Monday, October 10, 2011

Just when you let your guard down...

FPIES rears its ugly head.  Brendan had another bad reaction on Saturday that landed him back in the ER.  All I can say is shame on mommy!  Brendan had his first upper endoscopy last month that showed no inflammation so we moved forward with a reintroduction of carrots (which he passed) and trialed beef broth next.  He seemed to be doing well with both so we thought maybe he was outgrowing FPIES.  He had french fries at a steakhouse on Saturday and low and behold, three hours later, he was vomiting.  There is nothing worse than the mommy guilt you feel knowing you fed your child something that made him very ill. 

He is feeling better now...isn't it amazing how resilient children are?  I don't know that I would bounce back so quickly.  All I can say is I am so proud of my brave little boy.  He is always the perfect patient regardless of how miserable he feels.  FPIES taught me yet another lesson this past weekend.  It is important to find that balance between pushing forward with food trials in spite of your fears but also listening to your gut!  I could have sworn I learned this one already...didn't I?  I know it sounds like I am being negative but really I'm just reflecting and working through the emotional rollercoaster of it all.  Although FPIES seems to have taken a firm hold of our family, we are not giving in.  We continue to be optimistic.  Things will get better.  Brendan has his fair share of setbacks but we have been blessed lately with two successful trials as well. 

I must say, I was scared to death on Saturday once Brendan started reacting.  The reactions never seem to get any easier.  Justin was outside playing with the kids and visiting with our neighbors.  The moment our neighbors heard our panic, they immediately took the older kids back to their houses while Justin and I drove to the ER with Brendan.  I don't know what I would do without my wonderful neighbors.  There are two neighbors in particular who have become close friends of mine.  When I am overwhelmed, they are there for me.  When I don't have answers for Brendan and have an emotional moment, they are still there for me.  I can blow off steam, laugh, cry, and act silly with no judgement.  Andrea and Kristy, thank you for everything you do for my kiddos and for me!  You ladies help me to be the best mom I can be!

Wednesday, August 31, 2011

Labor of Love

I have been working with seven other amazing FPIES moms across the nation and today we are launching The FPIES Foundation!  We are so proud to offer interactive support resources for FPIES families everywhere.  We are also reaching out to medical professionals and receiving an amazingly supportive response.  This is an exciting time because we finally feel like FPIES does not hold all the cards. 

Do I need to be adding one more thing to my already overflowing plate?  No, but the amount of guilt an FPIES parent experiences is overwhelming.  There is always the second guessing and regardless of the number of times we are told we are doing all we can, it never eases the guilt.  I will never be at peace with the fact that I cannot fix my son.  But, what I can do is advocate for his present and future medical needs.  Taking on this huge project has not been easy but definitely worthwhile.  Justin and the kids have been so supportive and I am constantly amazed by the maturity of my children.  My oldest son Cameron has made me proud as he has been cheering me on this whole time.  Cameron, I know you read this blog and I just want you to know that even in the hustle and bustle of our everyday lives, not a moment goes by that I don't think about all four of my children.  After all, you were my first little man!

So, I hope our family and friends can celebrate and be proud with us...this is our labor of love.

Wednesday, August 3, 2011

The Ebb and Flow

I have been doing a lot of reflecting lately...mostly about the ebb and flow of life, relationships, and of course life and relationships within the world of FPIES.  We have had a pretty good summer so far.  I have limited the number of Brendan's doctor appointments and the kids and I have been lazying around for the most part.  Well, let me rephrase that.  I have been lazying around as much as a mom of four kids can.  We have a month left of summer vacation before we hit the ground running again with school activities.  I'm determined to somehow find a balance between the needs of my family and Brendan's condition.  I hope to find some time to volunteer in my school age children's classrooms this year.  My goal is to get back some of that pre-FPIES time.  It's possible right?

I am looking around at some amazing FPIES moms I have befriended along the way, and it seems like there is most definitely "the ebb and flow" of FPIES.  It is like a domino effect with our children.  One child experiences a complication or reaction and all the others follow suit.  What is the link between our children's illness?  How many countless hours of research and collaboration between desperate mothers must we endure?  I'll save that for another post. 

