While I will continue this personal blog, join me also at www.eyeonchildabuse.blogspot.com where I am on a mission to end child abuse.

Friday, November 20, 2009

Taking Care of Non-Allergic Siblings (Dec. 2007)

When Ben boarded the bus for the first time to head off to Kindergarten, I had already spent at least 20 hours with his teacher, the principal, the school nurse and various other representatives of the school's faculty.

When Ben's sister Molly climbed on the bus the very next year for her first day of Kindergarten, I realized that I had spent a total of five minutes with her teacher in a classroom during an open house visitation.

Such is the life of a sibling of an allergic child.

Allergies are hard. They're hard on our allergic children. They're hard on us as parents. They're hard on our school systems. And they are hard on our non-allergic children.

There are many issues involved in caring for our non-allergic children.

We must think about "equitable, not equal." It is important that while we might not do exactly the same thing for each child, what we do do with them must be equitable (while continuing to foster a safe environment for the food allergic child). For some families, this means taking non-allergic children out to a restaurant, while the allergic child is on a playdate with friends.

Food allergic children also tend to receive more attention than their siblings because of the nature of allergies, so parents must make a concerted effort to devote one-on-one time with each child in the families. This lets siblings know that they are worthy of parents undevoted attention.

Additionally, there is a fine line between age-appropriate care-taking activities AND relieving our non-allergic children from that burden. Young siblings can be taught that an older brother has food allergies and we have to read ingredients. Older siblings can be taught where the Epipen is kept and how to get adult help. However, siblings never should be put in the place where they are the gatekeeper of information or they are determining which foods are safe and which are not.

There are no easy answers when it comes to parenting in general. But when food allergies complicate the situation, through communication with your partner and constructive criticism of yourself, you can raise both food allergic and non-food allergic children to be well-adjusted happy individuals.

Managing Risk (October 2007)

"Risk." It's a funny concept. Economists, engineers, insurance companies and even fraterinities all study "risk." But parents do more than study risk, they live it.

There's risk in every day life -- a car could crash into you on your way to work or your house could explode from an undetected gas leak.

Life means risk. but if we get caught up in analyzing all that could go wrong, we lose sight of all that life has to offer and miss out on all that can go right.

As parents of allergic kids, we too get caught up in the risk associated of living with food allergies. Sometimes we let our concept of risk control our lives, rather than realizing it is our job to control the risk. We must engage in accurate risk assessment.

Two ways to do this is to practice strict avoidance of food allergens, while committing yourself to 100 % access to emergency medicine. Studies show that the reality of a fatal reaction associated with food allergies is very, very small.

On the surface level, controlling your child's ingestion of food seems very manageable. But this is a myth. The omnipresence of food, the existence of cross-contamination and the growing independednce of your child make this a challenging feat.

But this isn't that different from parents all over the world who are not living with food allergies. Dangers lurk in every corner -- from strings on hooded sweatshirts to the playground at the school. We cannot remove all risk from life or our child would not be living.

Instead of fruitlessly trying to control our children's lives --making both parent and child miserable -- we must focus on that which we can control.

What we can control is educating others about the seriousness of food allergies, teaching our children about how to keep themselves safe, and ensuring our child has ready access to life-saving medicine in the form of epinephrine.

Thursday, November 19, 2009

When Will I Get it Right? (October 2007)

Oh Man! I'm eight years into this journey with a food allergic child and I still am making mistakes.

Ben turned 8 on Oct. 5th. One of the joys of being able to host his party at our house is that the menu fits Ben's needs. The only cake option for Ben's party-goers is wheat-free, dairy-free, egg-free and nut-free.

This year, we had a "Cowboys and American Indian" theme. I used my skills learned from our POCHA cake-decorating class to put out a beautiful cake (mix courtesy of Cherrybrok Kitchens carried at Target) complete with an American Indian figurine on top. It was WAY better than those rice krispy treats I had to serve at his first birthday party.

