The 504 Plan – Is it Necessary?

There are many schools and school districts that have guidelines or policies for severely allergic children. Some states have mandated these policies; other states have provided guidelines for schools to follow. If you’re interested in this type of legislation, please click here. There is a Federal law – the Americans with Disabilities Act – that can provide coverage for your child with life threatening food allergies regardless of where you live in the USA. Every entity that receives public funding (therefore generally not private schools) must adhere to the ADA.

The Asthma and Allergy Foundation of America states,  “The ADA borrows from Section 504 of the Rehabilitation Act of 1973. Section 504 prohibits discrimination on the basis of disability in employment and education in agencies, programs and services that receive federal money. The ADA extends many of the rights and duties of Section 504 to public accommodations such as restaurants, hotels, theaters, stores, doctors’ offices, museums, private schools and child care programs. They must be readily accessible to and usable by individuals with disabilities. No one can be excluded or denied services just because he/she is disabled or based on ignorance, attitudes or stereotypes.”

The Section 504 Plan in an educational setting stipulates the accommodations your child with food allergies will need in order to safely attend school and participate in activities. This plan will generally be created with a group of administrators and you, the parents, in attendance. Many school districts have 504 administrators who oversee such plans. The school principal, school counselor, teacher and parents are also frequently participants.

This plan is legally binding. Beyond that, having a written plan of accommodations ensures that there is no confusion as to the exact steps that need to be taken to keep your child safe and included in as many school activities as possible.

Some schools will be apprehensive to create a 504 Plan for a food allergic child and will want to only agree to a Health Care Plan. Our experience was that our son was too often asked to not participate in school activities, whether it was in the classroom or a field trip, because of his food allergies when he started elementary school. We wanted to ensure his inclusion in all safe activities, or for the teacher to find an adequate substitute for the entire class. A 504 Plan ensures that a child with a disability is included in the activities as much as possible, whereas a Health Care Plan didn’t cover the exclusion issue. We therefore asked for both a 504 Plan and a Health Care Plan.

You will want to have the 504 Plan in place BEFORE the school year starts. Ensure that every teacher who will teach your child has read this plan, and is aware of the specific accommodations.

We rewrite the 504 Plan on an annual basis in the spring. This allows next year’s teacher(s) to be brought into the meeting. We review what went well during the school year, what problems we had and what needs to be changed in the 504 Plan for the upcoming school year. Our son always participates in these meetings.

The Americans with Disabilities Act was amended in 2008 to include eating as a major life activity. Therefore, obtaining a 504 Plan for your food allergic child should no longer be as difficult to obtain. You can read the new amendment to this Act here.

Does every child with food allergies need a 504 Plan?    No, not in my opinion.

In our school district of 23,000+ students, there are approximately 600 with life threatening food allergies (indicated by having a prescription for an EpiPen). Only 10 of these students have a 504 Plan. Why is that? Our school district has a policy and procedures for dealing with students with severe food allergies. Additionally, the district has guidelines for the parents, student, teacher, school nurse, administration, transportation and cafeteria to follow. Most students will have all their needs met with these layers of protection. However, for students who have a history of severe reactions and/or contact and inhalant reactions, and/or have severe peanut or tree nut allergies (indicating more likely to experience anaphylaxis), in addition to eczema and/or asthma – an added layer of awareness is necessary. Those are the students who have 504 Plans.

I recognize that our school district is certainly not the “norm.” If your school district does not have any guidelines, policy or procedures for students with food allergies, then you will likely not only want, but need a 504 Plan to ensure your child is included in all activities with the highest level of safety.

In Morgan’s Corner below, Morgan explains his experience with 504 Plan specifics. We feel it is very important to include him in all 504 discussions so that he knows the ‘safe adults’ in the school building. He also knows what is expected to keep him safe, and that has been extremely important in situations where the 504 Plan was not followed – accidentally.

We have never had to involve a lawyer to get our school to provide a 504 Plan. Our allergist listed out what accommodations would be necessary for Morgan to attend school in a letter, and the school district agreed that a 504 Plan was necessary. When there has been an issue about the plan not being followed, we’ve had an immediate meeting with the Principal to discuss what actions should have been taken. The plan has been updated or reiterated, and thankfully no serious allergic reactions have been the result of the error. The 504 Plan has allowed us to separate out the emergency actions, which are iterated in the Health Care Plan – with the accommodations which are listed in the 504 Plan.

We’ve found benefit in having both, and Morgan continues to have both in high school.

Morgan’s Corner: The Importance and ‘Evolution’ of a 504 Plan and Meetings

As school starts, accommodations start entering our minds. Dealing with school and all the food related issues can seem complicated and challenging, but it’s not!

Section 504 of the American Disabilities Act allows people with a disability that can impend on a learning environment (in our case, food allergies) have a plan for accommodations- a ’504 Plan’. It is not the same as a Health Care Plan – I do have both.

I have had my 504 Plan since Kindergarten. It has helped me stay safe in school- from having staff and kids wash their hands to having a peanut-free zone during lunch. My 504 Plan has helped me stay safe and healthy throughout all of my school years.

