Tuesday, December 24, 2013

Allergies, Asthma, and Getting Ready for School, or: We are Always Late



Rush, rush, rush!  

If you are disorganized like me, then you too probably run a bit late in the morning. Add on a must take list of medications for allergies and asthma, and it is a recipe for chronic scurrying, and tardiness.

Many a time while trying to feed my kids, get them dressed, and out the door on time, I forget my daughter's medications until we are walking out the door. I know that inhalers can not be rushed, the breathing needs to be done right, a good rinsing needs to happen afterword, and if needed, a nebulizer breathing treatment takes a good 20 minutes. This is not something that should be left until the last minute as we are scrambling to be on time for school. Plus this is not something that can be overlooked, even for one day. The worst call is one from the nurse's office asking you to please bring in the daily antihistamine, or inhaler that was forgotten before school as your child is itching and sneezing like crazy, or coughing non stop.

Just the other day, both kids were fed, dressed, hats and coats ready to go on, and my son decided that he was not happy with his outfit for the day, and "re-dressed" himself.  As I was rushing through my daughter's medications, pill, pill, inhaler, inhaler, nasal spray, etc. I turned to see his hamper running across the floor, with his two bare legs going as fast as they could go. "Mommy! I get dressed all by myself!" he squealed with glee as he ran in circles around the living room. I swear I have a sense of humor, but at the time, it was NOT funny.

I scrambled to finish my daughter's medications, caught the little stinker, and threw some clothes on him, just in time, to be 5 minutes late. On the way home I thought about how if I had not left my daughter's medications to the last minute (again), I could have laughed and enjoyed the moment, but as we were pushing the tardy cut off as it was, with yet another inhaler to give, I was not amused. Not even one bit.

So, I am going to make a change. New Years resolution: Medications first thing in the morning, and no more rushing around like a headless turkey right before we walk out the door for school.

Wednesday, November 20, 2013

The Non Food Allergic Sibling




But Mo-om, I'm Allerbic to gween beans!

 

My son is now three, the age that we have been told that it is OK to try out our daughter's most severe allergens with him. Our plan is to feed him peanuts and tree-nuts outside of our home (as our daughter is severely allergic)  in a setting close to the ER, or at the allergist's office. While I am waiting to get the courage up to test out the peanuts, and tree-nuts with my youngest child, I am learning that the younger siblings of children with severe food allergies quickly learn to make the most of their sibling's allergies.

Recently my three year old son has been using his sister's allergies to his advantage. The other day he grabbed a whole bag of cookies off of the counter, put a serious look on his face, and announced "I eat all cookies for my Sissy, she's allerbic to cookies!", "Don't be sad Mommy, I keep her safe!" I was floored! I had no idea that at the age of three, he would be capable of using his sister's allergies to his advantage. It hit me that I need to get ahead of this fast! But what to do? How do I educate him about his sister's food allergies without scaring him. How do I help him understand that they are not to be trivialized, or be used to ones advantage. How can teach him about the importance of including everyone in family treats?

In another example of how he has used his sister's allergies to his advantage, he announced at dinner that he was not going to eat his green beans, as he was allergic to them. After pushing them around his plate for some time, he was coaxed into trying one, which he promptly spat out, and whined "But Mo-om, I'm allerbic to gween beans!"  This is not a new adventure for me trying to figure out if a complaint about a food is a real allergic reaction, or just a dislike of the food's flavor, or a texture issue, but it is new in that he is not really concerned that he may be allergic, as my daughter was, he just doesn't want to eat his green beans!

Figuring out how to explain allergies, their seriousness, and the difference between not wanting to eat something, and being allergic to it can be trying. How do I explain to a three year old that something may make your mouth feel hot, or "spicy", and while that is uncomfortable, it is not necessarily an allergic reaction?  How can I make sure he understands the seriousness of a real allergy vs. a preference in taste/foods without worrying him?  A food may taste bad to you, make your tongue burn, have a funny texture, make you gag, or seem to get stuck in your throat, but that does not necessarily mean you are allergic to it. This seems simple to do, but seeing his sister with hives on her face from a previously loved food, and a worried watchful mom hovering at mealtimes must be a bit confusing to a three year old. But he is sure making the most of it!

If you have any tips, please share!!!



Wednesday, October 16, 2013

Reads You Need for Allergies and Asthma!

My Favorite Books for Parents, Caregivers and Schools:

 
Reading will ease your fears and lessen your anxiety, and help you navigate the world of allergies.


Many parents of food allergic kids have little time for reading. At a recent meeting for my local food allergy support group I was surprised to find that most of the parents had never read a book on food allergies.  Many parents cited lack of time, and also the fear that a book may make the worry and anxiety that surround dealing with food allergies worse. I realized that I too had not picked up a book on food allergies until a few years ago. I had gone for years without ever reading in depth about the food allergies and asthma that I was dealing with on a daily basis as I too thought that I did not have the time, and worried that it may increase my fear surrounding my child's  allergies and asthma.

