Thursday, July 26, 2012

Fpies is Not New To Us...

Our experience isn't our families first taste of FPIES  Our middle boy, William, is a FPIES success story. 

William had his first symptom of food allergy and intolerance at 3 weeks of age.  He was breaking our in eczema and hives from foods that were in my diet.  After I recovered from the shock of my GP at the time telling me his reactions were all in my head and I was suffering from PND (yes he WAS that callous!!) we sought a second opinion after second opinion when things weren't working and we were running out of safe foods and discovered not only did he have FPIES but also life-threatening allergic reactions.  He was in fact so sensitive he was airborne allergic to peanuts.

We had to learn to draw adrenaline up from an ampule with a syringe and practice injecting oranges until we were confident we could do it in our sleep as he was too small for an epi-pen.  We had countless sleepless nights watching his respiration praying that he would continue to keep breathing and the swelling would go no further.  Dozens of failed food challenges and trials but lots of interesting kitchen experiments with some unheard of grains and products!  We lost friends over Williams condition because they couldn't understand how a little boy could be SO sensitive to food.  I ended up being a recluse as we discovered the dangers of visiting other people because of food risks and contamination...  but to see our now 11 year old William now you'd think it was another child, not the one who was only able to consume neocate formula for his main nutrition for almost 3 years!!!

It was a struggle to get through.  Wil also failed to thrive (nothing to the extent of Aerynn though) and when we took him for his 4 year check up with the paediatrician she told us that she had never though that day would arrive.  She thought we were going to lose our little William!! 

I think I just wanted to note here that we HAVE done the FPIES and allergy journey before.  We HAVE come through the dark tunnel successfully and we CAN do it again :) 

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