When we first had Fruit Bat tested for food allergies, he was five months old. He had eczema from head to toe and I was desperate to figure out the cause.
He tested positive for dairy, egg, tree nuts and peanuts. My initial reaction was relief. I could cut those foods from my diet (I was still nursing him exclusively) and maybe his skin that was red, angry sandpaper would soften, would stop itching.
And the full body rash did ease quite a bit.
Still, I didn't fully understand food allergies. I thought I could have a piece of peanut butter pie here, a milkshake there and it wouldn't be any big deal.
When we had him retested at age one, his wheals (which are the hives the allergists measure to get an idea of how allergic someone might be to a particular substance) were huge.
Still, I didn't get it.
I'd occasionally give him cheese and ply him with baked goods containing egg and dairy. It wasn't until hives started popping out on his arms and legs that I realized how these foods were taxing his immune system.
At three he was tested again. This time the allergist chose to do a blood draw and have the lab perform a CAP RAST so we could get actual numbers rather than just measuring wheals.
His numbers for nuts, egg and dairy were high. So high. I wept. I gnashed. I was jittery. I had to take a Xanax that day.
Last year, his numbers for egg and dairy started to abate a bit. And I made the mistake of hoping. Hoping that he'd someday be able to eat real pizza, Ben and Jerry's, omelets, frozen custard. Hoping that we wouldn't have to bring our own cupcake to birthday parties and that he wouldn't have to feel left out when other kids got treats he couldn't have.
I've always known that the Peanuts are probably a lifelong allergy. His peanut numbers are astronomical and, honestly, it is peanuts that I fear will someday put him in the ER (Hopefully not worse. Oh, please, hopefully not worse.).
But the eggs and dairy. They've never been the thugs to me that Peanuts are. They're the delinquents that swagger several paces back from the thug. They sneer and threaten, but, as long as we don't make eye contact, they will never actually jump us.
This morning, though, I was informed that Fruit Bat's numbers for eggs tripled and for dairy doubled. This is after years of reading labels, avoiding restaurants, bakeries and ice cream shops, of never giving him anything homemade by someone I didn't really, really trust. After years of believing that if we strictly avoided eggs and dairy he had a great chance of outgrowing his allergies to them.
So, with no exposure, why would his numbers have gone up?
I'm frustrated. I'm so fucking frustrated. And I'm scared. I'm sending Fruit Bat off to public, all day Kindergarten in a month. The school is close to our house. He'll be with grown ups who care about him, but who probably understand food allergies about as well as I did when I was feeding him nibbles of Cheddar and spoonfuls of yogurt.
The delinquent eggs and dairy are getting feistier, their glares more menacing.
Usually I'm able to accept our reality of little to no eating out, of teaching Fruit Bat what peanuts look like and to stay far, far away from the bastards, of a certain amount of deprivation.
I'm able to celebrate when I find a new soy ice cream treat he can indulge in and dance a little jig when a friend bakes safe cookies for him to enjoy with his friends.
But today. Today I'm a little bummed. I don't feel like I need a Xanax this year. I've been around this track quite a few times.
I just want my boy to be able to enjoy life. To not have to fear something as pervasive as FOOD, for God's sake. I want him to be able to eat cake.
Any damn cake he wants.
I'm so sorry. :( That sounds incredibly, extremely frustrating.
Posted by: Teej | July 28, 2008 at 12:38 PM
Seriously? I can't imagine. I cannot IMAGINE how to deal with food allergies. A good friend of mine has a daughter who has severe allergies, and I'm completely awed by the special arrangements she makes just to keep her daughter safe. (Hey--if you want me to put you in touch with her, let me know.)
This is the most disjointed comment I've ever written. Please know that I'm frustrated FOR you. Let me know if there's anything I can do. (And I know that sounds really stupid coming from St. Louis...)
Posted by: Angela | July 28, 2008 at 01:03 PM
Angie, that sucks. I'm so sorry.
It's one thing to deal with the whole frightening peanut thing (and how you keep calm with Kindergarten looming, I can't imagine. I would be a wreck), but also to know that your dream of fairly normal eating habits and snacks is slipping through your fingers sounds so frustrating.
You sound like an excellent mother, and your son is lucky to have someone fighting so hard on his side.
One question...How did you get the Dr. to prescribe the Xanax? Never mind, it's probably for my own good that I don't have any.
And, Bastard Peanuts made me snort coffe out of my nose.
Hope your week gets better!
Jennifer
Posted by: Jennifer | July 28, 2008 at 01:25 PM
I'm so sorry Angie. I was really pulling for Fruit Bat to have lower test results this year. Huge bummer. Bummer doesn't even describe the disappointment you must feel.
Posted by: Kara | July 28, 2008 at 01:34 PM
Oh Angie...I feel for you, DS goes back in a couple of months for his tests, I am hoping and praying he can shake something off the list. Give fruit bat a big hug for me.
Hang in there!
