Thursday, January 24, 2013

Anaphylaxis- Help Us Change the World, One Word at a Time

Caution to my more tenderhearted or sensitive readers.  The below pictures show children experiencing severe anaphylatic reactions from food allergies. Please make sure your little ones are not looking prior to viewing (unless you as the parent choose otherwise).  These pictures are graphic and show what a reaction looks like.  SO... with all the warnings I can throw out at you to guard your hearts, please scroll down to read this post.  :)
>just giving you a moment.....
>want to be sure little eyes are safely shielded...........
While these reactions were taking place, parents were petrified that they could be loosing their children.  They watch helplessly as their child's body swells, become lifeless, heavy and unable to carry their own weight.  They listen with fear to their child wheezes, coughs, and gasps for air. They refuse to accept in their minds that a simple of morsal of food can kill their baby.  Their hearts skip a beat and they die a little inside. Seconds feel like hours while waiting for help.  Their hands tremble as they grab for the epipen to administer a dose of epinephrine. This is what it is to be the parent of a child going through anaphylaxis. This is the reality and the fear that haunts you every time your child takes a bite, goes to school, or plays on the playground with other children while they are eating food.

The pictures below are likely some of the less severe reactions their child has experienced, which is why they grabbed the camera to document for their allergy and asthma doctors, or their immunologist, or pediatricians- doctor's ask this often....a picture speaks volumes of fact compared to a parent's emotional recollection. Or perhaps like me, they too took pictures to review every 15 to 30 seconds to see if the reaction was actually getting worse or if it is fear making them see each rising hive as worse.  I took pictures as a coping skill to make sure that the epipen was not needed.  This was our first anaphylatic reaction. I was ready to stick my child with the epipen, and admittedly I was feeling helpless and bordering hysterical.  My husband was not sure yet if it was needed.... we questioned everything we thought we understood.  Nothing can prepare you for seeing your child like this, nothing!  (Later, we showed the pictures to show our allergist who then told us that undoubtedly the epipen should have been used.) I kept it together emotionally on the outside for the sake of the children during the crisis.  It has been a couple years since these pictures were taken of my child.... but every time I look at them, I cry.  I do not just shed one tear- I relive the moment and feel powerless and petrified and so very fearful.... and in private I bawl.  Watching someone you love experience anaphylaxis is a trauma.  It changes you forever.

Living with children with anaphylaxis is life altering.  One moment you are a parent and a moment after their first anaphylatic reaction your world spins and instantly you are parent, nurse, advocate, researcher, investigator, therapist, educator, well-versed in the law, protector, epipen trainer and for many parents also their teacher.

The reason I am sharing so much of this very heavy and heartfelt information with you is to communicate how important it is for the world to understand anaphylaxis.  Anaphylaxis is not just life altering- it is potentially life ending.  Recently, FAAN (Food Allergy and Anaphylaxis Network) merged with FAI (Food Allergy Initiative), and they changed their name to FARE (Food Allergy Research and Education). They got rid of the word “Anaphylaxis" in their title. While I understand that "food allergies" is being utilized as an umbrella term that is supposed to encompass anaphylatic reactions, I feel strongly that it is not enough and does not sufficiently depict the life threatening state of anaphylaxis.  In my opinion, the failure to keep the word anaphylaxis undermines the progress we have slowly gained over time and impedes educating the community. Like many other parents I know dealing with children with Life Threatening Allergies, I want to see that word put back. Just one word.

My two anaphylatic children are why I  come to you, my dear readers, and ask that you please help me in our journey of keeping our children safe and sign this petition. I feel very strongly about the need to keep the word "Anaphylaxis" in the titles of the very organizations that are spreading the word to the community and fighting for changes. Knowledge is vital to make changes. Knowledge is key. Knowledge is power. In this situation, knowledge, is the difference between life and death.

Thanks Nondice Thurman for the idea and verbiage! I just posted this on my group and personal page. 

