Talking Allergies

Hi, I am new to this forum, but thought someone might be willing to give me some advice (Harsh or otherwise). My son has had a known dairy allergy since he was 2months old. We have successfully avoided dairy until about a month or 2 ago when he became very mobile. He has now taken a sip of his 3yr old sisters milk, left innocently on a low table, 3 times and the last time had an anaphylactic reaction. Up until now he has been going to a daycare centre 3 days a week while I am working, but now I am too terrified to send him there. Am I being to protective to think of leaving work and taking him out of care? Or is this the only way to keep him safe at least until he understands that other kids food might make him sick?

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Son Ethan: 1yr old dairy anaphylaxis
Daughter Annella: 3yr old No allergies
Me: Penicillin

Do you have an autoinjector (EpiPen or Twinject) and a trainer?
How long has he been going to the daycare?
What have you discussed with them in terms of foods/snacks/drinks?
How many children are there and how many adults?
What is their policy re: food allergies?
Do they have training in how to administer the autoinjector?
These are some of the questions you'll need to ask yourself in deciding if he is safe at the daycare.
You will need to forgive yourself (or whoever was supervising your daughter that eventful day) for his anaphylaxis reaction. It was an accident. Think about how things can be done differently from now on.
Will you keep milk in the house? Will you give each child a special cup and implement a rule that you only drink from your own cup? Do you feel your daughter is old enough to start to grasp some of the rules about not sharing food? (Don't let her feel responsible for the accident)
This is a stressful time for you and it will continue to be as you go through the year and encounter situations that bring his reaction to the forefront of your memory again. (Family get togethers when drinks and foods are left on the table, birthday parties etc).
Talk about it with your spouse and come here to discuss it as well. There are many threads you may find helpful. We all are learning from each other. Be kind to yourself.

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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

Welcome to the board TC -- I'm sure you'll find a lot of info. and support here!
I agree at 1-year-old, it's a tough one leaving your little one in someone else's care when they have a life threatening allergy. Because they really are too little to self-protect at this age, their safety relies solely on those that you leave him in the care of. I think that's the determining factor here, along with you and your husband's comfort level. Do you feel that the daycare really understands the seriousness of the allergy and that their understanding of how to keep him safely away from any traces of dairy (as well as cross-contaminating food / utensils / toys / etc. with dairy) is a matter of life and death for your little guy. Do they know all of the foods that contain dairy? When a lot of people think of dairy allergy, they think about milk only -- what about cheese, margarine, etc.? Do they regularly wash toys and kids' hands, etc.? Do they know how to administer his epinephrine auto-injector? Do they feel confident that they will know when to use it? And do you feel confident that they will? Do they feed him meals? Maybe you'd like to implement a rule that the only food or drink that he ingests comes from home? You have to go with your gut here -- do his caregivers look at you kind of blankly when you talk to them about anaphylaxis and all of the factors that are a matter of life and death for your little guy or do you feel that they really do "get it", and if they don't really "get it" all right now, do you feel that they understand the seriousness and show an eagerness to learn more? I don't think you're being over protective at all -- that's a perception that those of us who are parents to kids with life threatening allergies always seem to battle with. We worry we're being too over-protective, and others who don't get that in matters of life and death, being over-protective is what keeps our kids alive. I'd rather people perceive me as being over-protective and have my son safe than worry about what others think of me (although this is something that I can occasionally still struggle with...).
I'd also suggest that you get your son a Medic Alert bracelet (no, he's not too young) because his bracelet can speak for him. It's a reminder to those in his care. Check out another thread about Medic Alert here: http://www.allergicliving.com/forum/vie ... 95&start=0
Sorry for the long post -- I think you'll find a lot of support here.
P.S. -- I love your son's name!

Hi TC,

I am wondering if you you really need to keep milk in your house. Milk is not necessary in your daughter's diet. She is clearly too young to understand the consequences of her leaving her cup within reach of her sibling.

If you're worried about her calcium intake, buy her soy milk (chocolate or other flavours if she doesn't like the plain stuff), calcium fortified orange juice or liquid calcium you can add to any drink.

I would also ban ALL dairy-containing products from my house if I were you.

My daughter is 15, peanut allergic and old enough to avoid it, but our house is peanut-free just so as to avoid "accidents". It's simply not worth it.

