Talking Allergies

I apologise if this should be elswhere - I am still getting the hang of these boards...
Our 3 1/2 year old daughter is ana to egg, sesame and dairy. Even CONTACT with MINUTE traces triggers a systemic reaction with swelling, vomiting etc.
I feel like to keep her safe, I would need to stay home (not financially viable) and home-prepare EVERYTHING. Still she has such delight in having things that come from a package (the vast majority of her foods are home prepared). Before giving her anything, we contact the manufacturer and have to avoid anything where her allergens are processed on the same line, and tend to opt for products where they are not even in the facility. Still, I have sleepless nights. I know that if I call a company today, they might change their practices or expand their offering tomorrow, meaning that I could put something on her plate that can kill her. We do our best to teach her to be responsible (she knows not to leave the house without her "medical pack", that the medicalert bracelet stays on, she'll even ask me before eating things if I have called the company) but feel like we are losing the battle in making her feel safe. She seems to be developing food anxiety and won't try new things even when she gets excited about them (until they are put in front of her).

Does anyone have real tips on helping children cope with anxiety? While letting them feel normal? What about your own anxiety? I am seriously up at nights, have panic attacks in the day and live with now chronic nightmares.
Is there anyone else with children who are allergic on contact? How do you manage to not come across as a controlling neat-freak? I don't want her becoming obsessive-compulsive...

Hi Renie,

I'm so sorry to hear you're having a hard time with allergy-related anxiety. I can tell you that you're certainly not alone. A lot of parents here have been through it; can relate to what you're feeling.

I wanted to draw your attention to an article in Allergic LIving's Spring 2007 called "Fear of Food" - it dealt quite extensively with the subject of food allergies and anxiety and how to bring that under control. See an excerpt at: http://www.allergicliving.com/features.asp?copy_id=93

The experts cited had good advice for finding control (you can still order that issue if it interests you). Also, they said that - if life gets too out of control - not to feel embarrassed about seeking out an expert on anxiety disorders. One expert called the after-effects of anaphylaxis a form of "post-traumatic shock". So no wonder it's not easy.

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Allergic to soy, peanut, shellfish, penicillin

Thanks so much
I know I am not alone but have to admit, I often feel it. When life is busy, I spend spare minutes contacting companies about their products or calling to make sure they haven't changed their products/production lines. I need time to actually cope with my feelings, fears and the stresses. It seems to me that many of my friends with allergic kids are actually able to rely on labelling and can even do "normal things" like have their kids eat at food courts. They are luxuries I can't imagine since our daughter is so sensitive (reacts on contact, not only ingestion). Sadly, I also get greeted with ignorance more often than I am happy to acknowledge - including from parents of allergic children (imagine the peanut allergic mom telling me as she allows her food-covered child to continue to play with the toys mine has that "dairy? sesame? egg? oh kids out grow those and they can't be serious anyway" GRRRR!)
Like any parent, I want her to be well adjusted and feel safe. Seeing her anxiety breaks my heart. And people don't seem to get what 3 year olds can understand. On my part, I see surfaces as such a risk. I had been using antibacterial wipes for things like plane travel but now understand that I really need bleach or something to de-nature the protein. YIKES!
I will certainly look up that article (and continue researching...)
I have been talking to my doctor about my anxiety, which he frankly thinks is well founded. Still, I haven't yet found a real coping mechanism yet and fear that I am going to contribute to my daughter's concerns.
I think I will need to follow up on the tip for an anxiety disorder expert...
Phew - thanks for letting me vent!

Normal, normal, normal! You are very normal!

Yes, and this is why you must use the rule no Epi-pen (or twinject) means no eating period.

Why don't you make a list of all of the things you do to keep her safe. You might be surprised at how well you are handelling the situation.
It seems to me that many of my friends with allergic kids are actually able to rely on labelling and can even do "normal things" like have their kids eat at food courts. They are luxuries I can't imagine since our daughter is so sensitive (reacts on contact, not only ingestion).
This is the hardest part. We need to protect our children from our anxieties. Anxieties are there to help us recognise threats and to have the energy to respond. A 3 1/2 year old is too young to take on the responsibility of reading labels. Anxiety does not assist her. Bring your anxieties here or talk with your spouse but try not to let your daughter pick up on it. Her life is scary enough.
There are some excellent articles in this forum. Here is the link to an excellent article
http://www.foodallergyinitiative.org/se ... icle_id=55