"They say a picture can mean 1000 words. Well, I only want you to think of one…Anaphylaxis. Side by side are pictures of my daughter. She is allergic to peanuts, tree nuts, and sesame seeds. This reaction was from a single bite of a pasta that contained walnuts. She is why I feel passionate about the fact that when FAAN (Food Allergy and Anaphylaxis Network) merged with FAI (Food Allergy Initiative), they changed their name to FARE (Food Allergy Research and Education). They got rid of “Anaphylaxis.” As a parent of a child who can have an ANA reaction to an allergen, it bothers me they got rid of the word. It feels like an undercut in a way. Like many other parents I know dealing with children with Life Threatening Allergies, I want to see that word put back. One word. A picture means 1000 words. I just want one."
This picture was taken after our littlest one placed a piece of meat with a sauce that contains eggs in it in his mouth.  He did not even swallow it.  The cook used "egg replacer" which actually contains egg whites.  
My two anaphylatic children are why I feel passionate about the fact that when FAAN (Food Allergy and Anaphylaxis Network) merged with FAI (Food Allergy Initiative), they changed their name to FARE (Food Allergy Research and Education). They got rid of the word “Anaphylaxis" in their title. As a parent of a child who can have an ANA reaction to an allergen, it bothers me they got rid of the word. In my opinion, the failure to keep the word anaphylaxis undermines the progress we have slowly gained over time and impedes educating the community. Like many other parents I know dealing with children with Life Threatening Allergies, I want to see that word put back. One word. A picture means 1000 words. I just want one."
I wanted to share with you all something I am about to post to my own page.  It is these pictures I edited to be side by side of my little girl along with the following statement along with the link to the petition:

"They say a picture can mean 1000 words.  Well, I only want you to think of one…Anaphylaxis.  Side by side are pictures of my daughter. She is allergic to pineapple.  This reaction wasn’t even from outright eating pineapple.  The picture on the left was taken only a few weeks after the picture on the right.  She is why I feel passionate about the fact that when FAAN (Food Allergy and Anaphylaxis Network) merged with FAI (Food Allergy Initiative), they changed their name to FARE (Food Allergy Research and Education).  They got rid of “Anaphylaxis.” As a parent of a child who can have an ANA reaction to an allergen, it bothers me they got rid of the word.  It feels like an undercut in a way.  Like many other parents I know dealing with children with Life Threatening Allergies, I want to see that word put back.  One word.  A picture means 1000 words.  I just want one."

 All of these beautiful little faces are survivors of anaphylaxis.  Thank you God for another day to love, nuture, nurse, advocate, be a researcher and an investigator, a therapist, an educator of the community, learn more about the law, protect, train about epipens, teach, and love, love, love these children.

Sunday, January 20, 2013

Blessed Simplicity & Lessons Learned

We just had the most amazing fun day!  Our oldest baby opened a lemonade stand with an adorable little friend of his while we had a yard sale (ok, the yard sale was not the fun part!).  Her mommy, a dear friend of mine, had wanted to bake the cookies from the refrigerated section in the grocery store.  You know, the ones they can slice with a butter knife and then put on a tray and bake?  That does sounds like it would add to the fun doesn't it?  It probably would have been cheaper too...but, I hesitated.  I was silently calculating the cost of selling only Enjoy Life cookies- but even I knew that was a little over the top and financially impossible. Knowing that I am usually a little more cautious than my cutie pie husband, I went to him- he is the yin to my yang- and he admittedly keeps me balanced.  Thankfully, he agreed it was just not worth the risk.  We also both agreed that our little guy would be kept inside to be doted on my his Grandfather and Daddy (so very thankful for loving grandparents!) until later in the day when we could all pay closer attention to him.

So, we purchased some store bought cookies that are free of egg, tree nuts, and peanuts- our three anaphylatic food allergies for the children.  Bee could not eat them as they contained dairy and gluten.  So, our sweet big boy ran back inside and made some cookie bags free of gluten for mommy and his brother- without prompt.  He did it completely on his own with all the love in his heart.  Then, he even came back with several enjoy life bars free of top 8 allergens, "in case other children come to the lemonade stand and have allergies".  I can honestly tell you, a sweeter cookie has never been eaten!!!

I love good old fashion fun.  It makes me think of my own childhood.  It makes me think of simplicity, core values, and doing things right.  Yes, a simple lemonade stand represents all of that.  You should see people's faces soften when they take a couple of moments to make little children feel important and successful.  You should see the little one's as they shout "Lemonade!  Fresh lemonade for sale!" in unison with chocolate smeared on their faces and sticky lemonade on their fingers.  My goodness they were cute little sales people!