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15 year old - asthmatic, allergic to cats, dogs, horses, waiting to be "officially" diagnosed for anaphylaxis
12 year old - asthmatic, allergic to tree pollen and mold, OAS
Husband - Allergic to amoxycillin
Self - Allergic to housework only

Hello TC,
We live with a milk allergy also. Our situation with siblings was easier because our daughter is the eldest. We decided to give our younger son only soy milk. We felt it was the safest option for her. The possibility of spills and accidental ingestion was too high and risky. It will be hard to take milk away from your daughter but it might make life less stressful. Try switching to a favoured soy drink first maybe. We use Nesquik flavourings to make soy more tolerable for little guests to our home. Both the chocolate and strawberry flavour are safe. Using this, you can control the amount of sweet flavouring too.

As for daycare, that is a hard decision. As your little one becomes more active, a daycare setting could have many hazards. We decided to stay home with our daughter until she started school. Last year we found an excellent nanny who came into our house. It was a wonderful arrangement. This year we have had to put her in a daycare setting 3 afternoons a week. Our nanny moved! The daycare was very responsive to our concerns and given her age and the short time she attends we feel comfortable with the arrangement. The center does not have any children younger than 2 so we were happy that there wouldn't be little ones walking around with bottles either. The new document, Anaphylaxis In Schools and Other Settings, could be used as a resource to the staff. Could your work hours change any - so that you could be home to feed him lunch?

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11 year old daughter -- lives with life-threatening allergies to milk, eggs and peanuts; seasonal allergies (birch, maple, ragweed); pet allergies; asthma; and eczema
9 year old son - no allergies

My oldest daughter was 3 when my youngest was diagnosed with a milk allergy. We tried letting my oldest have milk products for about a month...but it was WAY too stressful. We switched her to soy as well...I don't remember it being a problem. She switched pretty willingly once we found one she liked (so good omega- not sure what's available where you live). We did make our house allergen free. I don"t think I could live comfortably, and not in a constant state of panic if it wasn't.

I'm not so knowlegdeable on the daycare thing. I've always been home with my girls and I even homeschool.

Katec, when I read your previous post I was quite surprised to see you have another child! That's news to me. How old is he? You don't mention his existance in your signature.

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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.

Saskmommy,
I have a 3 year old son. I have talked about him in a few posts but he has no allergies so far. He has been tested for all of my daughters' allergies. Knock on wood! I will have to add him to my signature.

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11 year old daughter -- lives with life-threatening allergies to milk, eggs and peanuts; seasonal allergies (birch, maple, ragweed); pet allergies; asthma; and eczema
9 year old son - no allergies

Thankyou all for your replies and support. We just had our appointment with the Allergist and I now have 2 Epi_Pen Jnrs, ..... and lots of information and action plans.

We will take all of this info, and your comments with us to see the Daycare Centre director next week. The centre's director has been really supportive so far, and says all the right things...but I know even myself it is easy to have clear policies, but can be difficult getting everyone to follow them.

Katec - I will definitely give the Soy milk a go with my daughter, she loves Ethans soy yoghurt so maybe she will already have a taste for it, having a safe environment at home may at least make me feel relaxed some of the time.

Thankyou all again for your support and kind words...I will stay in touch and let you all know how we are doing.

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Son Ethan: 1yr old dairy anaphylaxis
Daughter Annella: 3yr old No allergies
Me: Penicillin

I talked to one lady who ran a family daycare centre who had one child that had a milk allergy. She was not able to eliminate the milk completely from her centre, but she did do the following things:

The child, who was the youngest, always ate and drank while in a high chair that no one else shared.

Everyone else ate at a little table that she made sure was comepletely cleaned after eating.

No eating and drinking except at the highchair and table, to avoid contaminating the rest of the place - even water.

Strict handwashing before and after meals for all.

No sharing of food.

No unsupervised food left out (only eating and drinking at meal and snack times).

The child's parent's brought all meals and snacks cups plates, utensils, etc., even water, for the child, and that was all she was to eat or drink. The childcare provider sent the dishes home unwashed and the parents were responsible for that.

The daycare had a written emergency plan. With a plan for who does what. It would be really important for me that if my son was having a reaction, someone that he knew would go to the hospital with him, to be with him until we could get there.

Please make sure you provide your childcare provider with an epipen (or two) of their own. The biggest beef childcare providers and schools have is that the parent only has one epipen and so they always have to remember to bring it every day, except for the days that they forget...and so the daycare providers are freaking out all day.

