One Mom’s Story

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I never imagined my kids would have health concerns…

I had always dreamed of growing up, getting married, and being a mom!  When we finally got pregnant, it never even occurred to me that my kids might have problems with their health. Within months of my son’s birth, I knew something was wrong.  He couldn’t breathe.  He was always fussy and crying and wouldn’t sleep.  I wondered what I was doing wrong and how I could be a better mother!  As time went on, I began to suspect allergies. I grew up with my own environmental and seasonal allergies and having witnessed my mom dealing with severe allergies and anaphylaxis, I knew it was a possibility.

I’ve been living the life of The Allergy Mom for over a decade, and it has taught me so much about taking care of my kids, my family, myself… and about living life to the fullest. On a sunny summer day in June, 2009, I experienced the scariest day of my life.  My 2 year old daughter had an anaphylactic reaction to nuts and ended up in acute resuscitation. This terrifying experience of almost losing a child changed my life forever. Though allergies can’t be cured, we can still be healthy —We can feel better, live well and love our lives.  I became The Allergy Mom – researching everything I could, talking to anyone who could help me and learning everything I possibly could about anaphylaxis, preparing food and how to keep my kids safe with their severe allergies.

More than a decade later, I’m grateful for everything I’ve learned throughout this journey. Although I would much rather not have the title of The Allergy Mom, I’m hopeful that my experience and knowledge can help others going through this to live their lives to the fullest. I’ve become an expert on how to keep your child alive and thriving with their allergies.  I’ve learned to cook things that I would never have imagined making.  I’ve become an advocate, educator and counselor for those with allergies, anaphylaxis, asthma and eczema.  I have helped thousands of people from all across the world to live with their allergies. If I can do all of that, you can too!

What I learned from my first kid:  Andrew

                         

From birth, our son had difficulty breathing through his nose.  We made jokes about our little mouth-breather, not realizing that this was in fact a sign of something much more serious going on!   He suffered from excessive mucous in his nose and throat and made funny noises that we thought were cute, again not realizing that there was actually something wrong.   For up to four months after his birth, the doctor insisted that this was residual mucous from being born.  This seemed strange to us but what did we know?   He would wake us up all through the night and made a lot of noise when he was sleeping which we attributed to the excessive mucous.  He had a persistently runny nose (clear mucous) and seemed to be more comfortable when he was inclined in his bouncy chair, swing or with a crib wedge to keep his head elevated so that he wouldn’t choke on the mucous.   Others noticed his mouth-breathing which we realized was from him being unable to breathe through his stuffy nose.  All of this contributed to our poor baby constantly waking up throughout the night.

I was exhausted and started to suspect that my son might have allergies.  I begged the doctor to refer me to an allergist.   I was told that it was impossible for someone so young to have allergies but I insisted on seeing someone to confirm my suspicions.  I personally suffer from seasonal allergies and was sure that his clear mucous was a sign that he was allergic to something.   My doctor granted me with a referral to a paediatric allergy specialist and at 4 months of age, we had him skin tested for a variety of environmental allergens.   Much to the doctor’s surprise, our son tested positive to Dog Dander and Dust Mites.   She explained to us that children so young ordinarily wouldn’t test positive because they had not had enough exposure and enough time to develop a strong enough reaction for a skin test to show positive.   We left her office very upset because this diagnosis meant that we were going to have to make major changes in our house as we had our beloved pet dog Charlie at home.   Fortunately (although sadly), we were able to find a home for Charlie at my mother and father-in-law’s home in the country.   It was very upsetting to have to move Charlie out of the house but what alternative did we have?   He was making our baby boy sick.   We also started a battle with dust which I can say, is IMPOSSIBLE but we did learn a lot about how to make our home healthier for our son.  I share what I know about indoor air quality, dust and environmental allergens on the blog.

Our son introduced us to the world of parenting a child with eczema and environmental allergies.   Dealing with these allergies changed our lifestyle in many ways including changes in our household cleaning products, personal care products, and our lifestyle.   When your child is not feeling well it drains their energy and their spirit and we could see that our son’s allergies were adversely affecting his energy levels, his sleep and his quality of life.   We learned a lot during his first year about accommodating a child with allergies.