A 504 Plan allows you (or your child) to have accommodations in school. This ranges from everything- I’ve had no pet policies, training of the staff on EpiPens, and no-nut zones at lunch and in my classroom(s). Of course, I’ve had help along the way to create guidelines and keep me safe at school.

Over the years, my 504 meetings have changed dramatically. A 504 Meeting is an annual meeting that occurs with your counselor or other staff member (such as your principal), yourself and/or your child. It is required by Section 504, as every year you can revise accommodations placed in your 504 Plan. I’ve always participated in my 504 Meetings, ever since Kindergarten. Back then, I would sit there and listen, and my mom primarily led the meetings.

As I grew older, I started to participate more- adding comments, responding to questions, etc. In 8th grade, I led my first 504 Meeting.

In my case, I have two ’504 Meetings’- one at the beginning and end of the school year. At the end of the year, I go over (with my mom) the accommodations laid out in my 504 plan with my counselor. We take out some policies, revise some, sometimes even add more- it all depends on what was needed in the past school year and our vision for the future. The one at the beginning of the school year is the more ‘important’ one- I meet with my teachers for the next year, train them on the EpiPen, and discuss policies of food in the classroom.

In 9th grade, all but one of my teachers applied a ‘no-food’ policy- which worked out just fine. Certainly, there were incidents where people brought in food, but for the most part, it didn’t happen. Most of the food brought in anyways was safe for me to be around. Even in the classroom where food was allowed (but not my allergens) worked out fine. Most of my classmates are very aware, so it usually always works out fine.

Over the years, my 504 Plan has been a very important part of my school life. It allowed accommodations to make me feel safe in school. Over the years, it has allowed my self-advocacy to arise, yet still assist me in food-related issues, especially in high school.

Morgan

 

Posted in School & Food Allergy | Leave a comment

Bullying children with food allergies

In the recent CNN article, Food allergies make kids a target of bullies, statistics were given that about 35% of children over the age of 5 with food allergies have been bullied, teased or harassed. There has been a lot of press on bullying recently, and this particular research published in the Annals of Allergy, Asthma and Immunology brought it closer to home for us.

Our school district defines Bullying in their Policy as follows:  Bullying is defined as any written or verbal expression, physical act or gesture, or a pattern thereof, that is intended to cause distress upon one or more persons in the school environment. Direct bullying can be physical in nature, such as hitting, kicking, pushing, or choking. Or, it can be verbal, such as name-calling, threatening, teasing, etc. Indirect bullying is subtle and may be difficult to detect, such as social isolation, intentional exclusion, making faces, staring, obscene gestures, manipulating friendships, etc. Bullying may include an imbalance of power between the bully and the victim.

Our son was thankfully bullied only a few times in elementary school, and not at all in middle school or high school. I’m sure it has helped that we’ve lived in the same community for 17 years, so Morgan has gone to school with the same children since kindergarten. These kids have been aware of his food allergies for years, and most have been very caring and compassionate about bringing in safe foods.

I feel it’s important to share the specifics of the bullying instances to help other parents be aware what our school district felt was inappropriate behavior that needed to be immediately stopped. The first instance occurred in 1st grade when a little boy chased Morgan around the playground after lunch saying he had a peanut butter cracker and “I’m going to kill you.” Morgan didn’t even take the child seriously because he knew the boy was emotionally immature, and he wasn’t sure the boy even had any food in his hand. A friend took Morgan to the playground monitor to report the other child’s behavior! The playground monitor immediately sent the bullying boy to the office whereupon the Principal called the parents and the child was suspended for the rest of the school day. This impressed upon everyone the seriousness of food allergies and that food should never be used as a weapon. Since Morgan was the first child in the school to have such severe and multiple food allergies, this set the tone for the rest of the families. The good news is that this little boy (who’s now a big boy!) is now very good friends with Morgan. They put this issue aside, and our families have moved on to become good friends too. They are now some of the biggest advocates for keeping Morgan safe in their home!

The second instance of bullying occurred when a child tried the same behavior on the playground, however because of a language barrier his parents didn’t understand the implications. He wasn’t suspended as far as I know. He too had some emotional issues. Later in the school year, his parents brought in sesame snacks to celebrate the Chinese New Year and had to once again be reminded that this was a severe allergy of Morgan’s and the snacks had to be sent home. This boy ended up in my husband’s Cub Scout Den, so the family got a close up lesson about food allergies. We all ended up being friends in the end!

The last instance occurred in 4th grade when a boy sat at the Peanut-Free lunch table at school with a Butterfinger candy bar and wouldn’t move. Morgan tried to get the boy to move to no avail. He then enlisted the Principal to assist him, because she happened to be in the cafeteria at the time. The Principal took the boy to the office and contacted his father. Morgan came home to tell my husband and me about the story, and my husband called the boy’s father to discuss it since the child was in his Cub Scout Den also! The father was furious that his child was being singled out for this behavior and thought that nothing inappropriate had been done! Thankfully, the school had already warned the child that sitting at the Peanut-Free Zone table with non-safe foods wouldn’t be tolerated in the future and it never occurred again.