Personally, if I were you, I would check out getting a nanny, or see if you can work opposite shifts from your husband. Or try to work from home. I ran my own childcare centre for 7 years, till my son was extablished at school, that way I could control what was coming into my house, but still earn an income.

I hope it all works out for you. It is not easy but it is very do-able. The next few years might be really stressful (I hope it's not, but it is best to be prepared, so you can take care of yourself and your family). It will get easier as your child gets older. My son is 9 now and it is all just part of our routine and this is just normal for us, and it doesn't even feel bad or unfair, it just feels like us.

Up until 2 years ago, I was working and had my children in daycare/school. When my son entered daycare in March of 2003, he was 14 months old and we had only JUST learned of his food allergies. I've learned a lot since this time (which I'll share in a moment), but this is what we did at the time (some of this I would not advice others to do, but we knew very little about managing food allergies at the time). We gave the daycare his list of food allergies, 2 Junior Epipens and a bottle of Benadryl for children. The daycare owner and staff were truly wonderful, and really cared about my son. They assured us they could manage his food allergies as they dealt with a very reputable caterer. Well, things went along very well in the first year and they did manage his food allergies very well - he had a different meal plan than the other kids, and it seemed like it was going along very nicely, but into the second year, and in a short span of time, there were about 4 mishaps in the kitchen resulting in allergic reactions - the final reaction being much more severe than the others where his body was covered in hives and his feet were swollen and beet red where his socks were. My husband and I knew that we just could not expect others to manage our son's multiple food allergies in the required manner and we pulled him from daycare and I took an 18 month leave of absence from work. When the 18 months passed, I resigned from work as it would still be 2 years before my son would be ready to enter into grade 1. We just knew in dealing with his multiple allergies that it was complicated and needed our attention. Even when he enters grade 1 (and further if need be), I will likely bring him home for lunch.

My son is in now in junior kindergarten and we feel we are managing his health MUCH better now. Our son only attends the half day program so that he is not present during lunch time, but he is at school for snack time. We always provide our son's food for snack time, and he does not eat any food that does not come from home (for example, children may bring in a fruit or cheese platter for their birthday, but he does not eat from these trays). He eats his snack at a special table (he always eats with his good friend Lauren), we provide him with a plastic place mat in his lunch bag, and 2 Wet-One wipes in a container. All the children are required to wash their hands before the meal, but we provide Wet-Ones for the table so that our son can give his table a wipe, then his hands, then place his placemat out for his snack. When he was in the morning preschool program, his teacher did all of this for him, but towards the end of that year when he was approaching 4.5 yrs of age, we felt he was ready to take on some of the responsibility to clean his table and hands with the teacher overseeing him. Even when they are very young, it's a good idea to help them learn to self-protect, and I have to say our son has amazed us with how well he has done this. The teachers and principal are quite astonished at how well he has managed this, but I've heard other parents on this board say the same thing - when they learn this early enough, it just becomes so ingrained in them.

So, if I had to do it over again, these are the changes I'd suggest:
- always provide his food and dishes
- ensure handwashing before and after all meals for all children
- have him eat off of a placemat at a special table (high chair) where ONLY he eats
- give his hands a final wipe before the meal with a Wet-One
- provide the daycare with Wet-One wipes to be used to clean the place where he eats - no other cloths to be used!
- ask the daycare provider to try to keep your childs fingers out of his mouth

I wish you the best of luck! My son's current school has been wonderful, and I wish you the best of luck with your daycare situation.

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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

great idea Julie!

Thanks Ethansmom. There are several ways you can protect your child's place where they eat:
1. use a small plastic placemat (our son brings it home everyday so we can wash it AT HOME. We've had no mishaps and great success when we take care of the cleanliness of his own things). Last summer I found these inexpensive, but foldable platic placemats at the grocery store. I cut them in half so it was a better size for a lunch bag, but big enough to eat at.
2. use a piece of wax paper. This is really handy, repels moisture, and can be thrown away at the end of the meal
3. a piece of paper towel.

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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

Julie,

Thankyou so much for all the detailed info. We are meeting with the daycare centre director next week to discuss our needs and I will definitely take this along with me. The wet wipes is a great idea as even at home I have started worrying about cross contamination from reusable cloths. My boss has since suggested that we may be able to negotiate working from home too so I can see more options opening up for us already since I posted my question.