No one gets through life with out their hardships. You don't know what they have to deal with. I try to tell my daughter that some people have problems where they have to inject themselves with needles everyday (diabetes etc.). I try to tell her that many people go through life not really knowing how much their friends care but to see a 3 1/2 year old actively choose foods for a get together with their friends safety in mind is pretty amazing. I have seen children this age wait patiently while I doled out safe treats.
1. Moist toweletts are your friends. Purchased in bulk they are cheaper and you can refill travel containers as you need to.
2. Keep them handy in the car, purse, childs backpack, everywhere. You can use them to wipe down tables andchaors at food courts (the staff use the same cloth to go table to table so ...)
3. If you want to place your child in the shopping cart (and he/she is not allergic to soy) take the store flyer and tear slits to corespond with the bars. Place this on the child seat and wipe down the handlle.
4. You will need to carry emergency rations. (single serving fruit?) it is horrible to have a hungry child and not being able to feed them. Try to find a safe common treat such as potato chips. OK it's not hte healthiest but it's not everyday and the specialness of it will make it seem even better to the child. That and a water bottle will often sustain the child until you can get somewhere with safe real food.
It's scary at first but if you are determined you can find a way. We need to teach our children that they are resourceful and we can do that by modelling the behaviour.

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

Oh have I been there!!! For us, ridding ourselves of anxiety producing situations and looking for safe things to do has worked very well. We've found friends who understand, fun activities and gotten unsafe foods out of the house (we just don't need the stress...it's only food). Once we started focusing on what we CAN do...it got a lot better.

Hang in there...

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DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.

Well, I can barely express that I am so thankful to read the encouragement, advice and just to feel the support. PHEW.
I could never imagine her eating without the epipen (my 6 month old has just started cereal and obviously next to no food exposure, still I won't go out with only him without at least 1 epi since I just DON'T KNOW) but one of our issues here is that she is reactive to trace contact as well. (Example - tonight a child who had washed her hands with soap and water after french fries which likely had trace dairy touched my daughter's face and she instantly got a flushed red mark where the contact was - not a reaction but her body recognised it).
_Susan_ Thanks for the article link. I do *try* to avoid pushing my anxieties out toward her or onto her - it is a CONSCIOUS ongoing, everyday effort. I also don't want to seem alike a "germ-a-phobe" mom. Ultimately, I know it is all a balancing act and I simply need to find a personal/family balance that is within my comfort zone.
Thanks for the tips too. Don't cringe but we usually let my daughter free-roam in the grocery store and remind her not to touch her mouth etc. Thankfully, she is also a very careful personality (before diagnosis) and listens well. Having had the epipen in her recent memory (Dec/06) and ambulance rides since, she is aware of what having allergies means. I do take the WetOne Antibacterial wipes everywhere. These are part of her "medical pack". We also travel with snacks she can have - I think once I got stuck in bad traffic and she was hungry - I felt AWFUL. In fact daycare generally tells us we send too much food (but I worry about car accidents, bad traffic etc - they also have some frozen staples for her because of these fears)

Chips! Seems like everyone I know with allergies in their lives can have chips - does anyone know a brand that really truly has no dairy risk (that and popcorn)? Since our daughter is so reactive AND has food anxiety I can't trial chips with her - all the companies I have called so far say they have GMP BUT dairy is processed on the same line (sigh).

saskmommyof2 - thank you for your support too! Supportive friends are our lifeline It's tips on dealing with family that we need (everyone is improving but is no where near our comfort level yet)

The one thing I think we likely all do is take great strides to make HOME SAFE. Despite external pressures (at times like hosting parties) I will not allow our home to be unsafe (like all of us I think). Some people don't get it but TOUGH!!! Our daughter's anxiety is still there though - her last reaction was to a non-dairy, casein-free "cheese" which she had in the car thankfully onl,y 1 minute from home, epipen administered AT home. So sadly, now, at times I don't think she even trusts me

(so far the company that manufactured the "cheese" is stumped as well and wants me to send the cheese back - they've provided their UPS # and everything, offering to let me know the outcome of the third party testing. However they are US based so I am not sure the sample will make it through customs)

Wow - sorry for venting so long...

