Friday, February 15, 2008

Anxiety and Peanut Allergy

I think I speak for all parents of a peanut allergic (heck make that any food allergic) child when I say that the moment your child's allergy is confirmed either through a reaction or a positive test your life changes. Dramatically.

Throwing out food. Sanitizing food equipment (or throwing it out altogether). Relearning how to cook for your child (and your family). Avoiding cross contamination. Educating family. Educating school/daycare (sometimes easier than educating family). Asking servers 42 questions. Reading labels. And reading labels. And, oh, did I mention that I read labels?

But most of all, at least for me, the diagnosis came with LOTS of anxiety. For the first 6 months (at least) after Bella's diagnosis, I would be fine during the day, the responsible parent, watchdog for my daughter. Actually I took on a 'no big deal' sort of attitude, hoping folks wouldn't see that I was falling apart when I was alone.

At night, well that was a different story. I would lie awake at night, my husband sleeping soundly, worried to death each night. Nothing would calm me down. And my mind would race.

How was my little girl going to function on a daily basis? What would happen when she got to school and there weren't people really watching out for her? What if she dated a boy who ate peanut butter and then kissed her? Would she encounter bullies at school who would spike her food with nuts? Would she have any friends since she would be the girl with the peanut allergy? Could she go to summer camp? What if she was on a field trip and they fed peanuts to elephants and she stopped breathing and noone knew what to do? What if she's a teenager with an attitude and wont carry her epipen with her and she needs it?

I didn't say they were rational worries. But I would lie there, my heart racing, with tears in my eyes. So worried for my little baby girl. I can't tell you how many hours of sleep I lost.

So what did I do? Well, I wish I could tell you that I pulled myself up by my bootstraps and decided to change my attitude. Thinking back, I really should have seen a therapist to manage these thoughts.

But I didn't.

I just kept putting one foot in front of the other. Devoured posts on peanutallergy.com. Found other bloggers (check out my list at the right). Researched every clinical trial out there. Hell, I even contacted Wesley Burks at Duke and asked him questions (what a great guy by the way)!

And I thanked my lucky stars that Bella wasn't allergic to something NOT on the Top 8 list. I ultimately realized that peanuts are just ONE food. Life could be worse.

But the anxiety still rears it's ugly head now and then. There are days, that I sit at my desk and see my day care's number on caller id and I lose it before I answer the phone. In that split second I think (and this may sound horrible) that she's had a reaction and she's on the way to the hospital. But more likely they are calling to tell me that she bumped her head trying to jump off the slide (she's quite a tomboy), but I always fear the worst :) I worry so much when she's with new people, or if she's with family but they're going out somewhere. But I still let her, even at this young age, go on adventures (that I've researched already, what am I nuts?).

But I can't let my anxiety prevent her from living her life. What kind of parent would that make me? A crazy one, that's what!

When I'm feeling anxious or scared, I go online, and read other people's blogs, and rest assured that I am not alone. That we are all going through it, day by day, to ensure that our babies (however old) are safe.

I can only hope that I can ease the mind of someone out there who's feeling as scared and anxious as I was.

It does get better. Really it does. You'll be fine. So will your baby. Don't worry. Just live.

How do you cope?

17 comments:

Pez said...

Coping with some issues gets easier as your child gets older (like having them eat food without asking if it is safe) but other worries take their place (bullying and peanuts). Also, my son has a lot of anxiety surrounding his peanut allergy and had stopped eating outside of our house and he has become a chronic handwasher. :( We have him in counseling now to work on these issues.

I read once that peanut-allergic children report a worst quality-of-life than children with diabetes. It of course revolves around anxiety/fear. It breaks my heart that by doing all that we were told to do we have somehow turned my son into this anxiety-ridden child. We're working on "fixing" it.

ChupieandJ'smama said...

Coping isn't easy. And most of the time (now that we are 3 years past our diagnosis) I do ok. BUT, I do have my days. I pray. That's how I cope. And at night when the kids are in bed and everything is fine, I have a glass of wine.
I also blog about allergies, cook for allergies, joined a support group for parents of kids with food allergies, and read everything I can get my hands on about food allergies.
Maybe I'm not coping.... :) Some days I think we're all just surviving.

