Help is Needed Again for Food Allergy Bill in PA

I wrote about house Bill 1148 last Monday. The bill was sent to PA Education Committee members Weds. June 24. It was tabled. Here's the latest information from Rep. Murt's office about the future of this important bill:

The PA House Education Committee met on 6/24/09 and discussed HB 1148 - Food Allergy Guidelines. This bill directs the Pennsylvania Department of Education to research and publish guidelines for the successful management of food allergies in our schools. The committee raised questions regarding how the legislation would impact existing laws and no bill vote was taken. Since last Wednesday, the legislation was re-written. We choose to clarify the impact on exiting school code by clearly illustrating the changes to the existing code. Changes to the Local Wellness Policy clause 1422.1 allowed us to identify Food Allergy Management as being as important as child health, nutrition, and physical education. Adding an additional dictate to Section 1422.3 allow us to outline the need for Food Allergy Guidelines and what they must accomplish.

The next meeting of the PA Education Committee where they will vote on HB 1148 is now this Wednesday, 7/01/09. Please forward this message to your membership and friends asking them to re-edit it to their liking and forward it to the following list of Education Committee members.

JRoebuck@pahouse.net, ksmith@pahouse.net, LCurry@pahouse.net, JYudicha@pahouse.net, bsmith@pahouse.net, mcarroll@pahouse.net, sconklin@pahouse.net, RGrucela@pahouse.net, pharkins@pahouse.net, mlongietti@pahouse.net, MOBrien@pahouse.net, JPallone@pahouse.net, cwagner@pahouse.net, JWheatle@pahouse.net, RYoungbl@pahouse.net, Pclymer@pahousegop.com, mfleck@pahousegop.com, Dmetcalf@pahousegop.com, dmilne@pahousegop.com, Boneill@pahousegop.com, Tquigley@pahousegop.com, Klrapp@pahousegop.com, MReese@pahousegop.com, trock@pahousegop.com, WTallman@pahousegop.com

Thank you again for your continued support.

Bill Dixon
Legislative Aide
PA State Representative Thomas Murt's District Office
(215)674-3755

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I have the document that will be presented to the committee. If you're interested in reading it, e-mail me and I'll send it to you.

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Help is needed- even if you don't live in PA. Please consider copying and pasting the e-mail addresses and letter into an e-mail and send it to our PA Reps. There is power in numbers and if all of us band together, no matter where we live, we can make all of our schools safer for those with food allergies.

Here's the letter I re-sent:

Dear Representative,

House Bill 1148 is a public health necessity. We have young students hiding their life-saving medications in backpacks because some schools require medications to be kept locked in the nurse's office. We have students exposed to potentially dangerous allergens because schools are reluctant to engage in dialogue with parents about food allergies. School buses and after-school activities are, at minimum challenging and sometimes not possible, for children with food allergies.

The incidence of food allergies has been growing exponentially in recent years and about seven percent of the student population is affected by food allergies. At present, many schools are managing these students on a case by case basis, and the results are mixed. As a result, families are forced to seek private or home schooling for their food allergic children to keep them safe.

Accommodations for food allergic students can be made easily and effectively in the classrooms and school communities. By law, all children are guaranteed an appropriate and free public education, and students with food allergies are legally entitled to appropriate protections. We just want to have the opportunity to talk with our schools about what is best for all children.

I am asking you to vote yes to HB 1148 on July 1, 2009.

Thank you.

Sincerely,

YOUR NAME AND ADDRESS HERE

Update on Food Allergy Bill in PA

Here's the latest on HB 1148. According to my contact at PA State Representative Thomas Murt's District Office,

"HB 1148 was tabled because several Education Committee members were concerned about the wording on the the bill and it's impact on existing laws. The bill was tabled to allow for further research and clarification. We are working with the Harrisburg legislation unit to resolve the concerns. We may have a vote as soon as July 1."

I just sent a response asking if they needed any help from families who deal with food allergies every day. I believe in the power of the moms and dads who know what kind of help they need when trying to manage their child's food allergies in a school setting.

I'll keep you posted if there are ways we can help.

Avoid Certain Allergy Medications if you Have Food Allergies

I've said it before, I'll shout it again:

If you have a dairy allergy, do not take certain tablets of Zyrtec, Benadryl and Singulair. Do not use the inhaler Advair. All contain dairy.

They're not labelled clearly, but a call to the customer service departments of these drugs confirms that those with a milk allergy should not take these forms of the medications.

Allergists, other doctors and pharmacists I've spoken to were unaware of dairy in these tablets and in the inhaler.

Do not take samples of medications in the doctor's office until you have checked all medication ingredients through a label, company website or contacting the company directly.

Food Safety News

Phyllis Entis, a food safety microbiologist and author of "Food Safety: Old Habits, New Perspectives" and "Food Microbiology - The Laboratory", maintains a very informative blog about food safety. She wrote a thorough discussion about the TollHouse Cookie dough re-call and provides a food recall round-up each week.

Her blog isn't necessarily directed toward food allergies, but it is helpful for anyone who eats food.

Take a look.