But in the moments before the party, I had a flash. I wasn't sure I had grabbed the right cake mix. I ran to the recycling bin, and dug out the packages. I discovered that I had, in fact, picked up the packages that were NOT wheat-free! Ben couldn't have this cake at his own party! Talk about your mommy guilt.

Eight years down this road and you'd think I could get it right.

But as Ben shrieked with his friends, running amok in our backyard and then gobbled up the quickie, but ugly, wheat-free cupcakes that I was able to whip up, I realized that I am getting it right.

We're celebrating eight years of a healthy, happy, well-adjusted boy. And that's what really matters. It's not about cake, but it is about life and celebrating in all its ways, and about forgiving myself for making an honest mistake.

Wednesday, November 18, 2009

The Perfect Gift (December 2007)

Each year, I relish in the hunt for the perfect gift for loved ones. I try to listen carefully throughout the year to little clues dropped by unsuspecting friends and family and delight when they unwrap a truly wanted object on Christmas morning.

But "the perfect gift" is becoming more and more elusive. Last year, I had to stoop to asking for ideas for what might go under the tree. Even when asked, many of my family members couldn't come up with "the perfect gift." Instead, they responded with "well, I guess a shirt," "perhaps a sweater," and "rechargeable batteries."

That's when I knew that sometimes the perfect gift cannot come from a store but instead must come from the heart.

I made an announcement to all concerned family members that I would not be participating in a commerical Christmas that year, and I invited them in joining me in thinking about "perfect gifts" that might be homemade. But again the reponse was underwhelming, "I'm just not creative," "What could I make?" "Do we have to?"

With this decision upon me, I was filled with the spirit. How could I seize this opportunity to show my family how much I loved them? What coudl I do to help us all recapture the true spirit of Christmas? How could I bring back the story of Jesus' birth, the grand but simple gifts of the magi and the wonderous generosity of the real St. Nick?

I tried to so some research. There were plenty of websites that offered ideas on gifts that don't cost a cent -- like the "gift of listening," but I still wanted something that I could wrap and place under th tree. I didn't want to give gifts that looked like a second-grad art project or "coupon books" never get redeemed. I was looking for gifts that would be treasured.

The heart-made gifts for my parents were relatively easy. I took a favorite photo of me and my mom and decoupaged it onto a "Useful Box to Put Things In." I researched and tracked down the ingredients for my father's favorite pie -- rhubarb -- and attempted to bake one. I put together a list of "What My Parents Taught Me" and printed it out on beautiful paper.

My sibs proved harder. I made my sister an inspiration box. I decorated a box and filled it with 31 strips of paper with daily affirmations and declarations of my love and admiration for her. For my brother, I put together three easy to cook recipes and gathered all the needed ingredients.

Christmas morning came. Colorfully wrapped gifts burst from under the tree. There was the usual melee as people passed out their presents. My heart-made gifts were well-received.

My parents joined with me in eschewing store-bought gifts. They had worked together compiling a scrapbook for each of their three adult children. The books were filled with memorabilia from their personal histories, as well as photos and school work from our own unique personal histories. they were a surprise and provided the opportunity for each of us to relive our childhood together. They were a reminder of what is truly important in this world -- family.

I don't know what this year's Christmas will hold. I know that I have told my family how much they mean to me. I know that they know I love them. So will I turn back to looking through the malls for the Perfect Gifts for my loved ones? Perhaps this year, we'll figure out a way to take the Spirit of Christmas out into the world and give not to each other in our small family -- but as a small family find a Perfect Gift for others in our big family in the world.

Creating a safety net (January 2008)

It's been four years since Ben's last anaphylactic reaction, but we couldn't get out of 2007 without one.

Although we have struggled with Ben's school this year, the mistake was one that couldn't have been predicted. For some reason, Ben's younger sister Molly assumed that the cheese in her lunch must have been meant for her brother. She gave it to a cafeteria worker who then gave it to Ben. Ben took one bite and realized immediately that it was not his soy cheese.

