancel singing on a studio class in the afternoon, and the angst that came with that. (I need to sing this aria in front of people, will people question our commitment if we don’t show up, etc, etc, etc.)  And the whole weekend forced some serious conversations between me and RHR about how we juggle our careers and caring for a special needs kiddo. We have some ground rules now and a master plan, which feels good.

But I was still feeling totally completely overwhelmed. There’s just not enough time, not enough of me. And I feel that way all of the time.  Every moment of every single little day, I feel like I am drowning in responsibility to a million different people. All of them only aware of their little tiny part of my day, all of them teetering on the verge of disappointment, possibly anger, possibly some kind of harm (to their peace, their schedule, their business, their reputation, their physical bodies – like not eating, for instance). All of them underestimating the time it takes for me to do what they want, and by underestimating, devaluing what I do. And I feel like a loser for not being able to meet every expectation effortlessly. I feel like other women can. I mean, honestly – I’m not unique. I know that. I don’t have an unusual amount of responsibility. My sister-in-law has a special needs kid. So do several of my friends. Lots of people deal with far more severe food allergies, or even worse illnesses, altogether. Some people can’t afford food. Some people don’t have access to health care or clean water or live in a war zone or dig ditches in Siberia I get it, I get it! Which makes me feel so much worse because why can’t I get a grip and do this little bit that I have to do well. Why can’t I succeed at, essentially, being a woman? A perfect wife, a perfect mother, a perfect singer, a perfect friend, a perfect daughter, a perfect niece, a perfect sister, a perfect teacher, a perfect employee, a perfect neighbor, a perfect citizen, a perfect boss?

It’s a shame. It’s shame. It’s – what’s the German word? – unmöglich.  And here’s the thing – I know that no woman out there is doing it all perfectly. We’re just not talking about it.

When I told RHR that I feel exhausted and overwhelmed and nobody gets it, he challenged me to write a list of everything I have to do and post it somewhere public, so that the next time someone says, “I just need you to…” or “It’s just a little thing, it won’t take you more than…” I can point to the list and essentially say, take a number. But the more I thought of it, the more I thought, we need to know each other’s lists. We need to see in black and white, holy hell that is too much work for one person. We can’t possibly do it all. It’s unmöglich. And that’s ok. We are still enough. We are still worthy of being loved. We are still enough. Enough!

Feel free to post your own list in the comments below.

To Do List

Here’s my list. I’m going to add to it as things come up. Yeah – I’m looking at this and already thinking it’s ludicrous!

  1. Give babysitter lowdown on asthma weekend, along with medication instructions
  2. Put bottles together for pumping session
  3. Sterilize pump parts
  4. Meet with boss #1
  5. Meet with boss #2
  6. File extension for taxes
  7. Hang up new HR signs
  8. Set up coffee with K
  9. Go to chiropractor appointment
  10. Put in research request for 3 companies
  11. Reschedule 5 separate reference calls
  12. Reschedule Friday meeting
  13. Schedule 2 new reference calls
  14. Return damaged handbag to Zappo
  15. Get flight itinerary for Thursday
  16. Send a travel link to colleague’s wife
  17. Check in with friend about weekend drama
  18. Schedule 3 coffee dates for client
  19. Go through bills
  20. Get resume & comp for candidate
  21. Instruct babysitter in way to force-feed medication to unwilling toddler
  22. Pump for Little N’s bottles for tomorrow – three times
  23. Nurse – 5-8 times while awake, 1-2 times in the middle of the night
  24. Make dinner
  25. Clean up apartment
  26. Write two lesson plans
  27. Go to voice lesson – sing the crap out of two of the hardest arias written for soprano
  28. Schedule conference call
  29. Prepare origination form
  30. Review and correct invoices
  31. Fix broken login
  32. Enter search information into database
  33. File expenses
  34. Request reimbursement for lost metrocard
  35. File boss’s expenses
  36. File boss’s personal travel with reimbursement company
  37. Give instruction on setting up a conference with a new vendor
  38. Pour caffeine down throat
  39. Respond to a call from Citizens’ Complaint Review Board about police violence
  40. Update two tracking sheets
  41. Type up a handwritten document
  42. Make two folders with labels
  43. Track two engagements (not own but for someone else)
  44. Schedule 4 Skype interviews
  45. Schedule 2 phone screens
  46. Contact Company A regarding questions from Fiscal Sponsor
  47. Thank Company B for nice note about declining to offer an in-kind donation and ask for other suggestions
  48. Make 5 initial fundraising inquiries
  49. Make marinade for ribs
  50. Play with kids
  51. Find a pianist for recording
  52. Schedule lessons
  53. Send fundraising file to husband
  54. Eat
  55. Sleep
  56. Shower & Dress
  57. Pray
  58. Schedule play date for Big E
  59. Confirm lesson with student
  60. Teach kids optimism and gratitude
  61. Book studio
  62. Get applications for CBO preschools
  63. Buy diapers and wipes
  64. Get kids ready for bed
  65. Schedule kids’ dentist appointments
  66. Make sure Little N is covered on our dental insurance
  67. Get laundry together to be done tomorrow
  68. Turn on out of office message
  69. Edit spec
  70. Second meeting with boss #2

NOTE: I know that not all of this will get done. That’s the point of putting the list here. I know your list is this long, and we all know it won’t all get done. So we can say enough is (quite literally) enough. And be compassionate with ourselves and with each other. And if someone isn’t compassionate with you – well, that’s their anxiety/insecurity/disconnect/shame and maybe they deserve an extra helping of compassion from you.