After reading my first book on food allergies, and asthma, my fear decreased, and I found that I was much more confident in dealing with my child's food allergies and asthma both at home, and with her school. I was able to make small changes to keep her healthier, and safer both at home, and at school. It also allowed me to better understand, and discuss treatments with my daughter's allergist, and pediatrician.
You may also have questions and fears such as:
Will the smell of a food that my child is allergic to cause an allergic reaction?
What is an airborne food allergic reaction?
What accommodations are necessary to keep my child safe at school?
What testing does my child need for asthma and allergies?
What medications for asthma and food allergies should I ask my child's doctor about?

The books I have listed will help dispel your food allergy fears, and give you confidence in dealing with your child's food allergies, and asthma! I have read all of them, and each is fantastic!




  "Understanding and Managing Your Child's Food Allergies"  by allergy expert Scott H. Sicherer. Gives great examples of many types of food allergies, and is a comprehensive guide for a parent, or caregiver dealing with multiple food allergies. Easy to understand, yet detailed. Learn about the different types of testing available, signs and symptoms of food allergies, and read about other families' experiences in figuring out just what their child is reacting to.







 "Food Allergies: A Complete Guide for Eating When Your Life Depends on It"  
The newest book by Scott H. Sicherer. He is a pediatric food allergy specialist. His books are very comprehensive. They will help you to understand food allergies, the different types of food allergy testing, what kinds of food allergy reactions your child may have, when to worry, and what you do not need to worry about, and more.





"Asthma Allergies Children: A Parent's Guide"
by Dr Paul Ehrlich, and Dr Larry Chiaramonte (pediatric food allergy specialists) and Henry Ehlrich (a great advocate for kids with food allergies. He is on the front lines of the newest research on treatments for food allergy and asthma) 
When your child is at a higher risk for severe reactions due to having both asthma, and allergies, you need this book! It will help you navigate and understand both at the same time.
They also have an awesome website: Asthma Allergies Children: A Parent's (web) Guide:
http://www.asthmaallergieschildren.com/ 






"Food Allergies for Dummies"  by Dr. Robert Wood (pediatric food allergy specialist) Lots of great information, and easy to understand!




"Asthma For Dummies" by  William E. Berger, MD. Easy to understand, great for reducing anxiety, and figuring out the best way to treat your child's asthma.  It covers allergy shots, types of medications, explaining the different types of asthma and avoiding asthma triggers.

For Caregivers and Schools:


"The Peanut Allergy Answer Book" - Great information on peanut allergies for parents and schools alike! Use this book to help create food allergy awareness and safety in your school and at home.





 "The Food Allergy Book: What School Employees Need to Know"
It can be found at the NEA Health Information Network http://www.neahin.org/educator-resources/foodallergybook.html . The counselor said that the teachers love this book, and often say, "Well the purple book says..."







 Food Allergies & Grandchildren: Pocket Guide for Grandparents by Julie Trone            
Great short guide for Grandparents and caregivers!







Monday, September 30, 2013

504 Plan for Food Allergies: Crafting Your Food Allergy Worries Into a Plan

Turning Your Food Allergy Worries Into a Helpful Plan

504 Plan Food allergies School

Disclaimer: I am not a legal professional, this is intended to be informational only, and not as legal advice. Any information given is solely intended for informational purposes, and is based only on my experiences in obtaining a 504 plan for my child.  Please seek legal council for advice if needed. 

Preparing for a highly allergic child to start school is similar in many ways to preparing for a non food allergic child allergic to begin their schooling. You want the best for them in every way. You hope that they have a great teacher, and maybe worry that the teacher's style will be too strict, or too lenient. You may worry about them making friends, and hope that they are accepted and liked by their peers. Will they have friends to eat lunch with in the massive ocean of noise that is the cafeteria? Will they have a buddy at recess to share laughter, and play with?  Will they pay attention in class, and thrive academically? 

On top of the usual worries, a parent of a food allergic child may also worry about a few more things:

Bus: 
Can my child ride the school bus?
Will the bus driver allow food to be eaten on the bus?
Has he/she been trained to recognize signs of anaphylaxis and administer the Auvi-Q or Epipen if needed?
Is my child allowed to have their Epipen on the school bus?  
Do they need to ride a special bus, or have an aide ride with them?
Breakfast/Before School Care: 
Do they serve breakfast at school? If so, do they serve my child's allergen?
Do they wash hands after breakfast?
Who supervises the early morning crowd?
Is there a nurse available in case of an allergic reaction?
Classroom:
Will my child be included in all of the classroom lessons, games, incentives, birthday parties, and treats? 
Will the class holiday party be safe and inclusive?
Will my child remember not to eat any treats that are not from her safe treat box?
Will the teacher help remind her, and at the same time help her to feel included?
Will her classmates ridicule her for her differences, or be accepting of them? What books can be read, or materials used to teach classmates about food allergies?
Is my child ready to self carry her Epipen, or Auvi-Q and inhaler?
Will an Epipen or Auvi-Q be kept in the classroom as well as the nurses office?
Are food free birthday treats an option? 
Lunch: 
Can my child eat the school lunch?
Will my child have a safe place to eat?  
Can she sit at the regular lunch table?
Should they sit at an allergen free table? A cleaned dedicated spot at the regular table?
Who will make sure that the dairy, fish, peanut, tree-nut, etc. residue is cleaned off of their eating area before they sit? Will a dedicated bucket, or disposable wipes be used? 
If my child needs accommodations, will they want to sit with my child at the allergen free table, or next to them at their dedicated cleaned spot at the regular table?
If needed, will a friend be willing or able to forgo the dairy/peanut/fish/etc. to be able to sit with my child?
Will her classmates be able to wash their hands after lunch?
After School Care and School Sponsored Activities:
Will my child be able to participate?
How will they navigate the issues surrounding sports, clubs and games?
Fieldtrips:
Will there be food eaten on the bus? 
Will hand washing be available? 
Who will provide the lunch? 
In the event that my child has a reaction, who will be trained to use the Epipen, or Auvi-Q and inhaler, and call 911?
Are parents allowed to chaperon?
Overall:
How allergy aware is the school? What materials/programs can the school use to become educated about food allergies, and anaphylaxis? 