Back to Brendan...he has been in good spirits for the most part.  He has his days when he is cranky and/or tired and will take three to four hour naps.  This is partially due to his anemia.  Yes, it's back.  It took almost six months of iv iron therapy to improve his levels and only a month and a half for his levels to decline again.  We may have to proceed with iv iron again but for now, we are attempting to incorporate more iron in his diet by trialing beef.  I say "attempting" because he has had three reactions so far this summer which required gut rest.  So, we are moving at a snail's pace.  We tried introducing carrots and after four weeks, it was a fail.  We also thought corn was a safe food but apparently it is only safe in processed/broken down form.  He reacted to corn kernels last week.  So, I am again researching and reviewing Brendan's medical records for a clue.  Should we entertain the idea of a scope now?  I want to consider a scope because we have confirmed he has chronic inflammation even between reaction episodes.  Is this chronic inflammation preventing the absorption of iron?  Brendan is still nursed, which is one good form of "bioavailable" iron, even in small amounts.  He also eats two to three potatoes a day, which is another good source of "bioavailable" iron because of the combination of iron and vitamin C in the potato.  So, what gives?  I know he is on a limited diet but he should be absorbing what he is consuming.  Even with iv iron therapy, his hemoglobin and hematocrit levels went up but his ferritin levels (iron stores) never increased.  Brendan's ferritin ranges have been between 2 and 4...consistently low.  I think it is safe to say his body is not absorbing iron efficiently in order to replenish his iron stores.  What does that mean?  Reactions are never good but they are especially harmful with Brendan's persistent anemia.  It doesn't take much for a reaction to rob Brendan of available iron.  For now, we are proceeding cautiously with the monitoring of his anemia.

I have come to the realization that FPIES will be a big part of Brendan's life and in turn, our family life indefinitely.  I think I have come to a place where I don't ask why this is happening, or how am I supposed to make this okay for my son, my family, myself.  I have spoken of acceptance and faith before, but I feel it now more than ever.  No one can heal my child right now.  But, I can choose to enjoy my family and embrace the uniqueness of our situation.  I can find comfort in the support of those who have accepted or try to understand our situation for what it is.  It's not always pretty but it's who we are.  Most families have enough challenges in life.  Throw in a child with a chronic illness and see what you get.  Some days are good, some days are bad...it is the ebb and flow of FPIES after all. 

Saturday, June 25, 2011

Breastfeeding and FPIES

I know I have shared my experience about breastfeeding a child with FPIES in past posts but I wanted to take a moment to dedicate a full post on the subject.  I will preface this post with a few comments.  First of all, I believe it is every mom's personal decision whether or not to breastfeed.  There are also times when it is not a mom's decision at all.  Sometimes milk supply is an issue.  I firmly believe each mom should do what works best for the mommy and baby relationship.  As a mom of four, I tried to breastfeed each child.  I was never successful at breastfeeding the first two for any real length of time due to lack of breastfeeding support and excruciating pain even though the baby was latching on properly.  With my third child, I breastfed her until she was two.  Now, with my fourth child, who also happens to have FPIES, we are breastfeeding at almost two years of age out of necessity.  Yes, it is challenging, frustrating, and tiring at times but it is also the best choice I could have made for Brendan.

