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

Mom- Can you do this!?

Gabriel's first EKG

I'm blessed that Gabriel still considers it a gift to be unique!  We all should, but far too often we rather fit in than stand out.  When Gabriel learns something he can do, that no one else he knows can, he stands a bit taller.  Who knew licking your elbow could make you feel like a superstar.

Yeah, I said it.  Licking your elbow.  I know, its silly, and strange.  Gabriel has a genetic connective tissue disease known as Ehlers Danlos Syndrome. Matter of fact, so do my sisters, myself, and my mother.  I'm confident that I can trace it back at least 5 generations.  This joint disorder shows different in everyone.  We've learned that while the disease is genetic, the symptoms and severity are not.  For example, a parent might have a 'double jointed thumb,' while the child can't walk cause their knees always collapse.

Gabriel was 3 the first time he fell to the ground screaming.  He grabbed his knee and rocked back and fourth on the  kitchen floor.  Gabriel's kneecap was on the side of his leg.  It doesn't take a doctor, a nurse, or even a parent to recognize that that is not where a kneecap belongs.  I carried him to the couch, grabbed him so ice, and quickly tossed action plans around in my head.  "should we run to the ER?  Maybe we'll wait a few and see... Maybe We should just go to the doctor in the morning..."  As a parent, you hate to see your child in pain, but with something so new, so unique, and somewhat bizarre, I took a minute to think about a plan.  I grabbed Gabriel's ankle so that I could move his pant leg to take another look.  The whining stopped.  Gabriel got up, wiped his cheeks, and went back to playing.  That was it.

Biodegradable what?!

As a parent to a very allergic little boy, you could say I'm cautious.  Ok, Let's not beat around the bush, I'm borderline paranoid.  I think every parent has their share of anxieties. Crossing the street, talking to strangers, playing in electrical sockets.  Maybe your kids are older, and for you its bad influences, drugs, and cars.  Either way, we all have concerns, fears, and areas where we might be a little extra careful.  Because, well, when we're talking about the lives of our children, caution is necessary.  We walk a fine line between protecting your children, and pissing off the rest of the world with what they believe are your insane paranoias.  But for a Mommy, or a Daddy, or an Auntie who's loves her nephew, theres no such thing as paranoid.

Change is good

Ryder scratching Gabriels itchy back

Making a decision to pull  your child out of school, before he's even old enough to begin is not an easy one.  Gabriel is intelligent, friendly, energetic, and loves his friends.  Even at 3 years old, Gabriel bonded with his school mates in preschool.  He's proud of the artwork he's created,  he's begun looking up to his teachers,  and has become an expert in his own diet and restrictions.  School has been good for Gabriel in some ways.  


I was lucky to have found a school whose teachers genuinely cared about Gabriel.  The allergist and I had a very pointed conversation.  This doctor, who has followed Gabriel since birth, reminded me that Gabriel's sensitivities were getting worse- not better.  The allergist prescribed homeschooling, and Gabriel last attended preschool on the day of their Halloween party.  Just 3 months ago.  


I am happy to announce that Gabriel hasn't had a rash since he stopped attending preschool.  Yes, not one rash.  Now, sure, in the world of pneumonia, asthma attacks, Epi pens, and GI biopsies, a rash doesn't seem like such a big deal.  Maybe I'm being a bit optimistic,  but I believe a rash is the first sign of other symptoms to come.  Doctors have actually found that eczema and rashes release a secretion into the body that triggers asthmatic symptoms.  This doesn't just mean that eczema and asthma are related, it means that eczema can actually cause asthma.  For most of Gabriel's toddler years, his back and butt was covered in a scarred, scabbed, raw, bloody rash.  It was deep, and painful just to look at.  If a dry patch on your knee can be called eczema, and eventually cause asthma, I can only imagine what Gabriel's scars may have caused.  Baths are no longer painful, and Gabriel hasn't asked me to scratch his back near as often.  Gabriel's allergies are affecting by the things around him.  When he was constantly surrounded by foods that he is allergic too, peanuts or not, it caused reactions.


