5-year-old grieving; me, too

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My 5-year-old DD is having a hard time with learning about the foods she can't eat anymore. She had a very slow onset to her PA. Looking back, I know she had PA when she was 1, but we didn't figure it out until she was 3. She never minded avoiding peanut butter and peanuts, because they smell and taste bad to her and make her mouth sting. But we've recently learned that we have to avoid many more foods than we thought because she had an anaphylactic reaction and we got a better education from an allergist and some books. At first when I told her she can't eat M&Ms anymore, she said that was okay as long as she could eat some kind of chocolate. She's generally a trooper about difficult situations. But as I tell her more and more things that she can't eat (I do point out things than she can, too), she's gotten really sad about some of it. She's old enough to know what she's missing. At the grocery store after we found out she can't eat Nestle butterscotch chips anymore, she asked, "Are you feeling kind of sad for me, Mom?" I told her that I am. She's had two times when she all-out cried to find out she couldn't eat things. I'm not exactly sure how to handle it. She has the right to feel sad over her losses, and she needs to let that out sometimes. And I want her to know I understand and feel sad with her. But we also have to look on the bright side and find good alternative things to eat. We are lucky to have no other food allergies to deal with. And I don't know if I'm overwhelming her by sharing all the safe/unsafe food information I learn, but I want her to learn that she has to have someone read every label of every food she eats because some things surprise us. She's eaten things for years and assumes they're okay for her. I am lucky that she has already known how to ask her Sunday School teachers to read labels for actual peanut ingredients before they give her food; she sometimes asks them again if they're sure. So I know she'll adjust to keeping herself safe in a tighter comfort zone. But this is rough! And I'm obsessed. I spend hours online everyday when I really need to be doing other things, because I want to know everything I can about PA. Please tell me I'll get over this! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] It's been about a month since we figured out this is serious business, so we're very much still adjusting.

On May 4, 2005

Hi Beth. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

First - yes, you will get over this. It will all become second nature. Remember the first time you diapered a baby? Felt like you had six thumbs on each hand. But, now you could probably do it blindfolded.

You've done a pretty good job of defining the feelings of *life with pa*. In a way, it is kind of like a death. (maybe, death of a certain way of life?) Many of us do go through all those feelings that follow a death - denial, anger, grief, sadness, loss, eventually acceptance.

I have adult on-set pa - so like your daughter, I know what I'm missing. (I actually loved peanuts and pb. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] )

I do have one idea for you. Find a new safe treat. Something she's never had before. Look through the forums here, and you might find something, but here are a few ideas:

[url="http://www.canadiansweets.com"]www.canadiansweets.com[/url] (if that link doesn't work try [url="http://www.canadiansweets.ca"]www.canadiansweets.ca[/url] ) If you check the links within that site you can find some safe Canadian chocolates, including Smarties which are similar to M&M's but made in a peanut-free plant.

[url="http://www.phillyswirl.com"]www.phillyswirl.com[/url] (ice-cream)

It might sound really silly, but when I find some new safe treat to eat, it can really make me happy. Like you said, it's fine and appropriate to sometimes feels sad or even angry - but, you do have to get beyond that sometimes to.


Sounds like you actually have a pretty good handle on things.

On May 4, 2005

We have grown with it, and my dd is the same age. She, too, is sometimes sad now(even though she doesn't know life without her food allergies and our restrictions). I am not sure if it is the sudden changes in your awareness and removing foods, or just the age of the children and their overall awareness of being different as well. I am sure it is both for you and your dd.

My dd was very sad last week when we had to go into a Dunkin Donuts to use a restroom(on a road trip in an emergency). She was staring at the donuts and smelling them(I got coffee for dh and I). I asked her if she was feeling sad(I could tell) and she talked alot about the donuts and not being able to have any. She has never even had one, so she doesn't know what she is missing. She had cookies in the car.

She got over it. I reminded her of all the fun things we do have and make because of her allergies, that we would not bother to do otherwise. We make great cookies and treats. Other kids just have to have whatever is served!

Maybe you can make a game out of trying to find all the great things she *can* have, finding new safe products maybe you just did not know about before, etc... Find a few fun and new recipes to bake for special treats and she might feel more fortunate?

That is how we try to handle it. Now that dd is older, we also discuss other differences children can have and how she is fortunate to be healthy and have this problem we can handle. Not too heavy, but we have a child in the neighborhood with severe CP, and she has been asking about her chair and why she cannot talk. So I used it to discuss how things can be wrong and how lucky we are(because we truly are very blessed).

