Talking Allergies

Hi there, I am the mother of a three-year old girl with severe egg and milk allergies. I've been in this chat group for awhile and love sharing info/reading others' stories, etc. There's one thing that I'm really interested in learning more about from you guys though. I'm new to all this allergy stuff - I never had any growing up. My daughter was diagnosed at the age of 1 year. So we've been on a learning curve with the whole grocery-shopping thing, restaurants, social gatherings, etc. and though there's still lots to learn I feel like I'm in a comfort zone now. But the thing I'm grappling with daily is how to make her feel as normal as possible - at home, in social settings, etc. I would love to hear from those of you who grew up (or are still growing up!) with food allergies and how it affected you emotionally, socially, etc. What things did your parents do/say that made you feel secure, included, normal, etc. etc. What things did your parents do or say that you swore you'd never do to your own kids if they had allergies? When we first started on this journey and I was still learning how to cook for her, I tended to cook 2 separate meals - one for her and one for us. But for at least a year now, we eat what she eats. If there's no non-dairy non-egg substitute that she can have, we don't eat it. eg. my husband and I will eat regular cheese because she has her vegan cheese that she eats and likes; we won't eat chocolate in front of her because we haven't found a substitute. I don't keep eggs in the house at all. I would never go out and get an ice cream cone and eat it in front of her (one of my all time favorite treats). Actually I've reached the point that if she can't eat it, I don't even eat it when she's not with me because I feel that she doesn't have that option of sneaking it here and there so why should I? We're in this together. My husband doesn't think on the same level as me. Today we had company and he took out a bag of party mix he had bought (with cheeses in it) plus some chips. I said "don't open those, she can't have them" and he said "so, there's chips there she can eat. She knows not to eat these (the party mix)". I said "I know she knows, but I don't think it's fair". He may not have agreed with me but he did respect my wishes and didn't open them. Last Christmas every group of company we had would show up with chocolates and then open them and set them on our coffee table and eat them. I hadn't reached the comfort zone then to tell them politely that we don't eat chocolate in our home. so I let it eat away at me while no one even knew it bothered me. This Christmas I'll be more upfront! (at least I hope I will). Yes I know she will encounter many situations where there will be food she can't have, but my personal conviction is that her home should be a place free from food barriers. Please share your stories with me, all you who grew up with these conditions, and give me advice on how to raise my daughter to be careful and accept certain limitations, but enjoy life and feel empowered instead of ostracized?? Thank you.

Our daughter was diagnosed with allergies to egg and milk around the 1 year mark. At first I refused to give up milk in my coffee while dh wanted to put her in a 'bubble'. We fought about it a lot and I couldn't get over his parents serving everyone cheese or corn on the cob and insisting on butter when we were over. I was determined to make dd's life as normal as possible and dh was determined to avoid any possibility of contact.

My advise to you is what we are trying to do and usually succeeding in:
1. Talk to each other! Make sure you express your concerns and explain why you do what you do. Dh didn't want dd to go anywhere that food was served but I wanted her to learn avoidance techniques before she started school. When he understood why and what we did to keep her safe while educating her and her friends, he felt much better.
2. Keep an open mind. I am a java junky. When dh told me that he felt my coffee cup contaminated the dishwasher I became defensive. Since then we have found that Coffee Rich is a non-dairy creamer that poses her no risk. We both feel much better having no egg or dairy in the house.
3. Gather up all of the medication that you need to have with her at all times and find a carrying container that works for you. We found a fanny pack at the Dollarama that holds 3 EpiPens, Benedryl and a measuring spoon, her asthma medication and her areochamber, her health card, Dr's cards. our business cards, money for payphones and vending machines as well as stickers to pass the time at a hospital. Make it a habit to recheck that you have it when your going out.
4. Carry 'safe' foods and stash 'safe' foods at homes you frequent (grandparents, close friends, daycare)
5. Plan ahead for parties and freeze a few cupcakes to use for last minute parties.
6. Bring the foods. We bring all of the baking at Christmas time so that the we don't have to worry about what she gets into.

Hi!

I'm also relatively new to dealing with food allergies. Our son was diagnosed early in 2003 with multiple food allergies when he was 12 months of age. I agree - it's been a very steep learning curve, and a big adjustment.

There are such wide-ranging opinions about the appropriate approach to handling food allergiies and the level of risk each person or family feels is acceptable to keep the allergic person safe. My husband & I definitely err on the side of caution, although we had to learn this the hard way. But I have to say, with a young child, I think it's really important to be very vigilant in keeping unsafe foods away until the child has a better understanding of the situation. We have a 3 yr old son allergic to egg, peanuts, tree nuts, sesame seeds, sunflower seeds, fish, green peas, pineapple, mustard, and must also avoid beans and lentils. We have had some real scares with cross contamination at social events - even when we provided almost all the food. We are much more careful now. We don't have any unsafe foods in our home (no egg, no nuts, no peanut butter, no sesame seeds, etc), and we politely ask that no one bring unsafe foods into our home. I agree that you want your home to be a safe zone - this has worked best for our family. It's the one place we truly don't have to worry! We've provided a list of all unsafe foods to all of our extended family and close friends, along with suggested safe foods - they really appreciate knowing some safe foods (crackers, chips, etc) so they can be available when we come to visit. We've been very fortunate to have supportive family and friends, however, they do make mistakes and have served some unsafe foods. It's definitely not easy.