Since these instances, Morgan has never been bullied again. Morgan is forthright about his allergies when the information would be helpful for others to know. It helps too that he’s very tall and towers over most of his classmates and older students! Regardless, the Principal in each of the situations acted swiftly and decisively which set the tone that bullying behavior with food would never be tolerated.

I believe that most school districts have a bullying policy in place. Read through your school district’s policy! It helps to see what they determine to be inappropriate behavior.

If inappropriate teasing, harassment or bullying does occur, encourage your child to talk with an adult immediately. We’ve continued to have conversations with Morgan about the potential for nasty comments from his classmates, just to keep us in the loop about any issues. He’s been very willing to share with others about his food allergies – not to be called ‘Allergy Boy’ but rather to be a self-advocate to ensure his safety. There’s a fine line between sharing the appropriate information and setting oneself up for teasing. A good school policy helps to support this balance.

 

Posted in Emotional Aspects of Food Allergy | Leave a comment

What does “Reasonable Accommodations” mean?

If you have a 504 Plan for your child’s food allergies at your child’s school, you have no doubt come across the term ‘reasonable accommodations.’ It’s part of the language of the American with Disabilities Act. Trying to come to an agreement of what is reasonable to keep our children with food allergies safe can be like speaking two different languages with some school administrators. Yet, when it works it ends up more like a beautiful symphony when all parties can agree on what is necessary to keep a child with food allergies safe.

Most children with food allergies can be accommodated using existing guidelines for schools that the Food Allergy & Anaphylaxis Network (FAAN) provides on their website here. Our school district has expanded those guidelines with the assistance of a Food Allergy Task Force we created in our district. Those guidelines are available here. There are students, like my son, who have more extensive needs for safety where more accommodations are needed. We have these accommodations in writing in the form of a 504 Plan.

So how do you go about being a reasonable parent when you know the severity levels of your child’s food allergies and past reactions? When Morgan started school he had not experienced a significant allergic reaction that required the use of his EpiPen. He’d had a few peanut contact reactions and had reacted to numerous environmental issues such as pollens and pets. He had also had reactions to vaccinations, and he had RAST and skin prick tests that indicated that he had numerous food allergies. He hadn’t actually ingested many of the foods where he showed a high positive IgE, so we were confused as to which foods we needed to be concerned about in the classroom.

We spoke to our allergist to determine what we needed to request for accommodations for Morgan to safely attend elementary school. She suggested an allergen-free classroom and an allergen-free zone in the lunchroom in addition to hand washing after lunch. Our allergist wrote a letter to the school district as a starting point for what was needed. Then, the 504 Plan was created with the assistance of the 504 Coordinator for the school district, the school counselor, and the school Principal. This all occurred in the Spring prior to Morgan starting kindergarten. Morgan was the first student with food allergies for whom the district had provided a 504 Plan, so we were all trying to foresee where potential issues could arise.

We found that asking for only what Morgan needed to stay safe was the place to start. We didn’t request to have a peanut-free school, because that wasn’t going to address Morgan’s other severe allergies – tree nuts, sesame, fish and shellfish. We wanted an allergy-aware school. We didn’t think a peanut-free school was necessary based upon Morgan’s past history of having had no inhalant reactions around peanuts. Remember – an accommodation is only as good as its ability to be enforced. Additionally, we wanted to ask for only as much as Morgan needed to remain safe and nothing more. Thankfully, in 12 years (of preschool, elementary, middle and high school) we’ve never had to escalate any additional accommodations.

We didn’t ask that the cafeteria cease serving peanut butter products because we didn’t plan on Morgan eating a ‘hot lunch’ from the cafeteria. From my understanding, it is required by Federal law that a school must provide a safe meal for a child with food allergies. This was offered to us, and we politely declined. We felt like we had enough potential issues in educating the school staff about food allergies in classrooms. Taking on educating the cafeteria workers also was too much. Morgan always brought his food from home, whether it was for lunch or for classroom snacks. He continues that to this day in high school. This added a level of comfort, control and safety for him and it was one less accommodation that required management. He always sat in an allergen-free zone in the cafeteria during elementary school. Most of his friends wanted to sit next to him as well, and they respected the allergen-free table. Some children truly desire to eat lunch made in the cafeteria. If this is the case for your child, you might want to pursue this accommodation.

We didn’t ask that all classrooms be allergen-free. We only wanted the classrooms that Morgan was attending to be allergen-free. Therefore, that included the art room, gym, library, and music room in addition to his classroom. The other kindergarten classroom, at that time, still allowed all of Morgan’s allergens to be brought into the classroom. Morgan’s teacher knew that her class would never travel around to another classroom in the school, and that seemed to work out well.

We did ask that children wash their hands after eating lunch to ensure that no allergens traveled out to the playground during elementary school. We asked that the school principal, with the school nurse, send out a letter to the parents of students in Morgan’s class about the need for safe foods in the classroom. This letter didn’t identify Morgan by name, but just stated that “there is a student in the class with severe food allergies.” Students quickly figured out who this student was, and they were more than compassionate and wanted to keep Morgan safe.

