Thursday, October 2, 2014

Life With The Never Ending
Virus-Like Food Allergy....

So you say you hate being sick and it sucks to have a cold, agreed.  

You say, tis the season (allergy, cold, or flu season) and that you feel like you are dying, agreed it's not fun. So you take some medicine to help you feel better and comfort yourself until the ailment goes away.

Funny how anytime we are sick, we absolutely hate it and are miserable.  Why you ask?  Well we do not feel good and our body hurts, logical enough.  But somehow we seem to have some type of medicine or concoction to help sooth ourselves or someone we love. 

Say we have a really bad belly ache from something we ate that didn't agree with us... we run for the tums, pepto or even ginger to help us feel better and find some comfort, right? (hopefully).

Now lets say, the virus, flu or cold starts to go away, you feel better and you stop your medicine and carry on with normal life, sounds great right, yes in a normal world this would be ideal.

Ok, not so normal world..... you get better and then you catch it
again from another family member and you feel yucky all
over again.... actually that can still be in the normal world ;-) .

Now not so normal world... your two week flu with all the major symptoms of muscle ache and pain, nausea, vomit, dehydration, diarrhea with blood, belly pain and no medicine to help you...
Miserable, right?  


Even worse.... this virus, flu or cold is there everyday your
whole life, caused from food proteins.  One crumb or lick of thisfood could put you in the hospital from shock and dehydration.
 You have no safe medicine at home to help your body fight it off.  Soyou get put in the hospital with IV's and fluids to help you stay alive, but the pain remains.
 There is no EPI PEN for FPIES Reactions!!!!

Imagine your child sick and the care that you give that child while they are bring them chicken noodle soup, crackers, ginger ale and medicine to help the fever and food stay down.  Now Imagine being a mom of a child that has a food allergy that mimics a virus - EVERYDAYThere is no getting better, there is no medicine to help with the symptoms, there is no food to help comfort them, there is no way to promise it will end in a couple of days.  Oh and I forgot to mention.... there is very little sleep, but...

There is love, hope and toys... 

I hope that one day this hell will end for my child.  I hope that one day he can sit down with us as a family and have a holiday dinner, together. I hope there will be a day that he can go to school and run and play with the rest of the kids and not fear that one piece of food
will put him in the hospital.

Until then, yes we have our good days were we celebrate being together and try to bring some normalcy into our lives...
those are far and few between.
We hope that by posting this people will understand a little bit more as to how Mack feels.  To suffer every day with EoE and FPIES.  And when  you see him smiling and running that means he is actually having a good day.  Please, smile back, because unlike a virus, flu or cold,
he is not contagious.

He is just a boy!!!

DISCLAIMER:  The pictures used in this and all posts are property of Mack and family.  Please no copying or using his pictures or stories without written permission first from his parents.