How I Became the Firefighter Mom

photogrid_1460005420803It doesn’t take a genius to understand from the name of my blog that I am a Mom.
A Mom to a very special girl!

Why Firefighter? Well that’s what makes my daughter special. My daughter is the Girl on Fire, and that makes me the Firefighter.  I can already imagine the confusion on your face. Allow me to explain. Take a deep breath and be ready for a firestorm! This won’t be one of those mommy blogs written to share motherhood advice and anti-anxiety tips. In fact, it is a challenging blog. I will invite you to our daily challenge, which will challenge your mind and heart on many levels.
Your first challenge will be to spell the following word: Erythromelalgia! Try it! Nope! Too tongue twisting, no worries, try EM for short.
EM is that special condition that has transformed my daughter overnight into the Girl on Fire and consequently, I became the Firefighter Mother!
Shortly after her 8th birthday my Princess, started complaining from pain in the bottom soles of her feet. The fact that she practiced classical ballet twice a week, made me think it must have been all the new steps she’s learning. Within an hour, the soles of her feet turned bright red and she was screaming! Allergic reaction you say? Aha! Her Dad and I thought so too. Easy, call the pediatrician and get the Benadryl ready. Sure enough, the doctor recommends antihistamine for few days. But Mommy had a hunch! A bad hunch! This doesn’t look like an allergy, and if it was, I want to know what caused it. Besides, there was no itching, no trouble in her breathing, just her screaming of burning and pain in her feet. We went to the nearest Emergency Room which was five minutes away, and I took the Benadryl and Epi-pen with us in case things got worse on the way. Yes mommy has an extensive medical kit ready, thanks to previous experience that taught me to always be well prepared.

That ER visit was to be followed by many more over the course of 8 weeks. Her allergy tests were all negative. The highest doses of antihistamine and painkillers were not helping. The redness and swelling has spread from her feet upwards, and the pain was strong enough to keep us awake all night and day, while she kept screaming and crying about the burning and pain. There was a fire in her feet and hands, a fire burning her body, and no I do not mean a fever. The redness and swelling kept dancing around her skin randomly, literally from head to toe, as if owning her body. The Emergency Doctors had never seen anything like it. I took her to more than one Pediatric Allergist, and to a Dermatologist, but none was able to give a diagnosis. Always ended up with “possibly an allergy”. Antihistamines, Cortisone, Pain Killers, nothing helped.

That’s when I put on that Firefighter Hat on. I was determined to find a diagnosis. I took pictures of her feet, hands, ears, neck, shoulders, face, thighs, anywhere the redness showed. I sent emails to doctors, of different specialties around the world, either directly or via family relatives, with a short case summary, recent blood tests and the pictures. And I waited and waited for any reply, that would be of an explanation.

Her skin was dressed in red for hours, it would cool down for an hour or two, only for the fire to rage again for many more continuous hours. I put the Air condition all over the house on the coldest temperature, day and night, until it felt like we were living in an igloo. She dipped her feet and hands in cold water to keep them cool, but I had to change the water often because it would turn hot a few minutes after her burning skin came in contact with the water. The heat radiating from her skin was so prominent, that I could feel it from a close distance. The doctors were still treating her for an allergy, but I knew it wasn’t, not after weeks of sleepless nights.
Frustrated and feeling helpless, I googled burning feet and hands. BINGO! Erythromelalgia. The Man on Fire Disease. A rare condition, but the description, pictures and symptoms, were a perfect match.
Mommy was relieved, I found a name for her symptoms, all we needed was to find the medicine for it. Little did I know, I will be wearing that firefighter hat far much longer than I thought. There will be no one single medicine, for there was no cure! My Princess has just turned 8 and along with it she was doomed to a life of burning alive. Her 8th birthday gift was the title of a Warrior because Erythromelalgia or EM will make her body flare and burn almost every day and night, and she will have to face it with no cure.

Our journey to get a formal diagnosis from a Doctor who is actually familiar with EM is about to start. Our hope for a cure is our new driving force, and it shall be stronger and brighter than any burning fire!

For more about Erythromelalgia please check The Erythromelalgia Association website on the following link: http://www.erythromelalgia.org

 

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