Breastfeeding is the reason Brendan stayed on the growth charts.  Breastfeeding is also the reason Brendan continues to thrive regardless of the number of food reactions and setbacks.  We tried to introduce solid food at six months of age and after some very scary food reactions, we ceased the introduction of solids and went right back to exclusive breastfeeding until twelve months of age.  It was a difficult decision and many people did not understand our reasoning.  At times, I doubted myself as well.  Looking back now, it was the best thing we could have done for Brendan.  It gave his body a chance to have gut rest and heal.  Oftentimes, it takes the first full year or two before a child's gut becomes fully mature.  We saw no point in trialing food when his body was telling us he could not handle it.  At twelve months, we started introducing food again with the same result...more reactions.  We proceeded with caution and only introduced one new food per month since Brendan was proving to be a very delayed reactor.  There were times when we were being questioned as to why we were holding back so much.  You will never know until you start trying.  It is trial and error after all right?  Well, no, not with my kid.  Yes, I was and still am very afraid of food trials.  But, that is not why I go so slowly with trials.  I have learned to let my gut instinct and Brendan's body/behavior signals be my guide.  Those are the only times we have been successful with a food trial.  So, we have been successful three times!  For us, that is huge.  We'll take what we can get.  I'll post more about our experience with behavioral signs and oral aversion later.

Back to the breastfeeding...I was told many times by doctors that I should stop breastfeeding and switch to elemental formula.  Why?  Well, Brendan had severe anemia and they thought he was not getting enough iron from my breast milk.  "You know, breast milk has very little iron for a baby", I was told.  Yes, but did you know that small amount of iron is more bioavailable than anything you can get from cow's milk or formula?  Pasteurization of cow's milk not only destroys the bad germs but it also destroys the good bacteria and affects the vitamin content of milk.  After a lot of research, I have learned that there are safe ways to drink raw milk from reputable sources.  That is another debate entirely...one I will steer clear of.  The story is the same with formula...it cannot match all the beneficial probiotics that are individually tailored to each baby's digestive system.  There are specific strains that are found in a baby's digestive tract but those strains vary depending on method of delivery at birth and several other factors.  I mention this because I believe this is a big reason why breastfeeding helps Brendan heal after a food reaction.  He is getting the natural medicine he needs to promote gut healing.  It is not our miracle cure but I have noticed it helps soothe him and his tummy.

I was also asked to stop nursing because Brendan was reacting to certain things in my breast milk.  An elimination diet of sorts came in handy during those times.  Once we were able to identify the culprit food, I could remove it from my diet.  Sounds easy enough, but it was not an easy process.  Ultimately, I am thankful my stubbornness and nonconformist nature finally worked in my favor.  If anyone tells me I can't do something, boy, will I try to prove them wrong...especially if it involves my children!  I suppose my message about breastfeeding and FPIES is simple.  If you have the support and the ability to continue breastfeeding during the FPIES journey, try to keep it up!  It has made a difference for us.  It is challenging as Brendan approaches 2 because not everyone agrees with breastfeeding a toddler.  I also struggle with milk supply and still feel like Brendan and I never got past the newborn stage as far as day and night feedings.  It is worth it though.   

Monday, June 20, 2011

We're Back!

We visited family in Texas and Oklahoma for a few weeks and flew back to Seattle late last week.  It was a whirlwind of a visit...wish we could have stayed longer.  I loved watching the kids soak up the sun and play with their cousins.  Brendan loved swimming and getting a natural dose of vitamin D.  Good thing because his levels got down to a 7 before we left Seattle!  I have to admit, Texas is a lot different than Seattle.  Each has it's own charm...but I'm a Southern girl at heart.  There is something to be said for drinking a glass of iced tea while sitting outside on a hot summer day.  I had some time to reflect during our visit and I definitely had an appreciation for the simple things.  Justin and I happened to be in his neck of the woods during his high school reunion.  It was a fun night spent with his brother and sister-in-law.  I just remember feeling care free (because Brendan was trialing and seemed to be doing well on almond milk) and I had a chance to dance in the evening rain on a hot summer night.  I haven't done that in years.  I also had a chance to see all of my nieces and nephews.  They have all grown so much and each have their own special talents!  My youngest (and newest nephew at four months of age) has his own special talent of just looking adorable.  Lastly, it was great to see my parents and my siblings.  I needed that!