Also, check out her discussion about the Food Safety Enhancement Act of 2009. There's even a link if you want to read all 116 pages of the act.

Wouldn't it be wonderful to live in a world where all foods must be labelled with their country of origin and where food manufacturers can't refuse the FDA's request to recall foods. Oh yeah, and how about out-of compliance facilities having to pay for their own recalls and re-inspections rather than the FDA (meaning the government...translation, your money and mine through taxes)?

That's in there too.

House Bill 1148

Even if you don't live in PA, please consider copying and pasting the following e-mail addresses and letter into an e-mail and send it to our PA Reps. There is power in numbers and if all of us band together, no matter where we live, we can make all of our schools safer for those with food allergies.

Just copy, paste and put your name and address at the bottom of the letter. The vote is this Weds. June 24, so please do this today or tomorrow. Thank you.

Send to:
JRoebuck@pahouse.net, ksmith@pahouse.net, LCurry@pahouse.net, JYudicha@pahouse.net, bsmith@pahouse.net, mcarroll@pahouse.net, sconklin@pahouse.net, RGrucela@pahouse.net, pharkins@pahouse.net, mlongietti@pahouse.net, MOBrien@pahouse.net, JPallone@pahouse.net, cwagner@pahouse.net, JWheatle@pahouse.net, RYoungbl@pahouse.net, Pclymer@pahousegop.com, mfleck@pahousegop.com, Dmetcalf@pahousegop.com, dmilne@pahousegop.com, Boneill@pahousegop.com, Tquigley@pahousegop.com, Klrapp@pahousegop.com, MReese@pahousegop.com, trock@pahousegop.com, WTallman@pahousegop.com

Letter:

Dear Representative,

House Bill 1148 is a public health necessity. We have young students hiding their life-saving medications in backpacks because some schools require medications to be kept locked in the nurse's office. We have students exposed to potentially dangerous allergens because schools are reluctant to engage in dialogue with parents about food allergies. School buses and after-school activities are, at minimum challenging and sometimes not possible, for children with food allergies.

The incidence of food allergies has been growing exponentially in recent years and about seven percent of the student population is affected by food allergies. At present, many schools are managing these students on a case by case basis, and the results are mixed. As a result, families are forced to seek private or home schooling for their food allergic children to keep them safe.

Accommodations for food allergic students can be made easily and effectively in the classrooms and school communities. By law, all children are guaranteed an appropriate and free public education, and students with food allergies are legally entitled to appropriate protections. We just want to have the opportunity to talk with our schools about what is best for all children.

I am asking you to vote yes to HB 1148.

Thank you.

Sincerely,

YOUR NAME AND ADDRESS HERE

Rough Recovery

It's been a hard week for my little guy (and the rest of the family) as he recovers from tonsillectomy and adenoidectomy. The doctors are very nice, but quite casual about the whole recovery process.

We wound up going to the emergency room Thursday night. He had been having such a hard time swallowing he needed fluids, morphine for pain and a steroid to shrink the swelling. There was talk of admitting him as he still wasn't swallowing easier after several hours. We decided to go home (for reasons explained below) and we had an okay week-end. Still not out of the woods yet. Dr. said we may need to take him back again for more fluids- ugh!

So we opted not to stay overnight...here's why. When we walked into the ER, we saw signs posted- "If you've been to Mexico, Texas or New York City recently and have flu-like symptoms, alert the staff immediately". At registration we were offered masks. People in the waiting area were wearing masks and several looked very sick with flu-like symptoms.

It looked like a scene in a movie.

Later, when an overnight stay was being discussed, the pediatrician from the floor talked to our ER nurse. The pediatrician advised that we try to take him home as there was "a lot of flu on the pediatric unit". We high-tailed it out of there.

So, we're managing, but still lots of pain, especially in the morning. A popsicle and pain medicine helps that. Then I begin my mantra for the rest of the day, "Drink, swallow, drink, swallow". After I say that about 10,000 times it's time for bed and we begin the whole thing the next morning.

This too shall pass...

Free Pretzels! Really Yummy Pretzels!

Check out this fun contest sponsored by RFAK.com (Raising Food Allergic Kids). RFAK author, Lissa, is celebrating her birthday by giving a gift.

Enter to win a 10 Pretzel Gourmet Sampler Gift Set from Kim and Scott's Gourmet Pretzels.

Good Luck!

Holy Cow Food Allergy News

Tech savvy Saffie Farris is the mother of a child with a severe milk allergy. She created a site that uses RSS feeds to pull articles from online sources and places them in a "custom e-newspaper." In other words, no need to surf for food allergy news, websites and blogs. This site contains it all.

I don't know how she did it, but I love it! Check out the site and sign up for the newsletter. Contact Saffie to add your website and/or blog.

One-stop shopping...it's a beautiful thing!

Update: Food Allergies and Surgery

Today was the big day- surgery to remove tonsils and adenoids. Rather than a hospital, the surgery took place at an outpatient surgical center. I really weighed the pros and cons of doing the surgery in this location instead of a hospital, but after touring the facility, I felt good about this choice. So far so good, as my son is recovering nicely at home.

