Halloween Fright

Only 11 days until Oct. 31. The ghouls and goblins will be knocking at the door, bags open wide for Halloween treats. Each year I question myself about what our family should hand out. Should I stick with non-food items or maybe only candy safe for my food allergic son? I worry about the candy bars and other treats he will get as he goes door to door but it doesn't seem fair to tell an 8 year old he can't go trick or treating. He knows he can't eat anything until it's been checked and he also knows that we'll need to take away nearly everything he brings home. We swap the treats for safe ones. My heart breaks a bit, but he knows nothing different and seems to be fine with our arrangement. If you know that a child with a food allergy will be trick or treating at your home, there are a few things you can do:

* Drop the treat directly in the bag rather than handing it to the child.

* Don't call attention to the child's food allergy.

* If you want to have a safe treat available, check with the parents in advance. Some of our neighbors put boxes of raisins, safe candies, bags of pretzels or safe cookies in my son's treat bag. Again, don't call attention to the difference, but know that it's much appreciated when there are safe treats to enjoy.

* Consider handing out pencils, stickers or other non-food items.

* Comment on costumes and less on "look how much candy you've got in your bag". Yes, Halloween is about, but it's also about dressing up and visiting with neighbors.

So pull out those witches hats, stretchy spider webs and jack-o-lanterns and enjoy all of the festivities of Halloween.

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Food allergy Alerts

I just retrieved a bunch of food allergy alerts from my e-mail in-box. This is when a food manufacturer voluntarily says "oops we messed up and put some ingredients in our product that isn't listed on the label". This is very scary info when you deal with life-threatening food allergies. Stay on top of these "oopses" by subscribing to:

http://www.foodallergy.org/alerts.html

You don't need to be a FAAN (Food Allergy and Anaphylaxis Network) member to sign up. Remember, always call the manufacturer of a product if you have any questions.

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Food Allergy Blogs

Here are a few other food allergies blogs I like to visit...when I have time between planning meals, grocery shopping, label reading, calling food manufacturers, preparing food, washing dishes...:

http://www.childfoodallergy.com

http://allergicgirl.blogspot.com

http://peanutfree.blogspot.com

http://foodallergies.about.com

http://mykidsallergies.blogspot.com

http://kidsfoodallergiesblog.com

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Get Rid of "May Contain..."Statements on Food Labels

THE FDA (Food and Drug Administration) is holding a public hearing today from 9 am to 4:30 pm to discuss clearing up vague statements on food labels. Hallelujah! Ever since the 2004 Food Labelling law went into effect, we have been bombarded with statements like, "may contain peanuts", "manufactured in a facility that uses eggs", processed on the same line as products containing dairy". These read to me like "don't sue us if someone has a reaction after eating our product". Vague statements are not helpful and downright confusing. Because of the 2004 law, we can now read a label and clearly see statements like "contains milk". That makes much more sense to most consumers than the word "whey" (which is from milk) in the middle of an ingredient list.

That said, there is more to do to make things clearer for those of us who purchase food. Food manufacturers should be able to be clear about what is, and what isn't, in the foods they sell. Most people recognize that there is no such thing as a 100% guarantee, but we need accurate, helpful information to make the best decisions possible.

You can read about the purpose of the FDA hearing here:
http://www.cfsan.fda.gov/~lrd/fr080808.html

I'll keep you posted about the results.

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Food Allergy Lunch Tables

The elementary school cafeteria can be a dangerous place for children with food allergies. To keep food allergic children safe, some schools have a designated table called the "Peanut- Free Table" or the "Food Allergy Table". With so many children dealing with multiple food allergies, it is hard to ensure that this table is even safe for those who sit there. A peanut allergic child may be drinking milk beside the dairy allergic child. Ask if you can mark off grids with masking tape on the top of the table. Each child would have their own section and food must stay within the marked lines. All children (food allergic or not) should be taught to keep their hands to themselves when they eat, to avoid sharing food, and to wash their hands after lunch. Good lessons for us all.

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A Few of My Favorite Things

There are some great products out there to make life a little easier when you deal with food allergies every day. Here are a few of my favorites:

Toaster Bags- These bags are great when you're traveling or visiting relatives. You just put the bread (or whatever you want to toast) into the bag and pop it into the toaster. No more worries about cross-contamination. When you're finished, just rinse it out for next time. You can get the bags at http://www.amazon.com/gp/product/B0012XGM92/ref=cm_cr_mts_prod_img.

Cupcake Holders- Sending a cupcake to school or to a birthday is no longer a messy endeavor. Just put the cupcake into this single plastic holder and it will travel in style and arrive in perfect condition. Go to http://www.cupacake.com to learn more.

Epinephrine Carrier- My son prefers the simple waist pack which can be found at http://medipouch.com. He wears it whenever he leaves the house. It's just like putting a belt on every morning and we know he has his medicine with him if he needs it.