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Filed under Breastfeeding, Connections, Food Allergies, God, Parenting, Singing, women

Soy Food Challenge Fail: Back to Square One

Little N failed his soy food challenge yesterday, and because of his reaction (10 hours of vomiting) to Hot Cross Buns I made from scratch on Good Friday in which the only potential allergen was wheat, which we were home challenging, we are back to Square One.

His current diet eliminates wheat, milk and all milk products, eggs, soy, fish, shellfish, tree nuts, peanuts, seeds of all kinds except flax (sunflower and sesame he is particularly allergic to), barley, quinoa, rye, pea, radish, eggplant, kiwi, chicken and all poultry, and I think I’m forgetting something and don’t have his list in front of me.

Big E looks very thin to both me and my husband, so we are strongly considering bringing back the allergen foods into our home, which have been eliminated for the past three months. I don’t want to risk his growth and nutritional well-being. I don’t want to hear that he is failing to thrive at his 4 year old checkup. I don’t want to hear that our elimination diet has done irreversible damage to him.

So now I have to go back to the drawing board to keep Little N safe from exposure, as none of my other methods besides total elimination have so far worked.  And I have to really put my nose to the grindstone (ow!) to with all seriousness learn cooking and baking without his allergens. No small order given the number of grains to which he is allergic. I thank God for coconut milk and Egg Replacer. And thank God there are meats he can eat. And thank God I can still nurse.

His doctor said yesterday that it is pointless to do more hospital challenges until he is older and home challenges at this point are too risky. So this is where we’ll be for some good while.

We won’t be leaving the kids in childcare at the church anymore – too risky. We don’t go to church coffee hour – same reason. I’m really dreading the prospect of school. I still cry when I go grocery shopping, both when I’m in the aisles reading labels and when I see the total ring up at the register.

But I know I’m not alone, sadly:

RANTS FROM MOMMYLAND: Domestic Enemies of the Allergy Mom.

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What food allergy looks like

I admit it: before Little N was diagnosed with food allergy, I didn’t get it. Big E has food allergies, too, and was diagnosed before Little N even started solids. But there was one incident, which was not anaphylactic, and while scary, it was a food (tree nuts) that is fairly easy to avoid. My mom has oral allergy syndrome. Her mouth gets itchy if she eats certain fruits. I have seasonal allergies, as does my husband. We get itchy eyes and runny noses in the spring. Annoying, but not that big of a deal. Easily fixed by taking a couple of pills until the pollen is gone. I didn’t get it.

I’d like to think I was sensitive about it. I mean, I felt sympathy for people with food allergies. I work with two people with  life-threatening food allergies. But without thinking, I ordered hazelnut coffee at the request of another coworker, not realizing that I had just contaminated the coffee maker, forcing my food allergic colleague to buy her coffee every day.

And since Little N’s diagnosis, I’ve encountered some really unbelievable sentiment and situations. Here are a few:

  • At a party: The baby wants the food! Why don’t you just give it to him? He would like it! (I don’t want to go to the hospital right now.)
  • At church: Childcare workers left bowls of cheese-covered crackers on toddler tables within reach of our son after we carefully explained his dairy allergy. Big E noticed them in Little N’s hand and alerted the caregivers. They seemed to think it was not a big deal. In reality, it could have killed him.
  • From other parents: It’s not fair that my son can’t bring snacks for the whole classroom just because one kid in his class is allergic! My son doesn’t have food allergies. We shouldn’t have to cater to one kid!
  • And from many well-meaning friends and family members who simply don’t understand the severity of his illness. Friends and family members who downplay or think we are overreacting. We had a friend suggest to us that perhaps he has food allergies because we are overprotective. If you can believe it.

And I get it – I do. Because that used to be me. I just didn’t get it. I didn’t get what it feels like to be excluded from social occasion after social occasion because other people don’t get it. I didn’t get altering every part of your life. I didn’t get that sometimes food = fear. I didn’t get that food can kill you. As in, dead.

And I want to share what food allergy is like. What it looks like when your whole body thinks a benign substance is poison.  I’ll say nothing here (but might in another post) about what it feels like to be in a cab racing to the hospital, watching your child lose consciousness in your arms – the fear, the blind panic as the cabbie tries to find the ER entrance and you keep checking to see if your child is still breathing.  For now, I’ll just show you some pictures, all of which are pretty mild compared to what we have seen on other occasions, when we are too wrapped up in the emergency to snap pictures.

