Grandparent's Allergy Information Pack

I admit that planning a vacation was exciting until I thought about having to accommodate my daughters food allergy. We had to consider safe stops along the way, but we are going to spend most of our time visiting my grandmother at her home. It only made sense to send her a little more information about our daughters food allergy.

I decided to make a "Grandparent's Allergy Information Pack," and had it arrive a few weeks before we did.

Included in the pack was a pamphlet on general food allergies, it included signs and symptoms to look out for, what to do in an emergency and steps on avoidance. All of this information can also be found on the Kids with Food Allergies website, What Parents Need to Know 2 page handout. Also from Kids with Food Allergies, I sent a copy of the Babysitting Drop-off Form, babysitters/caregivers drop-off form. It is a one sided form that can be posted on the fridge, the bottom half can be filled out for an individual child. I also included a photo of how and where to administer the Epi-Pen. Epi-pen.com has a lot of information and training videos, and so does Auvi-Q, but I simply wanted the picture and steps.

I had also wanted to include some information on how to properly read food labels for her specific allergen. I was a little surprised when my best source turned out to be the USDA. They have handouts specific to all food allergens and they are wonderful for teaching how to read food labels for a specific allergen. They call them Food Allergy Fact Sheets. You can find your specific allergen with a straight web search. This is the Peanut One, USDA Peanut Food Allergy Fact Sheet.

After putting this packet of information together I sat down a wrote my Grandmother a letter. I wanted her to understand that we did not expect her to remove all peanut products from her home, but for the time that we were there could she please put them up out of reach, we suggested above counter height for safety. I asked her to please not feel overwhelmed by the information provided and if she had any questions or concerns to please call me and I could walk her through it. I relayed to her that we simply wanted her to have an understanding of what special needs our daughter required to be able to stay with us at her home. I told her how much we have been looking forward to this trip and how we just couldn't wait to see her. I know she had been dying to squeeze a grand-baby for a while.

I waited until a few days after the package had arrived to call and see how things were. When I asked about the package she informed me that not only had she received it but had read it all. She said that it was very helpful and that she learned so many things that she would never even have thought of about having a food allergy. She told me that when we came our daughter would not find anything in her home. And to put the icing on the cake she asked me to e-mail a list of our daughters favorite safe snacks for her to have on hand when we arrived. I knew there was a very good reason I love this woman so much. Then she informed me that because I had sent extra pamphlet's she intended to pass them out to anyone who would be coming over to her house and letting them know that they can not being our daughters allergen into her home.


* If you live near to you parents/grandparents and they help to watch your child I recommend that they have a safe snack box at the grandparents, that is just for them.

Food Allergy Awarness Booth

Our local town fair was this past weekend and hosted a Food Allergy Awareness Booth. I handed out pamphlets, pencils and ribbings. I discussed the Big 8 Food Allergens, signs and symptoms of anaphylaxis, and what to do in an emergency. I demonstrated how to administer an Epi-Pin to someone in need and to call 911 for follow-up medical attention. I even had a label reading challenge.

The younger children were some of my most receptive. I explained to them that if you or a friend has a food allergy and ate something you were allergic to, you could get itchy, have itchy bumps on your skin, your could start swelling and have problems breathing, and that it could be very scary. But to remember if you see this happen to someone you need to get them help and their Epi-Pen. I would show them how to give the Epi and count, then they would have to call 911. I would have them count with me and then I would ask them what do we do next and they would yell, "Call 911." Several of them brought there parents back because they wanted to show them how to use the Epi-Pens.

There were a hand full of people that came through and told me about their own food allergies or food sensitivities. I even had one gentleman show me his own Epi-Pen he had in his pocket. Several people expressed to me that they had never heard of Food Allergies when they were younger, and didn't know why the kids were getting them now.

I even spoke with the local PTA about wanting to host a booth at there Open House. They informed me that they would be happy to have me and I would go right along with the Fireman and nurses that come in. After finding out that local community members could join the PTA without having a child in school yet, I decided to join.