The day went by almost perfectly.  Then during cleanup time, our little busy, busy Bee grabbed an "empty" bag that was left in their cookie basket and ate a crumb from it.  (All the other baggies were filled with safe, Enjoy Life cookies, but he grabbed a crumb from the one empty and unsafe bag left!  The crumb was the side of a a quarter.  I am so very glad that we made that decision to exclude their anaphylatic foods and really wish we could have afforded the Enjoy Life cookies for all their sales!  I was not overly alarmed, just disappointed I could not grab the bag faster.  As I was running towards him, I felt like he was in fast forward and I was in slow motion!  It was a tiny bite and there were not any anaphylatic ingredients.  He did spit up several times during the night and the next day and his little belly looked like a watermelon.  Thankfully, he did not get violently ill.

I am so gratefully that my husband and I are a team.  I am so thankfully that my sweet-hearted oldest thought to take care of his mommy, brother, and other children/adults with food allergies.  I feel so very blessed that my friends and their children may not completely understand, but support our families' crazy food allergy needs.  I am so glad that while I may sometimes feel a little pressure to step outside my comfort zone, that the "mama bear" always wins, and I do not cave to what would make others happy, even though it feels counter intuitive as I am a natural people pleaser!  I am so grateful that today, when we were reminded it only takes a second for children to get into foods they are not supposed to, that there was nothing that could cause anaphylaxis!  Counting my blessings and grateful for the simple moments in life today!


By the way, the chair in the driveway, card tables, and plastic bags litering the yard are part of our yard sale!  NOT  typical yard decoration for us!  Smile.

Thursday, January 17, 2013

Asthma & How It Relates to Food Allergies

I have had so many parents ask me about asthma with their food allergic little ones lately. 

I grew up with asthma.  I remember standing at the living room window and watching all of friends play in the neighborhood, but I was not allowed to go outside and play because the cold weather would trigger a severe attack.  I remember having to carry my nebulizer to school daily during these times.  I still laugh at the memory of one of my friends thinking my nebulizer was actually a little cage for bringing my pet hamster to school- no, I did not have a hamster- my mom said it would cause my asthma to get worse... as an adult I think that was a great excuse!  But I digress...

Asthma is an inflammatory disease that impacts the airways.  During an asthma attack the muscles in the bronchial tubes constrict because of the muscle spasms in the airway.  An interesting tid bit of information is that boys seem to have asthma more often than girls in childhood.  In early adulthood those numbers seem to even out.  But during middle age, more women have asthma than men.

So how is asthma related to food allergies?  The important thing for every parent to understand is that early anaphylaxis and asthma appear similar.  It is vital to remember that if in doubt use your epi pen and call for emergency assistance.

Please let me tell you, my little Bee has had a very severe reaction that still haunts my thoughts to this day.  Later on, I was told by our Allergist and ENT that it was a reaction I should have used an epi pen.  I was told that the worst that would have happened is that he would have a little guy running around with an extra buzzing of energy.  He followed up with "You will never regret giving your son epinepherine, but you could live with the regret of not giving it to him for the rest of your life."  This statement felt like he had punched me in the stomach- and has allowed me to push past the fear of the epi pen. 

Yet another relation, and one that I do not like to acknowledge, is that uncontrolled asthma can truly be fatal during an anaphylatic reaction.  Most fatal anaphylactic reactions are in people with uncotrolled asthma.  It is vital that you do all you can to get your children's asthma under control- period.

Uncontrollable asthma MAY be indicative of an allergy or intolerance that has bit been recognized.  Please understand the following information is my opinion, not fact!!!   Please, also always communicate with your pediatricians and medical team on what will be best for you and your child.  When it comes to children and their health it is not possible to make a blanket statement that covers all children... each child's health needs are just as different as their personalities.