10% of children under the age of 10 have severe food allergy to at least one food.

The pictures below are of Little N after a very, very minimal exposure to an allergic food. (Think, licking something in which his allergy is the 8th ingredient on the list.)  That’s him in hospital bed after an exposure to sesame seed (tiny amount).  What you can see is how the allergy affects his skin. What you can’t see is how it affects his lungs and his stomach and how it might affect his heart.

I want you to see this. Because I get it now. And I want everyone to get it.

IMG_0728 IMG_0729 IMG_0978 IMG_0842

And here’s my baby without any allergens in his system.  Pretty cute, huh?

IMG_1005

 

And then there is one instance I’d like to mention, too, because it meant so much to me.  Little N had just been released from the hospital. I was exhausted – totally physically and emotionally spent. We had been invited to a birthday party of Big E’s little friend from church, whose parents have also become friends – two of the most lovely people we have had the privilege of getting to know. I really wanted Big E to go and have fun, but there was no one to take him but me. My husband had another commitment that afternoon, and I had no one to watch Little N, either. I bundled the kids up and took them to the party, with no time to bake something for the kids to eat. I felt depressed. I felt like the worst mom ever. My son was going to watch as everyone else dug into birthday cake. This boy who loves cake – I was going to have to tell him no – we can’t be sure it doesn’t have nuts. I sat at the edge of the playground holding Little N, watching Big E play with all of the other children, feeling down and tired and dreading what was coming up.

And then the non-allergic-to-anything birthday girl’s mom walked up to me and said, “We bought these for Big E. We thought maybe they’d be ok for him?” And she pressed into my hands two beautiful nut-free cherry tarts she had gone out of her way to buy. They were even labeled, so I could read the ingredient list. I choked back the tears and thanked her for her thoughtfulness. There aren’t many times in my life I’ve felt more grateful. And I watched my happy, happy boy devour them, eating birthday dessert just like all of his friends.

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Mammals Suck… Milk!

What a great article/blog/project!

Mammals Suck… Milk!.

As a mom who has nursed her two children and is currently nursing and who fought very hard to do it, this is an important issue to me.  I’m not, as they call it, a “lactivist”. I believe that decisions about the way in which you care for your children are as varied as the families that are out there and the issues big and small that impact them, and that most parents have the best interest of their kids at heart no matter what decisions they make, and that most kids end up more or less just fine regardless.  But I also think it’s really obvious that this really cool, really natural thing is what’s best for kids, and that we should individually and corporately support breastfeeding in whatever way we can. And that can come in the form of education, paid and longer maternity leaves, breastfeeding-friendly hospitals, natural drug-free birth, greater community where young girls can see nursing mothers nurse, the general cultural normalization of breastfeeding, nursing or pumping breaks for nursing mothers at work, etc.  It just makes sense that if we want a healthy population, that we would do this pretty easy, low-cost thing.

I hadn’t really planned on nursing longer than three months when Big E was born. But then his birth ended up being this really difficult thing for both me and him and for my husband, too. And all totally unnecessarily. And that’s another post, but there was so much anger and trauma over what happened to the three of us, that I made it my mission to have a great breastfeeding relationship. For all of the obvious reasons listed in the article above, but also as a way of healing the three of us and as a way of kind of sticking it to the hospital that screwed us (and also tried to interfere in our BFing).  And then three months rolled around and became six and became 12…

I’m really, really, REALLY lucky that we had a very supportive and knowledgeable pediatrician and that we knew (and could afford) one of the best lactation consultants out there who came to our home and held my hand and had us sorted out in about 10 minutes. And when I encountered problems over the next three years, she offered support by phone and email and referred me to a doctor specializing in breastfeeding medical issues. I also had the support of my husband, mother, sister (who gave me a very expensive breast pump) and best friend. And I was plugged into an incredibly supportive online community of mothers with children the same age as mine (one of whom even sent me a pump bag when the zipper on mine gave out).  And I live in a state that mandates pumping breaks for working mothers whose child is under the age of three. And I have the kind of temperament that doesn’t like being told no (which I was, several times). And I also had loads of information both before my son was born and after.

And then when Little N was born, it was a drug-free home birth with experienced midwives who fully support breastfeeding. And now because he is deathly allergic to dairy and also allergic to soy, I was (pretty much!) commanded by our current pediatrician and by his allergist to continue nursing him until he’s two years old. And I was so happy I could say, “No problem!”

I wish every mother that wants to nurse the advantages that I’ve had.

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EpiPens Everywhere?

At least in places where food is served? I say, YES! More and more children have life-threatening food allergies. And there are children out there with unknown allergies, like this little girl (suspected – the autopsy hasn’t been performed yet). It’s a little thing but it could save lives.

Allergy deaths offer lessons, doctors say | TheSpec.com.

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