She She said...

It's hard, but it gets easier when they get a little older (the worry isn't constant). My son is seven now. I wrote a post about "fear fatigue" in December (http://whosheshe.blogspot.com/2007/12/fear-fatigue.html), and if you read it you'll see that the fear never goes away completely. It just morphs.

Two things helped me manage my anxiety: 1) realizing and accepting that I can't make my son feel like he's "normal" and not different, because he IS different. 2)teaching my son how to handle his allergy by making him ask waiters, other parents, etc. about ingredients. The sooner he gets competent about handling his allergy, the better. There are going to be so many years that I won't be there to watch over him. I want him to know how to handle himself.

ae said...

I'm so glad I found your site. I've been dealing with my daugher's peanut allergy for a couple of years and it's terrifying. Luckily, I finally convinced her daycare to go totally peanut-free (with my assistance), so hopefully I won't have those same thoughts everytime their number pops up on caller ID...

tanal said...

I have only known about my sons' peanut allergy for 2 months now and I am still having a very difficult time in coping with it and also accepting it. I have found your blog very very helpful. Thanks. It is comforting to see others like me and that it does get easier with time. There are still so many questions out there and so many things that are too scary to think about. Will life ever be normal? And really what is normal now? Everything changes from eating out, to travelling, to birthday parties, class hikes, etc. It is frustrating and a huge learning curve for me but I am researching and meeting with everyone I can to adjust. But I must admit I think I am starting to adjust and then I go right back to anxiety, fear and many tears. Will it ever go away??

fourgirls said...

I have been reading your blogsite for months. My 24 month old was diagnosed officially at 1 year, but had an accidental exposure at 7 months and I suspected it then. I can only hoe that this stage is one of the more difficuly. I feel as though I am her "brain". I have to be on hyperalert until she can be herself. It sucks. I suffered from terriably anxiety. The tears the fears, the scenarios that I would torture myself with in my head. (like we all have I am sure). It is such a comfprt to read all of your words. Having a couple of friends whose children also have a nut allergy is such a help. Some days are better than others !
I loooove sunbutter! In fact, I"ve had to stop buying it, because I devour it (much like I did peanut butter...)

Jenny said...

I'm glad I'm not the only one. I also have lain awake at night worrying about my daughter.

What gets me through it is being prepared, educating myself as much as possible and getting a little more confident each time we complete an activity (like going out to eat, or her attending a Girl Scout field trip, etc.) without a reaction.

It's good to hear from others who have the same issues!

Anonymous said...

Hi there,

I'm 27 and have had a life-threatening peanut allergy all my life. We turn out just fine.

In fact, I think we draw compassionate, caring people into our lives since these things are a 'must' for us - all my close friends and my live-in boyfriend are extremely sensitive to my allergy. At the same time, it's not the main focus of any of my relationships and I don't consider myself any more 'different' than anyone else.

I've been told that I don't know what I'm missing (reese cups, pad thai, etc). It's true, I don't. On the other hand, the people in my life go out of their way to help me out: my boyfriend had nut-free chocolates mailed to me after my thesis defense (probably should have eaten 8 truffles in a row though...ugh), my sister stocks up on nut-free granola when I go visit her, and when I went on vacation with a good friend this winter, she actively sought out peanut-free airlines. I get to see these extra bits of kindness in people that others don't, and I would say that's WAY better than a reese peanut butter cup.

Of course it's terrifying for you as parents, but know that your kids will be ok and that there are now PA kids who are 'all grown up', healthy, happy, and with a circle of wonderful people around them.

Hang in there!

jenny said...

Hello, I found your blog thr. peanut allerg.com, i quickly look over a few posts and this one really caught my eyes. it's good know that you are not alone. i am a single mom with a 2 1/2 and the hardest part dealing with her allergy, interestingly, is - educating people. we lost friends because of this. not everyone is compassionate and willing to learn. i look forward to read more if your blogs, thanks for being there and speaking for all parents living under the shadow of this allergy

Robin said...