Hi renie -- have you tried contacting the Canadian Food Inspection Agency? http://www.inspection.gc.ca/english/fss ... cene.shtml

If she reacted to something that is not supposed to contain dairy and it does contain dairy, they will want to know about it.


They take these matters seriously. If they do decide to test the food item after talking with you, and they find dairy present, they can then do a recall so that other people aren't put at risk.

Renie, it sounds like you have taken a lot steps to keep your little one safe.
Educating yourself is key. Discussing your worries, finding out what works for others and pulling from that what might work for you to add to your arsenal of defense will help to alleviate some of the anxiety.
Anxiety is a tool that helps us to identify dangers and respond to them. Anxiety is not all bad. But it is exhausting and can wreak havoc on our nervous system.
I just came back from a meeting at our local support group and we had an awsome psychologist who specializes in anxiety and trauma.
Her suggestions to calm the anxiety where:
Deep breathing, changing the internal dialoge (from I can't do this, what if something goes wrong etc. to I can handle this, it will be ok etc.) and if applicable, exposure therapy (not feeding the food) but introducing exposure to stressful situations slowly to reduce the anxiety.
She spoke of modeling positive attitudes as opposed to having our children pick up on our anxieties.
Very interesting!

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

renie -- my anxiety level has been up and down since my son's diagnosis. After managing my anxiety really well for a period, it hit another "peak" after we experienced a totally new situation. We were out of our comfort zone and the experience really shook me -- there were kids and adults with ice cream cones topped with peanuts walking around everywhere. I wasn't expecting it and it really sent me spinning. My anxiety wanted me to scoop up my boy, place him in a bubble and keep him safe from all of those nasty peanuts and nuts found in the world. But I don't want to shelter my son from life, I want him to experience all life has to offer -- but how could I reconcile my feelings?

After the experience I spoke to my brother and he offered me some really simple but profound advice and it has kept me grounded ever since. He asked me if I felt that I was doing all that I could to be proactive where my son's allergy was concerned. My answer was "yes". He asked me if we carried epinephrine and know how and when to use it? I again said "yes". He reminded me that "what if" world doesn't exist. He told me to focus my thoughts on my preparedness and not on the possibility of something tragic happening. I know it sounds so obvious, but it really did re-focus my attention and has given me great peace. All we can do is what we're doing -- we can't foresee every scenario and situation, but we can trust in our ability to act if and when necessary. I hope this helps.

ethansmom,

This is great advice. I'm having a tough time with anxiety right now and this gives me some peace.

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daughter: 6 years tree nuts, peanuts

_Susan_ you're right - if I had no anxiety I would probably be rather careless. It really is a balancing act though to try to model safe behaviours and not instilling unnecessary anxiety/fear. I am *trying* to take 3 breaths before reacting, so I remember not to make a situation unnecessarily scary for my girl. It's time to return to a full yoga practice!

ethansmom (I'm mom to an Ethan too) thanks for the info on CFIA. I had asked around about this and left a few messages with Anaphylaxis Canada (no calls returned in over 2 weeks - sigh). I had tried to find it on the website, but with a 6 month old, I guess I missed it. I will be contacting them tomorrow.
I have a very grounded girlfriend who also kindly reminded me that I shouldn't live in the what if world (her words too!). Intellectually I agree but perhaps since I haven't found my zone of comfort yet, emotionally I feel so vulnerable (and feel my daughter is so vulnerable) that it is hard to control the what-if thoughts. Especially the "what if she has a reaction and neither my husband not I get there before..." Grim I know, but that is the un-checked, un-managed anxiety speaking.
I do think that I take a lot of steps to keep her safe - it's trusting other people and not being able to do truly "everything" (quit my job, bake/cook and I guess home school f/t) that I haven't settled yet. I want to have her life as "normal" as possible and keep her from being defined by her allergies by others and ultimately herself.
You are right - the most empowering thing is knowing that we have the ability and will react if/when needed.
My anxiety is so out of control that I carry 3 epipens. One time when we had to administer, it slipped and discharged! I was freaked out thinking if we had been travelling and had only 2 that it *could* be insufficient in this type of freak accident. Control-freakishly, they are also different lot #s as I am paranoid I will miss a recall or something. So, yes I am taking steps to do a lot to safeguard but I also feel like I am allowing paranoia and "what-if" to creep in...