However, I can not say that the whole weekend was all tea and roses. You get those few who look at your booth and just keep on walking and the ones who say I don't have food allergies and walk away. I had one young man ask me what do I need to know about food allergies I don't have any. When I asked him if he knew anyone with a food allergy he said his best friend. I asked him didn't he want to know how to save his friends life in an emergency? He said yes, and I showed him how to use the Epi-Pen, I later learned his Mother was allergic to Bees.

I had a group of high school ages girls walk by one evening and one of the girls stopped short of the rest right in front of my Food Allergen Challenge. I thought it would be a fun way to get people to read labels. I quickly realized that she was sounding it out, "Al-er gen" she said. She turned to her friends and asked what's an allergen, they both replied that they didn't know. I said an Allergen would be something that you are allergic to. Then she asked, "Well how do you find them?" I pointed to the brown label, "Lets say you are allergic to Soy, do you see the soy on the box?" "Yes", she replied. "Then you would be able to eat this if you were allergic to soy," I explained. "OH!" she said with a flush of understand. She thanked me and went on her way. At first I was surprised that she and her friends were not familiar with the word Allergen, however the more I though of it, I was proud of her for trying to figure out what it was.

I asked a number of the grade school aged kids if they had learned anything about food allergies in school, they all gave me a blank look and shrugged their shoulders. I'm guessing this is why the PTA was so keen to have me. I don't believe anyone was familiar enough with the subject to educate. I spoke with several teachers as well as community members about the current state laws in Illinois.

Overall I'm calling the weekend a success. I got the message out there and I will continue to do so. It just goes to show that a little education and understanding can go a long way.

Food Allergies vs. Food Sensitivity

When we were first diagnosed with a food allergy for peanuts I had not realized that there were different levels of allergic, and some allergies were classified as sensitivities vs. an allergy.

A Food Allergy is defined as an exaggerated immune response triggered by eggs, peanuts, milk, or some other specific food. While a Food Sensitivity or Intolerance is defined as an unpleasant reaction to food that, unlike a food allergy, does not involve an immune system response or the release of histamine. Many food intolerances are caused by deficiencies or reactions in the digestive tract. Lactose intolerance (caused by an enzyme deficiency) and celiac disease (an autoimmune disorder characterized by the inability to digest wheat, rye, and barley) are among the most common food intolerances.

So how do we know the difference between a food allergy and a food sensitivity reaction?

Food Allergies vs. Food Sensitivities

Food allergic reactions come on suddenly usually within the first two hours of exposure. They can be triggered by a small amount of the allergen and happen every time the allergen is consumed or exposed. Food allergies can be life threatening leading to anaphylaxis.

Food sensitive reactions usually come on gradually up to 72 hours after consuming the food item. They may be triggered by consuming a large quantity of the food item, or consuming it often in a short amount of time. Food sensitive reactions are not considered life threatening because they do not lead to anaphylaxis.

Shared Symptoms vs. Different Symptoms

Food allergic reactions and food sensitive reactions share some of the same symptoms. Both reactions can result in nausea, stomach pain, diarrhea, and vomiting.

Food allergic reactions also can result in rashes, hives, itching skin, swelling, shortness of breath, chest pains, sudden drop in blood pressure, and trouble swallowing and/or breathing.

Food sensitive reactions can also result in gas, cramping, bloating, heartburn, headaches, joint pain, IRB, weight gain, low mood, eczema, irritability or nervousness.

Symptom Causing Allergens

Some of the main causes for food allergic reactions include peanuts, tree nuts, fish, shellfish, milk and eggs.

Some of the main causes for food sensitive reactions include milk, soy, egg, wheat, fruit and vegetables.

Treatment

While food allergies and food sensitivities are treated with the same method of avoidance. Food allergies are considered lifelong and persistent, while food sensitivities are considered to clear up after avoidance.