He also realized that he was in trouble.

Long story short, it was a good learning experience for us all and I am grateful to enter 2009 with it under our belt.

Although Ben initially resisted the Epipen, when we finally did give it to him, he realized two important things. The first was that the Epipen wasn't as bad as he thought it would be AND the second was that it did make him feel better immediately.

Hopefully he also realized that his allergies are indeed real and serious, and that as he moves into the pre-teen years he does not need to question us about them or do his own experimenting.

As his parents, the incident confirmed several things for us as well. One is that Ben's symptoms of an anaphylactic reaction are NOT dramatic. His throat "felt dry;" he had some hives and he was abnormally quiet. That's it. There were no swelled lips, no dramatic gasping, no blue tinge to his face, but it was a serious reaction nonetheless.

We also confirmed that we are not crazy. We are not some overprotective parents exaggerating about his allergy to milk. His allergies are real.

Through this experience, we also discovered that while the main players at his school do know what to do in the event of a reaction, it is the supporting staff (those with a high turnover rate) that made some serious mistakes. The assistant that Ben told about the reaction, urged him to return to his table, put his head down and rest. The school must be held accountable for making sure these people are trained in handling our children's food allergies -- even if that means that training must occur more often than once a school year.

We also discovered that you must teach your child how to get help and be persistant until you get that help -- even if a grown up gets in his/her way. After Ben was told by the assistant to sit down and "rest," he decided to leave the cafeteria and find someone else to help him.

Finally we learned that there are going to be mistakes made. However, if we work with the school we can create a safety net that catches Ben when somebody in his life (including himself) makes a bad decision. Until there's a cure, that's really as good as it can get.

Monday, November 16, 2009

Grocery Store Melt Down (August 2008)

Oops, I did it again. I caught myself moving towards tears in the aisles of Whole Foods.

When we learned about the extent of Ben's food allergies (now eight years ago), I was overwhelmed with trying to find food to feed the kid. I spent hours grocery shopping at multiple stores.

As the years wore on, grocery stores seemed to get that there was a demand for different products. I was even buying wheat-free "Tapioca Loaf" at my local Kroger.

But alas, I guess I am not a big enough market for the grocery stores to continue to stock for; and slowly, trip by trip, my regular purchases have been disappearing from the shelves. I am once again returning to multiple stores and ordering food online as well.

And hence, the tears. The allergy thing -- just when I think I have a handle on it something changes. And as I typically do, I tried to look for the life lesson that is hidden inside this super annoying frustration.

This is what I came up with. This allergy thing is just like all of life; it's unpredictable and I am not in control.

It's no different than just the act of parenting in and of itself, regardless of allergies. Just when you feel like you have a handle on rearing your children, something changes. Whether it's a new skill learned by your child, a new challenge like orthodontia, or a new demand for increased independence, life with children is full of trials. I am not in control.

We must figure out a way to adapt and continue to go with the flow; doing the best job that we can. There is no choice here. This is just what it is.

So I can fall to tears in the aisle of Whole Foods or I can suck it up; laugh at myself and ask myself how am I going to conquer this new obstacle.

This allergy thing -- it keeps me growing.

I can cry at the grocery store, but at the end of the day I need to pick myself up and know that an obstacle is just something to get over.

Sunday, November 15, 2009

Power of Forgiveness (April 2008)

The other night I watched a movie that changed the way I think.

The documentary is called "The Power of Forgiveness," and its central theme is that forgiveness, while complex, is an essential component to forward progress. In particular, there was a part of the movie that talked about how the concept of "justice" may stand as an obstacle to forgiveness, and thus impede movement forward in life.

As a parent of a child with a special need, I find myself often focused on justice. I try to prevent times when Ben is "left out" because of his dietary needs, and I am guilty of storming in when he is indeed left standing on the outside of some event in his life.

More often than not, I find myself fuming about "Why don't they get it?" "How come parents feel liked their kids need to eat something every hour on the hour?" "When did life become so food-centric?"

