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PostPosted: Wed Sep 13, 2006 11:53 am 
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Joined: Wed Sep 13, 2006 10:59 am
Posts: 63
Location: Ohio
I am at a loss on how to handle these two different worlds...

I have a 3 year old that is allergic to nothing (that we know of) and eat everything! Then I have a 10 month old that was recently diagnosed with allergies to wheat, egg, milk, peanuts, oats, and soy. He had terrible excema for months and then one day when I gave him a wheat cracker he went to the hospital for hives and swelling. So now we know and I stopped breastfeeding and luckily his excema pretty much cleared.

But we are trying to figure out now how to cook and how to manage my 3 year old's diet and life around my baby's new demands. How do I make snacks for them both? How do we ever go out for ice cream again or eat out at a restaurant. I can manage these things for myself and husband but do I deny all of these food groups to my 3 year old? Peanuts and nuts no problem, they have been banished. But wheat, milk, soy and egg? it seems I can't limit these foods in my 3 year old's diet or else he won't have a balanced diet. But how do I make my baby (not huge issue yet but I feel like I need to start preparing) not feel deprived when his brother is eating everything? Or conversly how do I now start telling my 3 year old he can't have the things he loves anymore?

Any advice from people with one child who does have allergies and one child who doesn't?

_________________
2.5 year old: allergic to wheat, dairy, egg, peanut, oat, turkey, and cats
5 year old: no known allergies
Husband no known allergies
Me allergy to morphine only


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PostPosted: Wed Sep 13, 2006 12:29 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
I hope you get some replies, as you are definitely in a very challenging position.

I cannot offer tons of advice from our own family's experience as both my kids have multiple FAs, so they're both in the same boat. And quite frankly, although it has its challenges at times, I do think it's actually generally easier to have both/all kids allergic rather than just one.

I guess a few glimmers of hope: (a) it does get a bit easier with time as they get older and better able to self-protect and understand; (b) there is the chance that your littlest will outgrow a few of his allergies. My youngest outgrew wheat and barley at 3 years, and soy as well, which helped with our quality of life. But I know that's not much comfort right now.

A few thoughts:

1. Once we decided to accept that our lives were changed forever, and that perhaps we never would go out for ice cream as a family, and likely hardly ever to a restaurant, things got easier emotionally. There are lots of non-food-related things that families can do together (or ones where you can easily bring your own food), and often allergic families have to think outside the box a bit on that front. It takes time to adjust, but as I am fond of saying, you can get used to anything. I think the biggest challenge for a lot of people is coming to the realization that food is no longer warm and welcoming. It's threatening and something to be vigilant about, and that's a bit of a mind-bender.

2. I don't think I would deny those food groups to your oldest (except perhaps the peanuts/nuts - those I would not consume in the house, as you've already decided). For example, we have milk and milk products in the house for my oldest, even though my youngest is ana to them, because my oldest needs that protein.

People have sometimes asked if we keep all the allergens out of our house, and I just joke that there wouldn't be anything left to consume but water and air. It's just not possible sometimes. If you're only dealing with peants and nuts, or only dairy, the whole family can likely adjust to not having those things in the house. But to remove the list that you have is daunting and possibly un-do-able. At least that was our experience.

But your oldest will need to learn how to consume his food/drinks in a more controlled manner/environment than what most children are used to, in order to keep his little brother safe. And that's just part of being a loving brother. It's best to be matter of fact about it, I find. If his brother were challenged in some other way, whether physically or mentally, he'd be expected to help out with that as well. So it's just part of life and everyone has to deal with it as best they can. Kids are amazingly receptive to rules and are happy to help, I find.

3. Maybe tell your oldest about the allergy super-heroes that my kids created -- Epi-Man and Epi-Man Jr. You can read about them at www.epi-man.com . Tell him that he can be a HERO like them and help keep his little brother safe. :)

4. Some basic things we do:
- Always have the kids eat in the same place.
- Always have them eat at the table - never elsewhere, unless the food/drink is safe for both.
- Definitely keep the baby in a high chair as long as possible since this will keep him a bit removed from the other foods.
- We had a lock on our main food cupboard for awhile because we didn't want my youngest to get in to the food accidentally. We didn't have a house that was completely free of wheat/barley/dairy/egg and so we had to take other measures to protect him.
- I've had friends who have also had locks on the fridge for the same reason. You need to control the food supply, basically, and when they are young you have to take drastic measures sometimes. It's all about risk reduction and prevention.

It definitely gets easier on that front as they get older. My kids are exceptionally good about never grabbing food - they always check and they have learned to understand why we have the rules we have. But it takes time and training.

4. On the emotional/psychological front: we have always been very matter of fact about things - Baby cannot have X, Y, and Z because that's just the way he was made (or if you're religious - that's the way God made him), and we all have to accept that. You can cry in private or with your understanding friends or here online ;) but I don't think it's good to do it in front of the kids. (Not that I'm implying you're doing that - these are just thoughts I wanted to throw out!)