I hope some of this helps. becca

On May 4, 2005

hi gals,

Thought I'd share my new discovery of a safe food with you all...Trader Joe's brand Soynut Butter --- both crunchy and smooth are made in a peanut and tree nut free facility! I called them and researched this thoroughly. The customer service rep was very knowledgeable about the allergy and was a real help.

The crunchy soynut butter is labeled as Made in a peanut/tree nut free facility. Both are labeled and toted as NO PEANUTS. The smooth soynut butter is *not yet* labeled as made in a peanut/tree nut free facility, but the customer service woman researched it and found out it is the same supplier as the crunchy. (I'm theorizing it's supplied by IM Healthy brand...)

So - Anne Marie...you'll have to let us know how it compares to real peanut butter!


------------------ 30-year old survivor of sever peanut/tree nut allergy

On May 4, 2005

bethc, I agree with AnnMarie and becca. You and your daughter will find your comfort zones and this allergy will not seem so overwhelming. My son is 7 and we have known he was PA since he was 2.

As far as your child feeling sad about not being able to eat certain foods. This is normal in the beginning, until she get used to dealing with this allergy. This is what I have always told my son. That he is lucky. The are so many children out there with more serious medical/physical problems. I pose this hypothetical question to him. Would you rather be able to eat peanuts or be able to walk, see, hear or talk? I know this is a bit harsh, but I didn't want him going around feeling sorry for himself. Plus I don

On May 5, 2005


Originally posted by ajgauthier: [b]So - Anne Marie...you'll have to let us know how it compares to real peanut butter!


I've never tried Trader Joes. But, I've tried the I.M.Healthy. Only smooth, I've never seen the crunchy.

It's actually pretty good. But I prefer the Peabutter.

On May 13, 2005

Thank you so much for your feedback. AnnaMarie, I told my daughter that you got this as an adult and knew what you were missing, too, and she was happy to think that someone understood! We are trying some new treats, which has been fun. DD tried Krispy Kreme for the first time after I talked to our nearest one. DD was happy to find a doughnut she could eat. We've been buying some different kinds of treats from the grocery store. And a relative of a friend of my mother's (the friend is PA) is bringing some candy from Canada when she visits soon! My daughter is kind of fixating now on maybe having to go in the ambulance someday when I'm not with her. But I've talked about what would happen and who would take care of her, and how we're going to try to keep her from eating peanuts so that doesn't happen, and then tried to get her to stop thinking about it. We don't have to think about what would happen if we were in a car accident, so I think she needs to stop worrying about that.

On May 13, 2005

Hello Bethc, I'm fifty years older than your daughter, but was also just diagnosed with PA (almost 4 months ago)....and like your daughter I found out I had PA by an anaphylactic reaction. I'm a grown-up and still feel like crying sometimes because I can't eat anything I want. I can imagine that it's really difficult for a five-year old.

'Grieving' is a good term to use. I've also gone through anger and a few dozen other emotions. Annamarie describes it well. Sometimes it feels a little lonely - especially in a restaurant or grocery store when you see all the food, and so little of it is safe. Last trip to the grocery store I noticed a man carefully reading all the labels. I thought, maybe he's PA like me? I realized how important it is to have someone to talk to about this. You can't really talk to non-PA people too much about living with PA...they tend to think you're an obsessed hypocondriac.

This is one of the reasons I also spend several hours a day online at PA.com. We're here to learn how to live with PA but I think it helps to know that you're not the only one having to deal with it.

An idea for a sweet treat for your daughter. I miss sweet & crunchy things, like a Snickers bar. I found that Kashi Go Lean cereal and Hershey's milk chocolate bar (regular size) eaten together taste pretty good! I'm going to try melting the chocolate and cereal together then popping it into the freezer for half an hour. Hmmmm!

On May 13, 2005


Originally posted by Adele: [b] I found that Kashi Go Lean cereal and Hershey's milk chocolate bar (regular size) eaten together taste pretty good! I'm going to try melting the chocolate and cereal together then popping it into the freezer for half an hour. Hmmmm!


Oh Adele, you do make me laugh. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I used to love Glosset's chocolate covered raisins. The closest I ever got to them since pa is a bowl with raisins and chocolate chips in it. I was really tempted to try melting the chocolate and dipping the raisins, but - that would take an awful lot of toothpicks. lol

It's good to see you back on the board. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Beth, it's normal that your daughter has these fears (about going in an ambulance, all the what if's), and it's great that she's talking to you about them. But, I agree that you don't want her fixating on it.

