Sunday, April 17, 2011

The Latest Game Plan

I am still trying to interpret and understand Brendan's test results from New Jersey.  What we know so far is...he reacted to soy, dairy, and wheat.  He is also not outgrowing FPIES anytime soon.  What does this mean?  Time for a new game plan. 

Last weekend, Brendan also reacted to his elemental formula, Elecare.  Where does this leave us?  I am now breastfeeding Brendan almost exclusively with the exception of the occasional bite of potato and/or banana.  I have been researching, researching, and then researching some more.  Where do we go from here?  Well, we are in search of a single strain probiotic Brendan can tolerate.  Once we trial a probiotic, we will then move forward with a GAPS diet.  The idea behind a GAPS diet is that it promotes gut healing.  Gut healing is essential in encouraging oral tolerance of foods. 

I am trying to go back to the beginning.  I am retracing my steps from the moment Brendan was born until present.  I took a round of antibiotics (due to mastitis) while I was nursing Brendan during the first month of his life.  Did this affect his gut flora?  Brendan was also given a round of antibiotics for the beginnings of an ear infection during the second half of his first year.  He had a horrible reaction to the antibiotics.  I am also learning that there are so many things which affect the type of bacterial strains found naturally in our gut.  The method for which we come into the world affects gut flora.  Mom and/or baby's use of antibiotics affects gut health.  Breastfeeding vs. formula feeding determines the particular strains in the intestine.  Did you know if an exclusively breastfed baby is fed infant cereals prior to seven months, it can also hinder the absorption of iron?  Is this in combination with Brendan's first FPIES reaction to rice cereal what caused him to lose stability with his gut health?  There are so many questions I am trying to find the answers to.  Why am I trying so hard to retrace my steps?  The answer is simple.  This may help us to better understand what is going on with Brendan and allow us to help treat him more effectively.

The question now is this.  Do we start Brendan on probiotics while breastfeeding only?  Or, do I allow him to start the probiotic treatment while continuing with bananas and potatoes in his diet?  The only reason I am considering allowing him to eat banana is because a) banana is part of the GAPS diet and b) can my milk supply keep up with Brendan during this trial?  White potato is not part of the GAPS diet so I may consider removing it for a while.  I have had a hard time determining what is causing his system to continue to react.  He can outwardly "tolerate" both banana and potato but his stools are greasy looking, foul smelling, and contain pieces of undigested food.

Obviously, Justin and I have a lot to consider.  I also want to make sure I am well versed in the GAPS diet and probiotics prior to moving forward.  Mostly, I am trying to wrap my mind around the long journey ahead of us.  We are looking at a huge lifestyle change.  If Brendan has to avoid gluten, dairy, and soy, we as a family may slowy eliminate these things from our diet in support of him for many reasons.  My primary job is to ensure Brendan only gets the purest of food sources with minimal processing and contamination.  As Brendan gets older, he understands more and more the difference between what he eats and what we eat.  The guilt we feel only grows stronger as we progress with FPIES.  The restrictions of Brendan's diet brings forth more challenges than ever before.  It will also bring about more changes.  I will not be afraid of change anymore.  Change will force us to adapt.  Adapting will allow us to cope.  Coping will, in turn, allow us to live.

Saturday, April 9, 2011

A Prayer for the FPIES Parent

I pray you find the strength within to keep going. To give it your all even when you fear there is nothing left to give.
Allow yourself to honor your emotions whatever they may be.
Even in the darkest of times, you are not alone.
Have faith that this experience will forever change you in a positive way.
Find comfort in knowing you are saving your child.

It seems that so many of us are going through a difficult time right now and I hope this helps in some way.  -Brenda Incarnato

Thursday, April 7, 2011

Somebody is going to have to shut me up...I'm tired and I've got a fire up my butt!

So, yes, I'm still feeling defeated but I'm also feeling a slew of other emotions.  I want to stop feeling sorry for myself and honor what my family and many other FPIES families are going through.  I'm mad as hell and ready to make a change!!

I finally made "the call" to New Jersey to get some feedback on Brendan's test results .  I left a voice message and we will wait to hear back. I'm tired of being patient, understanding, and compassionate.  All I want is to make a difference...for my son, my family, and to be a voice for other families.  There are so many moms who are working hard to make a difference.  It is impossible to be on the same page all the time, but the need to respect each other and to HEAR each other is vitally important.  We are all dealing with such a unique and misunderstood syndrome...how else CAN we act???  We are all seeking a connection, an understanding, for what we are going through.  If the outside world can't understand that, then I don't know what else to say.  I do believe that our family and friends want to be there for us, but they don't know how.  When I talk about Brendan's oral food aversions, I'm not making excuses.  I'd love nothing more than to see him eat real food and stop nursing.  When I say my children put up with so much and see more than they should, I'm not kidding.  My children watch their youngest sibling choke on vomit and cry in pain.  Birthdays, family dinners, holidays...it is all so difficult when you have a young child who cannot eat.  Emergency room visits, doctor appointments...all take their toll on an FPIES family.  We get to a point when we don't even talk about it because it is such the norm for us.  We are afraid to say anything for fear of upsetting anyone or hurting anyone's feelings.  So, why don't we tell them?  What is it that would help FPIES families the most?  I can think of a few things.  Help with everyday life...child care, dinners, a shoulder to lean on...some RELIEF!  I have never expressed what we need before because I did not want anyone to think I felt "entitled".  Anyone who knows me understands that statement.  My husband Justin and I have always figured things out for ourselves.  But, unfortunately, FPIES is bigger than us.  Until we have a standardized treatment plan in place, there is no relief for our families. 