That's not to say that you have to say "oh, isn't life great!" when it's obviously challenging. We do talk about allergies every once in awhile and how they aren't always fun -- so we do some basic acknowledgement of the situation -- but I also try to find the positive and point those out. (We've been dealing with MFAs for almost 6 years so I've had time to think of some positive things. ;) ) It definitely could be worse, in my opinion. I have a friend whose little guy has Muscular Dystrophy and will likely be in a wheelchair in a few years, and will likely not outlive his parents. :( That really puts things in perspective for me. (Just like my family's life puts things in perspective for others!)

Anyway, I hope this helps a bit. I will try to think of some ideas or things I've heard about from other families in the next few days. I certainly do sympathize.

K.

_________________
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


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PostPosted: Wed Sep 13, 2006 3:12 pm 
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Joined: Thu Sep 22, 2005 11:39 pm
Posts: 1141
Location: saskatchewan, canada
We don't have quite as many allergies to deal with as you or Karen. WOW...it seems strange to say I don't have as much to deal with as someone else. My oldest is *only* peanuts and nuts...but she does not eat milk, eggs or chicken.

The easiest thing for us has been cooking, finding recipes and new ideas that everyone can enjoy. I did not want to be trying to cook seperate meals while having cross contamination concerns. So for us it has been easiest to find recipes everyone enjoys and phase out the "risky" stuff. But, you do have more challenges than we do (wheat, soy oats). One idea could be to cook come foods your youngest could have and freeze them in individual containers.

Even though wheat is not a problem for us...we do eat quite a few "gluten free" foods because we found it easier to find foods free of our other allergens among gluten free selections. We all eat and enjoy perkys cereals, tinkyada pasta (love the bear, car, plane etc. shapes), enjoylife foods products (choc chips, cereals, cookies snack bars). You always have potatos, speghetti squash, yams, rice as well.

In many ways, allergies have been such a real eye opener to what we stick in our bodies. We eat way more fruits, veggies and good basic stuff without a gigantic list of strange ingredients.I'm sure we would be eating a lot of prepackages CRAP if this had never happened to us.

And there is always the hope that they will outgrow some of it.

_________________
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.


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PostPosted: Wed Sep 13, 2006 3:58 pm 
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Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
Gosh--that's a hard situation especially since dairy *and* soy are out for your one child. My sisters and I all have multiple food allergies---we share some allergies but not all. In my family we ended up banning nuts from the home (all three of us are allergic). But there is no way that we could have banned *all* allergens . . . like milk and soy. 2 sisters are allergic to milk (one severely and one not so severely). One sister has developed a soy allergy too. I've always been anaphylactic to soy (although I haven't reacted as severely to soy as to nuts.) It was stressful for my mom to keep everything straight . . . at one point, we were drinking 3 different types of milk in the house, all of which at least one person was severely allergic to. But we didn't really have any other options!

Today I'm fine with my sister drinking soy milk at my place or putting soy milk on her cereal, but I'm not as okay with her making homemade pudding with soy or anything that involves using pans (which I wash by hand) (I once found residue left on the pan--that was the end of that!) I also insist that she use utensils that aren't permeable . . .i.e. a silicone spatula would be fine . . . a wooden spoon not so much. But we weren't that strict about x-contam when growing up.

Good luck with balancing all the different health needs of your family!


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PostPosted: Wed Sep 13, 2006 11:38 pm 
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Joined: Thu Dec 22, 2005 11:48 pm
Posts: 33
Hi ilovesammy,

We have a 3 year old who is anaphylactic to milk, wheat, egg, soy, peas/lentils, treenuts, peanuts and shellfish (that we know of so far). He doesn't eat citrus, and doesn't tolerate oats etc. either, and has severa environmental allergies as well (but he's pretty cute). His younger brother (15 months - also a cutie, and self-proclaimed boyfriend of an allergicliving forum member) isn't allergic to anything (so far).

One of the most defining moments I've had in my allergy journey occured during a conversation I had with another 'allergic' mom. She said, "You don't necesarrily grow OUT of food allergies. You grow THROUGH them".

These words were pretty empowering. Up until that point, we kept allergens in our home, and I spent a LOT of time in a state of primal fear. On top of this, it was pretty (emotionally and otherwise) tiring to try to clean the house over and over again, trying to get rid of any 'phantom' crumbs that may have fallen anywhere. I'm sure most of you readers can relate to how exhausting this way of living can be. When we had our second child, I felt pretty deflated to see that my oldest was getting hives all over his face from hugging me on the same shoulder that his baby brother had spit up on (I was nursing, and eating unsafe foods at the time ... oops ... should I be embarrassed admitting that I didn't change my clothes after every spit up? :oops: ). I often thought about how I was going to be fair to both of them, and concluded that the 'fairest' thing to do was to keep everyone alive.