And that fuming really leads to nowhere. I can, in fact, incite any of my allergy friends with a call and a retelling of the latest infringement, and then I get them fuming, both of us now going nowhere.

And then, after watching this movie, I had an epiphany. While "justice" is an important piece of the puzzle, it is only one piece. Forgiveness must be a piece too. Neither piece is more important than the other. And one cannot complete the puzzle of moving forward in life without both of those pieces.

It sounds a little overdramatic to say that we must "forgive" those who wrong our children. It also may sound a little preachy. But I am convinced that I, myself, need to spend more time connecting with forgiveness and I need to pass this on to Ben as well as Molly and Phillip.

I think we must actively incorporate forgiveness into the way we think with our children. We need to share the power of forgiveness and that forgiving someone is a choice you can make to regain your power. One does not have to "feel like" forgiving, because forgiveness is a choice and not a feeling. Forgiveness is instrumental to progress.

But I am a practical person -- many of you are probably saying, "That's great, Erin, but how do we actually do this?"

I'm a big believer of using literature. From Amish Grace for adults to Franklin Forgives, Mad Maddie Maxwell and Lilly's Purple Plastic Purse for young children, there are lots of titles that can start the conversation rolling.

Books for older children include Shiloh and This is Just to Say (a book of poems of apology and forgiveness).

Futhermore, the movie featured a school in war-torn Ireland that makes use of "forgiveness glasses." They encourage children to share their hurt, put on the glasses and then share something good about the person who actually hurt them.

I also ran across a poem to teach forgiveness to children. It goes:

Good thought
Hurt you not
Gossip never
Friends forever

I'm not going to give up striving for Justice. I will continue to work to educate people about living with food allergies, and strive to make our world a little less food-centric and a little more accepting of our allergic children, but I will also work to actively forgive those who knowingly and unknowingly work against me.

Saturday, November 14, 2009

Real World Test (December 2008)

I just got back from the Colts game vs. Cincinatti. It was just Ben and me, and we lucked out with fourth (yes, fourth!) row tickets. We had an amazing time.

Preparing for the game, I made Ben a wheat-free soft pretzel -- similar to those sold at the stadium. We also picked up some "safe" candy. When there, we stood in line for the prerequisite $4 (yes, four dollar!) soft drink. I had our Epipen safely packed in my bag and we settled in to the first quarter.

It was an amazing experience seeing the action that close AND being one-on-one with my first born where he doesn't feel like he has to compete for attention with his silbings. It was a real jor.

But during the second quarter, the dopes behind us became increasingly drunk. I winced as four-letter (yes, four letter!) expletives flew. I encouraged Ben to just focus on the game, and I tried to do the same.

Then I put my arm around Ben and I realized that his chair was covered in peanut shells! ARGHHHH!

I quickly and surreptiously swept the shells onto the floor and then tried to casually push them on the stoop below us. The biggest loser behind us noticed my contortions, and sort of offered a half-apology. I muttered to him that my son was allergic to peanuts and would appreciate it if he could just put his shells on the floor rather than my son.

Ben didn't really notice this conversation, and while I could have made a really big deal and asked them to put the peanuts away (offering, of course, to buy them an alternative snack), I decided not to.

I wasn't chickening out (one dude did run about 6'4" and 280 lbs), but I was trying to listen to our allergist, Dr. Holbreich.

I had just been with Dr. Holbriech at the Indianapolis Hebrew Congregation that mroning talking about food allergies, and he once again emphasized that the majority of peanut-allergic kids can be in close proximity to peanuts and peanut products and still be safe. Since I know that Ben can eat at a table with someone else eating peanut butter, I took a leap of faith.

And I knew I was prepared -- we had Benadryl, our Epipen and my cell phone. Ben wasn't aware of the situation -- so his anxiety wasn't kicked into overdrive...and I was managing mine.

We continued to enjoy the game.