And then there were two….  Kate

   
Shortly before our son turned 2 years old, we welcomed our second child, a daughter to the family.   At 2 months of age she started to walk down the “allergy path”.   She had bouts of eczema and occasional hives.   Her face and hands were more often red and raw than not and would flare up for no apparent reason.   We ensured that all of the products we were using in the house were fragrance-free and hypoallergenic but her problems persisted.   We had moved into an older home shortly after her birth and we worried that the dated carpeting might be contributing so we tore out the carpets in her bedroom and replaced them with laminate floors but this didn’t seem to help.   At 6 months of age, things turned from bad to worse.   She was constantly erupting in hives and her skin looked horrible.   We also noticed that she was not gaining weight as we expected (she was 8 lbs 13 oz at birth-a big girl and we expected her to continue to grow as her brother had but she wasn’t gaining weight).     We knew in our hearts that she was suffering from allergies but could not pinpoint the cause.   This was an extremely stressful time for us.

To make a long story, shorter… we finally determined the cause of our little girl’s suffering at 9 months of age when we gave her yogurt for the first time.   She immediately reacted and after a trip to the emergency room, we had a diagnosis of milk allergy.   Further testing revealed that she was also allergic to eggs and peanuts. I was still nursing at this time so her only exposure to these foods prior to the yogurt test, was through my breast milk.   My consumption of dairy, eggs, and peanut butter had been causing the reactions in our daughter.   I felt horrible and overwhelmed at the same time.  I cried at the health food store because I didn’t know what was safe to eat and when the clerk recommended hemp milk because she felt soy milk wasn’t healthy either, I burst into tears!   I did not want to drink hemp milk!!!    I immediately stopped consuming all dairy, egg or peanut containing foods but still felt nervous that I may have accidentally ingested something that was harmful for her and feared that I would pass something through to her from my breast milk again.  I would feed her in the evening and feel worry that she would have a reaction to something I had eaten in the day.   I decided to wean her at that point because I was too worried and exhausted and overwhelmed.   She was one year old.   We consulted with doctors and dieticians about what to feed our little girl.    We started her on Soy formula which we were apprehensive about because there was a lot of bad press about the possible effects of phytoestrogens but we had to feed her something and we were at a loss for alternatives.   At 15 months of age, she hadn’t gained any weight between her 12 month and 15 month appointments and our doctor called her “failing to thrive”.   At that point, we were referred to a paediatrician in place of our family doctor.

The paediatrician assured us that our daughter was going to be ok and that it was to be expected that she would be small due to her dietary restrictions.   A few incidents happened over the course of her 2nd year where she had skin contact with milk ingredients and broke out into hives but nothing life-threatening occurred.   We lived every day with an acute awareness of how dangerous the world was for our little girl with crumbs and goldfish crackers lying in wait to harm her.   As a mom of a child with food allergies, you become a hawk for food within any close proximity to your allergic child.   You are constantly watching them to make sure that they don’t put anything unsafe into their mouth (which is a FULL TIME JOB when you have a 2 year old!).  You are on constant alert for potential danger.   Life in our household is much different than what I see at our friends’ places.   We only eat in the kitchen and hands and faces are washed immediately after eating.   We have strict rules about food and being safe around our daughter.  Our 5 year old son had to learn that he couldn’t play-wrestle with his sister and must wash his hands and face and brush his teeth if he had eaten anything that would be deemed unsafe for her.  Our daughter’s allergies are not just limited to food products.   We have to pay attention to soaps, hand creams, and other personal care products to make sure that they do not contain unsafe ingredients for her.   Temporary tattoos, lip balms, face painting makeup,etc., all have to be scrutinized.

Shortly before her third birthday, my daughter had a severe anaphylactic reaction to almonds in the car on our way home from her gymnastics class.   In the past she had tested negative to tree nuts but we quickly learned that the results of a skin test versus actually ingesting the food could be so different.   Immediately after eating a bite of a cookie that had almond in it, she sneezed several times and her cheeks flushed.   I was instantly nervous and called my husband immediately to discuss the situation.   I tend to be more reactive and panicky and I wanted his reassurance that she would be fine.  He reminded me that she had tested negative to tree nuts and said that we could have her retested to be sure at our upcoming appointment with the allergy specialist.   I haven’t mentioned this but our daughter can be a bit of a drama queen and has been known to fake allergy attacks to get a rise out of her panicky mother, so my husband assumed she was playing me a bit.