Now that we are home, it's time to go back to the grind of FPIES.  As much as I'd like to sit around and romanticize the idea of being back home in the South, my focus needs to be on our life here in Seattle.  And, for my Seattle friends, don't take offense, we like it here too.  It is nice to come home to cool temperatures (although I still have issue with wearing long sleeves and pants in mid June)!  Thankfully, we are trialing almond milk with success!!!  I don't want to jinx Brendan, but he has been going strong with almond milk for almost two weeks now.  We have reached a huge milestone in getting Brendan to consume and tolerate a liquid other than breast milk!  I'll continue to breastfeed because we don't know what the future holds, but we are getting closer to some independence for Brendan.  It is hard to trust when all you have known is nursing, but we'll get there.  I'm laughing right now because I'm thinking of what our family doctor said today when I saw him.  He asked how Brendan was doing and I mentioned that he is still primarily nursing.  He said, "Well, that's okay.  It will only cause a problem when he starts dating!".  Most patients would be offended, but I love him!  It's those little things that get me through the day.

Speaking of doctors, while in Texas, we met with a wonderful food allergy doctor at Children's Medical Center in Dallas.  He and his staff have been nothing but supportive.  I would recommend Dr. Drew Bird to anyone living in the Dallas/Fort Worth area.  He was definitely worth the flight from Seattle to Dallas.  He doesn't promise to cure your child but he listened to me and I did not have to spend the majority of the visit convincing him that it is possible to react to Elecare etc.  He is the first doctor who had a genuine concern for Brendan and his quality of life.  He was very open minded and understood the importance of awareness and education in regards to FPIES.  He had some great ideas about baked foods for FPIES children...funny, because a fellow FPIES mom posted a link about baked milk for milk allergies right around the same time.  Dr. Bird's nutritionist is following us closely as we continue with Brendan's almond milk trial.  The next step is a trial of steamed carrots.  We hope to start the carrot trial in the next few days.  I have never had anyone stay in touch with us as much as Dr. Bird's office has.  I look forward to working with him more in the future. 

So, yes, we are back...back to FPIES, back to the uncertainty, back to reality.  I am torn at this point.  I have so many ideas of how to move forward for Brendan and my family but it all takes time.  FPIES and food trials are the most painstaking process I have encountered thus far in my parenting career.  I can't say it enough...I appreciate everyone who follows my blog and our journey with FPIES.  I realize it is a difficult illness to understand.  Some days I don't understand why Brendan has to go through what he does.  What I do know is that I will make it okay for him and my family in whatever way necessary.  I can't say it enough.  God chooses to bless us with trials and tribulations in life and it is up to us to show up in the best way possible.  At the end of the day, I hope this blog helps other families dealing with FPIES and also helps friends and family of those dealing with FPIES.  The most important thing for an FPIES family is acceptance, unconditional love, and support during a very difficult and isolating time. 

Sunday, May 22, 2011

I'm coming home...

I'm coming home...tell the world that I'm coming home.  Let the rain wash away all the pain of yesterday...

Okay, so I'm not a fan of P Diddy, Dirty Money, Puff Daddy...whatever he calls himself these days.

BUT, I am going home to Texas!  Justin and I have decided that it is time.  It is time for our family to take a break, regroup, gear up for the continued challenges of our FPIES journey.  The kids and I will fly home in a week and a half to take a much needed break from, well, everything.  We can't take a vacation from FPIES, but we will seek the support of our family back home while we trial another food and visit the Children's Medical Center in Dallas.  Our goal is to also help Brendan get a hefty dose of vitamin D in the form of the bright Texas sun.  When we visited in December, Brendan seemed to perk up with the sun exposure. 

I have been waiting and waiting...keeping things together as long as I could.  But, the school year is almost at a close, and I am tapped out of energy.  As a family, we have decided that the kids will take a temporary leave of absence from school.  Justin will stay in Seattle to work and then work again in the evenings on the house remodel.  Our hope is that he will be able to eventually join us to catch his breath.  We understand that our Texas trip will not be an answer to our problems but it will bring a little relief. 