We go to lots of social events, and what we've been doing to include our son and to make him feel part of the group is to find out what is being served in advance, and try to closely match his meal to what is being served (he can virtually never eat what is being served). So if hamburgers are going to be served, we make a hamburger for him and bring our own little portable BBQ. We also bring lots of safe foods that he can eat, but also share. I'll bring big platters of sharing type food (eg. homemade buns, veggie platters, fruit platters, safe cupcakes, potato chips), things that he loves and other children will enjoy. If I see some unsafe foods are at the event (eg. crackers with sesame seed), I make sure he has a generous serving of the sharing foods we've brought on a separate plate so we minimize cross contamination, and then we have to make sure he only eats off of his own plate - that's pretty challenging with a 3 year old, but absolutely necessary. We are trying very hard to minimize the feelings he may have about being different.

My husband, 6 yr old non-allergic daughter, and I all eat what our 3 yr old son eats. It's too hard to make different meals, plus, because of past allergic episodes with unsafe foods present, I just don't think it's a good idea for our family to have the unsafe foods served. Instead, we make appetizing, safe meals that we all can eat.

At a social event, we almost never eat an unsafe food in front of our son. I'm too worried about accidental exposure, and I just simply have a hard time eating it in front of him when I know he's looking at me and wanting to try it! It's just not worth it.

As a treat for my husband & I, we will occassionally go out to a restaurant on our own and order some foods we can't eat at home, or we will order food in and have a nice meal after the kids go to bed. If we order in something that may not be safe, I use a washable tablecloth, paper plates and plastic forks. After the meal, I'll put the tablecloth in the laundry and throw out the plates and forks. It's pretty exhausting to always work so hard to think and prepare safe meals, so a break every now and then helps.

THANK YOU!! I'm glad to hear I'm not the only one who feels this way. and then I get labelled as having a guilt complex. I like to think of it as having a compassion/love complex!

We do have outings with friends that involve eating foods. We often go to the library and have "treats" afterwards at the local mall.
It's important for me that dd develop strategies for avoidance in social situations such as caring wet wipes and cleaning the tabele and chair; bringing snacks that we can share; avoiding cross contamination by having an adult serve (it's so cute and all of her 3 year old friends have learned to wait). As she gets ready to go to school this fall the one worry I don't have is of her eating something we didn't send.

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Thank you Lisa!! This is exactly the type of feedback I am looking for- the child's feelings nd how the parent's actions/behavior/etc. affects that. Thank you very much and please keep posting if you think of anything else. This forum is so awesome - the replies I've received and the other postings I've read have been empowering beyond words.

Thank you from me too Lia! I also really appreicated reading your post.

I have a very good friend who grew up with a nut allergy. (She now has a son who is peanut allergic) It was so rare, in those days, to know of someone with a food allergy, and people just didn't know much about it - the precautions that were necessary, and certainly no one prescribed an Epipen. She said her parents really didn't know much about it and thought she could just pick out the nuts and be fine. The school had no policies in place to protect an allergic person - she was the only child in school with a food allergy.

Aren't we so lucky that there is much more awareness these days? I know we wish there was more, but it's so much better than it used to be.

You're welcome! Yes, there does seem to be much more awareness today which is a good thing.

Lisa,
I would not let our daughter eat from any dish that others had served themseves from for this very reason. Those who are sensitive enough to prepare allergen-free foods, probably woudn't mind if you discreetly helped yourself first.

I will also take to heart your comments earlier about drawing information out of children. I have been trying to explain to my daughter that sometimes she needs to explain hersef further to people. She told me that two weeks ago at a replacement daycare providers home (reguar provider was on holidays) , a little boy put his food into her lunch. The daycare provider never mentioned anything so I wasn't sure if it happened or if she was worried it might happen (she's ony 3 3/4). When I questioned the provider the next day, she admitted it had happened. "He put his spoon into her bowl." I expained to her that that is enough to contaminate her lunch. It happened the following day as well. I told our daughter that she was right not to eat the food, but that if she was still hungry she should tell the provider and if need be suggest that they call me at work so that we can problem solve and come up with a suitable meal.
In the future I will always send a tin of ham (something she realy likes) to be kept at their home and advise the daycare provider to boil a potato and give a tomato or someother plain vegetable.

I agree you should not eat anything that has possibly touched another food. Cross contimiation is done so easy. You serve the allergic person first or have other a meal for them.
Some of my reactions are from cross contimiation and have been serious.
I know in the 60 and 70 this was treated so differently. I was not to talk about at all,but that is how my father handled all situations.

When I was a child my Father tried to explain my ana to shellfish as I had and still have a bad habit - I will tune out the bad stuff. I know that he told me not to eat it and clams. That is all I remeber of the conversation I was 12.

Susan your daughter is brillant she is doing exactly what we all should do in these situations. It is a shame though that a Child Care person did not tell you! Also that she was really hungry.
Kelly