All of these worries can stack up quickly. What can a parent do?

You have a couple of options: An Individualized Health Care Plan (IHCP), or a 504 Plan. We chose to put a 504 Plan in place as we felt the most comfortable with this option, and felt that it was needed.  An Emergency Action Plan is included in both the Health Care Plan, and the 504 Plan. 

While an Individualized Health Care Plan may work well for many children, because of the severity of my daughter's food allergies, I felt that the 504 plan was the best option in our situation. The 504 plan has created a firm network of support for our daughter. I am glad that we did as it brought a team together to make sure that everyone knew what was needed to keep our daughter safe at school, and to literally, and figuratively get us all on the same page. All of our questions were answered, and we were able to make a necessary list of accommodations. As a part of the 504 Plan, we were also able to have the school district educate it's employees on food allergies and anaphylaxis. 

As a former teacher, I have found that without clear guidelines, and accommodations in place, the lines of communication between the school and parents can get crossed, rumors can run wild, and emotions high

 

What is a 504 Plan?

In a school setting, it is a list of accommodations, and services that your child needs to allow them to fully participate, and be included in school.  The 504 Plan's name comes from Section 504 of the Rehabilitation ActA 504 plan protects the rights of people with disabilities

You may be thinking "Wait! My child is not disabled!". Well, while you may not want to think of your child as having a disability, it is important to know that a life threatening food allergy is considered a disability. While this may get some getting used to, it is really important to understand as it means that your child is protected under the Americans with Disabilities Act (ADA), and section 504 of the Rehabilitation Act.

What if my child goes to a private school?  According to the Food Allergy Research, and Education (FARE) organization, the Americans with Disabilities Act (ADA) extends these protections provided by 504 to private schools and private child care centers even if they do not receive money from the federal government.  Here is a great link explaining the 504 and how it relates to your food allergic child from FARE at  http://www.foodallergy.org/advocacy/disability 

Our 504 Team: 

We met with the school's 
principal 
nurse 
counselor 
classroom teachers (Art, Music, PE signed it as well) 
cafeteria monitor 
food service director 


 

Be prepared: 

You may need: 
A copy of your child's food allergy medical records
A  signed Emergency Action Plan from the Allergist 
A written history of past reactions. 
A physician's assessment that the food allergies may result in severe, life threatening (anaphylactic) reactions
A physicians note that meal substitutions are necessary (if you can't, or do not want to pack a lunch daily) 
I printed off an example of a food allergy 504 plan that I found online that I filled out based on my daughter's medical history/needs. But the school may already have a preferred 504 template. 

What the meeting was like: 
I was nervous, but it went very well. We went through it point by point, and discussed each accommodation at length. It was the first 504 plan that the School District had ever had for food allergies. 

Everyone now knows what is needed to keep my child safe, and have a written plan of what is expected of them, and what is expected of my daughter to keep herself safe. This plan will stay with your child from school to school, and will remain in place even with a change of classroom teacher, principal, nurse etc.


 

Plan early, it may take a while to get the plan rolling, but also know it is never too late:


It took months to get an initial 504 meeting as I had to push for it being the first of its kind in the school district. Thankfully we were able to sit down with the team before the start of the school year. If we had wanted to see how it went with a just an Emergency Action Plan, or Health Plan, we could have added the 504 Plan later. It is never to late in the year to request a 504 plan. If you feel it is right for your child, send an email, or call your principal, and your 504 coordinator (sometimes a principal) or "equity coordinator" for your school district, to get the ball rolling. 

I am very happy that we went with a 504 Plan! The school found it helpful as well, and they are now offered to all food allergic children at registration! 


We were able to discuss my daughter's health history, the accommodations needed to keep her included and safe in the classroom, bus, field trips, cafeteria, and birthday, and holiday celebrations, etc. I feel that it is great to have it all written out and discussed in a 504 plan as it helps to prevent misunderstandings. I also feel that it alleviates anxiety for both the school, and the parents. In caring for kids with food allergies emotions can rise, and misunderstandings can easily occur as food is such an integral part of our social gatherings. Class parties, birthday parties, food incentives for reading etc. are a major focal point in school, and having a plan to navigate these events is essential. 