The school included food allergies in various lessons about ‘student differences.’ Morgan’s elementary school had dozens of children along the autism spectrum mainstreamed in classes, so students had participated in classroom discussions about this condition. Adding discussions about food allergies, diabetes and other medical issues fell into the lesson easily. Several parents told me that their child came home wishing they were “special” too!

The main thing we’ve learned about ‘reasonable accommodations’ is that it’s a negotiable term. Every class offered in middle school and high school is not going to be safe for Morgan – especially the classes that involved cooking or involved food to increase cultural awareness. We could have raised an issue about this, but it was far more important to us for Morgan to have his English, Math, Science and Social Studies classes to be safe. We want for our son to understand that not everything in this world is going to be changed for him to allow his participation.

We have worked within the school system to increase education and awareness of food allergies and this has done more to create a new standard of ‘reasonable accommodations.’ In subsequent years, Morgan’s elementary school did cease serving peanut products in the cafeteria because of the large number of students with peanut allergies. The school also now allows no peanut products or pets in any classroom.

Good communication with school administrators is the keystone in the arch you are building. Modeling a balanced approach for our son allows him today to communicate his needs in a positive way. He’s not anxious about his food allergies because he knows that his safety is of utmost concern to school officials, and that if a situation arises he can speak with an adult immediately. Regardless, Morgan has also championed his own ability to be safe as well.

Ultimately, we parents are modeling how to manage food allergies for our children. We want our son to have a realistic view of what accommodations he needs to participate in life’s activities. He’s finding that he can do a lot of amazing things with no allergic reactions and very few accommodations necessary.

Posted in Emotional Aspects of Food Allergy | Leave a comment

Food Allergies in Culinary Arts School

Ari, how old are you and what are your allergies?

I am a fair young maiden of twenty-one and a half. Just kidding, that’s super old. Anyways, I’m a legal adult, and I have allergies to peanuts, tree nuts, soy, fish, shellfish, mustard seed, sesame and nigella seed. Whew. I’ve also got a handful of intolerances and sensitivities, like gluten, poultry, eggs, eggplant and milk.

I think I remember reading that your allergies appeared “later” in life. Can you tell me about that?

Oh, geez. Yeah, it all started when I was nineteen. I LOVED nuts. Almond butter, chocolate-covered peanuts, anything amaretto-flavored. I used to eat fruit and nut bars every morning for breakfast. One day, I had a cherry raw bar while waiting for the train to get into Manhattan. By the time I had gone under the East River, I was bright red, covered with hives and couldn’t swallow. Needless to say, I hightailed it to the doctor that day.

From there came every couple of months, a new food allergy or intolerance. Since I’m such a food nerd, I remember each dish that began this discovery of my issues: it was a bagel when I discovered gluten; a shrimp summer roll with seafood; halvah with sesame; quiche for the eggs; Thanksgiving turkey for the poultry; a red curry with all the seeds, and pad Thai with soy. I’ve always been a milktard, though.

It’s kind of weird for me because I still crave these things. I haven’t had sesame chicken or bouillabaisse in three years. But, I don’t let it get me down….I find ways to get around my cravings for things like pasta alfredo and peanut butter fudge. And that’s when you see me doing crazy stuff with nutritional yeast and sunflower seed butter on Food for Dorks.

Have you ever experienced anaphylaxis? If so, what were the circumstances? If not, what type of allergic symptoms have you experienced?

Ahhh! Anaphylaxis is so scary. I’ve definitely gone through it a couple of times. One particular time sticks with me. I was eating lunch on my break at work. A shrimp roll from Dean & Deluca. I’d never ever had a problem with seafood before. About two minutes after eating the whole thing, I threw up all over my co-worker. In the break room. Yeah, I know. Apparently, I turned purple, and my manager had to stab me in the leg with my EpiPen. We have a special bond now. I think. Mostly, I remember fading in and out of sleep at the hospital and waking up with a deflated tongue. No longer was I crimson colored, now I was back to being pale & pasty.

I’ve had other non-anaphylactic reactions, too, though. Standard itchiness, nausea, dizziness, you know, the usual. Boring in comparison to your body throwing a riot over Vietnamese food. But, still annoying.

My son, Morgan, was very impressed that you went to a culinary arts school. Which one did you attend? How did they make accommodations for you?

Tell Morgan thanks for me, will ya? I attend the Institute of Culinary Education in New York City, and graduate in October. The instructors were pretty accommodating, I guess. They don’t force me to do anything I don’t feel comfortable doing. One really cool thing is that the instructors let me use alternatives for allergens, like soy-free margarine, coconut aminos (a soy sauce alternative) and Daiya cheese. I definitely get made fun of whenever I wear my mask during lessons where we cook something I’m allergic to. But, whatever. I don’t let it get to me. At all. I’m there to learn– not only how to cook, but to master gourmet dishes and techniques so that I can provide y’all with tasty treats and recipes! Oh, and I would absolutely recommend that everyone should take a cooking class at least once. It will greatly improve your quality of life.