 My oldest's asthma is much better than it was just a year ago, but asthma is still a huge disability for him that honestly stops him from doing far too much.  He engages in many activities, but we often will pay the price later.  As a mommy, with absolutely no medical degree, I am trying to convince my sweet husband to try three months with no dairy and no gluten to see if our wheezing little guy is any better.  My husband is not on board- yet.  Our oldest is a gluten eating machine!!!  He is our picky eater!  His foods consist of bananas, pancakes, breads, Sunbutter & crackers, and PIZZA, throw in a McDonald's burger once a week and you have HIS menu choices.  See the trend in almost everything?  Yup, gluten.  He will eat (and does every week with a slight power struggle) green beans, broccoli, and sweet potatoes.  He will eat carrots and cucumbers raw.  He likes beef and chicken.... ok. He would prefer being a "carb-atarian"- one who eats only carbs.  So, my Honey is a little resistant to take on such a long-term power struggle.  If the asthma gets any worse, we will be giving this a shot out of desperation.  The thought process behind this is that he did test positive to dairy until just this year when he "outgrew it". Some M.D.s do not beleive that people actually "outgrow" an allergy fully (that is a whole other topic!). Also, my husband is lactose intolerant, I am dairy intolerant, and our littlest buzzing bee is allergic to dairy.  Another thought in this seemingly drastic measure, is that I have celiac disease so he has a good change of either having celiac disease or gluten intolerance too.  His baby brother also has celiac disease.  Yes, we are trying to get bloodwork to confirm.  Actually, we have tried 4 times to get bloodwork.  He was stuck twice- no blood.  The other two times, he was so sick we needed to reschedule.  We are still working towards getting that done.  Until then, he is at least doing well at present time.

So, our little ones will grow up with some of the memories I swore when I was a little one looking sullenly out the window that I would never do to my children.  Sometimes, we have to miss play dates.  There are friends' homes that we will not enter because they have cats.  Often, our little Bee misses his preschool due to illness.  Thankfully, we homeschool our oldest for this and other health reasons.  He would be missing so much school this year! 

But, all is not lost!  Yes, the vision of a small child looking longingly at her or his friends from a window is so pitiful.  But, picture this going on at home: hot teas with lemon and honey, a warm blanket, parents on either side of you snuggled up playing a board game or having a movie night.  Lots of hot showers that loosen your lungs, can also become a warm waterfall on a deserted island with just a little imagination.  Nights that you cannot sleep, mommy or daddy will sleep on the couch in the upright position all night, with you gently prompt up in the crook of their arm.  Feet and chest rubs... even if it is with menthol smelling rubs.  And, when we are feeling better, but the weather is still not right for our lungs- we can ride our scooters in the house.... compliments of parent's guilt.  So, later in life, our little ones will realize their even trade off. 

On a positive note, parents of children with chronic illnesses, asthma, and constant threats of allergic reactions are usually adoring parents that appreciate the miracle of the children they love and know to cherish every moment with them.  I promise they too will look back on the love from you and not regret one moment of the times they could not be outside.  They will remember the LOVE.

Our dragon trainer's infamous rash from the steroids in the asthma medication when sing the mask on his nebulizer.  Our simple solution?  No mask, "big boy mouthpiece" and washing of his face after each treatment.

Snuggling while we were all so sick at Christmas time.

Daddy trying to comfort his tired little Bee while sick.

More snuggling while we were sick

Tuesday, January 15, 2013

The Emotionally Trying Time of Flu Season with Medically Fragile Children

I am so sorry I have needed to take a little break from you my dearest readers, I have needed a short emotional break to deal with my haunting ghosts.  It comforts me somewhat that I read about other mommy's with special little ones that have exceptional physical needs and/or medical needs seem to share in my same daunting fears, but unfortunately it cannot make them go away.  It at least validates me into feeling I am not crazy... well, at least not certifiable.  I worry about life a little, a lot more than other parents with healthy children seem to. 

Parents with healthy children feel sad and perhaps even frightened when their children get sick.  But, parents of medically fragile children know too much.  We have been informed of too many statistics. We have seen our children get sick with illnesses everyone else can fight off in a week, linger in our homes for weeks on end.  We fall asleep to the hum of our children's medical equipment and we wake with every cough, sniffle, or deep breath.  We get scared because we know too much, remember the last time they were so sick, and we have seen our children struggle too many times.  We feel blessed to have them healthy.  We count the days between the last medical issue and we are grateful for each day in between and we secretly fear the next time and pray it will be better soon. 

