What is a trial?

In many of my posts I mention Gabriel 'trying' a food.  Most parents ask their kids "just try it" to see if you can get them to eat the asparagus.  For us 'trying' or 'trialing' a food has a whole new meaning.

Gabriel has Eosinophillic Esophagitis, and also suffers from severe life threatening food allergies.  When we try a food, it's a risky process that is done with the supervision of a doctor.  Each kid with EoE has a different process for trialing a food, depending on the kind of reactions they have, they're doctors advice, their age, risk factors, etc.

Over the last 18 months we have trialed:
strawberries
pork
lentils
pineapple
broccoli
squash
sunflower seeds
string beans
artichoke
turkey
beef
chicken
apple

This trying, scary, emotional process starts with blood work.  The doctor runs a test- that does not require putting food proteins anywhere near Gabriel, to make sure that it would not cause a life threatening reaction.  IN rare cases, children can actually suffer dangerous reactions to skin tests, so blood work is the safest way to start.

This is Gabriels scratch test after just a few seconds.
I did not get a picture at the end because I spent
the next 10 minutes fanning and consoling Gabriel until it was
 finally taken off at about 5 minutes.  

Once we've passed blood work we move on to scratch tests.  This is where the doctor takes a sharp plastic device, and scratches the surface of the skin and applies a liquid version of the food proteins to the scratched skin.  The skin is checked at 10 and 20 minutes.  IN the most severe reactions, a welt grows in the first 30 seconds. To make these tests a little more complicated-  Gabriel must be off steroids and antihistamines for 5 days before the test.  yikes.

Patch testing in progress

Gabriels reaction to patch testing tape

Patch tests.  Patch tests never work out too well for us....  Because many eosinophillic reactions are delayed response, it is important to test for a delayed response.  To do this, the doctor applies a special patch to the back with foods on it.  It stays on the skin for 3 days, and then is removed, and checked the 4th day for a reaction.  Gabriel is so allergic to the adhesive, that this is typically a traumatic week of screaming, crying, and flailing around- trying to reliving the burning stabbing itching covering his whole back.  Our last patch test was so welted from the adhesive alone, that the food results were not readable.







After all 3 tests, the allergist and I sit down and compile a list of foods that didn't show a reaction on any of the 3 tests.  While the tests and not incredibly accurate, and there is still a high likely hood that Gabriel can not tolerate the foods, the foods that did not cause a reaction during the tests are the least likely to to cause a reaction when eaten.
We choose which food to try first either by the highest nutritional value, or by Gabriel's choice.  This is always a balance over 'quality of life.'    When we have finally chosen a food to try- it's an even bigger ordeal!  I go to the store and debate for a whole hour 'do I buy a lot cause we're just so excited? or do I just buy one package incase its a fail?'  We have to wait until Gabriel is completely symptom free from any other seasonal, food, airborne, or illness reactions.  Once he's feeling great, we prepare the food together and cross our fingers.  We start slow.  Just one serving the first day.  If we are trialing a meat, I make a broth first, to make sure his body can handle it.  In a journal, we record and describe every bowel movement, every itch, every feeling, emotion, and complaint.  Some food reactions are very obvious-- rash around the moth, swollen lips, hives on his bottom, etc.  Other foods hide.  The send an army of white blood cells to attack his esophagus.  His esophagus begins to narrow in size, grow scar tissue and ridges down it, and affect his esophagus irreversibly, and eventually his ability to swallow.  These reactions we don't always know about until the doctor scopes and biopsies his esophagus.  While we cant see these reactions from the outside, they are just as dangerous.  If reactions are present, the food is removed immediately.  So, some trials last only one week, and others can last as long as a month.  Then comes recovery-  A new food can not be tried until he completely recovers from the previous reaction.  ...

Phew.  Welcome to the world of food trials.  Next time you go to an exotic cafe, and you get to try a new food---- Just imagine, for a second, if this is what trying a new food meant for you.

Oh and by the way, we failed everything on the list.

And so I hate the Grocery Store

AT home, I keep an entire shelf full of rice.  really.  I have a 20 pound bag of white rice, I have 6 different kinds of noodles made from rice, plain rice cakes, and puffed rice.  I also have a mean stash of potatoes.  I mash them, fry them, shred them, grill them, bake them...you name it.   When we're at home, it almost feels like the kid who can only eat 2 foods, has quite a few things to choose from.