There were great plays right in front of us. I enjoyed chatting with the Bengals wives that I was sitting next to, and Ben drank all of his $4 Sprite.

At the end of the game, Ben finally noticed the peanut shells under his seat. I told him that the people behind him had been eating peanuts the whole time and he had been fine.

It was a big moment for both of us, as we realized that sometimes we let fear of a reaction affect our enjoyment of activities -- and that hadn't happened.

With one minute left in the game -- one of the losers dumped his entire beer into my open jacket, but that was the worst thing that happened. I was going to have to wear my jacket inside out on the walk back to the car in the 4 degree (yes 4 degree!) weather.

We had completed a real world test of sitting basically in peanut shells and Ben had not reacted in the slightest way.

It was an amazing thing.

The Silver Lining (April 2009)

Living with allergies is exhausting.

Making breakfast, lunch and dinner every day wears on me. Having to make phone calls to every thing I ever want to sign Ben up for wears on me. Ensuring that we always have some Benadryl and the Epipen wears on me. And jumping every time the school calls just gets old.

But somehow, when I am at my most worn out by the whole allergy thing, I see the silver lining.

Recently one of the moms in Ben's class shared a story with me. She was in charge of the "Winter Party" at school. We had connected about what Ben could and couldn't eat, and I had, of course, offered to assist. But she wanted to take it on... alone... (this is not the silver lining, but rather a warm fuzzy).

She had an idea about this fun crafty food idea that she wanted to make. You know one of those "Gingerbread House" experiences often featured in parenting magazines. But she couldn't quite figure out how to make it work given Ben's limitations.

So she thought some more.

And in that second thought, forced by Ben's allergies, she decided that the perfect winter party activity would not be some junky, but oh so cute, snack-craft activity, but rather it would be having the children assemble soup kits tht would in turn be given to a homeless shelter or food pantry in Indianapolis.

The party was a hit. The kids worked together to use their measuring skills to fill Ball jars with a variety of dried ingredients -- peas, noodles, spices and the like. They also made cute label cards to accompany the soups. Then the kits were delivered into the community where they provided a hot meal to over 500 people!

In that moment, the mom realized that because of Ben's allergies, she was forced to take the road less traveled. And that road less traveled ended up having a far wider reach!

It is a journey worth going on and we are lucky to be on it with our group of special kids.

Friday, November 13, 2009

Going Radical!

I've turned into a bit of a radical after a trip with my 10-year old son to National Jewish Hospital in Denver, CO. We were there for a 10-day outpatient program designed for children with allergies, eczema and asthma.

Before I went, I lived in fear of food. Now I refuse to live that way.

And this standing up to the fear has changed the way I interact with other food allergic families. Now when I meet newly diagnosed families that present a laundry list of food allergens that their child has, the first thing I ask is, "how do you know s/he is allergic to those foods?"

The old me would have just listened.

And I suspect asking "how do you know..." comes off as harsh, but as a parent with their own laundry list of allergens, I think it's a question that needs to be asked.

I wish it was a question that doctors spent more time asking, because the science behind food allergies is changing.

When Benw as diagnosed 9- years ago, the overwhelming medical philosophy was "avoid, avoid, avoid." Not only were we taught to strictly avoid his allergens, but we were also cautioned to avoid foods that were highly allergenic and could create more allergies.

I know this philosophy still exists. I talk with plenty of parents who say, "We're allergic to peanuts, so we're also staying away from tree nuts."

The new radical in me says, "Whoa! Let's think twice about this."

I understand this thinking completely. If you've ever seen your child react to a peanut, there's the inherent fear of all nuts. Fear is something which can be paralyzing.

Secondly, figuring out if your child can actually eat tree nuts requires a lot of work as that group contains walnuts, almonds, cashews, hazelnuts, brazil nuts, just to name a few. It's so much easier just to avoid the whole group.