We are in the peak of flu season.  Flu season is such a frightening time for me and my family.  I honestly feel paralyzed. I want to keep the children inside and keep them physically healthy.  I would love to ensure their safety, but I cannot for fear of their emotional and mental well being.  (Not to mention my Honey's emotional well-being after just one week with two boisterous boys jumping around the house!)  So while I do everything I can to ensure their physical and spiritual growth... I struggle with the anxiety of allowing them to venture into this big, bad, germ infested world.  While they are blossoming, sometimes, I feel the sacrifice of allowing them the room to grow makes me wither a little inside. 

The boys both have asthma.  Our oldest- our little dragon trainer, has asthma that is not as controlled as it should be.  It scares me so much to hear him struggle to breath and cough incessantly when he is healthy!  The thought of this very scary flu compiled with their asthma and the fact that they are so young is overwhelming to think about.  I have seen the children struggle to breath and it is the most frightening and powerless feeling I have ever felt.

The thought of the flu brings back memorioes and fears.

So lately, I have worried.  Nothing has changed but flu season, the fear of getting it, and fighting the natural desire to keep them safely home has made me a little bit more of  a worrier (and I am a natural at it without that kind of help!)  I suppose this is the "normal" for parents with children that are medically fragile.  That being said, I would not trade my life, my children, or my worries for anything in the world.  These beautiful boys are the most precious blessings in the world- definately worth worrying about.  :)

Friday, January 4, 2013

Our Oldest Miracle Baby's Journey

Our oldest little one was a very wanted baby.  We had tried for 7 years to conceive our little miracle baby.  It was a difficult pregnancy.  I did not even care that I had morning sickness the whole time, or bed rest off and on, or diabetes or preeclamsia at the end- I was pregnant and could not wait to have our little miracle in our arms.


I had a bad scare at the beginning when I experienced a rupture of a subchorionic hematoma.  I had gone to use the restroom and I felt something warm run down my leg.  I looked down and saw bright red blood- a lot of it.  I am not sure what happened next.  I vaguely remember a close friend walking in and I was standing in the middle of a public shared bathroom with blood running down my legs and covered my hands. I was crying and asked for another close friend that had gone through infertility with me the whole 7 years too.  She came in and dressed me, washed my hands and brought me straight to the doctors while I called my husband and cried about how sorry I was.  He met me at the doctor's office where we learned that our beautiful little egg was still implanted.  I went back two days later and saw the blessed heartbeat.  I was still pregnant and thrilled to be carrying this miraculous little wonder.  I was on bedrest until 14 weeks.

I went back to work until he was 34 weeks gestation.  I was then told I needed to be hospitalized for severe preeclamsia.  That was a little shock, but I happily obliged and the hospital took amazing care of me.  At 35 weeks and 4 days my blood pressure and the protein in my urine were too high.  I was told we must deliver.  So 24 hours later, my blessed little tiny miracle was in my arms.  I had been told he would be a very large baby due to the gestational diabetes.  When they laid this very tiny 5 pound 14 oz baby in my arms, I was shocked at how tiny he was.  He went home at 5 lbs 6 oz. 

When he was 2 months old I started to get violently ill with uncontrollable vomiting and severe abdominal pain.  I went to the doctor and she said I needed my gallbladder removed.  In true me fashion, I said I was fine and went home to be a mommy.  I then, went home and got so sick I called my husband and told him I needed him home and then drove myself to the hospital.  God must have taken the wheel and dropped me safely at their door.  I do not know how I was able to get there.  The doctor that performed my endoscopy put dye into my pancreas and caused me to develop pancreatitis.  I have never been in so much pain!  My husband got a phone call in the late afternoon from the hospital telling him that would not make it through the night and that he needed to come say goodbye.  This took us both a while to come to terms with after receiving such a beautiful gift of life and then realizing too soon how fragile life really is.

Once I recovered and came home, I almost could not recognize my own child because he had grown so much in a months time. I missed out on so much!  I still mourn this lost time together. How can this beautiful baby with the chubby cheeks be the tiny and frail little one that I had brought home from the hospital!  I still cannot get over how much he had grown!