I've thrown out all the milk.  Yogurt is gone.  No more cheese, or ice cream.  Of course, these have never been foods that Gabriel can eat, but suddenly, he can't tolerate being around them.  There are no worries at home, though.  Gabriel has a fridge full or formula, a cabinet full of rice, and cupboard full of potatoes.  There are no food that threaten his life in our home, and just in case, there is an entire cabinet full of medicine right next to the food.

this is why I cant look you in the eye at the grocery store

Eating is recreational

"No news is good news" seems a bit outdated in this day and age.  I am learning quickly that if you don't hear from me often and frequently it is probably because I am wrapped up in some not-so-good news that is taking the focus of my attention.  I haven't blogged in months, and not for good reason.  I have so quickly gotten so wrapped up in my Mommy, caretaker, housekeeper, doctor, nurse, chef, inventor, nutritionist, financial advisor, chauffeur, and teacher rolls that I have forgotten about "blogger."

Good things don't always last forever, but I can say that we enjoyed it while it lasted.  For a few months, Gabriel had been coasting on a good rhythm.  We had 20 solid foods that he could enjoy, we had a regimen (long, expensive and difficult none the less) but a regimen or medications to keep him under control, a freezer full of safe meals prepared in advance, a home school system to keep him up on his curriculum, and routine that seemed to be working for a while.  It almost, for a moment, began to feel like we were normal.  

FOOD!

Getting the most out of his raisins

a G2 Party!  Gabriel finished 2 whole bottles of no calorie gatorade in 5 minutes!

plain Rice cake triple stacK!

This kid loves to eat!  Since Gabriel is limited to 3 foods right now, He really knows how to enjoy those foods!

A Family Affair

Day 22 Days in, and Gabriel is eating 3 foods.  3.  For nearly a month.  And these aren't foods with many ingredients, or 3 foods, with many beverages... 3 basic foods, without additives, favoring, or anything.  Gabriel has been eating Rice, berries, and beef now, successfully for quite some time.
I opened the pantry today, and felt a waive of anxiety.  Gabriel's cabinet is bare.  Plain rice cakes, raw rice, rice noodles, and rice cereal is all.  As grown ups, we cant stick to a well balanced weight loss diet with chocolaty meal bars and diet ice cream for a few weeks, and now, I watch Gabriel take unsatisfying bites of his plain, dry burger patty without complaining.
Last week, my sister and her family came over.  We were so happy to play with the cousins, and spend some quality time with supportive family.  For the first time, she did not come with 4 bags full of snacks, juice, and treats.  She walked in empty handed, and said "I'm hungry, can you make some more rice?"

Without being asked, or persuaded, without discussing it, or binging before she came, she walked in, with her 2 small children and Gabriel's uncle, prepared to eat like Gabriel for a day.  We let beef simmer int he CrockPot, and all together, ate 5 pounds of rice. And we did for lunch, and dinner, and snacks in between.  And for an entire day, Gabriel never once had to look at what someone else was eating, or smell, or wonder about how something might taste.
I think at 5 years old, he has no idea how much support he has.  No one ever said "Gabriel, were eating like you today."  and no one ever asked him how he felt, but I can tell you he smiled more then he had in weeks.

elimination

A few weeks ago- Gabriel started feeling very Ill again.  He didn't have energy, and lost his coloring.  He would frequent the bathroom, and flush before I can ask how it went.
Gabriel is old enough to understand what happens when he's not feeling well.  He knows that it begins with the doctor, tests, and ends with taking away another one of his few precious foods.  He's old enough to know that he hates the process.  But, Gabriel is still too young to understand that it has to happen.  Too young to get that it gets worse, and his body gets more sick if we don't do something.
So, we get stuck in this pattern of denying diarrhea, other symptom,  and lying about how he feels.

Gabriel and the case of the Itchy's

For about 2 weeks now, Gabriel's been fighting off mild reactions to a food that we haven't been able to pinpoint.  He lies about having diarrhea, and casually mentions 'throwing up a little bit.'

I know that these are all signs of bigger things to come- so I'm trying my best to find to culprit, and remove it from our lives!
 With a diet that is limited to about 20 foods, you would think the detective game would be easy, but delayed responses, an embarrassed 5 year old, and working full time makes it harder than you'd think.
The fear is bigger than the symptoms.  On the inside of a little boy with Eosinophillic Esophagitis, problems are bigger than they appear.  Gabriel's esophagus could be growing smaller everyday.  It could be lining its self with scar tissue, making it harder and harder to swallow.  It could be ineffective, and passing all food through his GI tract, without absorbing any vitamins or nutrients.  And it could cause permanent damage and affect his ability to eat.  So we continue to play this game, log his food, record his symptoms, and cross our fingers that we figure it out sooner rather than later.