Today, Justin and I celebrated our 11th wedding anniversary.  The last year has been such a blur...but, our love and devotion for each other and the kids gets us through.  I would never trade our life for anything in the world, but I have to admit, some days are good and some days not so much. :)  Regardless, if I had to do it over again, I would do it exactly the same.  My niece gave us the best anniversary present.  She sang "Cowboy Take Me Away" by the Dixie Chicks...which happens to be our "song".  Happy Anniversary Justin!

Thursday, May 19, 2011

The theme for today is...

Today, we met with the Biochemical Genetics department at our local Children's hospital.  I should set up camp there.  I wonder if they have a frequent patient reward program?  Can we at least get a t-shirt out of this?  Ah, better yet, what about an all expense paid vacation from doctors and FPIES?  In case you haven't noticed, the theme for today is sarcasm. 
Back to our "story".  The Genetics department was wonderful.  We met with a nurse practitioner, RN, and metabolic nutritionist all at the same time!  We were all in agreement that Brendan's source of nutrition is the number one priority at the moment.  He has already failed the Elecare trial so we are trialing Neocate, which is another amino acid based formula.  We are off to a slow start since the formula tastes horrible (yes I tried it) and Brendan is refusing to drink it.  His oral aversion is not doing us any favors either.  That said, our options are as follows.  1)  He tolerates the Neocate (which is unlikely since it contains almost the same ingredients as the other formula he could not tolerate) and we go on from there.  2)  He continues to refuse the Neocate and we again entertain the idea of a feeding tube.  Our concern with this option is that he will most likely fail the Neocate trial and then we will have opted for something invasive with no positive outcome.  3)  If he fails the Neocate trial, then we will revert back to breastfeeding only.  I have racked my brain for another solution but even a milk bank is not an option.  Because of the severity of Brendan's FPIES and his tendency to react to trace amounts of foods, we could not realistically monitor the intake of a donor nor would we be able to back track as we do now to determine what causal protein was passed through the breast milk. 

As far as the genetic/metabolic test results, everything came back normal...even the thyroid study.  The initial thyroid study must have been a fluke since the most recent study reflects normal TSH and hormone levels.  Please don't misunderstand, I am thankful for the test results.  However, I must admit it was bittersweet.  We have ruled out any metabolic and/or genetic issues which tells us this is strickly FPIES we are dealing with.  For those doctors who did not believe Brendan had FPIES because he did not present with classic FPIES symptoms, they now have their proof.  Does this proof help Brendan?  No, we still have no answers, no treatment protocol, and there is no end in sight.  Brendan is a child with severe FPIES and a very delayed reactor which makes this painstaking process all the more tedious. 

Where does this leave us?  I am usually one step ahead with another doctor appointment or consultation in the works.  Now, I have nothing.  We will meet with Immunology next week but we already know the outcome.  This is outside of their scope.  We are also waiting to hear what a doctor at the Children's Medical Center in Dallas has to say about Brendan's case.  I refuse to get my hopes up yet again.  I am not being negative, I am simply being realistic.  After every appointment, it takes everything I have to get back up and try again.  After today's appointment, I called my sister and cried hysterically all the way home from the hospital.  "I can't do this anymore" I tell her.  "I'm so tired".  What does she say?  "You can do this, you have a lot of fight left in you."  "You have to keep fighting for Brendan".  After hearing her words, I stop crying and compose myself.  Why?  Because, I know she is right.

As a parent, there is nothing worse than trying to keep your child alive.  Our family is devastated.  There is nothing normal about the way we live.  We are no longer living, we are just surviving. 

Wednesday, May 11, 2011

Searching for the light at the end of the tunnel

It has been busy this month already.  So far, we have a wonderful naturopath on our side who has ordered lots of blood and stool tests.  We are waiting for the results but we did hear back about one thing.  Brendan's TSH level is high which may suggest an inactive thyroid.  We won't know for sure until we get the results of more in depth thyroid tests but what I have learned is this.  The thyroid can be responsible for poor growth, development, low muscle tone etc.  It can sometimes stem from food allergies, lack of digestive enzymes, anemia to name a few.  In our case, there is a family history of thyroid disease and of course Brendan has food allergies and anemia.  I wanted to touch base on this because I wonder if other FPIES children have had their thyroid checked and how many have a thyroid problem.  Another cause is Hashimoto's disease...an autoimmune disorder which attacks the thyroid.  There is that word again, autoimmune.  Brendan also has had two swollen lymph nodes on the back of his neck for months now.  No one has been concerned about them but now I am starting to wonder.