Wither you have a food allergy or a food sensitivity you are limited in what you can eat, or how much you can eat of a certain food. We should all be listening to our bodies, believe me they talk back.

Since food allergies are usually easy to distinguish, and sensitivities can be harder to prove, I recommend keeping a food journal. You don't have to do anything fancy, just get a note book from the school section and keep track of what you ate, how much and if you have any of the symptoms listed above. If you start to notice patterns such as every time you have a bowl of cereal with milk your stomach feels bloated and cramping, you may want to skip the milk for a while are test nondairy products on you morning cereal. Or if you have eaten a large bowl of soup with noodles everyday for  lunch and are feeling the stresses of IRB, you may want to try a different lunch for a while.

Keeping a food journal is also a great way to show your doctor that you are having difficulties, and they may see a pattern that you didn't. Remember that food allergies and sensitivities can be managed but only if they are recognized.

Where Do Food Allergies Come From?

We all know that since the late 90's food allergies have been on the rise. At the current time it is believed that 1 in 13 kids has a food allergy, and new research is suggesting it could be 1 in 12.

So why are so many children developing food allergies? The answer to that question depends on who you ask.

In my research of this topic I have found a number of suggested theories' for why food allergies are on the rise, none of which answers the question completely, however see what you think.

The Grandparent Theory

I call this first one the Grandparent Theory because people often refer back and ask why did our grandparents not have food allergies. This theory states that because our grandparents ate locally grown foods that were seasonal, they cook these foods at home with traditional methods, not using preservatives, and they did not diet, and spent the majority of their time out doors. That our grandparents had a healthier lifestyle that we do.

Genetics

It has been suggested that food allergies come from our jeans. There has not been one jean found to be the root cause of food allergies but rather they believe that it is a combination of factors of jeans coming together and expressing themselves as an allergy. Sciencemag.org states that a new study shows that increased T cell counts lead to over reactive immune systems. Children born to parents with any allergy have a 2x more likely to have allergy, and children born by C-section are 3x more likely. They also suggest that children born by C-section do not develop the proper bacteria, Dr. Christine Johnson.

Food Theory

I'm calling this the food theory because there are so many suggestions about food, we're just putting them all together. GMO's, processed foods, pesticides, antibiotics, and chem-trails. It seems these are the ingredients for conspiracy. Depending on who you ask the government is poisoning us to effect population control, or they want to make us fat and dumb, or everyone of these things is perfectly safe and misunderstood by the general public. You please decide.

The Water Theory

According to Elina Jerschow M.D. "Annals of Allergy & Asthma Immunology" Tap water should be our biggest concern. Increased levels of Dichlorophenols used to chlorinate water and pesticides are associated with food allergies. Allergies are on the rise in countries with rising sanitation standards, and are low in poor countries. In the 60's and 70's the rise in food allergies was thought to be due the A-bomb, that was later dismissed, because that would have shown global increases, and food allergies are localized events.

So there they are Food Allergy Theories. I know as parents of food allergic children we want to know where allergies come from but, at this time there is not good answer and the best thing for us to do is to take care of our children the best ways we can. If you want to go to the farmers market and eat local good for you. We personally keep a garden, I like my daughter knowing how to eat fresh vegies, we bake most everything ourselves because of her allergy. do what's best for you and your family and maybe the scientist will figure it out later.

Oral Immunotherapy. What is it, and does it work?

All of us allergy parents know that the standard treatment for food allergies is strict avoidance and epinephrine when exposed. However, the news media and online web sites are starting to promote a "CURE" for food allergies in the form of Oral Immunotherapy(OIT).

So what is Oral Immunotherapy?

In this context Oral Immunotherapy refers to (also termed desensitization or hypo-sensitization) a medical treatment aimed at patients suffering from allergies that are insufficiently controlled by symptomatic treatments.
This involves administering increasing doses of allergens to accustom the body to substances that are generally harmless (peanuts, egg, milk) and thereby induce specific long-term tolerance.