This morning, Gabriel sat on the couch, watching cartoons.  He stretched his arm over his shoulder and scratched his upper back.  I watched him as he started to wiggle his itchy skin against the back of the couch.  "I'm Itchy!!!!!"  he yelled.  And so it started.  Gabriel drank his first dose of benedryl, and let me rub hydrocortizone on his back.  He whimpered, and begged me to scratch where he couldn't reach.  For Gabriel, The itchys are not like itchy dry skin, or an annoying mosquito bite.  The itchy's, for Gabriel, are a whole body, painful itchiness that can not be relieved.  If you've had chicken pox, or poison oak, and you've suffered from the painful to scratch, unsatisfiable, distracting, burning, taking over kind of itching, then you know exactly what I'm talking about. Gabriel cried, and was in more pain by the second.  I was out of ideas, and desperate to help.  "quick, lets jump in the pool,"  I'm still not sure if I was hoping to wash him off, or distract him long enough to keep him out of misery.  He ran outside, and dropped his pajama bottoms as he ran to the pool.  As he swam, I could see his back turning redder and redder- and growing bumpier and bumpier.  He didn't complain for two whole minutes.  Then the wiggling started again.  "Its not woooorrrrrrkkking!"

I was out of ideas and didn't know how to help him.  Dose number 2 of benedryl.

I keep thinking about the white blood cells that cluster into bumpy itchy patches on his back- and imagine what they are doing to his insides.  For now the itching has passed, but his scabs, scratches, and bumps still cover his back, and remind me that there is something bigger going on inside his belly.

On days like these, I remind myself how well Gabriel is doing.  These days are much fewer and farther between.  There was a time, when itching would have been a blessing compared to what he faced.  So, for now, I'm just hoping this doesn't bring us there again.

Kindergarten

When I remember my first day of school- I remember waiting outside with my sisters, and Jesse (our best friend, and neighbor.)  During the long wait for the bus, I  tried to sound out what my soon-to-be teacher's name was, relieved that Jesse's name tag had the same teacher's name on it.  I was proud of the way my hair was combed, and wore a special dress, that I got just for today.  Everything seemed to go in slow motion- but maybe it was because my heart was beating so fast.  It was scary.  It intimidated me to know I was going to walk into a room of kids, hopefully the right room, and we would all stare each other down.  With in seconds, you decide who is going to be your best friend for the rest of the year, and you'd have to make sure to find a seat right next to them.  As soon as the teacher spoke, you'd wonder if you should be scared, or excited.  "Is this one the nice teacher?  Or did I get the mean one?  Where's the bathroom?  How do I sharpen this pencil?  When's lunch?  I miss my Mommy. "

Our school experiences create who we are.  Your personality, and view on life if affected by your classmates, your life-changing teachers, and your September through June lifestyle.  Think about your childhood for a moment- and imagine what it would be like if you took all of that away.    What would that look like?  How would that feel?  Would you be insensitive and selfish from too much time spent alone?  Would you be a bully, because you've never been picked on?  Could a life without those numbing, embarrassing days make you overly sensitive, and emotional?  I couldn't imagine, and my guess is as good as yours.  But I can tell you one thing for sure, A life with out school would change me.

With out school, a child wouldn't know the basics:
Girls are stinky
lunches are for trading
don't sit there, its for the big kids
share
being nice get's you far
no one likes a brown-noser (except the teacher)
How do I compare to others?
It matters how I compare to others
play by the rules
be friends with the kid who has none
how to be a friend
who is a good friend
how to play kickball
and 4-square
how to deal with people...


I signed Gabriel up for kindergarten today.  And submitted a doctors note saying that he would not be attending. For a moment, I questioned my judgement, and the doctors judgement.  I wondered if this is really what's best for Gabriel.  I thought about my first days at school, and realized all the he would be missing.  I sighed, and looked around.  "wow, this would be a nice school to go to," I thought.  I felt like I was making a terrible decision.  The office administrator handed me some information and said "Although he wont be attending, you are welcome to attend orientation."   "Great," I said.  "Thank you. Will there be food there?"  She answered, "Oh, yes.  Theres always refreshments," having not a clue what Gabriel's health challenges were.
I forced a smile and walked away. "That's right,," I thought.  "Food."
Gabriel's villain.  His bully, bad guy, and all of his fears.

 I felt more terrible, and played scenes from my elementary school experiences through my head. As we got in the car to drive away, tears ran down my face, and I knew.  This was absolutely the right decision, this was the only way.

homeschooling it is...

Wow we've had a rough week.

Once again, Gabriel and I are incredibly blessed to have such an amazing auntie and uncle to support him when the going gets tough!

Gabriel's allergist reccommended that Gabriel be homeschool in October of 2010.  I resisted, but after ongoing reactions from school, I realized that homeschooling would be the safest alternative.
This brings us to today.  As a single income household, It can be a struggle, affording at home care (which is significantly more expensive than daycare), but we manage.  We have a wonderful Au Pair (nanny for another country) living with us for the year.  She understands Gabriel, is sensitive to his needs, and cautious with his health.  So far, so good!