Long term, Im happy with this homeschooling idea.  Im comfortable knowing that Gabriel will be safe at home.  Im excited  knowing that he's got a great nanny to spend his time with, and Im confident that this intelligent little boy will learn more at home than public school would limit him too.  
In the big picture- this looks good.  


I try to keep the big picture in my mind at all times, because when I think about September.... and that my little boy will never have a first day of school, it breaks my heart.

A new home

Sure it takes some special care in the kitchen to keep Gabriel healthy, but for an outsider, its easy to overlook what else is involved.  We're in the process of moving, and there are so many things I need to consider!

Flooring, of course!  Any house we move to, must have no carpet!  Now, of course this will probably mean that we have to do some work, and have and have hard wood installed, but it is a huge expense.  

Pets.  Cats seem to put Gabriel in the hospital immediately.  There is no way to ever no what pets lived in a home before us.  I read a study that said 99% of homes contain some sort of cat or dog danger.  99% of Americans don't own cats/dogs, its incredible what dander can linger long after someone moves out!

Fireplace.  Oh I would love a nice cozy fireplace.  A fireplace isn't safe for an asthmatic.  Options?  Find a home without one, don't use it, or replace it with a clean burning gas fireplace.  How bout grass?  The doctor prescribed complete grass avoidance.  As a mother of an otherwise active child, I refuse to have his playtime limited because of our landscaping.  This will mean either pricey artificial turf, or a lovely rock garden.  Some of the most common allergy triggers: dust, dust mites, and pollen, can be kept at bay with air purifiers.  HEPA filters can removes more than 90% of these allergens from the air.  Average cost? $299 for a purifier that covers 300 sq feet.  Recently, we got rid of any and all stuffed animals that lived here.  Other recommended maintenance includes daily wiping down of mattress covers, weekly washing of curtains, sheets, mattress covers, etc, in HOT water.  A

The tasks and purchases recommended for Gabriel's health can seem expensive and time consuming.  It is one more way I keep Gabriel looking more and more healthy!  I am so proud that he is not recognized as a 'sick kid' anymore!  He goes about his days, playful, and healthy.  And these days, we spend much less time in the ER.

A new home

Sure it takes some special care in the kitchen to keep Gabriel healthy, but for an outsider, its easy to overlook what else is involved.  We're in the process of moving, and there are so many things I need to consider!

Flooring, of course!  Any house we move to, must have no carpet!  Now, of course this will probably mean that we have to do some work, and have and have hard wood installed, but it is a huge expense.  

Pets.  Cats seem to put Gabriel in the hospital immediately.  There is no way to ever no what pets lived in a home before us.  I read a study that said 99% of homes contain some sort of cat or dog danger.  99% of Americans don't own cats/dogs, its incredible what dander can linger long after someone moves out!

Fireplace.  Oh I would love a nice cozy fireplace.  A fireplace isn't safe for an asthmatic.  Options?  Find a home without one, don't use it, or replace it with a clean burning gas fireplace.  How bout grass?  The doctor prescribed complete grass avoidance.  As a mother of an otherwise active child, I refuse to have his playtime limited because of our landscaping.  This will mean either pricey artificial turf, or a lovely rock garden.  Some of the most common allergy triggers: dust, dust mites, and pollen, can be kept at bay with air purifiers.  HEPA filters can removes more than 90% of these allergens from the air.  Average cost? $299 for a purifier that covers 300 sq feet.  Recently, we got rid of any and all stuffed animals that lived here.  Other recommended maintenance includes daily wiping down of mattress covers, weekly washing of curtains, sheets, mattress covers, etc, in HOT water.  A

The tasks and purchases recommended for Gabriel's health can seem expensive and time consuming.  It is one more way I keep Gabriel looking more and more healthy!  I am so proud that he is not recognized as a 'sick kid' anymore!  He goes about his days, playful, and healthy.  And these days, we spend much less time in the ER.

What's your Monster?

Gabriel and his cousin, Ryder, My monsters :)

Every experience, every treat and joy; and every dreaded fear, is based on our own personal experiences.  Its all relative to what we, personally, know.  What you don't know, you don't miss, and what went horribly once, we're scared to try again.  We all have our own monsters, so to speak, that we create, based off of our own fears, hates, and experiences.