Customized Medical bracelets- Several companies design medical bracelets for children and will engrave specific information on the back such as allergies, instructions, parent cell phone number, whatever you want. The designs certainly favor girls as the bracelets can be made with beads and crystals, but there are boy products available. See http://www.hahoriginals.com/catalog/default.php?cPath=66_63 for some ideas.

Restaurant Cards- We don't eat in restaurants very often, but these cards are great helpers to explain to wait staff, managers and chefs about food allergies. See http://www.achooallergy.com/foodallergycards.asp to order.

Ingredient Cards- I take ingredient cards to the store with me so that I can interpret some of the confusing food labels. How was I to know that "whey" means milk and must be avoided by someone with a dairy allergy? These cards a big help. You can purchase them for $2.00 each through the Food Allergy Network (http://www.foodallergy.org). Just click on "Shop for Books and Gifts".

Do you have any products you love? Please share.

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3 year cocci anniversary, hearing aids

Today, July 18, is the 3 year anniversary of the start of Denise's struggle with cocci. So I thought that this would be a great time to finally post an update to share all the good news.

In February Denise did a photo shoot for Edwards Lifesciences Corp. They made a cardiac device that helped her tremendously. One of the CCU nurses at Arcadia Methodist saw the device in action, then went to work for Edwards, and called us to see if Edwards could use Denise's story in their annual stockholder report. The story behind this photo is that the kids were getting squirmy after a while, and the photo crew couldn't get a picture with everyone posed properly at the same time. So at one point I told the kids to cut loose and tackle mommy. They did, and the photographer started clicking pictures. One of those semi-candid shots is the one they used. They put Denise's picture on the front cover and the online version even has a bit about her that didn't make it into the printed report (click here). A note about the doctor on the page with Denise in the online report: Dr. Rogove, D.O., F.C.C.M., F.A.C.P. I think that's a string of Latin abbreviations for "Was not one of Denise's doctors, but looks darn spiffy in a suit and is an adroit spokesman for Edwards' products." It's a bummer that photos of Denise's actual doctors aren't there. A bigger bummer is that Dr. Rogove's in Laguna Beach while we're in, well, Duarte. 'Nuff said.

April: My nurse aunt & I attended the Cocci Study Group in San Diego CA, and Denise came along this time, since the conference wasn't held in a cocci-endemic region. Denise got to meet & thank two of the biggest names in cocci research for their work: Dr. Hans Einstein (light suit) and Dr. Demosthenes Pappagianis (dark suit). They've been studying cocci since the 1950s. I need to do some fact checking, but I believe that Dr. Einstein is credited with figuring out an effective way to combat cocci (using amphotericin) in the 1950s and Dr. Pappagianis is credited with publishing his first cocci paper around the same time. So we got to chat with the big-hitters of Valley Fever research, and all I had on me with which to capture the moment was my lousy camera phone. Sigh.

• The latest titers came back showing undetectable levels of the cocci antibody! The voriconazole is suppressing the cocci nicely. Since that's the case, there's no need for those pesky routine spinal taps. Yay!
• Her neurologist ramped down the anti-seizure medicine and discontinued it several months ago, and Denise has been doing fine.
• She recently had an echocardiogram (to check her heart's strength) and an MRI (to check for any advancement of lesions in the brain). We haven't gone to the appointments to hear the results yet, but the cardiac tech told Denise that it was hard to believe that her heart was bad at one point. That was encouraging.
• Her GI tract is coming back to normal, and ab swelling is going down. Her GI specialist told her that after what she'd been through, it could take her body a couple of years to feel and look "back to normal." Since things are getting better, he took her off of one of the GI-related meds. She's discovered that a little coffee has some of the same benefits.
• Her vision improvement seems to have stopped some time ago. But she's adapted to mild vision impairment so well that she hardly notices it anymore (until she goes for retinalogist visits). Other than no longer feeling comfortable about driving at night, she's doing nicely. It's wonderful that she's progressed from what she described as a large black field in one eye, to now having some blurriness that she's adapted to.
  
• Her hearing improvement also has stopped. The results of her ear exams show no physical problem, so the doctor assumes that the damage the cocci did to the hearing portion of the brain is probably permanent, and recommended getting hearing aids. She's said that in one ear, everything sounds badly muffled, and she's noticed that she can't hear people as well as she was able to before getting sick. There have been many instances wherein she's felt embarassed by either misunderstanding what people have said, or not hearing them at all and coming across as rude because she doesn't respond at all. The problem is multiplied in noisy settings with multiple conversations going on at once. She's teetering back & forth between wanting something completely in the ear (so that nobody notices she's already got hearing problems) and wanting a behind-the-ear hearing aid that's easy for people to notice (so if she doesn't respond properly to other people, they'll get the clue that it's just a hearing problem, not a rudeness problem or a mental problem).
  

So there you have it. Lots of good news, and no crisis. Thanks for checking in!

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