In some recent phone calls to our local school district, I've learned that 'homeschooling' and 'the doctor said I need to homeschool' are significantly different.  Homeschooling means that you choose to keep your child home, therefor are responsible for their education, curriculum, and progress.  When the doctor says it's a must, our school district provides curriculum, a teachers instructions 5 hours a week, and all the benefits that are offered in public school, that my tax dollars pay for.  That god for the ADA and for the schools efforts in making this possible!

IN order for our Allergist to comfortably declare in writing that Gabriel must be comfortable, he insisted another round of testing.  This time, we tested his skin for contact allergens.  This does not test reactions to foods you eat, only reactions induced by touching.  Unfortunately, this test lasts 4 days.

The nurse- who has been applying Gabriel's allergy tests for 5 years now- Applied 20 patches of different foods to Gabriel's back, and secured it with paper tape, because Gabriel's skin is so sensitive.  Instructions were to come back in 48 hours for a reading, and then in 72 hours for a second reading.   Before we made our way out of the office, Gabriel squealed at how terribly itchy he was.

Day one- Doctor OKay'd benedryl during this test.  Thank goodness.  Gabriel slept a lot this day.  Woke up, itched and scratched, and went back to sleep.  He was uncomfortable, and I empathized.

Day two- Gabriel was itchier, so I upped the benedryl dose. (I hate having to do this.)  I hated the idea of going to work.  I know he's tough, his tolerance is high, and grins and bears it as best he can.  But Mommy could tell he was uncomfortable.  Hours later I get a phone call at work.  Gabriel can not stop screaming.  Not crying, whining, or whimpering.  He is screaming in pain and discomfort.  Knowing what his tolerance was like this made my sister more worried.   He was so focused on itching, and wiggling it looked like he was seizing.  I called the doctor and he approved more benedryl.  No relief.  I felt guilty, and my sister described this as torture.  I told her to remove the test.  His back was welted and blistered.  I came home.  The loving auntie was in sympathetic tears.  Gabriel was beginning to feel better.

Day three- The nurse reviewed the test today.  It was removed 14 hours early.The test was only left on for an unaccurate 40% of the required time.   She noted a significant reaction to oat.  Really Oat?  Oat, like in oatmeal bath, Aveeno cream, shampoo, handsoap, dog food, tortoise food, and cosmetics.  The most significant blistering was from the tape that the test was applied with.  Hypoallergenic, adhesive and latex free paper tape.

Day four- Final read.  Doctor reviewed the results and reminded me of the importance of avoiding contact with any of the reactants.  We talked about tape, and other options.  I asked about alternatives in the case of blood draws, his annual surgery, and IVs.  The only way to test for these tapes would be to perform another patch test, that would have to be attached with tape.  No thank you, we'll pass.

The Allergist wrote a note, prescribing Gabriel to be homeschooled.  We walked away as Gabriel skipped down the sidewalk, and showed off his sticker.  It was over, and he couldn't have been happier.

Watching him climb up the bike rack, and jump back down onto the sidewalk, I was reminded of how little we can tell about someone by looking at them.

Are we working against each other?

My sister told me a story today.  She was at a social event a met a mother, and a vibrant young 7 year old who reminded her so much of my Gabriel.  In talking, my sister learned that not only did she have  a similar vibrant spirit,  this little girl suffered from allergies and anaphylaxis like my Gabriel, as well.

My sister was so excited to find a friend for me.  Someone to share recipes with.  Someone to ask for advice, or recommendations about doctors, meds, or diet.  Someone to share 'safe' place to go in public.  Someone to share my fears with, and most importantly, another child for Gabriel to relate to.
As my sister told me about the family she met, she sounded excited.  She was happy for me, and sincerely thought that this could be great.

As she continued, I was quickly disappointed, but not surprised....
It sounded so much like the conversations I often have.
In public, I might mention "Oh I'm sorry, he can't (have, touch, go).  Gabriel is allergic."
More often then not, the response I get from the stranger at the store, park, or event that we are at is "oh, yea, my (nephew, sister, dad,..) has allergies, really bad, though."
Typically, I nod and smile and say "wow Im so sorry"
The response that I hear most often? "Oh Yea.  (he, she) is allergic to EVERYTHING.  (he, she) has an inhaler,  and stuff. Yea, its really bad, like really bad."

My sister continued to tell me about the family she met. My sister was so excited to have a common ground for this mother and I, that she shared "my nephew, he has eosinophillic esophagitis, you should talk to me sister."
The answer she got?  "oh, well, we got Lucky.  We have the total package.  She also has asthma and eczema."
And again, my sister was so excited to share "You should read my sisters blog!  She shares recipes, tips,...it would be great for you to be in touch"

I will not quote the final comment, but I can tell you that it was a bit negative.

I am not, by any means, intending to mock anyone.  I agree, allergies can be very bad, and more often then not it can feel like we are allergic to everything.  I don't care what foods are worse to be allergic to, and I will never care who is allergic to more.  Listing diseases and symptoms will never be something I try to do, and competing for the worst case is never ever something I care to be a part of.  Why, so often, does it feel like other are competing?