Please tell me about Food for Dorks. Where is your blog located? Are you on FB, Twitter, elsewhere, etc?

Food for Dorks is my lil’ blog baby. It’s a lot of fun for me. I’m honestly just sharing what I love doing with the rest of the world. Maybe it’s trite, but reinventing cuisine that is all-inclusive is a true art. Food for Dorks has allowed me to share my art.

But yeah, I love being able to share recipes, reviews, articles and general culinary insight to the rest of the glutard and peanutard world.  We’re definitely not hard to find. Pretty much everywhere on the internet. Like us on Facebook, tweet us at @foodfordorks, follow us on tumblr, visit the website.

Are you still in school or out in the work world? How do you manage working with food every day?

Still in school! I was kind of fed up with regular school, and I liked cooking. I’m also an angsty twenty-something. Add those up all together and you get a gap year of culinary school. It’s like a Julia Roberts movie, or something. I also have a job, but it’s in technology. Yep, I’m a full on nerd-dork hybrid. Food isn’t that scary to me; you just gotta know your strengths and your weakness, and most importantly, you have to know yourself. Only then can you proceed with confidence.

Many parents are concerned about their child with food allergies dating. Tell me about how you manage this.

I laugh a little when I think about my dating life. Not just because I’m single. There are issues that I think concern anyone affected by food allergies when dating, and that’s telling your date about them, and then the whole kissing thing. Here’s my advice to your offspring:

On the telling your date about food allergies thing, don’t make it a big, awkward deal. It’s not a big awkward, deal. It’s just who you are. You can’t eat shellfish, so Japanese food is out. Done. Have Tex-Mex instead, or do something without food. Parks, museums, bike riding, there’s a lot out there to do.

If you’re like me, with a bunch of allergies, just own it. If you do go out to eat, and your date orders something you’re allergic to, just remind them politely to wash their hands after. They’ll learn their lesson about eating your no-no food around you when you decline their kisses.

And on that note, the kissing thing.  Oh, my gosh. I had a boyfriend once that forgot to tell me he had a Snickers bar before seeing me. Of course we made out, and then, of course, I promptly broke out in hives.  Besides him being a bonafide idiot, he learned a lesson: be mindful! I made him do my laundry the next day. Don’t worry, I dumped him eventually.

Basically: don’t date dummies, and ask. Don’t ever be afraid to ask your date if they’ve eaten something you’re allergic to. If they can’t remember what they’ve had to eat within the past eight hours…don’t date them. Oh, and one last thing to remind your kid about dating, in general: if someone’s going to be a jerk to you about your food allergies, onto the next one. Seriously. Only date people that care about you. That includes your dietary restrictions.

Is there anything else you’d like to add?

If your child is ever down about their food allergies, wants dating advice, or just wants someone to look up to that understands, please, by all means, don’t hesitate to contact me. I can definitely play pen pal if your kiddo needs a big sister. That’s foodfordorks@gmail.com.

Same goes for you too, Mom and Dad!

And, if you have any requests for cuisine, holla at yo’ girl. I’d be happy whip up something for ya.

Thanks Ari!

 

Posted in College Age with Food Allergies | Leave a comment

Eczema: The Itch that Rashes

Living with food allergies and eczema has become quite normal for our family. Our son, Morgan, is now almost 15 years old and has lived with food allergies his entire life; however his eczema is our ongoing battle.
From his first few months, Morgan had severe, weeping eczema across his body. It was everywhere – behind his knees, on his hands and feet, and even behind his earlobes. His skin was constantly infected, and I coated him with lotions and over the counter steroid creams to not much avail.

Morgan’s eczema was helped by using Eucerin® lotion in the paste form, and by sparingly using Elocon® lotion (a steroid) when he was an infant. The Eucerin® is almost the consistency of lard.  Wal-Mart sells a generic brand of this that costs about 1/2 the amount of Eucerin®, and we’ve found it to be equally as good.  We slathered it on him every night.  When he was a baby, we applied it every time we changed his diaper.  The Elocon® lotion is a steroid cream, so we tried to use it only when his eczema got very severe.

The eczema moved around his body as he grew older, but it has never entirely disappeared.  For a while, he had one finger that regularly sported an eczema spot if he ate any food with food dyes!

The use of heat in the winter time dries out his skin, as does swimming in chlorinated water in the summertime.  So, there isn’t a season where he gets a break.  If we forgot to use the Eucerin® paste, his eczema would crack and fissures would form.  He has been put on antibiotics, which ended up curing the fissures.  However, we tried to not allow the eczema to get this out of control.  The Elocon® lotion will sting if put on eczema with fissures.  He would cry in pain which hurt me almost as much as him – and made me more aware of staying ahead of his skin problems.

Morgan’s eczema gets worse when certain foods are added to his diet.  We notice that processed foods with yellow and red dyes made his skin much worse, so we removed these from his diet entirely when he was young.  This helped the eczema to disappear, yet it would amazingly reappear for no apparent reason. When he was a baby he was severely allergic to eggs; when this allergy disappeared, we started feeding him foods containing eggs, only to find that his eczema flared up.

