Friday, February 4, 2011

Special needs and allergies: Advice from a celeb mom who knows

Having a kid with special needs: challenging. Having a kid with special needs who also has allergies: extra-challenging. Especially when your child isn't able to verbalize said allergies.

I've got allergies on the brain this week because I got to participate in a webinar with Holly Robinson Peete, a major advocate for kids with special needs; her son RJ has autism. Holly's a spokeswoman for EpiPen (and no, I'm not doing a giveaway); Dey Pharma L.P. gave several bloggers stipends to participate and let me just say, I was thrilled to get paid to share puke stories—and help parents prep for SuperBowl parties, the second largest day of food consumption after Thanksgiving. Holly's married to former NFL quarterback Rodney Peete (her prediction: The Green Bay Packers have it).

Holly has four kids, all of whom have some form of allergies. She mentioned how she'd discovered her youngest son's allergy to milk: She'd been nursing him, talking on the phone and eating a gorgonzola salad, multi-taksing like all moms do. "Suddenly, his ear swelled up like Will Smith's lips in Hitch!" she recalled. "I had no idea what was happening." She rushed him to the doctor. "He reaches in and says, 'I found the culprit!'" A piece of gorgonzola cheese had fallen into his ear; he was allergic to dairy.

We first found out Max had a dairy allergy when he was 8 months old and we gave him cottage cheese...then took a car ride. Puke. Everywhere. I felt awful for Max—as if he didn't already have enough going on. Holly told me she'd felt the same when she learned RJ had allergies: "I was disappointed and a little distraught. Would he cognitively be able to protect himself down the line, without me?"

A few months later, I had the bright idea to give Max a spoonful of peanut butter. He gagged, got hives, the works. Allergy #2? I was floored. At least it wasn't at the analphylactic level, although with every exposure, the reaction gets worse.

Happily, Max outgrew the dairy allergy when he was around five, thereby enabling his chocolate ice-cream addiction. But the nut allergy is probably never going away (only 20 percent of people with peanut allergies and 1 percent of kids with tree-nut allergies outgrow them). Over the years, we've had some close calls, including the time Dave decided to let Max taste test vegetarian pate at Whole Foods. Vomit in Aisle 7! We have EpiPen Jr's at home, EpiPen Jr's at school, EpiPen Jr's in my purse, you name it.

I asked Holly how she's handled RJ's food allergy. "The good news is that he's developed enough language and cognitive skills to understand. When he sees peanuts he says, 'CAN'T HAVE THAT!'" Holly said. "At Chinese restaurants he'll say, 'CAN'T HAVE KUNG PAO CHICKEN!' We have struck the fear of God into him!"

Holly also talked about how important it is to have a great system around kids with special needs (or, well, any kids). As she said, "Advocate the heck out of it! Walk into the class like Norma Rae, stand up on the desk! Awareness is key." She mentioned programming information into kids' communication devices. Hel-lo, iPad! You can also convey allergy info with PECS (Picture Exchange Communication System) cards.

Sabrina is fully aware of Max's peanut allergy; RJ's twin sister looks out for him, too. "We once went to a baseball game," said Holly, "and we were sitting in an area with snacks and cookies, and he went to reach for a cookie and his twin sister snatched it out of his hand and said, 'RJ, there are peanuts in there!'"

Holly prefers to bring dishes to parties, rather than putting the burden on hosts to create nut-free foods. Although it's a good idea to ask that hosts do just one utensil per dish (to avoid passing around allergans). When she has people over, she asks guests what they're bringing: "It's all about communication!"  Especially with older relatives and in-laws, who may not get how big of a deal an allergy is.

I adore Holly because she keeps it real (I met her at a lunch for The Talk over the summer); she confessed to missing some of the stuff her kids are allergic to, like peanut butter. "If the kids are at my mom's, I'll have a peanut butter cup!" she said. I actually keep pb in the house, in a secret hiding spot; some nights, it's my go-to dinner of choice, but I use plastic utensils only and then avoid kissing Max while he sleeps (as I often do).

Word, EpiPen has a free app on iTunes that demonstrates how to use the injector, a slideshow that shows you how to walk someone through using it, and allergy profiles you and your doc can create.

So, do any of your kids with allergies? How did you discover them? How have you dealt?


  1. We discovered one sons's by accident. Like Holly, I nursed my son and he puked. Constantly. So I eliminated stuff for reflux. One day he picked up a goldfish cracker and ate it, puke two minutes later and his lips swelled. The younger one is allergic to wheat which we discovered because he craved it so much and his bowels were always a mess. Turns out they are both allergic to soy, too. Not surprising. I am allergic to nuts, legumes and soy and their dad and I are allergic to seafood. So we are very careful now!

  2. My kids don't have allergies (thank God)but I DO have a tip for you. I found a company that makes temporary tattoos for special needs kids. They actually make a non-verbal autism tattoo AND food allergy tattoos.I was tempted to get them for my youngest when he was still non-verbaldue to a speech delay.

  3. Oh yeah, I'm a nut allergy. and eggs, and soy, and off brand hot dogs. haha. My parents were always really careful and then I just sort of learned to advocate for myself. I've eaten nuts a few times since I hit college and my mouth got super itchy. Oh, and bug bites. I'm allergic to those. Whatever part gets bit swells up huge. And bee stings, they get swollen and hard too. Apparently I'm a delicate little flower. heh.