I write to educate, and spread awareness.  Like cancer, Alzheimers, or PID, awareness and education is key.  The more people aware, the more research, the more research, the more solutions.  Education and public awareness also come with public sensitivity, options, and more safety for our children.  I am not ashamed to share about Gabriel's health, because I'd like to spread awareness.  I am happy to write all that I've learned through my own trials and mistakes, to help educate.  I get excited when I meet another mother that I could possibly share recipes, safe babysitters, and great doctors with.

If you or someone you know has allergies, or asthma, guess what?  We are on the same team.  I empathize for you, and I care about your child's health and safety.  I want to hear about your experiences, and I will listen to your fears.  We are on the same team.  Only when we feel like we are, will we begin to make significant progress in awareness and public education.

Then, maybe someday, will the airlines finally stop serving peanuts.

Creative Cooking

I've always been a fairly creative person.  I choose an artistic field for my profession, and I always favored art classes in school.  Never would I have imagined using creativity in this way!

Cooking without specific ingredients can either leave you with a crumbly mess, or force you to think out of the box.

After spending the morning concocting a Hawaiian Sweet Bread, and a Mango Cake with out milk, butter, flour, eggs, corn (corn is also in baking powder), soy (or bean flour), vegetable oil, shortening, .....ect ect ect.... I've decided to share my most successful discoveries with you!

Milk and cream-  Soy milk is a no-no for us.  So is Almond milk.  If you can use either of those, I hear they work great.  Rice milk has proven to be a bit too runny.  The most successful substitute I've used for milk is coconut milk.  Coconut milk is a mixture of coconut water and pureed meat.  It is think and creamy.  Even in pasta sauces, you would guess its from a fruit!  The coconut flavor is very mild, and easily disguised by other ingredients.

Butter-When avoiding corn milk and soy, it can be impossible to find a margarine that is safe.  For a while, I used Spectrum Organic all natural vegetable shortening.  It is made from pressed palm oil.  This shortening is pricey, but works well when recipes call for butter or shortening.  My favorite substitute is coconut oil.  Coconut oil is a natural superfood with hundreds of uses and health benefits.  It's loaded with fatty acids, and amino acids (great for someone who cant take fish oil!) Coconut oil is a solid at room temperature, so it serves as a great butter substitute.  It melts at 80 degrees.  For baking, this can cause some runny-ness.  I use coconut oil whenever possible.  It, too, can be very pricey.  I think it is well worth the expense!

Egg- I've faced the facts.  nothing, nothing substitutes an egg.  Somethings get close, but nothing will whip like an egg white, that for sure.  In baking, I have 2 go to egg replacers.  One is Flax seed.  Miz flax seed (also, huge for health benefits!) with enough water to make a paste.  With in minutes, this will turn into a gel that works well as an 'egg'.  Flax seed has a nutty, fibery taste.  I love to use it in breads, and when flouring meat.  For cakes and pastries I prefer Ener-G egg replacer.  It is the only egg replacer that I've found in stores that does not contain another ingredient that we must avoid.  It is a powder that is mixed with water.  It is tasteless.  Both of these substitutes will leave batters and doughs looking runny.  Don't worry, they will still bake into a solid cake!  I have that applesauce works well, personally, I do not prefer it.  

Baking Powder-Hain gluten feee baking powder is the only that I've found that doesn't contain corn. For years, I tried to skip the baking powder and it left recipes flat and dense.  I found this at Nugget, and Whole Foods.

Flour-  I use EVERYTHING!  Before Gabriel had to avoid beans, I loved to use bean flours.  For now, we use tapioca flour, tapioca starch, rice flour, brown rice flour, sweet rice flour, sourgum flour, potato flour, and potato starch. These can be very pricey.  I've learned that the nearest Asian grocery store sells these for 1/4 of the price of anyone else.  I have the most success mixing the flours together.  Rice flour is a bit too heavy, potato flour is extremely light and dusty.  The best recipes and textures have come from combinations of all the flours.  In making sauces and roux I use potato starch, in breading for frying, I  prefer rice. In baking, I always mix!  Use the different textures and densities two your advantage!

Honey-Agave syrup, and brown rice syrup.  I prefer agave syrup (extracted from cactus), but it, too, is pricey.  Also, Agave syrup is a touch runnier than honey.  Gabriel loves in on top of his 'pancakes.'  Anything that can be topped with honey I splurge on!  If  I am baking, I use brown rice syrup.  It's very sweet, and super sticky.  Try diluting it until you get the right consistency.

bread crumbs- Corn flakes work great!  If you, like us, must avoid corn try this:  Rice Chex!  The cereal has about 4 ingredients, so it's safe of all common allergens.  Crush it up (if you prefer fine- or  chucky, crush it to your preference).  Chex are mild in flavor, so you can salt or season it when your recipe calls for flavored bread crumbs.