Posted by: Parul | July 28, 2008 at 03:06 PM
oh man, angie, that sounds rough.
i have some idea of what you're going through, because a friend of mine -- who is a blogger, too -- has a daughter (Six's friend) with the same allergies as Fruit Bat. Though the mom is not currently blogging, she's written about her battle with her daughter's allergies and has done a lot to educate herself and help her daughter.
Her site is www.imperfectmommy.com, and one of her categories is "food allergies." Just FYI.
Posted by: slouching mom | July 28, 2008 at 03:12 PM
I'm so sorry that the allergies look like they are here to stay. I'm an adult who can't eat any damn cake I want, and it sucks, even now.
(And the people who say: just a bite, etc. Ack. It gets very old.)
But I want you to know that school's take food allergies far more seriously than they used to. It isn't uncommon to see a bright red sign on the door, alerting other adults they are entering a peanut/egg/whatnot-free zone.
It will annoying and scary, but with the help of the school nurse, I bet you will find teachers willing to rally to your cause.
No one wants to have to administer an epi-pen;they are scared to death of something going wrong, just like us.
(When my husband senses a little nonchalant attitude when I ask for no egg on my salad - sometimes they forget and then pick it off and the slightest bit makes my throat close - he tells them point blank about the epi-pen. I hate being *those people*, but stupid ass food allergies have made it impossible not to be.)
Ok, enough rambling. I just feel your frustration and wish I could do something to make it better.
Posted by: Lisa Milton | July 28, 2008 at 03:17 PM
I don't know what the school was possessing above ^. Food allergies get me ranting.
Posted by: Lisa Milton | July 28, 2008 at 03:19 PM
That really blows. I can't imagine having to deal with that. You're very strong and Fruit Bat will grow up even stronger with you on his side.
Posted by: AndreAnna | July 28, 2008 at 03:56 PM
When you send him to school, contact the district office and request that the school nurse/health official come and do a presentation to the students and staff. We had this done at the school where I teach, and it had an amazing impact on everyone-the seriousness of it.
Posted by: Mrs. G. | July 28, 2008 at 03:59 PM
I replied to you on the FEAST board but I just wanted to give you a cheesy (oops, dairy-free cheesy) internet {{hug}}. We had the same frustrations as ds's "bastard peanuts" RAST #'s just kept climbing and climbing despite complete avoidance.
And again, while he only now has peanuts to deal with (his egg allergy was never anaphylactic and he outgrew it this past spring), we are able to manage ok at school (with a little help from a 504 Plan - please look into getting one for Fruit Bat!).
Posted by: Pez | July 28, 2008 at 04:22 PM
I'm sorry. I really empathize. One boy child in our house with gluten/caseine allergies (plus a few others), and a different boy child with Type I diabetes. Not seeking any sympathy - doesn't help when people "one-up" you with their problems - just want you to know I get it. Eating shouldn't be so complicated for these kids. Why can't it just be food...
Posted by: Chris | July 28, 2008 at 04:25 PM
Both my boys are allergic to peanuts and tree nuts. I was a nervous wreck when they started school, too. I'm assuming you're a member of the Food Allergy Network? Buy their videos - I bought the one about the elephant that was allergic to nuts - and bring it in to show to your son's class. Bring in an epi-pen trainer to show the kids what your son needs to do if he eats the wrong foods. My boys got to sit at a nut free table (and got to invite a friend or two to sit with them) - not as easy for you because of the variety of allergies, but will your son have a reaction just being near dairy or only if it is ingested? We had a situation where a kid put his peanut butter sandwich in my son's face because "my mom has allergies and she just sneezes".
The number one thing you need to do is calmly help your son become his own advocate. Until you're comfortable otherwise, be sure he only eats food you have provided. If it's something prepackaged, he can bring it home and you can determine whether it's safe for him to eat. Provide snacks that you know he likes for those days that someone brings in a birthday treat.
I sent my then 9-year old (epi-pens and inhaler for asthma in hand) off to overnight camp for a week. He's now 14, so he survived! I promise it will get easier.
Posted by: Bobbie | July 28, 2008 at 04:45 PM
Oh I'm sorry this is coming to a head... I can see how it must be stressful. Are you feeling like the school will support you?
Posted by: Erika Jurney | July 28, 2008 at 05:22 PM
I'm sorry! My sons numbers went way up too so I can totally relate. I'm sending HUGS to you and hope that next year is his year for things to turn around. I hate food allergies.
Posted by: Janeen | July 28, 2008 at 06:07 PM
Allergies suck, for sure. Here's my experience: You get used to them and they become almost normal. I have celiac disease and haven't tasted a "real" dessert in 10 years. And unlike Fruit Bar, I could eat that stuff as a kid so I know how GOOD is all tastes. I'm not trying to one up you, I am totally empathetic. I'm sure having a child with severe allergies is stressful and it makes sense that you feel sad that he's different in this way. Keep this in mind: I bet it's more difficult for you than it will be for him :)
Posted by: Lisa | July 28, 2008 at 06:09 PM
Girlfriend, I could've written this post. Except my 4-year-old son started out with egg, peanut, wheat, and soy (at 7 months) and has added dairy, tree nuts, and beef. (BEEF, of all friggin' things. Who the hell is allergic to beef?) His allergy testing last summer was so horrendous, for him and for me, that I'm really afraid to repeat it.