Then, thankfully, everything was status quo until he was 12 months old.  I decided to feed him scrambled eggs with a little shredded cheese.  He began projectile vomiting after about 5 minutes of ingesting his first bite.  Hives swelled around his nose and mouth and then the rest of his body.  I gave him benadryl and then drove to our doctor's office about 10 minutes away- I think we got there in about 5 minutes I was in such a panic.  We were immediately given steroids and thankfully he did not need an epi pen once we arrived. Five days worth of steroids and benedrly for the next 24 to 48 hours depending on symptoms.

Oh My!!!
 I do not eat eggs, no reason, I have just never liked them. So he had never been exposed to them during breastfeeding other than the occasional baked-in eggs from cakes or cookies.  In hindsight, there were indications that he was having food allergy issues, but as a new parent, I did not know the signs.  He had horrible eczema and reoccurring MRSA infections that we just could not understand.  He also had severe reflux issues that were barely controlled by medications. After his allergy testing it made more sense.  He was found to be anaphylatic to eggs and severely allergic to dairy with sensitivities to soy.

When he was 5 years old he was bit by a fire ant.  Poor little guy, as he was getting hives all over his body, flushing, and starting to wheeze he was crying emphatically, "I promise I did not eat anything. I did not have eggs. I did not put anything in my mouth."  He had not- it turns out he is also anaphylatic to fire ants. 

Our big boy has always been sickly. I hate that term, but there is just no other way to put it.  He has always gotten sick so much more frequently than any of my friends' children.  I was told our home was too sterile and we should let him get dirty more. Then, we should rip up our carpeting and remove all fabrics and we are not clean enough.... We have done all we can! 

Just recently we asked to have his environmental allergies tested too.  He shows anaphylatic level reactions on the skin testing to oak and pine trees and high levels on so many others.  No wonder his asthma is so out of control!  We will communicate more as we learn how to control these next set of issues and regain his health as we learn and understand more!


Until then, hot showers & hot tea.  Now, do we add honey or is that no longer safe due to the newly discovered fear of oral allergy syndrome? 

My little dragon trainer is such a tender hearted, imaginative, creative, and sweet child.  He is the miracle child I yearned for and dreamed of having since I played with dolls as a girl, only he is even more amazing than I could ever had created in my mind.  I never knew how much love my heart could hold until I became a mommy to this amazing little miracle.  He is my considerate little heart who was born with an old soul, my amazing miracle.


Thursday, January 3, 2013

Our Little Monkey's New OT!!!

Today was a very good day for Bee.  We started with a new OT (occupational therapist) today.  I feel like I have been screaming from the rooftops that my beautiful little one is suffering from a neuro sensory disorder.  My husband and I both have been advocating with his past OT.  Pretty much, they dismissed us.  The did say, they saw from the questionnaire we answered there were concerns, but since they did not see these issues during the two 30 minute sessions a week, they would not address them at this time.  We had his teacher, his speech therapist, and one other person part of his medical team write concerns on our behalf.  I finally called around and made a change.

I do not know why I did not do this before.  Honestly, I cannot answer the reason we tried to make it work.  In retrospect, it was quite empowering to say, "this is what is best for my child and I am going to ensure his needs are met". Well, we did not really say it.  What's the point of hurting feelings?  But, in my heart, this is what mt actions said.

Change, even when wanted and good change, is intimidating.  Perhaps the reason we waited?  So, after waiting over 3 months for a slot, we had our evaluation.  She confirmed our thoughts, the thoughts of speech therapy, the thoughts of nurses, many, many physicians on our medical team, and our little guys teacher. 

She brushed him today.  My husband said she let him feel what it was like.  He said he had to rub his hands for almost a full 30 seconds to a minute to ease the over stimulation it caused for his hands.  But, Bee???  "B" just laid there and relaxed like he was having a massage at the spa.  It did not phase him at all.  The OT said that it is a clear sign that he has sensory issues.

(please do not start randomly brushing your loved ones and diagnosing... my explanation of therapy is rough at best!!!  Smile.)

Let me just tell you though... as a parent, today I celebrate!  We stood firm on our understanding of our child's needs.  We advocated.  We searched for support. And we were able to make a difference for our little guy.  I HONESTLY feel this is they key to unlocking a lot of "firsts" for our sweet busy Bee.