We live in Colorado Springs, which has hot, dry air in the summer.  However, combining the heat with sun lotions is a recipe for disaster.  We use titanium dioxide sun lotions since they seem to be kinder to his skin.  Certain fabrics such as nylon bothered his skin when he was younger, creating eczema-like blotches.  Long ago, I began using laundry soap that is free of all dyes and perfumes.  None of this cures his eczema, but it helps it to not become worse.

Now that he’s a teenager, he’s responsible for taking care of his skin. As with most teenage boys, hygiene is a difficult daily practice! For a while, the prescription medication Singulair® cured his eczema completely. Now it doesn’t work at all. Since he started allergy shots his eczema seems to be worse, yet he is also in the middle of puberty. Our allergist had told us that some patients experience worsening eczema with allergy shots, yet his environmental and pet allergies are much better. It’s a difficult trade off!

When he has a bad eczema breakout, we have begun wet wrapping his skin with CeraVe® moisturizing cream and Fluocinonide steroid cream. (He also takes an antihistamine, such as Xyzal or Zyrtec once a day.) We apply the steroid first, then the moisturizing cream and then hot, wet gauze to wrap his skin sealing in the moisture. Adding socks or ace bandages over the top insures the gauze stays in place. Keeping the wet wraps in place overnight helps the worst eczema spots. Twice a day wet wrap treatments can do wonders for his skin!

There is a prescription drug called Elidel or Protopic that is for severe eczema sufferers.  Our allergist didn’t think that Morgan’s eczema was severe enough to warrant such a treatment.  However, if your child is really suffering – you might want to discuss this with your allergist. There have been FDA warnings regarding this drug that you might want to read here first.

We feel like detectives on most days, attempting to find the cause of the eczema. It might be food related, contact related (such as grass or clothing articles) or none of the above. We would love to find the magical cure to make his eczema disappear. In the meantime, we’ll keep searching for what works for today to ease the itch!

 

 

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Interview with Gina Clowes, AllergyMoms

Gina, could you please tell me your practice name, how long you’ve been in business and how a potential client can reach you online or by telephone?

AllergyMoms LLC.  I have been in business since 2006. I can be reached at gclowes@allergymoms.com or (724)432-3811.

I help parents adjust to life with a child who has life-threatening food allergies.

I am a food allergy educator, speaker, certified life coach, and author of the best-selling children’s book “One of the Gang: Nurturing the Souls of Children with Food Allergies”

I write a regular column in Allergic Living Magazine called “The Parenting Coach” where I share my passion for supporting the emotional needs of families with food allergies.

Clients can purchase individual coaching packages here:

http://www.allergymoms.com/modules/xoopsfaq/index.php

My “Ten Things Children with Food Allergies Want You To Know” eBook and Teleseminar Recording is available here:
http://www.allergymoms.com/10things.html

I periodically send information on new group coaching and teleclasses through my newsletter.
Newsletter is available here: http://visitor.r20.constantcontact.com/manage/optin/ea?v=0016DNjNiidDhSvcZnoj1cK5g%3D%3D

What training and/or degrees do you have?

I am a Certified Life Coach and will have Master Coach Certification in July 2011. I have a BA in Liberal Arts and Social and Behavioral Science.

Do you have food allergies or intolerances yourself? Or do you have children who do?

I have two children. My ten year old son has multiple food allergies. (Milk, wheat, egg , peanuts, tree nuts and more.)

What is your “typical client”?

My ideal client is:
The mother of a child who has been recently diagnosed or recently had a reaction and the parent is feeling overwhelmed.

What do you feel you can offer a client who is suffering from anxiety about their food allergies or celiac disease diagnosis?

The majority of my clients are overwhelmed, scared and depleted. They need support of a person who has been through exactly what they are going through. Our needs are unique and most people don’t understand the tremendous impact that food allergies have on every aspect of life.

I help clients feel calm so that they feel comfortable managing the shopping, cooking, label reading and that they are able to avoid, recognize and treat allergic reactions.

I help clients feel confident by showing them that overwhelm and fear can be part of the process and that we can work through these emotions and get to confidence and competence.

I show clients “how” to explain food allergies to others so they can get the support, care and compliance they need.

Once they have been fully heard, we can look at ways for them to integrate self-care into their daily lives and then everything starts to improve. The joy and the fun of life comes back, many times even more than before.

What type(s) of therapy do you practice?

A life-coach helps a person overcome obstacles to living a full and joyful life.  We do not practice therapy.  Some clients present with therapeutic issues and I refer them to a mental health professional.

Is there anything else you’d like to add?

The parents I work with find tremendous benefits in having their experience validated; opening up to see all of the options available for creating a safe and joyful life, and having someone support them as they begin on this path. It is a different way of life and the adjustment period can be brutal. But it is manageable and there is light at the end of the tunnel. I just point the way!



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Interview with Michaela Smith – Age 20

Michaela, what food allergies (and intolerances) do you have and how old are you?