    I'm sure you saw me at BlogHer, quizzing the catering people about everything. When in doubt I just don't eat it.

  4. My kids are allergic to school and vaccinations and the dentist. Other than that, the little garbage disposals can eat everything and anything...which they do.

  5. Thankfully, we haven't discovered any allergies left. I already feel like my non-verbal son (ASD) needs so much protection from life, I think I'd be a wreck if we discovered any serious allergies. But I know we just keep doing what we need to do to keep our little ones safe!

  6. My 4 yr old has a severe peanut/ cashew allergy. He is typical, but I am terrified non the less about him entering Kindergarten next year and the cafeteria. We are trying to get the school district to go nut free. I'll let you know how it all works out. We are not the popular family by any means and he is just in preschool, but ADVOCACY is #1. His little 18mth old sister (Ds) has not had a nut yet, crossing our fingers and saying a lot of prayers that this doesn't affect her too!

  7. Makenzie has delayed allergies to a ton of stuff. This does not cause an anaphylactic response but has caused her to vomit and reflux to the point of needing a j tube and a Dx of FTT. She is now on a gluten free, casien free, lactose free, dairy free, four day rotating diet and doing wonderful! It took me a while to figure out what worked and many blood tests but in the end it was so worth all of it!

  8. We have been fortunate that Samuel doesn't have any allergies. Although at 5 yrs old his reflux got so bad and he didn't know how to tell us he was in pain, he stopped eating altogether. We kept trying to get him to eat, but he refused to open his mouth. It was the only way he communicate to us. It took us awhile--we are slow like that. But when he reach failure to thrive stage, we put in a g-tube. It was the best thing we ever did. To this day, he has never taken another bite of food orally.

    On another point, I really respect Holly and everything she advocates for and works for. However, she is wrong in one instances. It is Steelers all the way!!

  9. No allergies here, thank goodness! Although I'm sure Addison will find one, now that I've said that. Rotten child o mine.
    I have mad love for Holly and The Talk. Love love love it. Even the hubby loves it. You do the coolest things, and you need to hook a girlfriend up! ;) Now that I'm not working, I would totally fly to the NYC from the ATL and go to all of these cool things with you. Okay, am I bordering on stalker yet???

  10. Oh yes
    I can relate
    My son is allergic to almost all food
    He currently has 6 safe foods
    and lives by a formula called Elecare which goes in his g-tube
    He can only have
    rice, apple, grapes, raisins, and we are trialing corn and broccoli
    He has a disorder called
    Eosinophilic gastrointestinal disorder
    Check out for more info
    and he is on the spectrum
    and has language delay

    Do I have permission to share your blog in my blog
    It would help a lot of eos mamas

  11. We're not aware of any actual allergies in our 2 year old, but my husband and a bunch of his cousins are allergic to tree nuts, so we haven't fed our son anything with three nuts (especially hazlenuts, chestnuts, and brazil nuts) yet. I have a jar of mixed nuts that contain brazil nuts, and I keep them hidden and only eat them when both guys are out of the house and I brush my teeth after.

    The biggest impact on me is that we don't have nutella/eurocream in the house, something that I enjoy and which my husband will eat despite swelling up after eating it.

  12. Elizabeth was originally allergic to eggs, strawberries and tree nuts. She also cannot tolerate milk. Thankfully she has outgrown strawberries and eggs but tree nuts are here to stay.
    Elizabeth spent much of her early years vomiting which we blamed on reflux. After picking curdled (sorry) pieces of barf out of her linens for the millionth time (why - because they don't wash out, they just melt and stink in the dryer) I began to think that maybe the curdles were her not digesting.
    We changed her to soy and the curdle vomit stopped. I started a diary of the immediate food vomit and discovered strawberries and egg were often the culprit.
    As for nuts she breaks out in a rash around her mouth with a slight contact and I don't want to see what happens if she eats it.
    She is really good at not being allowed to eat things and will yell if she sees an offending food.

  13. Red food dye. It causes horrible stomachaches in my older son. You'd be surprised where it hides: cheapy brand chocolates, Cinnamon Life,the yellow food coloring you get at the store. Also milk, but often that's actually easier.

    Thankfully, my E. doesn't have any yet, because due to his impulsivity and his meds, he eats everything.

    Besides the allergies, my oldest is on low sodium and I have a bunch of food allergies. If I had to keep everyone's problem food out of the house, we'd be drinking water. Thankfully, while my allergies will cause major itchies and sometimes asthma attacks, nobody's does anaphylactic shock. Yet.

    I like to say that you want to be around people with allergies. Because they will have an EpiPen near them, and if you or your kid gets a completely unexpected, new reaction, you have a much lower chance of dying.

  14. Finding out my son was allergic to peanuts was like a punch in the stomach. We found out when he was about 2 1/5 when his speech therapist put a dab on his lips, and they swelled up. It hit me hard. People think it doesn't matter because he is tube fed, but it does. We try especially hard to give my son tastes of everything to encourage him to like the taste of food, and now we can't do that any more. Now we have to hold back if we are not sure about something. It is one more thing to deal with and worry about on a long long list.


Thanks for sharing!