Tuesday, March 27, 2012

Stomach Viruses and Ear Aches...FPIES style!

It's been another crazy few weeks trying to keep Brendan healthy amidst all the nasty viruses running rampant locally.  My five year old, Gabby, came down with a stomach virus after visiting the bathroom during my fourth grader's spring concert at school one evening.  I did my best to wash her hands but the bathroom was out of soap and paper towels and in turn we were out of luck.  Side note:  I understand the need to conserve water but why on earth would a school still have those faucets you have to push every ten seconds while lathering up and rinsing thoroughly? It's fine if you have access to a paper towel to push back down on the faucet every time but if you don't, you are just inviting those germs back onto your hands.  Let's face it, most kids don't think to grab a paper towel to turn off a faucet (unless that child belongs to me) much less use one to open a restroom door upon exiting.  Okay, yes, the germophobe in me is showing but good grief, when you have a child who cannot afford any additional gastrointestinal problems, viral or otherwise, it's those little details that make a huge difference.  Needless to say, within 72 hours, Gabby started vomiting and the sanitizing frenzy began! 

Brendan has been doing so well with food trials, tackling his oral aversion and showing a marked increase in hunger that I will do whatever necessary to avoid any setbacks.  So, yes, when the stomach virus reared its ugly head at the elementary school, I contacted the school nurse, office, and teachers to let them know my children would not be attending school for the week.  Is that a bit extreme?  Yes, under normal circumstances.  But, we are not the norm.  Will it make a difference?  I don't know but when you have a child like Brendan, you will do anything in your power to avoid any complications.  But, back to poor Gabby.  She was miserable for a few days but rebounded quickly.  The five of us avoided catching the stomach bug from her with constant hand washing (before eating/drinking and after using the restroom), bleaching common toys, bathrooms, kitchen counters, and sanitizing phones, keyboards, light switches, door knobs, remotes, etc. with Lysol.  I believe in cleaning with green products but honestly, little has been proven to kill the stomach virus (norovirus) except bleach and possibly Lysol.  Clorox and Lysol wipes do not kill the stomach virus nor do hand sanitizers.  Hand sanitizers kill bacteria only (they also kill the good bacteria) and there are only a few (not generally available to the public) which kill viruses.  Hand washing is preferred but when it is not an option, the recommendation is hand sanitizers.  Stomach viruses are non-enveloped viruses which means they are more difficult to disable and can live on surfaces longer.  Here at home we utilize essential oils such as hyssop, frankincense, clove, eucalyptus, cinnamon bark, oregano, clary sage and many others via carrier oils (olive, almond, jojoba) as well as diffusing these oils which have antimicrobial, antifungal and antiviral properties.  We also subscribe to the old wive's tale of drinking a minimum of three glasses of red grape juice and/or eating red grapes daily when exposed to a stomach virus.  Supposedly, doing so alters the Ph level in your intestine which discourages the growth of invading viruses.  I can only speak from experience.  We have utilized a regimen of high potency probiotics from our naturopath (TherBiotic Complete by Klaire Labs), grape juice and red grape consumption, frequent hand washing and sanitizing common household items.  We were able to keep Brendan healthy after Gabby's bout with gastroenteritis and fingers crossed he will stay that way! 