Anyway, you've already gotten a lot of good advice, and I just wanted you to know... unfortunately, you are not alone. It is so goddamn frustrating and heartbreaking to have to always be saying to your child "No honey, I'm sorry, that will make you sick." Literally, if a magical genie were appear to me right now and offer to grant me any wish I want, I wouldn't wish for money or a beach house or any of that... I would wish for a cure for food allergies, so that my kid could eat like a normal kid and so that I could stop needing anxiety medicine every time I let him out of my sight for five minutes! [End rant.]
BTW, you planning to do the FAAN Walk in Seattle? It's September 6, you still have time to sign up and do a team! Here's the page: http://www.foodallergywalk.org/site/TR/2008Walk/General?fr_id=1220&pg=entry if they're like the Walk we're doing (which I'm chairing this year) there will be a ton of really fun food-free things for the kids to do!
If not, here's a shameless plea for you to donate to my team (like you did last year!) Here's my page: http://www.foodallergywalk.org/site/TR/2008Walk/General?pg=personal&fr_id=1260&fr_id=1260&px=1174162
Hang in there honey, Fruit Bat will be okay. You'll figure it out. And if this makes you feel any better, the doctor who's honorary chair of our walk (Dr. Wesley Burks from Duke - google him) says he thinks they'll have this solved in the next five years. He's working on some really promising stuff, I'm thinking about taking Ryan there although it's about a 4-hour drive. I really hope he's right.
Posted by: jenn | July 28, 2008 at 06:13 PM
That's terrible, and so sorry for your frustrations. I'm a celiac myself, and have recently had the kids tested, and found a dairy allergy in one. I'm hoping that it'll abate, but at the same time, we eat weird in my house because of me, so we'll deal.
I know it can be difficult. That's what the internet is for...free rants, dumping emotions, and electronic hugs.
Posted by: mJ | July 28, 2008 at 06:35 PM
Man, I can't imagine; that just sucks. Having peanuts be a lethal weapon? Egad. I wish I had some helpful information for you. What I can say is when I was teaching I had a parent whose kid had peanut allergies come in and read a story to help the kids understand. I cen't remember the book she read, but this one or a href="http://www.amazon.com/Day-Playground-Food-Allergies/dp/1595266062/ref=sr_1_29?ie=UTF8&s=books&qid=1217296127&sr=8-29">this one look good. I hope he finds some relief in some form or other soon!
Posted by: Sheryl | July 28, 2008 at 06:57 PM
I'm sorry to hear about your Fruit Bat. I can sympathize to the slightest degree as I was an intensely sick child for quite a while, but was never denied such a thing as food.
Thanks for coming by my blog. Hope to see you there again.
Posted by: Eric | July 28, 2008 at 06:58 PM
Oops, sorry, html went wonky. try this one
Posted by: Sheryl | July 28, 2008 at 06:59 PM
Completely understand... my son and I are both allergic to dairy products, and my wife is allergic to wheat and corn and all derivatives... so cooking is a challenge for me... I have learned to be very creative... I used to cheat on the dairy stuff myself, but no longer worth it AT ALL...
Besides just the allergic reactions, long term exposures to sensitive foods can also cause other problems, such as cancers, etc. Just had a friend whose mom died from stomach cancer after years of eating foods that she reacted to - so it can be very serious if ignored over a lifetime...
I am really hopeful that your child will outgrow this, and that things will get better - but in the meantime, it's worth it to keep Fruit Bat's diet clear of those things...
Commiserating with you....
J/
Posted by: GoteeMan | July 28, 2008 at 08:29 PM
I totally feel for you. I think the schools are much more aware than they used to be, but the parents still need to be working harder to educate their kids. My kids know that they can have peanut butter for breakfast but they must still be in their PJs. We scrub and change them afterwards so that they are peanut-free by the time they get to school. We talk about the child with the fatal allergy so that there will be no peanut butter waving incidents.
Posted by: Emily R | July 28, 2008 at 09:06 PM
Oh no that does suck. Poor guy. I can't imagine your fears. However, I do feel that schools are up on the peanut allergy thing. They are very cautious in a classroom when there is a child with these types of allergies. I know at lunch my kids school has a no peanut table and any kid who brings PB&J to schoolhas to wash their hands after eating.
I can't even imagine your struggle and the worry you will face, hang in there.
Mostly, please don't visit my site today, there's peanut all over it.
Posted by: noble pig | July 28, 2008 at 09:58 PM
So sorry you guys are dealing with this. I just sucks all around...
Posted by: Rayrena | July 28, 2008 at 10:03 PM