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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Restaurants need to take some responsibility

We visited a fast food type yesterday for lunch. As always we brought a full meal for my son who has food allergies. I was disheartened to see a food allergy statement at the bottom of their menu that basically said "any of our food may have come in contact with an allergen such as milk, egg, peanut tree nuts, soy, fish and wheat". That's just not helpful, and frankly- not good enough. Disney restaurants can handle food allergies- even their fast food kiosks. Restaurants need to be held accountable to know exactly what is in their food and how to handle food so that it doesn't become contaminated by other food. That's their business. This issue doesn't only impact those with food allergies. People with diabetes, heart disease, high blood pressure, high cholesterol, pregnant women, those with celiac disease or food intolerances or people who are just trying to monitor what they eat, should know exactly what is being served to them in a restaurant. Perhaps restaurants are worried about lawsuits so it's easier to make a blanket "eat here at your own risk" statement. This isn't about placing blame, it's about working together to give accurate and safe information.

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"In Your Prime" Article Published

Check out this article I wrote. It was recently published in the June issue of "In Your Prime". Click on the link and scroll to page 13:

http://www.inyourprimeonline.com/docs/IYPJune08issue.pdf

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Allergy Friendly Pre-Packaged Food

When my son was diagnosed with food allergies. I learned quickly that I was going to spend a lot of time in the kitchen. Most of the cakes, cookies, breads, muffins and other baked products I make from scratch. It is convenient though to be able to pull some foods directly from a grocery store shelf- especially when traveling. Some of the convenience foods in my pantry are:

Poptarts®- only the cinnamon/brown sugar and fruit varieties are free of milk. All contain wheat.
Pillsbury® White Frosting- no dairy, does contain soy.
Thomas's® plain or whole wheat Bagels- contain wheat, but no other major allergens
Vienna Fingers®- contain wheat, but no other major allergens
Popcorn- just buy a bag of the unpopped kernels. Put some kernels in a pot with a little safe oil (I use canola or olive). Turn on the heat and listen to the sound of a tasty treat.
Fritos® corn chips- no major allergens.
Keebler® Cinnamon Graham crackers- contain wheat, but no other major allergens.

Be sure to check labels as ingredients sometimes change, but isn't it nice to be able to share a Vienna Finger cookie with your food allergic grandchild?

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Major Study Underway

A major study involving thousands of children and the development of allergies is underway. Researchers are studying the idea that our life style is actually promoting allergies. This five year study out of the University of Helsinki will look at what is commonly known as "the hygiene hypothesis". The idea behind this theory is that the immune system will over-react to non-infectious proteins because we keep things so clean and antiseptic that, quite frankly, its bored. We'll wait to see what the results of this study show. In the meantime, keep up with the dusting and vacuuming. For the complete article, go to:

http://www.medicalnewstoday.com/articles/109164.php

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Food Allergies and Bullying

It is articles like this that make my blood boil:

http://abcnews.go.com/Health/AllergiesNews/story?id=4659705&page=1

The story features a peanut allergic teen being bullied by classmates. These classmates would put peanut products around her "to see her face swell up". She was repeatedly threatened by these bullies. The school was reluctant to take action and the parents finally filed a 504 Plan to make sure that any threats would be treated as discrimination. Food allergy bullying is on the rise. Again, the key is education. We need to make sure that students and adults understand the seriousness of food allergies. Swift action needs to be taken in the event of bullying. A food allergic child has enough to deal with- anxiety over every bite they take, carrying medication at all times, planning every social outing carefully. The last thing they need to worry about is someone smearing peanut butter on a volleyball in gym class. It starts with the adults and trickles down to our children. We can all be better.

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New Initiatives

"Five Steps Forward for Food Allergy" is FAAN's (Food Allergy and Anaphylaxis Network's) latest initiative brought to Capitol Hill this week. Basically, it is a call for national school guidelines, better public education, development of food allergy diagnosis and management, more funding for research and improved food allergy labeling on food items.

• The House of Representatives has already passed legislation for school guidelines and it is expected that the Senate will soon follow.
• More public awareness is up to those of us who deal with food allergies on a daily basis. We need to keep talking about food allergies and help educate others.
• As public awareness increases, awareness by healthcare professionals should also be on the rise. Hopefully the days of doctors telling us that our babies are "too young to have food allergies" will soon be a thing of the past. Hopefully the days of a healthcare professional saying "you don't need to carry an Epi Pen because your allergy isn't that severe" will soon be a thing of the past as well.
• The National Institute of Health's panel on food allergies has recommended a funding increase for research. As the number of Americans dealing with food allergies rises, we need to find answers as to why and how to stop this trend. Just type "federal government spending waste" in your favorite search engine and it is easy to find some money that could be redirected. The US government gives 19 million dollars a year to The National Fund of Ireland?!!? I have nothing against Ireland, but, huh?
  
• The The Food Allergen Labeling and Consumer Protection Act of 2004 has certainly been a big help to anyone who wants to decipher ingredient labels. That said, the prevalence of precautions on labels stating "May Contain" to "Processed in a Facility" to "Made on Shared Equipment." is very difficult to interpret. Companies claim that they need to protect themselves. It just makes labels more confusing and not very helpful to consumers. These statements need to be regulated to further improve food labels.

See http://www.foodallergy.org for more information on the five initiatives.

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