Friday, August 24, 2012

Third Birthday, Magical FPIES Milestone?

So, we are fast approaching Fall.  School is about to start and Brendan's third birthday has passed.  Isn't three supposed to be the magical number?  You know, that number they throw at you to give you some sort of hope that your child has outgrown FPIES and it has become nothing but a distant memory?

Although, it doesn't feel like it will ever be a distant memory...especially for Brendan.  We took him for his three year well exam yesterday and the moment we pulled into the parking garage of the doctor's office, he started sobbing and screaming "No, no, the hospital is bad!".  Wow, if he felt this strongly about our family physician, how will he feel when we have to go back to Children's hospital to check his iron levels in the next few weeks?  I think I will be taking his dad as back up on that day.

We updated our family doctor on Brendan's latest rice food trial, the fail and the plan to avoid grains until he is 5.  We discussed immunizations and I agreed to the administration of previous shots but I was still adamant in my refusal of certain vaccines.  We will worry about that if and when he attends public school.  There was also the discussion (on my part) about Brendan's clumsiness in the gross motor arena.  We are always assured that everything is normal considering Brendan's late start with walking.  I'm sure the doctors are right but I have to admit, I always worry whether his prolonged malnutrition will have any lasting effect on his physical development.

Things are a lot better than they were this time last year.  We are moving forward, counting our blessings, and Brendan continues to amaze us every day.  There is not much else to report since we are not considering grain or soy food trials.  We will just continue to be agressive in the reading of food labels and prepare Brendan friendly meals at home. 

Oh, I almost forgot...if anyone was wondering about the outcome of my grievance with our local ER, I met with them.  They offered the initial appropriate attention and sincerity that one would expect.  I saw the typical shocking looks and emotional responses when you share your child's FPIES journey but that's kind of where it ends.  We've come to terms with the fact that we will deal with reactions at home but at least we won't waste time driving to the ER and explaining Brendan's condition anymore.  I suppose I've come full circle.  At the beginning of Brendan's journey, I used to wonder where all the seasoned parents of older FPIES children go.  Now, I understand.  Some stay active in the online forums and some choose/need to put it past them and move on.  Since we are still dealing with FPIES, I can't say where we will land.  I hope to continue blogging but we definitely fall off the radar more and more.  I choose to look at it as a good thing.  It means we are living more and finding ways around FPIES. :)         

Wednesday, July 18, 2012

Paleo Diet

I have read so much over the last few years about various diets...GAPS, specific carb, the list goes on and on.  I have also since learned that I "probably" have adult FPIES.  I've suffered from severe GI problems and food aversions for years.  There have been times when I have been on the verge of vomiting while breaking out in a cold sweat after eating certain foods as an adult.  On so many nights I would (and still do) lie in bed, afraid to roll over, much less move a muscle for fear of throwing up after eating certain foods.  I guess you can call it an “ah ha” moment…the moment you realize FPIES runs in the family.

It also appeared as reflux, colic and formula intolerance in my oldest child.  He was fine while I breastfed and the moment we stopped, the GI problems started.  He ended up on a hypoallergenic formula and was a chronic spitter/colicky baby until one year of age.  Brendan’s older brother had a mild form of FPIES. milk and soy only.  He outgrew it after the first year and was a happy baby after.
Let’s now fast forward to four kids, many doctor visits and countless hours of research later.  Brendan and I were unknowingly following a Paleo diet.  Our diet consists of meats (baked, grilled or sautéed in olive oil), lower carb veggies, fruits such as berries, almonds, coconut and eggs.  Funny enough, the higher carb veggies such as sweet potato, are listed as common FPIES triggers.  We avoid all grains and rice and personally, I have never felt better.  My GI symptoms (which previously prevented me from functioning some days) have subsided.  I have eliminated all gluten, rice and processed foods.  Brendan also seems to do very well on this type of diet.  That is, of course, until we attempt to retrial things like rice.  Is there a correlation between a Paleo diet and FPIES triggers?  I don’t know, probably not but for us, it seems to work.

Sometimes I think about the advice I will pass on to my children in regards to infant care and diet.  What will that advice be?  Do not introduce rice or oat cereal as a “first” food.  Start with a meat or broth.  Don’t trial a new food for just a few days…do it for a few weeks.  Stay away from the all too convenient Gerber baby food products.  Make your own baby food with single ingredients and last but most certainly not least, breastfeed your child.  There are so many gut healing properties and natural probiotics in breast milk, how can you go wrong? 