I am twenty years old. I am moderately allergic to wheat and have severe gluten intolerance and other intolerances to beef, pork and lemon. I have not been tested for Celiac disease with a biopsy because I went off of wheat and noticed how much better it made me feel and didn’t want to start eating it again. GI doctors require with celiac tests that I still need to be eating wheat and my doctor suggested that I not do that.

What happens if you get exposed to your allergens?

I only have a reaction when I ingest the foods. My stomach hurts really badly and my intestines are usually unhappy. I can sit in a bakery and have no issues at all.

How did you handle your wheat food allergy and intolerances in high school?

High school was an interesting experience. I was in the high school band for all four years. I kept trying to explain to my band director that it would be great to go to a restaurant that had a huge salad that I could eat and then I would have a few snacks when we got back to the hotel. I would at times sit in an Italian restaurant, because that is what the band director picked, and could not eat anything. I had found that even some Caesar dressings had wheat in them. It was a very frustrating event for me even though I knew I had snacks at the hotel.

Another experience that I had in high school was with the Colorado Springs Youth Symphony’s Pikes Peak Winds. I had the opportunity to go to Japan with them. I was really nervous at first. However, my mom helped me out by finding a translator that made little cards and sheets of paper with all the food that I could and could not eat. I went over there for about 11 days. There were some meals that had an unknown ingredient in them, and I decided that it would be a poor idea to eat it because I did not want to get sick. I brought little snacks in my suitcase so that if I did not eat a meal I could at least have a snack. I brought white rice crackers and apple sauce. Most of the kids on that trip watched out for me and helped me as much as possible. I lost a little bit of weight during the trip, but I was also really busy and had an amazing time. Food for me on that trip was definitely not the sole focus.

What is your experience of colleges’ awareness of food allergies?

Some Colleges’ awareness is surprisingly slim; at least that is what my experience has been. Though the University of Denver did an excellent job with accommodating me when I went to a Music Camp there. It was about a 2 week camp and an amazing experience. My mom got in touch with the head chef at the dining hall that we were going to be eating in. The chef had said that he could cook all of my food and I would not have to bring too much. We gave him a list of the foods I can and cannot eat. I came up with a menu for him to follow so at each mealtime, my meal would be ready. They made some of the best Turkey Burgers I have ever had. And the chef made some amazing sweet potato fries. Man oh man was it good. I did not get sick once, and they were truly very good at accommodating food allergies.

My experience at Colorado State University was a little different. At first they said that they would be able to accommodate my food allergies. Though they sent a menu for the week at band camp, and there truly was no way for that to occur. So I ended up bringing my own food that I had in my dorm room refrigerator. I would do all the band stuff at camp, and then I would come back and eat whatever food I had brought by heating it in the microwave. Many of the students were really jealous of the fact that I had so many different foods in the refrigerator and was wondering if they could have some. I said no, I was not trying to be rude, because I only had a certain amount for the week. Overall that was another good experience with food.

What issues did you run into when looking at colleges in Colorado and their awareness of food allergies?

Well I found a few issues. At the University of Northern Colorado they had said that I could live in an apartment or I could live in the dorm and use the kitchen in the basement area. However there are many people who use that area to cook cookies and cupcakes. The last thing that I wanted was cross contamination within a meal that I was cooking. And there was a significant possibility that not everything is perfectly clean. So as wonderful as that had sounded, that didn’t seem to work for me. The apartment idea felt like too much to take on. It would be cooking and grocery shopping in addition to going to school at the beginning of entering college.

The other school that I was looking at was Colorado State University. They had stated that they could handle everything and anything. Though the more questions that I had asked with my food allergies, the more it became apparent that it might not be the best choice. They demanded that I live in the dorm, and their awareness was more about peanut allergies than celiac disease or other intolerances. They weren’t willing to change their menus for me – they just wanted me to find something to eat that was already on the menu and they weren’t good about listing ingredients in the foods.

Since you didn’t live in a dorm, what did you choose to do for living arrangements your freshman year of college? And now?

I chose for my freshman year to live at home because it seemed like a safe place to be. I was a little nervous moving out because of some of the experience I had in the past with people not necessarily understanding my food allergies. Though today I have moved out and live with one roommate in a house. He and I get along great. I have my food and he has his. I have one pan that I cook most of my food in, and he has his. It has worked out just perfectly.

How do you handle your food allergies now?

Today I eat probably about 99% of my meals at home. Probably about once every six months I will go out to P.F. Chang’s with friends because they have a gluten free menu. Though I know that most people my age have food always surround them. So instead I invite people over to my place and cook them a good meal, and then everyone is happy. Most people are surprised at how good Gluten free food really is.

Do you tell your dates about your food allergies? How do you go about doing that?

I do tell my dates about food allergies. At times they have wanted to go to a certain restaurant that I can’t eat anything at. They wonder why I can’t eat there so I explain what happens to me when I do eat wheat. Most of them understand and just want the best for me. Usually after that they let me pick the restaurant so that I know I am eating at a place that is fun and safe for me. My personal favorite is P.F. Changs!

Thanks Michaela!