We continued driving along and she started to fall asleep which I was not comfortable with.  I kept poking her gently and trying to keep her awake by singing and talking to her but she couldn’t keep her eyes open.   Then she started to vomit all over the car and I knew that we were definitely in trouble.   I pulled over and called 9-1-1.   It took an eternity for the ambulance to arrive (or so it seemed) but she was doing ok during this time.  She was crying and saying that her stomach hurt and I told her it was good that she was getting the food out of her tummy.    I was anxiously awaiting the ambulance but did not see any signs of her condition worsening and did not feel like I needed to give her the epi-pen (which I have never done before).   When the ambulance arrived, the driver listened to what had happened and told me to take her home and to give her some benadryl there.   I didn’t feel comfortable with this suggestion and said that I was concerned that she had been having difficulty staying awake and I worried that she would pass out.  The attendant said that food allergies would not cause someone to pass out which was not what I have heard.   I told him that I have read that food allergies can cause an anaphylactic reaction which can cause a sudden drop in blood pressure resulting in fainting.   He agreed to take her into the ambulance for further assessment to appease me.   Once in the ambulance, she started to pass out again and he said that perhaps we should take her to the hospital after all.   He insisted on me taking my own car and did not allow me to drive in the ambulance with my daughter.   So there I was, following behind the ambulance in my car and calling my husband on the cell phone to let him know what was happening.

When we arrived at the hospital, the ambulance driver pulled over and rolled down his window to tell me to go ahead and park and they would meet me inside.   I assumed that my daughter must be doing fine and agreed.   After parking four stories up and making my way from the parking garage to the Emergency department, I inquired at the nurse’s station about my daughter’s whereabouts.  I was shocked to find out that she was in the acute resuscitation area and that her condition had worsened severely over the course of her ambulance ride to the hospital.   I could not believe how my little girl looked when I saw her…she looked like she had been in a fight with Mike Tyson.   Her face was bright red and swollen with her eyes swollen shut.  She had hives in her armpits, groin and behind her knees that were bleeding because she had been scratching them.   The nurses were yelling at me and asking me why I hadn’t administered the epi-pen and I informed them that she didn’t look like that at all when I was with her and that the ambulance attendant had told me to take her home!  I can’t even imagine what would have happened if I had taken his advice.

The story does not end here.  We had to wait for the doctor to see her before anyone would administer medication to stop the reaction.  I can’t tell you how frightened I was seeing her in the condition she was in and no one was helping her.   Apparently there was another patient having a stroke in the next room and we had to wait for the doctor to finish with that patient before my daughter could be attended to.   When we finally saw the doctor, my daughter was given prednisone to reduce the inflammation in her body and antihistamines by I.V.   We spent the afternoon at the hospital waiting for the swelling to go down.   We had chest x-rays done to make sure that her airways were clear before we were able to take her home.   I was told to monitor her for 36 hours and to make sure that I gave her Benadryl every 4 hours to ensure that she did not start reacting again (this is known as a biphasic reaction).   I slept with her in her bed all night because I was terrified that something would happen as she slept.  I had always known that my daughter’s allergies were serious but before that day I didn’t realize how one bite of a food could be so dangerous.   I was shaken that day and found that experience to me one of the most traumatic of my life.

A wake up call

Recognizing the true severity of anaphylaxis was a huge wake up call for me.   It taught me that I needed to take vigilant care of my family and that included taking really good care of myself. It taught me how to listen to my intuition and to trust my inner voice. It brought me back to the basics in life – eat, sleep, live, repeat. It brought me deep into my kitchen as well as connecting me more deeply with the ingredients and processes involved in preparing safe, healthy and delicious meals that would not make my family members ill.   I learned the benefits of cooking real food and being conscious of what ingredients we are consuming; that stress places a huge weight on our health and happiness and must be addressed; that exercise and self-care is nonnegotiable;  that speaking up HELPS others; and that living a “normal” so-called life is all any of us really wants.

You are not alone!

I can remember how overwhelmed and alone I felt in all of this in the first few days following my daughter’s anaphylaxis.  Not knowing what to eat or how to perform basic daily functions of cooking and cleaning without risking her health.  It was awful and precisely why I created The Allergy Mom website.  Through my blog posts, media interviews and speaking engagements, my journey has resonated with thousands of people around the world. Patients and their caregivers who were desperately seeking support have found answers to help them live their lives to the fullest.

That is my long-winded story of how I became the allergy mom.  As an allergy mom, I know what you’re going through.  I hope that this website will somehow make life easier for your family.  My goals for this site are to provide a place where we can share our stories, resources, advice, and more to support each other.   Thanks for taking the time to read my story and please get in touch with me to share yours.

In good health,

Melissa xo