So, what am I going to do about it?  Well, I am starting a local Facebook page for FPIES families.  I am going to appeal to the team of doctors we have for Brendan and ask for their help.  I am not just asking for help for my family but for every other family.  There is something everyone can do.  What can you do?  Please help us raise awareness...through conversations, participation in blogs and Facebook pages, fundraisers...help your local FPIES family.  I receive emails from FPIES families who read my blogs and friends old and new...that is what motivates me in addition to the obvious...my little boy Brendan.  Please help us...it's time for a change.

Tuesday, April 5, 2011

Something's Gotta Give...

Wow, it has been so long since I have blogged that I almost forgot my login and password!  I keep asking myself why I stopped blogging.  Is it because things have been quiet in our FPIES world?  Nope.  I think I am just at a loss for words these days.  I try so hard to be positive but I'm tapped out at the moment.  I have honestly been afraid to blog because I am scared of the words that might follow...those words that express my true feelings.  But, here it goes anyway.  I apologize in advance if I offend anyone as that is not my intent.  I am grateful to my family and friends who are cheering us on in their own way.

Today we decided to get out of the house and have lunch at a new restaurant in downtown Kirkland.  As we are driving, the kids are bickering, Brendan is crying and Justin and I are just silent because we are both tired.  The kids have been on spring break and Justin took a little time off from work.  His Vegas business trip a few weeks ago was very hard on us here at home so he has been trying to help me get caught up.  As we were driving, I just started crying and told Justin that something has gotta give.  I don't know how much more we can take.  I'm tired of watching Brendan go through all that he does, tired of waiting for results from New Jersey, tired of trying to get him to drink his damn Elecare and most of all tired of this fight that prevents me from being all that I can for my family.  I keep telling myself that things aren't so bad...it could be worse.  Well, yes, it could be worse but couldn't it be better too?  Can it please just get better?

I will switch gears for a minute and talk about Brendan.  We are still trying to get him to drink his Elecare but he is not interested most days.  He has not wanted to eat his potato and banana the last several days either.  I know that he "should" drink the Elecare if he is hungry enough.  But, realistically, we are dealing with a kiddo with some major oral food aversions so all that typical toddler logic goes out the window.  If the texture, temperature or taste is not just right, he will reject it.  If something upsets him and he starts crying, well, you can scratch that feeding session.  We have tried all the tricks and suggestions and it is still a struggle.  Needless to say, this is one of the longest food trials we have encountered thus far.  We discovered he lost a pound within a week during his last doctor appointment but he is still within the normal weight range so that is good.  He received another iv iron infusion at his last hematology appointment but we won't have to see them for another few weeks.  The hematologist is hoping Brendan will drink enough Elecare so that we can ease up on the iron infusions.  Lastly, we are still waiting for the results from our New Jersey appointment.  I have not even tried to call since I know other moms are waiting as well.

I don't really feel like Brendan is moving forward.  I feel more like we are stuck.  Yes, our family is most definitely stuck.  I can't speak for my husband Justin but I know I'm not handling it so well.  We try to be a united front but my goodness, a child's chronic illness will definitey take it's toll on every aspect of your family life.  Justin and I try our best to be there for each other but that is a pretty tall order.  When both parents are filling everyone else's bucket, there is little left over.  Okay, so why do I feel like we are so alone?  Yes, it is our battle to conquer.  But, there are days when all I want is someone on the outside who understands what we are going through.  There have been so many times that I have watched Brendan go through so much and so many times I have pleaded with doctors to help us.  There have only been two people who have accompanied me during these doctor visits because I don't like showing my vulnerability during those times.  I try to keep things together on the outside but on the inside it is quite a different story.  Don't get me wrong, I love my life and my family.  I am thankful that I was chosen to experience this journey with Brendan.  But, it is the most difficult and frustrating thing I have ever been through.  I just want to fix my son so he can experience things like everyone else his age and so he can be healthy!  I also want my family back.  I want things to go back to the way they were before FPIES.  Thank you for indulging me in my rant.  It doesn't change things but this blog has definitely become my "therapy".  If nothing else, I hope that by sharing my feelings, other FPIES parents can find a little comfort in knowing they are not alone.