We have also struggled with Seattle Children's since their immunology department denied a referral from Brendan's GI doctor at the same hospital.  I am still not clear on the specifics except that they feel it is outside their scope of expertise.  Well, I called them back and insisted on an appointment because clearly Brendan is outside of everyone's scope.  I am not expecting great feedback but I have to at least try.  Meanwhile, we revisited with another GI at Swedish hospital and she is referring us to a Biogenetical chemist at Children's for metabolic testing.  We will just have to wait and see how it all works out.

So much has happened over the last several weeks so I am just trying to glaze over the most important points.  We have also started the probiotics Therbiotic Complete by Klaire Labs.  Brendan is doing well with them so far even though it is a multi strain probiotic.  The probiotics will not cure his FPIES but it will encourage gut homeostatis in between reactions.  After the probiotic trial, we will then introduce a vitamin D supplement as Brendan's last level was at a 7.  I think we will be able to introduce another formula, Neocate, soon after.  I pray he tolerates the Neocate because if not, I will have to continue breastfeeding while trialing a homemade hemp milk formula. 

I have to say I am really disappointed with the medical care Brendan has received thus far.  With the exception of one doctor, no one else has acted as an advocate for my son.  It makes me sad because I know other families struggle with the same problem.  It mostly makes me sad for my little boy. 

Finally, through all of this, there is one person I have not given credit where credit is due.  It is my husband Justin.  I don't know what I would do without him.  It has been a long and difficult road for us and I am so thankful for the man who makes me laugh with his humor and wit.  I don't know how Justin handles the demands at work and then races home to help me.  Most would cave after walking a day in his shoes.  I have been blessed with an amazing husband who stops at nothing to fulfill every obligation.  Justin, you are my best friend and I could not do this without you. 

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. 

Wednesday, March 16, 2011

New Jersey Results

We received some of Brendan's lab results in the mail from New Jersey yesterday.  Several questions were answered, which is great.  The lab results also brought up other health issues I was not even aware of.  Brendan's glucose level is very low so we will be following up on that.  I am still trying to process everything else.  Sorry if I am being vague but I am waiting for some guidance from various doctors.

Brendan also had another visit yesterday with his hematologist.  His iron levels are up but the iron stores and saturation percentage are still down.  Once again, he was a trooper while he received another iron infusion.  We decided to wait six weeks before the next infusion because we are hopeful for a positive Elecare trial.  It has taken quite some time and effort to locate the elemental formula but it should arrive this week.  If Brendan can take in a large amount of Elecare daily, it may boost his iron levels enough to avoid further infusions.  We'll have to wait and see.

Wait and see.  Wait and see.  Anyone who knows me well understands that I am not a wait and see kind of gal.  If I see a problem, I try to fix it immediately.  Sometimes, life doesn't work that way though.  FPIES is definitely teaching me patience.  The last 24 hours have been a little rough and my mind is all over the place.  I try to keep things positive so on that note, I'll end my blog post for now and count my blessings.  With everything going on in the world right now, I am thankful for the gift of life and even appreciative of the trials that go along with it.