If you hear as I did, "Oh we don't do those 504's here.". Or if your school refuses to put a 504 plan in place, you are entitled to an impartial hearing officer, and you may then review their decision according to the school's impartial hearing procedure. You also have the right, if needed, to file a complaint with the United States Department of Education's Office for Civil Rights (OCR)



 My favorite resources and articles in writing a 504 plan, or Health Plan: 


For a 504 PlanAllergicChild.com:

For a 504 PlanFARE:
http://blog.foodallergy.org/2013/08/19/what-every-parent-needs-to-know-about-section-504-plans/
and
http://www.foodallergy.org/advocacy/section-504-plans/

For an Individualized Health Care Plan:  ProtectAllergicKids.org: 
http://www.protectallergickids.org/DrWood.html

For both a 504 Plan, and Individualized Health Care Plan: KidsWithFoodAllergies.org:
http://www.kidswithfoodallergies.org/resourcespre.php?id=137

For a 504 Plan:  OneSpot Allergy Blog:
http://blog.onespotallergy.com/2012/09/sample-504-plan-free-to-click-and-print/

About filing an OCR complaint:
http://blog.onespotallergy.com/2012/08/filing-an-ocr-complaint-exercise-your-rights-or-lose-them/

For a 504 Plan: Here is a link to the US Department of Education's Office of Civil Rights (OCR ) explanation of how it pertains to daycare:
http://www2.ed.gov/about/offices/list/ocr/docs/hq5269.html
 Excerpt: "A recipient that operates a preschool education or day care program, or an adult education program may not exclude qualified handicapped persons and must take into account their needs of qualified handicapped persons in determining the aid, benefits, or services to be provided under those programs and activities."

For both a 504 Plan, and an Individualized Health Care Plan:
A great 504 Plan and IHCP: With example plans! From Kidswithfoodallergies.org: http://community.kidswithfoodallergies.org/blog/school-health-care-plans-for-your-child-with-food-allergies

For both a 504 Plan, and an Individualized Health Care Plan:
Asthma Allergies Children: A Parent's (web) Guide found at
http://www.asthmaallergieschildren.com/ 
A great article from the website written by a former elementary school nurse for keeping your food allergic child safe at school: 
food-allergies-elementary-school-tips-for-parents-from-a-couple-of-veterans
They also have a fantastic book "Allergies Asthma Children: a parent's guide" by Dr. Paul Ehrlich, Dr. Larry Chiaramonte, and Henry Ehrlich.

For an Individualized Health Plan: From the  National Association of School Nurses
http://www.nasn.org/PolicyAdvocacy/PositionPapersandReports/NASNPositionStatementsFullView/tabid/462/ArticleId/32/Individualized-Healthcare-Plans-The-Role-of-the-School-Nurse-Revised-June-2013
 
For a 504 Plan Q&A Great info!  A Parent & Educator Guide to Free Appropriate Public Education (under Section 504 of the Rehabilitation Act of 1973)
  


My Favorite Resources for educating your School, about Food Allergies:



For my school district, there was a lack of awareness, and training for food allergy safety. I do have it in our 504 plan that all teachers and would be trained on anaphylaxis and food allergies. You can also request this as part of a Health Plan. The school took it even further and trained the bus drivers (they do not use an outside bus company), custodians, principals, nurses etc.! They had a training/awareness seminar given by a school nurse for the district.

At the seminar, they were all given a book called "The Food Allergy Book: What School Employees Need to Know"

the-food-allergy-book-cover-english
It can be found at the NEA Health Information Network http://www.neahin.org/educator-resources/foodallergybook.html . The counselor said that the teachers love this book, and often say, "Well the purple book says..."

Also they used a great anaphylaxis training module. Here is a commonly used one from the National Association of School Nurses:   https://etraining.allergy.org.au/  found at: http://www.nasn.org/ToolsResources/FoodAllergyandAnaphylaxis 
Another great online e-training is: http://www.epipentraining.com/ .

The National Association of School Nurses website has a great list of resources, handouts for school staff, nurses, checklists, Epipen training tools etc. Check them out!

Another of my favorite resources is KidswithFoodAllergies.org it can be found at:
http://kidswithfoodallergies.org/  It has many great articles and webinars on what schools need to know to prepare for a food allergic student, and what we need to know as parents of kids with food allergies. A great one is: http://community.kidswithfoodallergies.org/clip/partnering-with-your-school-nurse-for-a-safe-school-year 

From the National School Board Association: "Safe at School, and Ready to Learn"
http://www.nsba.org/foodallergyguide.pdf

From the Massachusetts Department of Education came the best school allergy action plan that the new IL state guidelines are based off of, and many others as well, titled: "Managing Life Threatening Food Allergies in School":
http://www.doe.mass.edu/cnp/allergy.pdf

From our experience:
It was a tough sell, but after some convincing, our school district came around, and now we have great, district wide, food allergy guidelines, and training. We even have decals stating that the district is "Food Allergy Aware"!

Just a side note: During the training, a nurse from a different school in the district said that many of the school staff  members balked at having to give a shot of epinephrine using an Epipen. When they saw the Auvi-Q, hands down, it was the preferred one because it talked them through it. They said "Oh, well that seems doable, much less scary!" Makes me want to make the switch from our Epipens to Auvi-Q.