Let me state right now that Oral Immunotherapy is experimental and should never be preformed without medical supervision. Although these kinds of treatments are experimental, not approved by the FDA, and have shown little in the area of results parent's are lining up to have there children in trials.

All of my research on this subject continued to look back at one study from the UK published in The Lancet (a medical journal) in January of 2014. So I went straight to the horses mouth and printed out the full published journal article. To view full journal article.

The Test

The study was preformed in the UK (University of Cambridge and Cambridge University Hospital) between January 2010 and March of 2013. Participants were age 7-16 with immediate hypersensitivity reactions after peanut ingestion and tested positive to skin prick test for peanuts. Participants were given peanut flour in gradually increasing doses, in 2 to 3 week intervals. Doses ranged from 2mg to 800mg of peanut protein. After each new dosing participants were observed for 2 hours, then doses were given at home for 2 to 3 weeks. Participants were also asked to keep a symptom diary.

Results

At the end of phase 1, 26 weeks(6 months) 24 of the 39 children in the active group were considered to have developed a tolerance to the equilivant of 5 peanuts. This was reported as 62%, while none of the 46 children in the control group had any tolerance to peanuts.
At the end of Phase 2(combination of phase 1 and control group offered OIT) 45 of the 84 children sampled were found to have developed a tolerance to the equilivant of between 5 and 10 peanuts. This was reported as 54%.

Side Effects

31 participants reported nausea and vomiting, 1 reported diarrhea, 21 reported wheezing, and 76 reactions of oral pruritus (itching of mouth, tong, or lips). One patient required the use of intramuscular adrenaline (Epi-Pen).

Follow-up

Tolerance after cessation of OIT was not assessed in this study so there is no way to know if participants maintained any tolerance over time.

So What does all this Mean?

Okay, when I was taking my science courses a sample size this small was not considered statistically significant. And the thought of mixing your control group with you active group data to develop a larger sample size in phase 2 was a down right cheating.

The study itself admits shortcoming with this type of treatment. Patients who had stopped treatment in past studies had shown to loose their tolerance after about 9 months. They had many more reactions then with avoidance, and there was no follow-up. However they still promote this as a success. Even WebMD promotes this article as a "New Hope for Kids with Peanut Allergies".

I remind you to be smart and skeptical of claims of fast and easy cures for food allergies. And if it sounds too good to be true, it probably is.

August is Advocacy Month

FARE, Food Allergy Research & Education, has suggested in their news letter that the month of August be Advocacy Month.

Since congress typically takes the month off they are recommending gathering together a group of fellow parents and set up a meeting with your representative to let them know about your concerns regarding food allergies.

I recommended it you can't get a group together, draft a letter to your representatives. Or try something more small scale. Start with local awareness, with your city, county, or state. Or simply sign an online petition regarding food allergies. Every little bit can help.

Host an informational booth at local events, fairs, or school career days. And with back to school looming on the horizon, now is the time to make sure that you, your child, and your school are ready to for the coming year.

Good Luck, and Get Out There.

Staff can give Epi-Pen in IL

On Wednesday July 30 Governor Pat Quinn signed a new law (Bill HB5892) that makes it legal for a school official who is not a nurse to administer drugs to quell an allergic episode. This means Epi-Pens.

Just like Attorney General Lisa Madigan, we do not have a full-time nurse at our local school. This is part of the reason that she has chosen to work on expanding this law.

This new law adds to the previous law signed by Governor Quinn in August of 2011, House Bill 3294, the School Access to Emergency Epinephrine Act, allowing school to stock and use epi-pens in the case of life-threatening allergic reactions. This past law only allowed the school nurse to administer medications. However, with shrinking budgets and the sharing of staff members between multiple schools, having a full-time school nurse has not always been manageable.

The new law allows a trained individual to administer epi-pens, the Illinois State Board of Education officials will draft rules on the training.