All I can say is THANK YOU to all of you who have been replying. Perhaps the extent of my nuttiness will make someone else feel a little more empowered and even sane
At the moment, this place is a true sanity saver for me

ethansmom
Thanks for the how to report information. I called CFIA this morning. At first I was really put off - the guy was very casual and told me I was responsible to have testing done on my own (with a hint of "if you are that concerned/paranoid" implied). After questioning HOW recalls occur (and a few more off putting comments) he decided that there was merit to my concern and the product.
They put me through to the complaints department and ultimately I spoke with either another group or the proper name for the complaints department. They also gave me a different phone number for reporting (I have been pulling my hair out searching for it and once/if it turns up I will add it to this thread along with the name of the group within CFIA to report to).
Anyway, back to the original point, they've called me back and screened my concern. They will be providing the information to someone else within their department closer to me who will be picking up the remainder of the product for testing.
Here's hoping that they'll let me know the outcome and that a recall will come of it if there was in fact dairy contamination as suspected.

Once again, thanks to everyone for your encouragement (and patience)

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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

My first contact with CFIA was through the information provided by ethansmom:



After that screening step, I was advised to call the "Complaints Department" for Food Safety and Recall. The number I was provided for that was 416-665-5055

We'll see what happens - two CFIA individuals came by today to discuss the reaction with me and take the remaining product for testing.

Thanks everyone!

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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

Hi Renie, Your posts, and responses by others have really struck a chord with me as well. I can really relate to your concerns and anxiety. It seems like you, and so many others that have posted, have made such good choices for your childs health. Everyone has posted such words of wisdom, and strategies for keeping anxiety at bay, and that's so important in terms of raising an emotionally healthy child. I strive to do this as well (although, of COURSE it's really challenging at times to keep anxiety levels (the parents) at a reasonable level). My husband & I have gone through some real peaks with our anxiety - particularly in the beginning (when I say beginning, I really mean the first couple of years while we were still struggling with learning about safe choices for our son), but I feel our anxiety level is much more manageable now that we've armed ourselves with knowledge and support. Honestly, this forum has been my lifeline in terms of knowledge and support. My husband and I made a number of changes to our lifestyle in order to accomodate our "new" lifestyle - living with a child with multiple food allergies, based on the experience of others on this forum Once we adjusted to this new lifestyle (for example, careful reading of all food labels, preparing all of our own food, baking all of our own bread and baked goods, no eating in a restaurant, etc.), and witnessed that our son had NO allergic reactions when we maintained this lifestyle, it was such an enormous relief to feel comfortable in terms of the choices we were making. I still have anxiety at times, but I have to remind myself that we are doing our very best to keep our son safe. It definitely took time to get to this point, and I'm sure you will get there when you find all those right choices for your child.

All the best to you!

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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

One of the experts we cited in the "Fear of Food" article I mentioned is the wonderful Dr. Scott Sicherer at the Mount Sinai School of Medicine in N.Y's Jaffe Food Allergy Institue.

Here is a sidebar of his tips. They seemed appropriate for this discussion:

Tips to Cope with Allergy Fears
from Dr. Scott Sicherer

• Don’t forget the rest of life. Parents need to see a child as a child, not as a walking food allergy. Give positive reinforcement for their accomplishments.
• Get informed. Talk to your allergist and read as much as you can from reputable sources.
• Seek expert help. If your or your child’s quality of life is being diminished by fear or anxiety, a therapist can give you strategies to work through this.
• Find support. Join a support group in your area or online, and talk to others about your allergies and the fears they trigger.
• Take baby steps. If you don’t feel comfortable sending your child on a play date, go with him and talk to the other parents about your child’s allergies. The next time, go again, but leave for part of the time. Break everything down into steps you can manage.
• Stay healthy. You’ll be better able to fight anxieties. If you have limited your diet or your child’s, talk to your allergist about steps to take to expand it.
• Remember the odds. Yes, be constantly vigilant. But deaths from anaphylaxis are rare.
• Build on successes. Give yourself a pat on the back every time you face your fears and overcome obstacles.
• Don’t be hard on yourself. Fear will win the occasional round. That’s normal – and the challenge gets easier with time.

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Allergic to soy, peanut, shellfish, penicillin