Tuesday, September 17, 2013

October 15th is Global Hand Washing Day!


Did you know that October 15th is Global Hand Washing Day? No? Well, neither did I, but now that I know, I will be celebrating it!



Celebrate Global Handwashing Day to promote handwashing with soap throughout the world.

For kids with food allergies, hand washing is a lifesaver, literally!


It keeps them safe from accidental exposure and ingestion of their allergen. In school, hand washing is key as it allows them to be included in their classrooms. This is especially important for the pre-k through 6th crowd. Have you ever watched a 5 year olds hands for 5 minutes? How many times did they wiggle a tooth, pick their nose, touch their face, or rub their eyes? I have read many places that on average an adult will touch their face 2-4 times a minute. Being less self aware, and less self conscious, a child will not only touch his or her face, but also, pick their nose, wiggle their loose teeth, and rub their eyes. Sometimes they do all three at once! When it comes to food allergies, clean hands prevent exposure, and save lives.

Hand washing takes time! Can alcohol based hand sanitizers work instead?

Unfortunately, no, they can not. Hand sanitizers work great for germs, and bacteria, but they do not get rid of food proteins. All hand sanitizers do for food proteins is rub them around.

There was a study published in the Journal of Allergy, and Clinical Immunology that showed that peanut protein is hardy, and can stay on your hands for three hours or more without hand washing. In an earlier study it was shown that peanut protein can  stay on a hard surface seemingly indefinitely if not properly cleaned up. Without hand washing, even if the food is not eaten in the classroom, it can be brought into the classroom three hours or more after it was eaten. Read the studies here: www.jacionline.org

Many parents of kids with food allergies look for ways to help their child's school create, and maintain an inclusive, and safe environment. Who knew that something as simple and healthy as hand washing could be the answer? Good old fashioned hand washing is key! Many organizations suggest implementing hand washing in classrooms to provide that safe and inclusive environment. Both the National School Board Association (NSBA), and the nationally recognized Food Allergy Research and Education  (FARE) organization suggests classrooms with allergic students implement consistent hand washing before, and after food is handled.

Read FARE's guide for parents here: http://www.foodallergy.org/document.doc?id=123
Read the NSBA's school guidelines for food allergic children here: http://www.nsba.org/foodallergyguide.pdf

Sunday, September 15, 2013

To Grandmother's House We Go: Packing for Asthma, Allergies, and Eczema

While we are blessed with a fantastic, accommodating, and understanding family, sometimes visiting relatives gets tricky when you have celiac disease, food allergies, eczema, and asthma.


Packing for Grandma's for the atopic child (asthma, allergies, eczema) 


This is not medical advice! It is just my opinion! 

Food seems to be the most difficult part of traveling with these conditions but allergies to Grandma's fluffy cat, or pesky pollen allergies, can cause major headaches for everyone, not to mention asthma attacks.  Eczema can flare in the new environment, and a carefree trip can turn into an itchy, wheezy mess. 


If we are dropping the kids off for a stay by themselves: 

* We make a list of safe foods, with their exact brand names and flavors in case we did not pack enough. We are lucky to have family that knows how to shop for our allergen set, and gluten free needs, but a list is still helpful!
* We leave a list of medications, and the times that they are given. 
*  All emergency medications are kept together in a SafetySack with a list of emergency numbers and emergency action plan. 
*  Daily medications are kept together as well with a list of when and how much to give. 

Lets Get Packing! The kids are excited, and ready to go!

Asthma:

All prescribed medications such as:
Nebulizer with medication
Rescue inhaler
Daily preventative/controller inhaler


Allergies (environmental):

All prescribed medication such as: Daily antihistamine, Nasal spray, Emergency antihistamine
Pillow- with dust mite encasing
One set of bedding- pillow case, sheets, blanket
Laundry detergent- small travel sized scent free/dye free

Allergies (food):

All prescribed medications such as: Antihistamines, Epipens, must keep both epipens together. Bring more than one set if possible. 

We make sure to bring food enough for at least one day, and the car ride.  If there is a grocery store nearby that has staple allergen free foods that we can purchase, and we have not packed enough for the entire stay, then we try to go shopping that first day, or the next morning. You can also mark safe food boxes with stickers so your children can see which foods are safe for them. 

Food for the trip as there may not be a place to eat on the way that can cater to your set of allergies.
Breakfast foods like dry cereal, instant cereal, or easy pre-made frozen food like waffles, sausage
Snacks: whole fruits, crackers, chips, etc.
Lunch staples, safe lunch meat can be packed in a cooler, allergen free breads, sliced veggies, and safe spreads such as Sunbutter, or soybutter, and allergen free jam.
Dinner, also can be pre-made, and packed in a cooler or frozen. Safe box mixes, like gluten/allergen free mac and cheese.
Drinks that are allergen free such as an allergen free juice or milk.
Dessert: An allergen free box of cookies for the grandparents to hand out, and maybe some pre-made brownies, or cupcakes.