Tuesday, July 3, 2012

Where Do We Go From Here?

Believe it or not, I can actually answer that question with clarity I have never had before.  First of all, I filed a complaint with the hospital who did not provide medical treatment for Brendan during his reaction.  Where will that get me?  I don't know, but someone needs to answer for that.  The last few years we have put up with so much in regards to lack of response and follow through from certain medical facilities and care providers.  In the past, I was too tired and overwhelmed to push back.  Today, I am still tired but not willing to give in.  I can't because Brendan deserves more.  The number of infants diagnosed with FPIES is growing.  Don't those children deserve the best in medical care as well? 

My mind has been swimming the last few days.  I have been contemplating next steps, who to contact, and how to best help Brendan.  I contacted Dr. Drew Bird in Dallas. Although he only saw Brendan once last summer, he and his dietician have done everything they can from afar to consult on Brendan's case.  It has been several months since we spoke, but Dr. Bird called me after hearing about Brendan's latest reaction.  He displayed a genuine interest and consulted with me about a game plan.  It is not the plan any of us had hoped for but the validation and support Dr. Bird offered was priceless.  I only wish we lived close enough to see Dr. Bird at the Food Allergy Center.  Nonetheless, he is willing to consult with us and his dietician is equally amazing.  If you live in Texas, I would strongly encourage you to take your FPIES child to see him.  There is not a current cure for FPIES, but he will listen, offer genuine support and help formulate a treatment plan specific to your child's needs.  As far as Brendan's plan, he has not outgrown FPIES.  FPIES to rice is one of the tougher ones to shake and the recommendation for Brendan is to avoid all grains (rice included) until 5 years of age.  What does that mean for us?  We will move forward with food trials (more cautiously knowing he still has FPIES), prepare all meals at home and stay away from even the gluten free foods since the majority utilize rice syrup or flour in their products. 

I understand FPIES is a rare disease that is unfamiliar to most.  I have accepted that fact and don't fault anyone for their lack of knowledge...that is unless you are medically treating my child. ;)  However, don't assume an FPIES parent is overreacting or scoff at their routine during meal prep etc.  We do things for a reason and that reason is to spare our child from a reaction.

And, Dr. Bird, if you are out there reading, you are truly a knight in shining armor for this FPIES family.  Validation is everything in our world.  I am a huge fan of your staff at the Food Allergy Center!  Many thanks!


Monday, July 2, 2012

Failed Rice Retrial

We began Brendan’s rice retrial yesterday.  Less than a tablespoon of rice and two hours later, the vomiting started with just as much force as usual.  We called an ambulance as the last ER doctor suggested and after convincing the paramedics we needed to go to the hospital, we were on our way.  Here we go again.

We arrived at Evergreen, gave the triage nurse the ER doctor letter with instructions to administer meds to counteract the side effects of the reaction and an IV, and that is when everything came to a halt.  Brendan had already vomited eight times in forty minutes and was down to bile at that point.  We asked the nurse for Zofran to stop the vomiting and she said she would check for us.  Thirty minutes later, we called for a nurse and asked again about the Zofran.  An hour and a half later and a third attempt to get the Zofran, we decided to pick up our sick little boy and leave the hospital.  It was obvious we were not going to get Zofran much less the IV hydration he needed.   We never saw the doctor either.  What would have happened if Brendan went in to septic shock?      

I am thankful he is okay.  Today has been a rough one for him while the rest of the food protein works its way out of his system.  As always, Brendan is a tough little guy and I don’t know how he does it.  I am an adult and just watching it occur scares me to death.  Justin and I really thought Brendan was outgrowing this.  He did so well with dairy and we’ve added a few fruits and veggies.  He is almost the magical “3” and his T-cells had well over the typical 18 months to “forget” the culprit food protein.  It appears FPIES is going to be with us a while longer.  So, we’ll make do with the foods we’ve been given and try to stay positive.  That’s our plan and we’re sticking to it.  However, that does not mean I can’t be furious about the lack of FPIES education in the medical community and what it costs my son and many other FPIES children every day. 

Wednesday, May 30, 2012

Food Passes and Future Plans!