On May 17, 2005

Annamarie, I used to use up the melted chocolate for something else(I cannot recall what now, maybe just lollies) by stirring raisins into the remaining melted stuff at the bottom of the pan. Then drop them onto wax paper. You can do a whole batch of these clusters just as easily. Very yummy. I used to love Chunky candy bar, the raisins and nuts in the chocolate, but the raisins are satisfying on their own for me(in the chocolate, I mean). becca

On May 19, 2005


Originally posted by becca: [b]Annamarie, I used to use up the melted chocolate for something else[/b]

Sorry, becca, ROFL! I can't help it. I need cheering up! [img]http://uumor.pair.com/nutalle2/peanutallergy/cool.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

[This message has been edited by csc (edited May 19, 2005).]

On May 20, 2005

LOL, you got me, csc. How I *wish.* [img]http://uumor.pair.com/nutalle2/peanutallergy/rolleyes.gif[/img] becca

On Mar 27, 2007

Re-raising for SpudBerry.

On Mar 27, 2007

Thanks for raising - it does feel good to know you aren't alone in this.

------------------ Sherlyn Mom to 7 year old twins Ben & Mike One PA since 13 months One PA since 7 years Stay Informed And Peanut Free!

On Mar 27, 2007

You daughter can have M&M's again -- not the brand name, but an exact copy of the product without nuts!

A company called Vermont Nut Free Chocolates makes an M&M's clone called Skippers. My kids LOVE them. I tried one, and indeed they taste exactly like the real M&Ms.

This past Valentines Day, I gave my girls each a small box of chocolate truffles from Vt. Nut Free. Wow, they loved them. Now that will be their special holiday or birthday treat.

On Mar 29, 2007

The Vermont Nut Free chocolates do taste like M&Ms. Dh got me some for valentines day and I loved them - haven't had real M&Ms since the late 90s. I had PA as a child but it was weird - I could eat smooth PB, reeces PB cups - but not actual peanuts or chunky pb - I would get a scratchy throat - when I was in my early 20s I had an ana. reaction to something at a restaurant and I too went through the grieving process everyone is talking about - I lost so many foods. Its hard and even harder for a child I am sure. You will get used to it and find new fun treats! I hope your DD feels better soon.

On Jul 31, 2007

I have a DS PA toddler (3 years) and he is really aware of his allergy. He will ask me if something is safe before he eats. If we ever run into someone that wants to talk about "how sad his allergy is", I always say to the person and my son "Well, everybody has something. You may be able to see it or you may not, but everyone has something." I have always gotten a positive response returned to my son after that comment.

On Aug 1, 2007

I totally understand the stages of grief WRT PA. I was completely in denial at first. It was a mistake, screw up at the lab, he had a rx to something else, etc. I've cried, been totally ticked off, and now accept that (well mostly, still have some moments of denial) this is how it is for now. I am trying to break the feeling that this is temporary. I need to get to accept this may be a way of life.

My son is 2.5 and he is asking me constantly if stuff has peanuts in it. My 5 year old is also concerned because he knows nothing that isn't safe for Gavin will be in our house. Except for PB which we are very strict about where/when/how it is consumed.

So there is a lot of candy, ice cream, etc that we can't have that we used to. THe ice cream made my 5y/o very sad. We did find that a local dairy is safe and practices good safety WRT all nuts. We also told them we would buy an ice cream maker so we can make safe ice cream.

For us so far as long as we have a safe alternative the boys are fine with it and it's nice knowing that we can relax in our own home.

On Aug 1, 2007

I too have a PA 4 1/2 y.o. daughter and she gets sad and disappointed, her newest one was finding out she can't have dunkin donuts anymore for her weekend treat. I point out all the things she can have and make times like her birthday and other holidays super special, pointing out while all the other kids maybe getting candy, she had to have something extra special picked out just for her. This seems to make her feel better. I also feel sad at times for her but after 2 1/2 years and talking to her she's ok. I feel more sad for her than she does sometimes and this is all natural. I just recently have joined this board and find just reading the posts make you not feel so alone. Good luck.

On Aug 1, 2007

bethc- I was just looking at the vermont nut free chocolates website, they have butterscotch chips on there under the baking section!

On Sep 27, 2007

bethc - how is your daughter doing?