Eczema:

All prescribed medications such as: Steroid creams
Hydrating Creams such as CeraVe Cream (not the lotion) 
Special Shampoo
such as tar shampoo, or head and shoulders for scalp eczema
Barrier ointment such as Petroleum Jelly
Gentle cleansers for bath time. We love Cetaphil wash and Free&Clear wash
Cotton PJs- long sleeved, to put over moisturizer cream


Emergency Medication and Information:
I keep all emergency medications, and numbers in a Safety Sack which is made of hard plastic, has a zipper, and is transparent. It also comes with a sheet to list allergens, emergency numbers, and an emergency action plan.
The SafetySack has a ring so that it can be hung anywhere in the home, like the kitchen, and brought along in a large purse for outings. It fits both inhalers, a spacer, two EpipenJR or Avi-Q, and Benadryl.

Practice your Emergency Action Plan with your host, if they are to babysit for any length of time, and make sure they are comfortable using the EpipenJR or Auvi-Q, and emergency inhalers with spacer. Bring the EpipenJR or Avi-Q trainers to practice together. You can also practice with an expired EpipenJR, or Avi-Q by injecting into an orange. 

It may seem overwhelming, and it can be at first, but with practice, road trips to Grandma's become easy to plan for! 

Great Resources for Caretakers:
A Pocket Guide to Food Allergies for Grandparents - Written for Grandparents. Short and sweet.
 "Food Allergies for Dummies- Funny name, but comprehensive, and easy to read. My favorite!
http://epipentraining.com/  - A fantastic online course on the signs of anaphylaxis & using Epipens.
Kids With Food Allergies - A great resource for parents and caregivers
FARE - Food Allergy Research and Education

Friday, September 13, 2013

Going gluten free with peanut/tree-nut allergies

Going gluten free is not easy, especially when you also have other foods that you are avoiding. For our family, we went gluten free due to Celiac disease, and we also have other food allergies including severe peanut, and tree-nut allergies to consider.


When you have food allergies oftentimes name brands are a must because of their good allergen labeling, and the extra cost can get you down. Shopping name brand is expensive enough as it is, and going gluten free can add insult to injury.

To prevent the grocery store blues, I try to stay away from the prepackaged foods, and stick to the meat, produce, dairy, and non gluten grains like gluten free oats, quinoa, and rice.

Going gluten free has resulted in a greater understanding of foods, and a need to bake many of our own. I would love to say that I bake "from scratch" all of the time, but I love to use box mixes to save time, and prepackaged foods, while expensive, are a great time saver! I also love the time savings of prepackaged cookies, brownies, crackers, and breads, and do buy limited amounts of prepackaged items.

Some of my favorite prepackaged gluten free and peanut/tree-nut free snacks, breads and treats: 

*All products listed are made in peanut/tree-nut free facilities, but check labels as labels are subject to change. Check every label every time :-)

Spreads:
No Nuts Pea Butter  www.peabutter.ca Yummy peanut butter replacement.
Sunbutter- made from sunflower seeds
Sneaky Chef No Nut Butter - Made from golden peas. My picky family's favorite.

*new! 
Pizza:
Against the Grain Gormet- three cheese gluten free, (also corn, rice, yeast free). It is super yummy!! 

Cookies:
Kinnikinnick's K-Toos-look and taste like Oreo cookies (also dairy free) 
Kinnikinnick's K-kritters Animal Cookies (also dairy free) 
Annie's Gluten Free Ginger Snap Bunny Cookies, and the other flavors are good as well!
Dr. Lucy's cookies, I like the chocolate and chocolate chip the best. (also dairy and egg free)

Crackers:
Dare Foods Brenton Gluten Free, Herb, and Garlic crackers
Vans Crackers

Ice Cream Cones:
Goldbaum's Gluten Free sugar Cones- super excited about this find!

Pasta:
Annie's Gluten Free Rice Shells & Creamy White Cheddar
Tinkyada Organic Brown Rice Spirals
Tinkyada Organic Broen Rice Spaghetti

Flours, and Box Mixes:
King Arthur Flour  (the gluten free line)  Love them! I use their cookie mix, brownie mix, and all purpose flour mix. I use 1/2 cup of Enjoy Life chocolate chips in the brownie mix to make it even yummier. 
Breads from Anna bread maker mixes (have not tried yet, but look good) 
Sun Flour Mills many box mixes, we like their sugar cookies! 
Betty Crocker Gluten free mixes. Yum!

Candy

Amanda’s Own Sunbutter Cups (Great alternative for Nut Allergies, also Gluten Free)
Divvies (Free of Top 8 Allergens)
Dubble Bubble Original Chewing Gum (Nut-free, Gluten-free)
Fun Dip 
Tootsie Rolls
Tootsie Pops
Life Savers Gummies
Nerds
Smarties
Starburst
Surf Sweets (Free of Top 8 Allergens, Gluten-free, Corn-Syrup-free, Free of additives & dyes)
Vermont Nut Free Chocolates

I will add more when I next go shopping! I know there are many more favorites that I am forgetting!
Can't find these items in your local grocery store? Click on links to visit their websites to purchase, or use my two favorite websites for ordering food allergy freindly specialty foods:  Vitacost.com or Amazon.com 

Please leave a comment with your favorite gluten, and peanut/tree-nut free prepackaged food!