Tomato- Depending on the recipe I use both tomatillo, and pumpkin! Believe it or not, tomatillos are most closely related to gooseberry (not tomato!).  IN sauces, salsas, and soups, it works well.  It is a bit tangier than tomato, so sometimes it requires additional sweetener.  Pumpkin on the other hand, is a bit sweeter than tomato.  I add a bit on vinegar to make it most similar to the classic marinara sauce.  I have used pumpkin to make BBQ sauce, Ketchup, marinara, meatloaf, goulash, chili, and anything that typically calls for the red fruit!  I've fed lots of the concoctions to unsuspecting friends and family- and they had no idea that they were eating a Gabriel safe dish!

I've been playing in the kitchen for the last 5 years, and I hope that some of my horrible mistakes, can help save you from making them :)

Email me at Raquellauren@yahoo.com for other substitutes not mentioned here .

If you've ever given blood.

I just read a disturbing article-

The story was about a little boy was in need of a blood transfusion.  Shortly after he was given the blood- he suffered a dangerous anaphylactic reaction.  Why?  Because There was trace amounts of peanut protein in the blood he received.

Currently, there is no procedure or protocol for testing blood for allergens.  Lets be honest- typically, if you are in need of blood, its pretty urgent.  Will this story create a buzz and possibly update the way blood is given?  Maybe-  but I have a better idea.

The number of people worldwide with dangerous peanut allergies is growing at an alarming rate.  Someone who is in need of a blood transfusion is already in a very vulnerable, and unhealthy state.  Have you ever signed your name on the dotted line- and volunteered your narrow vein to be poked and drained to help someone in need?  If you have-  thank you, it is something to be proud of!  If you have ever, or you have considered it in the future, I am going to ask you to take it just one step further. Because peanut allergy is the most common cause of death from food allergy, please don't eat peanuts (or peanut butter, or even a Snickers) at least 24 hours before your donation.  Your kinda donation with be safer and more likely to save a life!

Please don't feed the animals

Gabriel and I and his 'don't feed me' sticker

We took a day trip to San Francisco this weekend.  I was excited to see how well Gabriel did, but I must admit, it took a bit of planning.  Our day trip started out late.  Because eating out isn't an option for Gabriel, we typically take our trips between meals.  We walked through the city as I juggled everything we needed to keep Gabriel on track for the day.  We brought Gabriel's medicine backpack- that goes everywhere with us.  It includes a fully charged battery operated nebulizer (that also has an adapter to work in a car lighter outlet), benedryl, anti-itch creams, inhalers, epi-pens, the pasty concocktion the doctors instruct us to mix if he esophagus begins to swell, tummy medicine, germ wipes to keep from touching someone else's leftover food, ICE cards, allergy lists, and a set of his 'don't feed me stickers'.  In my other arm, I was toting around a bag of Gabriel friendly snacks, since we can't buy any when we are out.  We had lots of apple juice, and rice cakes.

Public school vs Peanuts.

It's on the news, and it's in the paper often.  Here's the debate-  One kid- dangerously allergic to peanuts, other parents upset about the how 'a peanut free school' might affect their healthy kids.

 The healthy kids-  They like peanuts, and their parents hate the idea of banning them at school.  OR, the parents hate the idea of requiring kids to wash their hands.  There are no health related reactions that these children may experience in result of a peanut free campus.  Could someone argue emotional results? Possibly.  If your child would be traumatically affected, or become emotionally distressed because he/she can not eat peanuts at school- there is something else seriously wrong.  Is it a pain?  Maybe.  If you slap some PB&J  on a piece of white bread to throw in your child's lunch bag everyday, and you are upset about having to come up with something new, fine.  I am sure the 5 year old with a deadly allergy didn't mean to 'upset your flow.'  His/her parent could possibly spend hours, and 3 times as much money trying to create some sort of safe meal to pack in their lunch box.  As much as I try to see every situation from both sides- let's be honest, you and your child will not suffer any physical or emotional damage because peanuts have been restricted from your child's school.  I understand that you have no sympathy for the child who can never eat peanuts in her life, or the young'n who was rushed to the hospital, unable to breathe because her airways closed due to a peanut contamination.  Ironically, I bet that child has more blind compassion for you then you'd imagine, while you continue to judge him/her.  Please, try to put yourself in their shoes.  Do you think that this child, or their parents, signed up for allergies?  No, and thankfully, you or your children don't suffer from them as well.