Lastly, it is difficult to buy tree nuts that do not contain a peanut cross-contamination label -- however it is possible. Blue Diamon makes a "peanut-free" almond. You can also purchase the nuts whole and shell them yourself. Personally, I've picked up shelled cashews for Ben at Whole Foods and he has safely enjoyed them as an after school treat.

So the new radical in me says that children should be eating all that they CAN be eating. Not only from a nutritional standpoint, but also in order to actually avoid developign new allergies from such limited exposure.

I use our experience with wheat to illustrate this point.

Up until 18 months old, Ben ate wheat. He had pretzels and pasta, Cheerios and other wheat-based but dairy-free cereal. We thought he was only allergic to dairy and peanut. And actually, he ate wheat without any noticeable major response from his immune system.

Now my caveat is, at 18 months, Ben was a drippy kid 9still is) and his eczema was still fairly active (no longer true).

However, when he ate wheat, he had no hives, didn't complain about an itchy mouth, didn't vomit and there was no noticeable worsening of his eczema. There was no immediate immunological response to Ben eating wheat. We had, in the past, witnessed immediate immunological responses from Ben eating dairy.

However, at 18 months or so, we had a blood test that indicated that he was highly allergic to wheat and the dotor counseled us to take it out of his diet immediately.

We did. Subsequent tests indicated that he was also allergic to barley and rye and those went from his diet as well.

By age two, Ben was completely "gluten-free," although his doctor was careful to explain that he was actually fine with the gluten and really just allergic to the protein in each of these grains. At age four, we accidentally washed Ben's hair with a shampoo that contained wheat germ, and this time we did see an immediate response. He was crazy sneezing! This reaction confirmed to us his wheat allergy and we increased our vigilance, keeping him away from airborne wheat as well as ingested wheat.

But in the back of our mind was always the nagging thought that this kid had been successfully eating wheat before we took it out of his diet.

So at National Jewish, we had the opportunity to challenge Ben to wheat in a safe and controlled environment.

we had seen the blood test numbers -- they were extreme. We had the skin test result -- it was enormous. But in this safe environment, we wanted the answer to the lingering question, "What happened to that kid who used to eat wheat?"

So we tried a gram of pasta. I chose pasta because with many allergens cooking actually changes the protein, so I thought perhaps the cooked form of wheat would be more tolerable to Ben. I also chose pasta because if we could get regular pasta back into our lfie it would definitely open up more doors for us.

A gram of pasta is incredibly small. It's like two threads of pasta that are a centimeter each. It's really really small.

But Ben's reaction to it was really really big. That tiny bit of pasta caused him to immediately start biting his lips ferociously in an effort to get them to stop itching. A dose of Benadryl stopped the reactin, but confirmed that at this time in his life, Ben is truly allergic to wheat.

The allergist reclassified his reaction to wheat s one that has a high potential to be anaphylactic in the future.

So what happened to Ben? My husband and I believe that we had some hand in creating this allergy because we took wheat out of his diet without asking the right questions. We believe that while he may have had identifiable IGE in his blood at age one-and-a-half, he probably was creating his own tolerance to the food through small exposures.

Amazingly, I carry no quilt about this as I can honestly accept that science has changed over the course of ten years, and that we were doing the best with what we had.

However, now I caution families that beofre they decide not to eat something, they need to ask the right questions.

Science is constantly changing, and continues to be open to personal interpreation by medical personnel.

For me, based on my experience in Denver, plus the 10-years we have been living this crazy life, I believe that you need to see a blood test AND a skin test AND then talk with your professional about doing an actual food challenge.

Particularly if a doctor is telling you to remove a food from your child's diet and you have never seen an identifiable immunological response to this food, a challenge can be done safely. Remember, Ben was fine after his does of Benadryl. The reaction did not progress further.

In addition to insiting on using these three tools of diagnoses, I really encourage families to get a second opinion. If a doctor is recommending you pull three or four major foods from your child's diet, ask another professional if s/he agrees.

It's a big decision that may have ramifications down the road. Tread carefully my friends, tread carefully.