Reading Labels for Food Allergies

Reading labels for food allergies can be tricky, especially when you have non top 8 food allergies. With an allergen set like ours that includes peanuts, and tree-nuts, but that also includes foods like strawberry, and watermelon (which are not included in the top 8 food allergies) it can make you want to pull your hair out!

Many times these non top 8 food allergens can be hidden in the label as  "natural flavors", "spices", or "colors". For example: My daughter loves yogurt, especially the squeeze tubes that are so easy to pack in a lunch box. I have been searching for a strawberry free version of them to no avail. When reading the labels on the boxes, it does not specify strawberry in the ingredients, but lists "natural flavors". To find out if strawberry is in the "natural flavors" one must call the company with the number on the box, and the kind representative on the line will tell you that it could take a few days, to a few weeks to get back with that proprietary information.

At this point, all companies that make these convenient and fun kids yogurts have called back with the news that yes, all do have strawberry in the "natural flavors", even the unhealthy looking bright blue cotton candy flavored ones. Some companies will not share what is in their "natural flavors" unless a signed letter from your allergist goes along with your request, or you can get your allergist to call them for you. What a pain it can be! The upside is that it forces us to eat the healthier unflavored versions of many products!

Foods that I have found that commonly have strawberry or watermelon in the "natural flavors":
yogurt, fruit snacks, juice (fruit punch, any of them that lists "with added natural flavors"), popsicles, cookies, pop tarts, flavored breakfast cereals.

What are the top 8 food allergens that must be labeled for?

  • Milk
  • Eggs
  • Peanuts
  • Tree nuts (such as almonds, cashews, walnuts)
  • Fish (such as bass, cod, flounder)
  • Shellfish (such as crab, lobster, shrimp)
  • Soy
  • Wheat

  • A few of the non top 8 foods that do not have to be labeled for:

    *   Fruits (such as strawberries, watermelon, peach, apple, pear)
    *   Vegetables (such as garlic, carrot, cabbage, celery)
    *   Herbs (such as parsley, thyme, oregano)
    *   Seeds (such as sesame, and sunflower)

    FDA Food Labeling Law: Explains the USA Food allergy labeling laws
    Kids With Food Allergies: This website has many good tips on reading labels

    Even with top 8 Food allergens it can be tricky to tell if a food is safe from the label, you may want to call the manufacturer to make sure the product is free from cross-contamination, as cross contamination does not legally have to be labeled for. Some companies do, but the wording that they use can be misleading as "made in the same facility" may sound safer than "may contain", but in reality, both may mean made on shared lines as the allergen. A study has shown that products with "made in the same facility warnings" may contain the same amounts of the allergen, or more, than products with a "may contain" warning.  Read the study about peanut found in foods with both types of warnings here: "may contain" vs "made in the same facility"  

    Calling may give you peace of mind as they can specify what the labeling really means.  

    Learn more about label Reading at www.SnackSafely.com



    Top 8 food allergens can be listed just in the Ingredient list and/or separately in a"Contains" allergen information list. If a product does not have a "Contains" allergen info section, it does NOT mean that there is not a top 8 allergen present. The company just chooses to label the allergen ONLY in the main ingredient list. For example, three different ways to label for egg:































     

    Flavors... Another Exciting Food Allergy Label Reading Adventure:


    It can take a you while longer to get out of the grocery store than usual when you have to read every label, every time. While I feel like I have a good handle on reading labels, and a good list of companies that label well for allergies, I have made mistakes. It is easy to let down your guard, and assume that a certain cereal, or treat, is safe because it has been for a few years. I have learned the hard way that manufacturers like to improve or change their recipes, or manufacturing processes seemingly on a whim.

    Different flavors of the same product may have different allergen warnings as they may be manufactured in different facilities. Even the difference between regular, and sugar free, may make a product go from safe, to unsafe. For example, one flavor of rice cereal by a certain company may be made on a dedicated line free of a certain allergen, while another flavor of the same rice cereal made by the same company, may contain traces of the allergen. This happened to us. I had become lax in reading the label on a particular breakfast cereal as it had been free of my daughter's allergens for years. I decided to branch out and try a different flavor of that same cereal, and unfortunately I did not read the label, or I would have seen the allergy warning that stated this particular flavor "may contain traces of peanuts". My daughter ended up with a systemic reaction.

    Safe label reading for the food allergic can be done! It just may take a bit longer to get your shopping done, and may inspire a love of baking everything from scratch!


    Wednesday, September 11, 2013

    What's up with the fresh fruit and vegetable allergies?

    Aren't fresh fruits and vegetables supposed to be the definition of a healthy, kid friendly, allergy friendly snack? So what is going on?

    Not medical advice! Just my opinion!

    From what I have read, many of our kids with fruit and veggie allergies are reacting to them because their bodies are mistaking the fruit, or veggie for pollen. So, if your little one is getting an itchy mouth, and tongue from a piece of fresh fruit, it may be that their immune system is telling them that they are eating a handful of pollen, rather than the piece of fruit that they are actually eating.