As for the parents of allergic children-  Yes, my son is home-schooled.  He should have the right to a public education, but unfortunately, no school can accommodate him.  I am a 24 year old, 100% single mother, with one income, no public assistance and I make it my job to home school him.  I am not speaking from a lazy, inconsiderate, or needy point of view.  I believe in taking necessary action to protect our children.  For my child, homeschooling is necessary.  For a child with an allergy to only peanuts, I would like to hope that public school is an option.  If YOUR child was diagnosed with a disabling condition tomorrow that resulted in home-school as the only option; your choices would be to pay $18,000 a year for at home child care, or to quit your job to stay home with the child.  I believe with personal experience, your strong and opposing opinions might change.  My son has more than 40 food allergies, trust me I understand.  I would hate for anyone to have to 'go out of their way' to have to accommodate him, or any other child with food allergies.  But really, does keeping peanuts out of your lunch box mean going out of your way?  Is being lazy, inconsiderate, or insensitive worth risking some one's life?  You seem to be spending more energy picketing against it than you would be packing a peanut-free lunch.  I've never heard anyone complain that the 'handicap gets the close spot,' or 'the ramp gets in my way.'  Accommodating a disability affects you in such a small way, it's ludicrous to think of picketing, and protesting against a small child's disability and their rights to education.

Most adults can fondly speak of their memories as a child.  We all remember our favorite teachers, and best friends growing up.  44% of your awake time as a child is spent with your classmates and teachers.  Most can say it was their school experiences that molded and shaped them into the adult they are today.  I know I can.
Children, by nature, are compassionate, selfless, and nurturing.  When a child is hurt, their friends always  offer hugs.  When a child is crying, others are sympathetic, and share a moment of sadness.  If you or your son/daughter would rather restrict an allergic child to a solitary education, with no friends,  no licensed teachers to help educate, and  no socialization; I recommend you take a moment to self reflect on your level of compassion and selfishness.

Help along the way

There's a magazine intended for people with food allergies that I subscribe to.  It's filled with recipes, cutting edge articles, and stories that a parent of an allergic child can relate to.  I just opened up the newest issue to find a 3 page spread of a Mother's journey with dietary restrictions.  Her child wasn't tested for a milk allergy, and he didn't have a dangerous anaphylactic reaction.  Her son was diagnosed with severe, non-functioning autism.  Severe enough that it was recommended he live in a group home for special care.  I related to her immediately.  Our boys symptoms are very different and unrelated, however, our jobs as Mother's is the same.  I don't mean to compare, I know that I could not imagine being in this mother's shoes. But, Like myself, it became her job to relentlessly research her child's illness, and dedicate her time and energy to changing his diet, and surroundings.  When this Mother learned that a gluten free, and dairy free can significantly improve behaviors and symptoms of autism, she dove in head first.

Often I hear people say "we try to eat gluten free," or, "we eat MOSTLY gluten free, because we don't really like bread...,"  or most often "we usually don't eat that but we were out, and there was nothing else to eat."  Ironically, everyone who's ever said to me "that diet didn't work," also admitted that they cheated, and didn't follow the special diet strictly.

In the early stages of changing her son's diet- this Mother offered a strict diet of no gluten of dairy.  She learned to bake gluten free cookies, and tried very hard to make something her son would choose to eat.  He didn't.  In fact, he did not eat for 2 days.

Of course we prefer our children to eat a healthy diet, every day.  And, naturally, it would be easier to find something your child enjoys then sticking to a so difficult diet so strictly from the beginning, but I celebrate this Mom.  When giving in is not in your child's best interest, it's best not to.  It's a battle of the lesser evils.  I may get some hate mail for saying this- but, if it means sticking to your guns to follow through with what's best for your child, be firm.  You are the mother, you know what's best, and as hard as it may seem right now, your end result will be a healthier child.  Like this Mother, say no, and don't give in.  And I promise, when he's hungry enough for this face off to be considered dangerous, he'll eat whatever is in front of him.

Your life may no longer consist of last minute day trips, or quick fast food runs on your way home.  Dealing with special diets will require more planning ahead, packing lunches, and 'bringing your own' where ever you go.
Special diets will mean learning how to cook.
It will mean saying no, and sometimes being 'the bad guy.'

There will always be controversy.  This is one of the many controversial food allergy subjects.  Some believe that 'depriving your child of dairy' because of behavioral issues is wrong, and some believe that not providing other food options is torture.  There are parents that think that not allowing dangerous life threatening peanuts  at school is not fair to the 'healthy kids'.  There will always be resisters, and there will always be someone to push you, but what you're doing is right.   And I don't mind being the one to say it!

So, to encourage those of you trying your best to help your children with special diets; You are a great parent.  You want whats best for your child, and you want your little love to be healthy.  You are doing well, and YOU know what's best.  You've decided that a change in diet is better for your child then the chemical related side affects of ADD, ADHD, Allergy, Asthma, Seizure, or anxiety medications.  You stick to your guns, and try to stay strong.  I promise, it will get easier, and your child will get better.  And I support you.