After having that defining moment, my husband and I decided to take on the challenge of phasing out all the allergens in our home and eating our son's safe diet. We knew it would be tough initially, but we decided to surrender to it, and I'm happy to share that we've found a nice rhythm. It may not work for everyone, but here's what we do:

* both children eat only safe foods. Experts at Sick Kids Hospital (where our son's diet was assessed) told us that his diet was very healthy and balanced (he eats a ton of fruit/veggies daily, plus chicken, lamb and rice/corn based foods). According to their doctors, both our children are thriving and we feel relatively confident that they aren't being deprived (except socially, but this is another conversation). [As an aside, I sometimes feel there should be more calcium/fat in their diet, however, our kids' doctors aren't concerned about this.]

* we (husband and I) eat 'unsafe' foods the odd time, but only in areas of our home that are out of bounds for our children.

* we have changed our relationship with food. Despite having several limitations, and despite making some fundamental changes (i.e. I used to be vegetarian and relied on soy, lentils and dairy for protein) we have found that we are eating to live instead of living to eat. I know this must sound corny, but, as the person I spoke about earlier said, it's just food. It really is JUST food. We still have a lot to choose from, and we have discovered that there are a lot of safe, luxurious tasting recipes from around the globe that fit all of our needs. I get to hug and kiss my son every morning and every night (and a million times in between), knowing that anaphylaxis doesn't HAVE to kill him ... thankfully, we have the ability to make choices that will keep him as safe as possible.

This change was easier for us because only the grown-ups in the family were affected. The younger one doesn't know any foods except for the ones he's been offered, so we don't have any issues of depriving him his favourites (and that wouldn't feel so nice!). Having said that, if you do choose to serve only safe foods to both your children, kids are pretty resilient. I'm sure, given just a little bit of time and tlc, your oldest will accommodate gracefully.

Don't worry ... you sound like a very caring mom ... you will grow through this.


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PostPosted: Thu Sep 14, 2006 10:39 am 
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Joined: Wed Sep 13, 2006 10:59 am
Posts: 63
Location: Ohio
Thank you for the replies. I think I am still in the shock and denial phase. It is nice to know that it gets easier with time. Right now I am just overwhelmed and sad for him. But I know he needs me to stay positive and be creative so that is what I plan to do.

My husband's stance is well he will probably just outgrow it.... but even if that were true (and who knows really) we have a good 3-5 years ahead of us.

Thanks for the the words and encouragement, it makes me feel more confident that we can handle this. Even if it is just one day at a time.

_________________
2.5 year old: allergic to wheat, dairy, egg, peanut, oat, turkey, and cats
5 year old: no known allergies
Husband no known allergies
Me allergy to morphine only


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PostPosted: Thu Sep 14, 2006 10:20 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
Quote:
eating to live instead of living to eat


I like that, Supi - I often think of that too!

:) K.

_________________
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


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PostPosted: Sun Sep 24, 2006 5:06 pm 
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Joined: Sat Apr 22, 2006 10:22 am
Posts: 24
Location: Vancouver Island
ilovesammy,

I think we may be walking similar paths at the moment. For me, your spot on the path was really really hard. All the unknowns getting thrown at you before you can really digest any of it. It really does get easier. Bit by bit.

Our oldest (soon to be 3) has food sensitivities...RAST negative, but we are finally getting him in to see our allergiest. He tolerates meats better now which has made it easier. Our youngest (13 months - gosh how did that happen) has had an anaphylactic reaction to barley, is allergic to rice and potato and has had postive RAST tests for dairy, egg, soy, all tree nuts, peanut, dogs and dust mites. I think he has outgrown some mild reactions to pear and carrot as well as hydrolysed infant formula (yahoo, no more neocate!). He has had severe eczema since he was 3 months and right now (fingers crossed) his skin has been doing really well.

I think part of my surviving it has been living in a world of denial and taking on the information that I can when I'm emotionally able to deal with the coping. I'm an information seeker, but too much information can send me around the bend. Even with this site I have to pick and choose my times - the information and insights are so wonderful, but can be so overwhelming. It can set me off into the panics of 'what if I'm not being vigilant enough'.

Cocoons are great....I call it "living in our own little world" and having those times also reduces the stress that we go through as parents. I had a freak out before my son's birthday, in the back of my mind I really wanted this all to be over by the time he was 1 (not realistic, but hey, we survive how we can). He was eating 4 different foods - how could I make him a birthday cake? How could we have family and close friends over and deal with food residue? I didn't really want to celebrate it. But we found a way - we went to a great park, brought a booster seat and put a candle in his stewed blueberries. It was fantastic.

You will find your way, you will get through this time. It really sucks that we have to go through it, but it will bring fantastic creativity and resourcefulness out of you!

Hang in there and get yourself a massage or a facial!!!


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