And of course, if you have an FPIES child, chances are, antibiotics may not be their friends.  Brendan was prescribed antibiotics once when he was younger for an ear infection.  Let's just say that was the beginning of pure hell for two weeks.  He reacted horribly to them and could not wear a diaper for a week due to a peeling, raw rash.  So, a few months ago when Brendan presented with the beginnings of a double ear infection, what did I do?  I took him to our naturopath who confirmed what I suspected.  I explained how antibiotics would do a number on Brendan and she suggested we use garlic mullein drops (HerbPharm) in each ear while lightly massaging (pulling down slightly) behind the ear.  Apparently, this is the way to help drain the eustachian tube to avoid congestion in the ears.  How is it that I have four kids and don't already know this?  Anyway, we tried it and it worked wonders.  After three days, I took Brendan to our family physician and he said Brendan's ears looked great!  Our naturopath gave us recommendations for other natural goodies to alleviate respiratory symptoms and let's just say the warming chest rub and cough syrup made by Gaia Kids, Virattack by HerbPharm (which we also took while Gabby had gastro symptoms), a shitake mushroom extract, and a Chinese herb for kids called Yin Chao Junior saved Brendan from antibiotics.  I recently used the warming chest rub when I had a bout with allergies.  Just a warning though, check the ingredients of any and all over the counter, prescription, and herbal supplements as they may contain an ingredient specific to your child's FPIES trigger.  Here's an interesting observation though.  Yin Chao Junior contains rice sprout (rice is a huge trigger for Brendan) and he tolerated the Yin Chao just fine.  Go figure.  For those who are not related to an FPIES child, I apologize for what must seem like a crazy, obsessive-compulsive post.  For those who are obsessive-compulsive or a germophobe, ENJOY! ; )  

Wednesday, March 7, 2012

Food for Thought...Pun Intended!

So much has happened since my last blog post...where do I begin?  I've had so many thoughts on various FPIES topics and of course, some updates on food trials!!  We have trialed grapes and blueberries and so far it has agreed with Brendan.  In fact, Brendan seems to have turned a corner and is showing interest in food the last few weeks!  We started a beef trial months ago but could never get him to consume enough to call it a consistent pass.  As of last week, he has been eating ground beef successfully.  We are hopefully adding three safe foods to his diet!  I don't know that there has ever been a time in Brendan's life when I felt as though we could actually feed him.  This is a truly wonderful feeling.  To date, his safe foods are almond milk, potato, banana, strawberry, corn, pineapple, beef, (fingers crossed) grapes and blueberries.  We have been experimenting off and on with tomato in the form of canned, diced tomato and olive oil drizzled over beef for spaghetti sauce.  We are pretty certain he is okay with tomato in this form as well.  I guess you could say we have also dabbled in the "rotation" diet...Brendan's doing, not ours.  I never thought we would see the day when Brendan could tolerate ten foods at once!  I am still nursing him for additional nutritional purposes and in the event of a reaction as it seems to help him get back to baseline pretty quickly afterwards.  I am thinking if things continue as they have, we may consider weaning by summertime.
Our series of FPIES successes have been long overdue and quite welcome I have to admit.  Personally, I have had so much going on since January that I can't even think straight most days.  I lost my grandfather in January and my grandmother just a month later.  Needless to say, Brendan and I flew to Texas twice and had a lot of time to reflect during those times.  (FYI, for those who know the difficulties in traveling with a child who has severe food allergies, boy, do I have some tips for dealing with TSA at the airport when they want you to open a full supply of extremely perishable, irreplaceable foods.  I will save that for a future blog on traveling with the FPIES child.)  I now have a better understanding and appreciation for the persistence and faith that was handed down from my grandparents, to my parents and in turn to me.  I am thankful for those very things that keep me going and help me to keep my family going during difficult times.  I had an opportunity to feel the love and support of not only my parents and sister, but also my extended family.  I was also blessed to make it in time to say goodbye and watch two beautiful souls leave this earth.  Grandpa and Grandma, I will miss you so much! 

I am still left with a lot to process about FPIES and life in general.  I do know one thing though.  I will never again ask "Why Brendan?  Why us?" when I think of FPIES.  I believe that God carefully selects us to support, love and nurture these very special FPIES children for a reason.  He believes I am capable and therefore I need to show up...for my family and most of all for Brendan.  I have to stop being so scared of food and venture out with new food trials for Brendan's sake.  I also need to help others.  I am always so conflicted over what I say or don't say in my blog posts.  I want to offer support and encouragement to any FPIES families who follow our story but I am also a firm believer in honesty.  I try my best to keep it positive but at the end of the day, I am just a scared FPIES mom who wants to keep things "real".  FPIES is not pretty and sometimes all we can do is wait for our happy ending.  It's out there, I do believe, but when and where, I cannot be sure.  Thanks to everyone who continues to follow our story, you will never know how much that means to my family.