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Son Ethan: 1yr old dairy anaphylaxis
Daughter Annella: 3yr old No allergies
Me: Penicillin

TC, I really hope things go well for you with your son's daycare! Going in very well prepared is a great advantage.

I was reluctant, at first, to post about our experience because I didn't want to scare you, or others. But then I decided that you may find it helpful. When you can manage to educate others in a helpful manner, and you will know if they understand your son's needs, there are some really great people out there that you CAN have faith in. We have a very small group of people that we feel we can safely leave our son with (my son's school, my parents, 2 babysitters), and that's really it. It has not been a problem for us once we felt we had educated others well enough to feel they understood the seriousness of his condition and were prepared to handle it responsibly. We also wanted to ensure they would feel comfortable administering the Epipen if the need ever arose. We have an Epipen trainer (available thru Anaphylaxis Canada, AAIA, and I'm sure a few other places) plus a poster demonstrating how to administer the Epipen. We train others, including our 7 yr old daughter (our 5 yr old son is just starting to learn how to do it) how to use it and leave this in a handy location so anyone caring for our son in our home can follow the demonstration. At my son's school, we had a long talk with his 2 teachers and the principal explaing his specific needs and a demonstration of the Epipen use. I provided the school with posters demonstrating the use of the Epipen, and they have them displayed in each classroom. I also provided a short talk (approx. 2 mins) to all the students and teachers at the beginning of the school year. I followed this with the Alexander the Elephant video (approx 8 mins). If you are interested in the talk I gave (it's appropriate for kindergarten age children) I can post it.

Good luck with your meeting next week! And that's great news about your flexible work arrangement!

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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

I, too, don't want to scare you, but I think it is fair to say that the experience of finding a trustworthy caregiver is difficult even without the added stress of a life-threatening alllergy.

My son was diagnosed as anaphylactic to peanuts when he was just over a year old. I think the knowledge / public understanding of peanut allergies then is what it is now for milk -- only those who live with the reality can grasp the complexity of having the allergy. This would lead to stress in the playground, in Gymboree, and at other people's houses -- and I was WITH him!

Anyway, at the time of his diagnosis, we were living in the US, with no family support, so I understand the stress of finding supportive childcare. I was a stay-at-home mom then, and struggled to find babysitters. BUT - we got through it. Even though I was at home, I wanted the occasional babysitter so I could go out and groceries and whatnot by myself. I would explain everything to the babysitter when I visited their home (some at-home daycares offered drop in times) or when they visited mine for a pre-babysitting get together. Among other things, I would explain the seriousness of the allergy, the EpiPen, emergency protocol, cross-contamination as well as the fact I would provide his food. It is a lot to ask, but I had to because of the seriousness of the allergy. And then, after going through all the information, Mommy Radar took over.

Some people would 'get it' because they knew someone with an allergy, or had children under their care before who had allergies (strong candidate). Some shrugged me off (no go). Some said they understood but weren't comfortable with the responsibility (no go, but I appreciated their honesty). And some some said they would learn how to care for him, because they love children and want to make their babysitting/preschool a positive experience (another strong candidate).

So what happened? Unfortunately, I never did find an 'at home' babysitter/nanny who would work with this, but perhaps I didn't search hard enough. I then went to the drop-off daycare a couple of times, but came to pick my son up once and there was food everywhere -- in the yard, in the kitchen, in the living room. I didn't see that there was any peanut prodcuts per se, but this just wasn't a good situation for dealing with our food allergy. So I searched and found a gym with a peanut-aware daycare -- we had a great time with them and he had some playtime with other kids while I got an hour to work out. And, when he was three, I found his preschool . The director and staff were *awesome* and worked really hard with us to make his allergy something that could be understood and accepted, but not something that made him 'dangerous' to care for. (They have been, by far, our most positive, inclusive experience -- they did a lot of teaching about it to the kids, and they certainly kept the other parents informed in a manner that didn't cause any defensiveness. It was a relief then, and I long for it now in our public school.)

I guess what I am trying to tell you in this novel is that it took a lot of effort and time to find what we needed-- but we did find it. It sounds like your daycare has the information and the caregivers that have your son's interests at heart. I guess I am also adding to the conversation that Mommy Radar is a strong tool that is undoubtable already in your allergy awareness kit!

Hugs and best of luck,
Caroline

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son anaphylactic to peanuts