The eye of the beholder

Gabriel, waiting for his surgery to begin.

Happiness.  Thats what they say, right?  I heard something perfect today, "happiness isn't a goal or a destination, its a decision."
We all have hundreds of reasons to be less than happy.  We wait and wait, and hope that life deals us cards that will give us that ever after, that happiness we've been waiting for.  We all wake up, and use life challenges as reasons to be unhappy.  Its true though, happiness doesn't come from luck or destiny, it is an active decision that we have to choose when we open our eyes every morning.

This year's surgery- The results are in

Just 2 weeks after I learned about the newest in preventative surgeries for Eosinophillic Esophagitis, we were in the car driving over to the hospital.  It happened faster than I even had time to worry about it! Quick and to the point!  I like things that way.  Gabriel's surgery was scheduled for Wednesday, Novermber 10.

Bullies

Lately, bullying has been a hot topic in the media.  It has forced the rest of us to take a closer look of how common, how unsettling, and how dangerous it can be.  One of my many worries, is that as Gabriel gets older, it may be something he faces.  And probably more likely, and more intense than most kids.  I remember.  It wasn't that long ago that I was in school.  Any weakness is an excuse to be picked on.  Foreign accent, height or weight, name, intelligence, and of course health conditions or disabilities.  How many movies or TV shows have we seen that portray the  'loner,' the weakest, or the kid whose picked on to be the one with allergies, or maybe walking around with an inhaler.  I know the reality.  I know that kids might see Gabriel as different.  I think different is just fine. 

Hair Color Allergies

A fellow hairdresser friend of mine posted a story on Facebook today.  A British teen decided to color her hair at home, and and suffered from a nearly life threatening reaction.  As scary as that sounds its true.  Hair color, like food allergies, can cause a very wide range of reactions.  A hair color allergy can result in anything from mild itching, to full body anaphylaxis.  At work, I had 2 guests in the same week, who admitted to having hair color allergies, but requested a hair color service anyway.  One told me that they wold be ok, as long as the color was wrapped in foil, and the other let me know that she would be OK because she took benedryl before she came.  Clearly, I was more, much more worried than these women were.  


Maybe they didn't understand allergies so well.... but I think its important for everyone to understand your allergies can change!  What is mildly itchy today, can possibly swell your throat tomorrow.  Every time your body is exposed to an allergen, the response increases.  Using color in foil, or taking benedryl is not a solution, or a cure.  Hair color is always dangerous to those with allergies.  If you ever decide to color your hair at home, you should probably test the hair color on your skin first.  Mix a small amount the 2 chemicals together, as the directions instruct you to, and apply a small amount to your inner elbow, or behind your ear.  Even drug store boxes of hair color recommend you test for an allergy before use.  The chemical in hair color that triggers allergic reactions, in some, is called PPD (

ParaPhenyleneDiamine.)  The following substances are related to PPD, and can also cause allergic reactions:

• Local anesthetics benzocaine and procaine
• Sulfa drugs
• Para-aminobenzoic acid (PABA) in sun-protective creams
• Para-aminosalicylic acid used for treatment of tuberculosis

Use caution with chemicals like hair color, and always follow manufacturer's directions.  If you have a history of allergies, have ever had a reaction to hair color, or any of these related substances, avoid use of, or use extreme caution with hair color.  And always, always test yourself first.

* Please always check with your doctor for questions or concerns about your allergies.  While this information is meant to be informative, is should never substitute the advice of your physician

Infants and allergies

Thankfully, he gained weight throughout infancy,
 because he was nursed

We all developed allergies as we are exposed to them.  You can never actually have a reaction to something that you've never had, or been exposed to.  It has been proven that the earlier an infant eats a food, the more likely they are to develop an allergy to it.  Sure, we all think, that's ok, MY baby wont have allergies.  Lets be honest, someone in your family has some sort of allergies.  Maybe seasonal?  Maybe to just a few foods, or maybe just a drug allergy?  Eczema?  If any of these sound familiar, if there is any history of allergies, it is likely that your child will inherit them, and it is your job to to and prevent them.