Wow, thank you to the 27 year old who's beautiful words brought tears to my eyes. I can only hope and pray that my daughter has your same outlook when she is older. I live in fear everyday and reading what all of you have to say eases the pain a bit and validates all of my feelings. This is the best site I have found and I thank you for sharing your stories. I have been dealing with my daughter's peanut allergy for under a year and she is going back to get tested for tree nuts next week. I wonder if that is a mistake but I just need to know. She avoids all nuts of course but I can't help but wonder.

Anonymous said...

i am allergic to, and it is hard. but i cope. bullies at my junior high may tease, but they dont poison my food. i carry my medication everywhere in a glamorously-stylish fanny pack(top of the line, if i do say so myself). i keep myself going on the Cat System. i invented it. here is how it works:
if a cat must have lots of lives, it follows reasonably that anyone in any dangerous situation must have lots of lives. i picked sixteen, because that is my lucky number. i still have twelve left. losing them at this rate, i will live to be 63, at which time there will probably be a cure. i always pack my own lunch, and if someone says something mean like "i'm going to kill you" i just say "you're the one going to jail for it". sometimes i cry and feel there is no hope, but then i go pet my pet rabbits and live through another day. focus on the positives. this life is far, far, FAR from impossible.

Anonymous said...

My daughter went into anaphalaxis from a cashew last week. She spent 8hrs in the emergency room to then be moved to intensive care for 36hrs. I am still in a state of shock, and extreme anxiety. She has a tree nut allergy and we are going for testing to see if she also has a peanut allergy. I've talked to my family doctor and I am going to start counseling soon to help. I am reading everything possible about nut allergies and I have seen a lot of posts I can relate to here and some reassuring posts as well. Right now all I can do is live day to day and pray for the best.

Take In Case said...

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Anonymous said...

Thank you for your blog. I really needed to read something supportive on another sleepless night as a mother of a child with PN/TN allergy like you. I hope the IT gets approved soon for treatment at allergists's offices nationwide.
wanna know something ironic? Before I had my daiughter, I was accepted into an allergy/immunolo fellowship program and declined due to conflict with my husband's work. I had to relocate to another city and gave up the opportunity to be a trained allergist. I could be treating mymown daughter with OIT right now!

Anonymous said...

I know you wrote this 5 years ago but it's like you went in my brain and just wrote out everything I was thinking and feeling. My 18 month old son was just diagnosed after a severe reaction that landed him in emerg for a day. My whole world feels like it has been turned upside down and I fear I'll never be able to leave him with anyone else ever again. I thank-you for writing this as it at least lets me know that I am not the only one out there with these fears and worries.

Anonymous said...

I'm 17 years old and have suffered with a Peanut/Nut allergy all of my life. My parents were so wonderful during my childhood. They educated me and others around me on how to stay safe and I've only ever had 2 mild reactions. With adolescence however, came independence with my nut allergy and I am struggling to cope with the anxiety that surrounds that. I regularly have panic attacks in which I feel as though my throat is closing up, and this is just brought on by the fear of encountering a nut. Dealing with the anxiety which surrounds a nut allergy is a lot more difficult than dealing with the allergy itself. However, I'm going to try and break the vicious cycle of anxiety and fear and next year I'm off travelling around South America on my own. Although I will have to be extra careful with my allergy, my parents have shown me that it can be avoided. Why should I let an allergy rule my life?
Advice for parents with kids who have nut allergies - talk to them. They will have fear and anxiety, but it isn't forever. Tell them that having a nut allergy doesn't have to limit your life choices.
I keep praying that one day these horrid panic attacks will stop, but until then I shall continue to successfully live a nut free life and fight this fear.

Kate said...

I'm sitting here in tears while my husband snores. Reading your list of anxieties made me feel normal and hopeful. She's so precious to us, and I feel like I can't protect her from this. She's 2-1/2 and staring preschool in the fall. I'm terrified. It's sheer desperation. But, my logical mind has got to rule (and also help avoid any anxiety issues for her, which could be far more detrimental than the actual allergy) and I've got to get comfortable and confident with this. And careful and educated. Thank you.