Mom’s Comment: We have found that the colleges/universities that cost more in tuition are much more likely to have sound accommodations for students with food allergies. That doesn’t mean that a state university won’t make accommodations – but as in the case of offering an apartment as an alternative to dorm living, the alternative may not be easy for a college freshman to work with!

 

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Interview with Carlo Steinman – Age 18

Carlo, how old are you and what are your allergies?

-I am 18 years old. I am allergic to Dairy, Wheat, Eggs, Peanuts, Tree Nuts, Soy, Sesame, Fish, Shellfish, Most Fruits and Some Vegetables.

Have you ever experienced anaphylaxis?

-I have been very fortunate to have not ever experienced anaphylaxis.

Since you haven’t experienced anaphylaxis to your food allergens, how did you find out you were allergic to the foods you listed?

- My pediatrician was very good about food allergies and suggested to my parents that I get tested, when I was just a newborn, because he suspected that I was a person who was likely to have allergies.

What types of symptoms do you experience if you ingest your allergens? Have you ever experienced contact or inhalant reactions to any of the foods?

-I am anaphylactic to Dairy, Eggs, Peanuts, Tree Nuts, Sesame, Fish and Shell Fish. Wheat is a gastro-intestinal reaction. Soy and some fruits and vegetables cause me to develop hives, throw up, feel my throat tingle, wheeze and symptoms such as that. I start to wheeze and cough if I’m in the same room as an egg being cracked. I haven’t had any major contact or inhalant reactions.

Do you still carry an EpiPen or two “just in case” ? How do you carry it?

-Yes, I always carry my EpiPen. It fits right in my pocket, no matter what I’m wearing (and I wear some tight, tight pants), so it’s not really a burden to carry it around.

You’re graduating from high school in a few months. Where do you plan on going to college?

-I’ll be attending the University of Chicago next year.

Did your food allergies play a part in your choice of a college?

-No, my food allergies didn’t play a part in choosing a college. I applied to the colleges that I wanted to go to and was confident that I could make it work.

How are you planning on managing your food allergies in college? Will you live in the dorm or in another living arrangement?

-I’ll be living in a dorm. I’m going to sit down with the Dining Services and talk over my allergies and what they’re capable of doing. When I was touring UChicago I had a meal in the dining room, and they have all the allergens labeled and all the ingredients displayed, for every dish, so I’m confident that I’ll be able to manage my food allergies well and eat in the dining halls.

I’m so impressed that the University of Chicago labels all of their food ingredients in the cafeteria! Did other colleges/universities that you debated attending do the same thing? Or is UChicago special in this way?

-A lot of the schools I considered attending did the same thing, or had something similar. I’ve found that, because there are so many different special diets that people follow, college dining services are very on top of disseminating what goes into their foods and making sure that there isn’t any cross contact–a fact just as important to a strict vegan as someone with major allergies. In the past I’ve attended programs on college campuses and I can say that the dining staffs have been nothing short of great about managing my allergies.

Do you tell your dates about your food allergies? How do you go about doing that?

- I’ve found that being honest and straightforward is the best way to go. A lot of dates/get togethers happen at restaurants or somewhere where there is food anyways, so it’s not as if you can avoid the topic. Mostly, though, people already know, because if you’re friends with me (which comes before dating), you’ve almost certainly been at a meal with me. Normally, when I meet new people and they have a meal with me, I explain it to them, because they get curious after seeing me ask questions to the waiter/chef and have such plain, sparse meals.

Thanks Carlo!

 

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Emotional Aspects of Food Allergy

Remember when your child was first diagnosed with a severe, life threatening food allergy? For me, I was in denial for months before I could truly accept what a life-altering event it was. I was beyond scared, and I wasn’t sure I was up for the task.

I felt overwhelmed at the road that lay before me to practice vigilance to ensure my son would never come into contact with his allergens. I had a very difficult time trusting that even my husband could properly take care of our son.

There have been times when I needed not only a friend to talk to, but someone who truly understands food allergies and all the emotional issues that it entails. I see it as a strength when we reach out for help, and admit that we are in need of assistance.

If you are feeling overly anxious and can’t quite find a ‘new normal’ after your child has been diagnosed, you might need some help. If your child is having a difficult time at school learning how to self-advocate, or feeling helpless – then you might want to reach out for some assistance for him/her.

Learning how to manage food allergies is a one day at a time thing for us. As Morgan has grown, he has been able to take on more of the responsibility. That doesn’t mean the transitions are easy though! My husband and I are careful to monitor Morgan’s and our emotional health along with physical health. The last thing we wanted was for Morgan’s food allergies to be a stomping ground for rebellion. It’s normal for a teenager to demand independence, but do so with an EpiPen in your pocket!

We certainly haven’t done everything right through the years, and there have been times when my husband has reminded me that I need to let go more and allow Morgan more space. And I have asked my husband to be more detail oriented with label reading. Communication is key in the family unit, and sometimes that requires an outside source to help the process!

 

 

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New Spanish Posters!

So many of you have been asking for our Nut Free Zone posters in Spanish - and now they are here! A 9×12 poster laminated on both sides for durability. Great for school, camps or your place of worship! Order now!!

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