It's been a while since I've blogged so I thought an update is in order...especially since we have so many positive things to share!  First of all, Brendan passed dairy!!  This opens so many doors for him and he is loving every minute.  He is eating his weight in yogurt and drinking cow's milk with no gastrointestinal issues at all.  I am so amazed at how well his body is handling it.  The last few months we have been pushing food trials and Brendan has been passing with flying colors.  We are sticking to meat/poultry, nuts, fruits/veggies, and now dairy.  Ha ha...he is pretty much on a Paleo diet!  I initially thought we would go for wheat and soy but why bother?  I have cut those (and all other processed foods) out of my diet and my overall health has improved greatly.  So, I'm doing the same for B.  The game plan is to retrial anything he failed previously (like coconut) while we wait for the kids to wrap up the school year.  Once school is out, we will move forward with the most important food retrial of all, rice!  We are hoping Brendan is outgrowing FPIES and a rice trial is the only way to know for sure.

Wow!  As nervous as we are, we are also so very excited and HOPEFUL.  Things are looking up and if all goes well, I will also be able to stop breastfeeding after almost three years!  We are so close we can taste it...literally.  I will continue to keep everyone posted.  On a more personal note, for those FPIES families still in the thick of things, I just want to say it does get better.  Brendan is proof of that.  Those words were hard to hear at the beginning of our journey and even three months ago!  Those positive statements are meant to encourage but all too often they are less than encouraging...believe me, I understand.  All I could ever think was well great, how do you propose we live in the meantime?  I cannot talk or even think about what Brendan has been through without choking up.  He is getting through it though.  We still have our worries but we are getting there and you will too.  My strong dislike of FPIES has not changed but we have and continue to learn a lot as a family.  The experience has built character and compassion in my children.  We have a healthier view of food and life in general which is vital in these modern days of convenience food and life in the fast lane.  Last but certainly not least, we have an appreciation for the little miracle that is Brendan.  After all, he is the one who has endured FPIES with nothing but a smile and gentle sweetness. 


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. 

Wednesday, February 1, 2012

Fake it until you make it...FPIES go away!

I don't have a great blog title, no real words of wisdom, as I tell those closest to me, I've got nothing.  I have not blogged in almost four months because I waiver back and forth between telling the truth or telling people what they want to hear.  Yes, Brendan has several foods he can tolerate...potato, banana, almond milk, pineapple, corn, strawberries, beef (we think?) and carrots.  Insert sarcasm here.  My son is two and a half and this is his diet...on the days I can beg, plead, or trick him into eating.  Most days, he nurses, drinks almond milk, and has a banana and/or potato.  When you have a child with FPIES, not only is it a battle to find a safe food, but it is also a fight to get your child to trust they can eat a food that won't make them sick, especially as they get older!

We have added a few foods but again, I have yet to find a feeding therapist (or anyone for that matter) to get him to eat.  I take that back.  My mother-in-law visited for a week recently and Brendan ate like a champ for her.  Now?  He won't even touch a potato.  What am I doing wrong?  There is nothing more frustrating than the inability to feed your child appropriately.  What am I supposed to do?  Well, I generally tell everyone Brendan is doing well...because he is, socially, emotionally,  and physically.  If you spend a few minutes with him, you would never know how he struggles.  I firmly believe he would not be doing as well if I were not still nursing him.  I thank God every day that I still have the ability to nurse him.  We have not been to the doctor since September because I wanted to give Brendan a break.  We have been treating him at home, although we are way overdue for a recheck on his iron levels etc.  We will resume our doctor appointments pretty directly.  I say this because I made an attempt to drink coffee for a few days, thinking he is older with a more mature gut.  We are done with the reactions through breast milk, right?  I was wrong.  He had horrible poopy diapers and slept a lot well after. 

To Nathansmom, thank you, thank you, thank you.  I have gone so far into my FPIES hole that I didn't think anyone was reading my blogs anymore.  Thank you for your recent response.  You have given me the inspiration to continue blogging.  I have found pretending is a way to cope, right or wrong.  Fake it until you make it, right?  We will get through this but for now, it's nothing more than frustrating and pretty isolating.  You can go through the motions and pretend everything is okay, even when it is not.  My best advice, hold on and don't let go because FPIES has to go away!