Hero's

The FAAN has recently been focusing on educating friends and family of people who suffer from food allergy.  Part of the focus has been on recognizing 'PAL's,' or people who "Protect A Life from food allergies.'

Again- this is why I blog.  Educating just one person- helping someone know enough to save a life- is all I hope for.  In support of the Food Allergy and Anaphlyaxis Network and their efforts, I would like to honor 3 special people with the PAL Hero award.

the history of Gabriel

There will always be those who go against the grain.  For some, it's only natural to debate and question the rest of society.  For those few, agreeing may feel like submission, and the only way they feel satisfaction is to debate, and challenge even the most undebatable concepts.
In some ways- I too am a challenger.  I challenged the doctors when they prescribed daily steroids.  The thought of a 2 year old swallowing twice the adult dose of steroids that stunt grown, diminish calcium absorption, and a million other significant side affects was not an answer, for me.  So I challenged, and I found a solution.  I challenged the idea of feeding tube instead of an extreme and hard to follow diet.  I challenged the doctors who thought it couldn't be done.  It is the challengers that push the rest of society to find a better answer.
I encourage you to challenge me.  Challenge me to learn more about the body and its disease, challenge me to learn more about the side effects of Gabriel's drugs, challenge me to prove my point in such a strong way that it is clear to the world.  Challenge me so support a child as a single parent, challenge me to support a child with 3 separate disabilities as a single parent.  It is overcoming challenges that creates growth.

Don't give up on spring time allergens

Not too long ago- an expert allergist told me that Gabriel has a strong reaction to grasses, and should avoid them at all expense.  HA!  You try being 4 and avoiding the grass.  This allergist has been one of Gabriel's most reliable doctors for a long time, and he taught me something very valuable.  Rarely does one allergen sen you over the edge.  Allergies are like that arcade game- with the shelf full of coins, and you drop in coin after coin until they all pour over the edge.  The shelf is full of hundreds of coins, and finally, that one single coin causes a ton to overflow.  Allergies are just this way.  You are irritated by many allergens, typically.  And one by one they fill up the shelf.  Finally, one little allergen, not necessarily your 'worst' pushes you over the edge.  Suddenly your congested, itchy, wheezy, and rubbing your eyes.  Although we tend to blame the last allergen we were exposed to, blame everything that filled up that shelf!

Through my research and experience I have learned these few but valuable tips to help keep your shelf empty.  When your shelf is empty, one accidental exposure wont push you over the edge!

Not exactly the Tooth Fairy's wish

Gabriel is 4 years old.  Young enough to still be full of energy, and vibrant.  Fresh enough to be healthy, and unaffected by the side affects of the world!

Gabriel had a dentist appointment Monday.  Not his first, but he loves it anyway.  For him, the dentist office is a playroom fitted with a Wii, Playstation, and 4 IPads for the kids to pay with while the wait.  This dentist office really is kid heaven.  Each examining chair has a flat screen TV over the chair, to enjoy a movie, during your oral exam.  Gabriel loves it.  So many people fear, and hate the dentist, Im glad that for now he still enjoys it.
I took a minute to ask the Dental assistant to use non-latex gloves, and I checked the ingredients on the toothpaste.  I sat right next to Gabriel's recliner, while he watched Toy Story 3, gripping his backpack full of medicine.  With so many tools, implements, and pastes going into his mouth, I held my breath and hoped we could avoid a reaction.

To the Restaruant Owners, Waiters, and Cooks

Dear Restaurant Owner, Waiter, Cook, or To Whom This May Concern:

I am writing regarding my medically disabled child, and other children with life threatening food related disorders.  In a recent visit to a privately owned restaurant, I was provided the ingredients in a specific menu item.  I was pleased to hear a short list of only three natural ingredients.  These ingredients, sugar being one of them, are all safe for my son.
The pleasant waiter/cashiers was apparently unclear on what 'sugar' is.  You see, for some children, like my son, even small amounts, as small as just a few PPM (parts per million), of corn starch, syrup, or additives can significantly impact his health.  In fact, it can cause permanent tissue damage in his esophagus, and affect his ability to swallow as an adult.
Owners, I urge you to educate your staff on the importance of confidently answering questions regarding the ingredients of your menu items.  I encourage you to take life threatening food allergies very seriously.  What may seem, to a healthy person, to be such an insignificant amount of an ingredient , can be deadly to others.

I would be happy to help further educate yourself, or your employees on the severity of food related disorders.   For more thorough information on allergies and anaphylaxis, and how to protect your consumers, patrons, and customers please visit the Food Allergy Initiative at FAIUSA.org, or The Food Allergy and Anyphylaxis network at www.foodallergy.org

Thank you for your time in this important matter.

Sincerely,

Raquel Dispenziere