    This has a name: Oral Allergy Syndrome, or Food Pollen Syndrome. It is not that the pollen is somehow stuck to the fruit, rather, the proteins that make up the fruit are so similar to the proteins that make up the pollen, that for some, the body can't tell the difference. Most Oral Allergy Syndrome (OAS) reactions are mild, but some can be severe, and even cause anaphylaxis. So, take yourself, or your child in to see an allergist if you are experiencing these symptoms.

    OAS Symptoms may include:
    Itchy mouth, tongue, or throat
    Mild swelling of the lips, throat, or tongue
    Hives in and on the mouth

    In severe cases it may lead to a more severe systemic reaction where it goes beyond just the mouth, and multiple body systems are involved. For example: itching, runny nose, hives, wheezing, coughing, stomach pain, vomiting, closing of the throat, and a dangerous drop in blood pressure. Anaphylactic shock can occur in highly allergic children, and adults. An allergist should be consulted if you have had a systemic reaction, and an Epipen may be prescribed if needed. 
    Learn more about symptoms here at   www.acaai.org

    Testing for OAS:
    With my children, we have done Skin Prick Testing (SPT) for OAS. For us it has been very helpful. We only test for foods that have caused reactions in the past, as false positives can happen. For fruit and vegetable testing, you need to have a special kind of Skin Prick Test done called a Prick-to-Prick test. Note: Testing is not 100% accurate especially for OAS. If your child is experiencing symptoms including, but not limited to: an itchy mouth, hives, swelling of the lips or tongue, or eczema flare ups after eating certain foods, then you may want to avoid those foods even with a negative SPT.

    What is a Prick-to Prick Skin Prick Test?
    This test uses fresh fruits and vegetables instead of the usual factory samples. The allergist will have you bring in the fresh fruits and vegetables for this prick-to-prick test because fruit and vegetable proteins are very delicate, and break down easily. If they use the factory samples, you may end up with a false negative as the proteins may have broken down. The allergist will lightly scratch your child's back and then place a tiny bit of the allergen on top of the scratch. It is not painful, just uncomfortable as it can cause itchiness at the site of the scratch.

    If it is that simple, why not do it at home?
    With any type of skin prick testing, severe reactions are uncommon, but can occur. Therefore all skin prick testing needs to be done under an allergist's care, in the appropriate setting, in case of a severe reaction, like anaphylaxis. You will be asked to wait 20 min or longer at the allergist's office after the test to make sure there is no adverse reaction to the test.

    Personal experience with prick-to-prick SPT: After false negatives with a regular SPT using the factory samples, we were given the green light to eat the fruits, which resulted in a severe systemic reaction.  So, after a follow up visit, the allergist called us back in for a prick-to-prick test using fresh fruit this time. I found it ironic to go grocery shopping for a large bag of foods that my child was allergic to, and then enter the allergist's office with the grocery bag full of fresh produce.

    The test was painless, just itchy. After the testing, and the 20 minute wait, the allergist made sure that we had our EpipenJR twin pack as my daughter had a history of severe reaction to one of the fruits, and sent us on our way.

    Photo is of a skin prick test done on the back. Looks more uncomfortable than it was! Each hive is called a "wheel" and the red area around it is called the flare. It is measured by the size of the flare,
    and the wheel separately in mm. Schedule a follow up visit so that you can discuss the results with the allergist.


    Important to note: Some people with OAS can eat the fruits and vegetables that they react to when fresh after they are cooked, frozen, or pickled, as those processes can break down the proteins that are similar to the pollen they are allergic to, BUT others can not. Talk to your allergist to see what they suggest.

    Odd Facts: 


    Some fruits are more allergenic the riper they are. For example: My daughter can eat an unripe, hard as a rock nectarine, but develops an itchy mouth when eating a ripe nectarine.

    Some OAS sufferers can eat raw apples (and other fruits with skin) when peeled. This is because the skin has a higher concentration of proteins than the flesh. My daughter still reacts to the peeled apples, but it works for many others! 

    Pollen count matters...sometimes. For example: Apples have cross reactive proteins with Birch tree pollen. When the Birch pollen is high, my daughter can't eat an apple without hives, and an itchy mouth, but in the winter, when the pollen count is 0 she can eat apples with no issue. With raw cabbage, she reacts to it all year round, even when the cross reacting mugwart pollen is low. 

    You can react to one variety of apple, cherry, grape, etc., but not necessarily all varieties as some are more or less allergenic than others. In example: One apple variety is less allergenic, than another. 
    You can read about an apple study here:


    Some fruit allergies are more than simple OAS and the fruit or veggie should not be eaten fresh or cooked as the person's immune system is allergic to proteins (such as Lipid Transfer Proteins) that are not broken down easily by cooking etc. In this case it should be avoided in all forms as the reaction can be life threatening. You can read about Lipid Transfer Protein Allergies here: LTP Fruit Allergies 

    This is not medical advice! Please seek an allergist near you for medical advice!
    A link I like:
    http://www.webmd.com/allergies/features/oral-allergy-syndrome-foods

    And a great OAS blog post:
    http://www.artofglutenfreebaking.com/2013/04/oral-allergy-syndrome-oas-or-food-pollen-allergy/

    Expert info: