Talking Allergies

I had a hard time dealing with the anxiety and feeling like I was the only person who felt like I did. I can tell you that with time, it gets easier. It never goes away, but it is part of my personality now, and I have come to accept it. Knowing that the other moms feel this way, too, helped a lot.

A social worker named Deena Mandell wrote a great article that helped me a lot, I will try to find the link.

There is a theory called the Goldilocks Theory which is that some anxiety is useful in situations like ours. At times when things are more dangerous, like Christmas, or being out of routine, anxiety is what keeps our kids safe. We just need to learn how to manage it.

At some points, I would realize I was suffering too much, and I would try to find better ways. I realized I can control my thoughts, and I can calm myself down by taking a look at reality when I am allowing myself to "squirrel" (letting my thoughts run around crazy in my head). I realized I was thinking reaction = death, and skipping over the part about having an Epipen, which would save his life, and he would really only go to the hospital, which was still not good, but it is not death. At some points, being anxious was a function of keeping him safe, and so I learned to appreciate it for it's usefulness.

I have a list of good thoughts to use when I am getting to out-of-hand - he's only had 3 reations in 10 years, none in 4 years, reactions aren't death, deaths are rare, very few deaths, very few deaths in schools, more likely to fall over and die, more likely to die of asthma (I never seem to worry about the asthma, and sometimes feel like I should), food labels are best in Canada, home cooking is best for all bodies, etc. This sounds silly as i write it, but it really helps,

I work in a school and I see many parents who I feel aren't anxious enough, and I would rather be me than be them, cos I see the risks their kids are taking, and I see how the school really looks to the parents to help with setting policies, and informing them how serious this is. If the parents don't see the allergy as serious, the school can't do much either. Part of my anxiety has meant that my son knows a lot about how to keep himself safe, and I have done my very best with it. If I didn't have the anxiety, I would not have been so strict with teaching him, and I would have let things slide (I know this, cos everything else in my life has been let slide ). But with the allergy, I am just so scared, I will go back and get the Epipen, even if it means i am late, I will order the 4th medicalert bracelet he has lost, even if I can't afford it, I will buy 6 Epipens a year, even if he never uses one(we have a plan that pays for most, so don't feel too sorry for me!)

I had problems with "what if it happens and we're not there" . That really bothered me a lot, so fnially I came right out and asked the secretary at his school what would happen after the ambulance arrived - would anyone accompany him to the hospital (that was my fear, that he would be with no one he knew), and she reassured me she would go with him. She also told me how she had hugged him after she had given him the Epipen, and that she treated him like her own kid, and that made me feel better. So it is better, I think, to confront these fears, cos otherwise they just eat at you. I spent 2 years running a daycare with 7 kids and really, really avoiding thinking about what I would do if he had a reaction and I had 6 other small children to look after. My fear was that I would be at the playground, he would react, the ambulance would come and I would....what? I would not think past that point cos it was such a terrible thing - would I abandon 6 children or be with my son when he needed me most. In the end I decided that I would have police come as well as the ambulance and the police would supervise the kids until the parents could be notified - I always had emergency cards with contact numbers, and I knew that I would be with my son no matter what in that case. It made me feel better to have that plan.

I hope this helps.

Believe it or not but this thread has been very helpful for me (and subsequently my whole family). I keep revisiting it, as each time something seems to resonate in a new way and am trying to find my calm.

Julie your post was very inspiring and in my heart I know we'll get there. I think I have been over-reading and dwelling in the "what-if"s which is a slippery slope. The nuggets like deaths are more common in anaphylaxis where asthma is also present were surprises to me but also important to know. I *think* we are hyper vigilant, but I guess I want to be able to do more than we are currently. This is also why I want to expand our daughter's diet, since her meals are often different than ours
I don't think I have mentioned, but the last episode was one where I gave her a slice of non dairy, non casein cheese which I had already vetted by phone calls. One bite - "mommy, my tongue hurts" and I am sure you all know the drill from there. That I can cause this, and have been obsessively reading everything has kicked my anxiety into high gear. It was exacerbated as we were deliberating on school decisions.
Thank you for the encouragement and being so forthcoming - it truly helps and I am grateful.

Gwen Thank you for the tips to Cope - It's printed now and is one of the resources I will continue to revisit time and again. As a somewhat Type-A Perfectionist, "Don’t be hard on yourself. " is going to be hard but luckily I have my husband and great friends to remind me when I forget.

Pamela Thank you too. Your reply is SO what is in my head and very helpful. It is a little too close to home to reply to in any detail at the moment - but that's a good thing. Thank you so much for sharing.

Are ana deaths truly rare? I thought that there was poor health record data as often ERs don't recognise or statistics aren't really tracked? This is one of the obsessions in my head I have to stop. I don't even allow myself to think about what happens if there is allergy-bullying or she decides to take off her MedicAlert or stray from her epipens as she gets older... In a way, I am glad she has had a reaction in recent time since it is very "present" for her and she knows that she needs to be careful.

Thanks always everyone[/u][/i]

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renie
daughter: ana for egg, sesame, dairy, pistachio/cashew/hazelnut. allergic on contact. allergic to soy protein isolate. other lesser allergies (e.g. dogs, dust mites). well controlled asthma. eczema.
son: p-p-p-p-peanuts

The title is "Families Coping with a Diagnosis of Anaphylaxis in a Child - A Qualitative Study of Information and Support Needs". You might not be able to find the link, Pam. It used to be available from the AC website but I think they have removed it.

I have the PDF... if anyone wants it, send me a PM with your email address and I will email it to you.

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

So - I had a call back from CFIA today. I am impressed by their thoroughness - they had all the remaining non-dairy cheese tested and even went to the two stores where I bought it to buy additional packages to test.

I could cry.

Not even minute traces of her known allergens. So, it was not dairy/casein contamination as we all (allergist, distributor, us) thought. After the reaction I had taken the cheese to the allergist and he tested her (skin test) against it. Obviously a positive result. He also read the label of course and on a hunch, tested for Soy Protein Isolate. She had a positive skin test to that as well however she has soy daily, just not as soy protein isolate. I'm off to read the soy allergy part of this board and all the other resources I can find but it looks like there's another one to be added to the medicalert bracelet Not sure this crying face actually captures how I am feeling - can we get one with animated tears popping off the face?

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renie
daughter: ana for egg, sesame, dairy, pistachio/cashew/hazelnut. allergic on contact. allergic to soy protein isolate. other lesser allergies (e.g. dogs, dust mites). well controlled asthma. eczema.
son: p-p-p-p-peanuts

Oh no Renie. This must be so discouraging.

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daughter: 6 years tree nuts, peanuts

Renie, I'm so sorry to hear this. It's very hard to hear that another food must be added to an already difficult list of allergens. All I can say is, we've been through this as well, so I can well imagine what you are going through.

I wonder if you will want to consult a dietician? There are very good dieticians at Sick Kids in Toronto. You can contact them through the Specialty Food Shop at Sick Kids, or email them your question at http://www.sickkids.on.ca/specialtyfood ... estion.asp
or you can look up one locally at www.dieticians.ca.

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14 yr old daughter: no health issues
11 yr old son: allergic to peanuts, tree nuts, eggs, fish, sesame, sunflower, mustard, poppy seeds, green peas, some fruits, instructed to avoid all other legumes (except soy & green beans), pollen, cats, horses

Thank you Gem and Julie.

I actually feel battered today - but thankfully, not broken. I know we will cope. My husband and I are going to have "the talk" which means we are considering making meats for our daughter - I've been a strict vegetarian for more than half my life and my husband has been for more than a decade. It's a core principle for us, but her health comes first and if it opens up her world, we may have to go that route. Tough for us though in a big way.

We've used the dieticians at Sick Kids - thankfully our allergist connected us at her diagnosis (in large part with the egg and dairy allergies and our vegetarianism). She's even had blood work done to ensure that vitamins/minerals etc are fine. Depending how this new soy protein isolate goes though, I may be banging down their door again. Thanks for the reminder/tip.

Feeling a bit like a deer trapped in an 18-wheelers headlights...

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renie
daughter: ana for egg, sesame, dairy, pistachio/cashew/hazelnut. allergic on contact. allergic to soy protein isolate. other lesser allergies (e.g. dogs, dust mites). well controlled asthma. eczema.
son: p-p-p-p-peanuts

Are you concerned about the protein now that soy is out of the picture?

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daughter: 6 years tree nuts, peanuts

I felt like I was getting a handle on the anxiety but now of course am trying to quell the what-if thoughts.
I am concerned about a balanced diet, concerned about social issues, about more potential allergens and on and on. At the same time, I am so thankful that she's a bright, beautiful, compassionate little girl who brings a world of happiness to our little family (sorry, gushing, I know).

More on the quandry - we keep kosher as well as being vegetarian. If we have to give her meat (hoping that it won't be an allergen), my ideal would be to find organic, kosher meat for which Toronto doesn't have a market. At this point, I don't think we know what we are going to do. Definite next steps:
1) Visit allergist again (July 18)
2) Get another appointment with the dietician
3) DH and I to think and talk it all out with the information from (1) and (2). No matter what, we will do what is right for her health, as much as it might mean difficult decisions for us on a philosophical / emotional basis.

Oh - to add to the fun (honestly, I am not a big black rain cloud) she came home from Sick Kids yesterday with another pneumonia diagnosis. I say another because she had it in November, April and now. Luckily, she's a tough little cookie and has a sunny disposition no matter what is going on...

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renie
daughter: ana for egg, sesame, dairy, pistachio/cashew/hazelnut. allergic on contact. allergic to soy protein isolate. other lesser allergies (e.g. dogs, dust mites). well controlled asthma. eczema.
son: p-p-p-p-peanuts

Renie,

A big hug first - you need it.

OK, if your allergist says you're going to have to avoid soy, I'm with you on seeing a dietitian again. Avoiding soy and dairy does limit options, but is doable. Pump the dietitician for as many good ideas as possible! You'll need them.

Perhaps member Krasota will be around the boards soon and weigh in - I can't recall all her allergies but know she her list includes soy (I remember because it's one of mine too), and she's vegetarian.

Soy is another adjustment - not quite as bad as dairy, but it shows up in a lot of foods. See what your allergist says. And we'll try to help you out over in the "soy allergy" section if needed

Hang in there. Friends here are with you. Vent if you need to.
Gwen

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Allergic to soy, peanut, shellfish, penicillin

Finally a new food she'd try that isn't a "treat"! Eggplant. I was worried - we eat it plenty and it makes my husband's mouth itchy sometimes... So far so good. Getting braver, may move on to almonds (she had them ages ago but then all the almond butter companies that didn't make tahini got into the tahini market...)

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renie
daughter: ana for egg, sesame, dairy, pistachio/cashew/hazelnut. allergic on contact. allergic to soy protein isolate. other lesser allergies (e.g. dogs, dust mites). well controlled asthma. eczema.
son: p-p-p-p-peanuts

Wow, what a great thread. Renie, thank you for sharing your experiences, I appreciate your honesty and candor. What you call your anxiety is actually what I would consider a normal reaction. You have had repeated traumas (reactions, diagnoses) and have continuing battles on your beliefs and lifestyle choices. I could be wrong, but you seem to be more emotionally self-aware than most, so would feel this challenge deeply.

As a mom and a social worker, it's a constant balancing act. Sometimes I "time" myself and let myself worry/go through situations for a specified amount of time, then force myself to stop until the next day. Sometimes journalling/situational listmaking can help as well.

We keep snack containers in the car, something in my purse and carry at least one full meal (and lots of snacks)with us at all times, just in case. DS knows his snack bag and that he can choose anything he wants out of it. I hope this at least gives him some choices and control (hard to tell since he's so little though).

I just get plain tired out though planning meals. Between DS and DH, grocery shopping either takes forever or I end up with the same stuff over and over...

Anyway, I'm getting way off topic. Play therapy is an awesome way for kids to work through anxiety and Toronto has some great therapists. Parentbooks has some good kids books that help to explain anxiety to kids, ways to deal with it, identify it, etc.

Good luck and keep us posted, we're all on your side here!

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Tiffany, SAHM, Allergic to Lauryl Gallate, Rosin, Nickel, Grass, weeds, trees, dust
DH Brian, Wheat intolerant
DS Griffin (3) Anaphylactic to Peanuts
DD Torrin (4) Nothing so far!

tiffanyk - you're making me <blush>.
I feel a trip to Parentbooks in my not too distant future - I never even thought about them!
I'm going to PM you re: play therapy - it's information I need to have in my back pocket

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renie
daughter: ana for egg, sesame, dairy, pistachio/cashew/hazelnut. allergic on contact. allergic to soy protein isolate. other lesser allergies (e.g. dogs, dust mites). well controlled asthma. eczema.
son: p-p-p-p-peanuts