During the tour, I asked to see ingredient labels for all medications. They were very accommodating. Some I had to check at home on-line as the ingredients weren't available on the container. I also checked out the labels for the popsicles and water ice they offer after the operation. The labels looked fine, but we decided to bring our own.

When we arrived, my son received a special red band with all his food and medication allergies clearly listed.

Even though the nurses and doctors were well aware of his allergies, we still got instructions such as "give him lots of pudding, macaroni and cheese, milkshakes, scrambled eggs"...hmmm...can't serve any of those. I also ran into another gotcha when the surgeon prescribed Zofran, an anti-nausea medication. The tablets contain lactose, a no-no for the milk allergic. He switched it to the orally dissolving tablets which don't contain lactose. I only found this out after a thorough internet search. Don't rely on medical professionals to manage your food allergy.

Well, off to re-fill the water ice cup! Thank you for all of your well-wishes as we faced this procedure.

Another Key to the Food Allergy Puzzle?

A study recently released indicates that black male children have an increased risk of food allergy compared to other groups.

The study involved over 8200 participants ages 1-85. Peanut and shrimp were the most common food allergies and a study of demographics revealed that blacks, males and children, especially black male children, were found to have higher levels of sensitization associated with clinical food allergy.

I don't know what that means, but I don't feel too dumb since the researchers don't either. I just appreciate that studies are being conducted and hope that somewhere there's a big room with notes, scribbles and arrows all over the walls as scientists try to unlock the mysteries of food allergy.

Here's the full report from the Academy of Allergy, Asthma and Immunology.

The Mother of all Food Allergies

Now, I know when you're going through something, it doesn't help much to hear, "if you think you have it bad, listen to this one...".

But if food allergies are getting you down, you gotta listen to this one...

A California teen is allergic to ALL food. Her symptoms of difficulty breathing, weight loss, extreme fatigue and facial swelling, baffled family and doctors alike. As her health continued to deteriorate, an answer was finally found. The teen was diagnosed with Eosinophilic gastrointestinal disorder or EGID. This condition causes eosinophil (one of the body's white blood cells) to treat food as an invader, causing an allergic reaction.

In order to get nutrients into her body, she was given the choice of a stomach pump, or drinking a foul-smelling, foul-tasting liquid. She chose the liquid which had to be ingested several times a day.

After several months, her body has healed enough to begin to re-introduce foods- one at a time. Her father says, "It's like Russian roulette".

I know the trauma we went through with our recent, unsuccessful egg challenge. I can't even imagine going through this process over and over.

Apparently little is known about EGID and there is virtually no funding available for it. According to the teen's father, "This isn't just a food allergy. It's the mother of all food allergies. If you go to any kind of allergy conference nowadays, this is the hot topic. This is what they're all talking about."

Did any of you hear about this at FAAN conferences this year?

So, the next time I grumble about making egg and dairy-free cupcakes for another party, remind me about this story. Sometimes it does make things easier when you think, "Okay, this isn't SO bad".

Check out the full story.

Biking for Food Allergies

I love this story! Bill Arendt (Willie) is pedaling for food allergies. Willie left Los Angeles on May 10 and he plans to bike to Boston- 3415 miles to benefit FAAN (Food Allergy and Anaphylaxis Network). He charts his progress online every night. Make a monetary pledge or just leave a note of encouragement. Check out the full story.

How cool is that????

Food Allergies in the Hospital

We're making plans. Tonsils and adenoids need to come out, and we'll be in the hospital with food allergies. This is something I've thought about, late at night, when all is quiet and I should be sleeping.

What if my son ever had to be hospitalized?
How would we deal with his food allergies in the hospital?

I guess the good news is that we have some time to plan. I can talk to someone in patient dining services at the hospital in advance and find out what they can offer. We can bring in safe foods. With a tonsillectomy, we're probably just looking at juices, popsicles, safe ice cream and jell-o anyway.

Of course then there's all the medication to worry about. What's in it? Are there any inactive ingredients he may be allergic to? I see another sleepless night coming on...

Any experience in this?

School Carnivals, Picnics and Parties, Oh My!

The school carnival is this week. I'm in charge of food this year, because I figured if I organized it, I'd be in the know. Yeah, not so fast. "We must have popcorn", I was told because the smell of the popcorn popping is "so carnival-like". Okay, I rented the machine and got the popcorn. Does artificial butter flavor contain any dairy? "No" says the popcorn company representative. Of course I have no way of knowing what else has been put in the rented machine and no idea how well it's been cleaned. Confidence level on a scale of 1-10 with 10 being totally confident?- a 2. I'll bring safe popcorn.

We're also serving water ice which is basically sugar, high fructose corn syrup and dyes. Our school has started distributing, via e-mail, ingredient lists of foods served to students at these special events. Interesting responses. Some parents who don't need to look at food labels on a regular basis are surprised about what's in some of these foods (ie: long chemical names, high fructose corn syrup, etc.) One mother of a diabetic son asked if carbohydrate and sugar content could be included in the lists going to parents.

I think our school needs to develop a form that captures all food concerns that families have. That information then goes out to all families so they can plan appropriately.

How do your schools handle this? Is it working?