Tuesday, March 1, 2011

Our New Jersey Experience

Whew!  We survived our whirlwind of a trip to New Jersey.  Although I am operating on five hours of sleep since Sunday, I have to say it was definitely worth it.  Dr. J was a very kind and compassionate doctor.  She ordered several blood tests for Brendan and we will anxiously await the results.  Dr. J also mentioned her concern over the fact that Brendan is still breastfed.  From a nutrition standpoint, he is not getting enough protein and vitamins from breast milk alone so it is time to reintroduce the Elecare.  We are keeping our fingers crossed that Brendan will tolerate the elemental formula and drink it from a cup.  If we are not successful with the cup, we will need to revisit the idea of a feeding tube.  I have to admit her recommendation was very hard to hear but I know it is time.  This has been an emotional rollercoaster to say the least but now we are taking that leap of faith.  I don't quite know how to express the fear and mourning I will go through during the weaning process.  Brendan and I will be saying goodbye to a very unique breastfeeding bond.  Our ties run deeper than just breastfeeding mother and child.  I have sustained him thus far and it is difficult to let go.  Breastfeeding has been the only source of comfort for the both of us during those late night food reactions, iv infusions, and countless other medical procedures.  My mind tells me this is the best thing but my heart feels otherwise.  So, now I have put my feelings and fears out there and it's time to have faith and let go. 

Lastly, a heartfelt thanks to my family and friends for all the support and encouragement during the last few days.  Uncle Mitch, thank you for caring for my family in my absence.  A special thanks to my traveling companion...we couldn't have done it without you.

Wednesday, February 23, 2011

A Sincere Thank You

Normally, I know exactly how to begin a blog post.  At this very moment, I am at a loss for words...but in a good way.  A very special person along with his family and company, made a generous donation on Brendan's behalf to the FPIES United Family Fund of the Children's Hospital of Philadelphia.  Words cannot express how thankful I am.  It is the kindest of gestures and one our family will never forget. 

Maarten and his wife Ilse follow my blog and I am forever grateful.  I am also grateful to everyone else who reads my blog posts and supports my family through Brendan's FPIES journey.  Although the blog is my outlet, I often times wonder if I am sharing too much.  However, those who know me, understand that I wear my heart on my sleeve.  So, thank you everyone for continuing to support Brendan's cause and entertaining my blogging attempts!

Many thanks to you Maarten, your wife Ilse, and (ops) logix.  I wish I could shout from the rooftops how eternally grateful I am, but hopefully this blog post will reach more rooftops.  Thank you from the Incarnato Family!

Thursday, February 17, 2011

Our Song

Brendan had another appointment yesterday with his hematologist and it was a positive one!! Although his hemoglobin is still low, his hematocrit and iron levels are rising. What does this mean? Well, we can finally take a break from the iron infusions! Brendan is not scheduled for another one for four weeks!! We are testing the waters and seeing how his body does on it's own without the infusions. Fingers crossed he will maintain his levels and continue to improve.


As we checked in for the appointment, I realized something that made me both proud and sad at the same time. The receptionist handed me Brendan's hospital id bracelet and Brendan lifted his leg so I could place it on his ankle. When we headed back to the infusion room, Brendan willingly placed his hand in the nurse's so she could tape the warmers to his hands.  Once it was time to administer the iv, I nursed Brendan and watched him brace himself with his little legs against the arm of the infusion chair.  He never cries when the iv is placed.  This child is so resilient!

I realized what a special boy he is.  I hate FPIES for what it has cost my son and our family but I love the bond it has created.  It is both encouraging and scary to know that a tiny person keeps me going daily.  To know that his courage and bravery guides me through the toughest times.  If he can do it, so can I.  I have had such a tough time dealing with things lately.  It is difficult to express just what our family deals with.  But, seeing Brendan in that moment at the hospital, made me wake up.  I am hanging on, hoping for a miracle...looking forward to our New Jersey trip.  It seems that we FPIES moms have been sharing particular songs in which we relate our current experience or situation.  Here is mine.  You've Got the Love by Florence and the Machine.  The words depict the raw emotion and bond Brendan and I share. 

Sometimes I feel like throwing my hands up in the air

I know I can count on you
Sometimes I feel like saying "Lord I just don't care"
But you've got the love I need To see me through
Sometimes it seems that the going is just too rough
And things go wrong no matter what I do
Now and then it seems that life is just too much
But you've got the love I need to see me through
When food is gone you are my daily meal
When friends are gone I know my savior's love is real
Your love is real
You got the love, You got the love, oh you got the love...
Time after time I think "Oh Lord what's the use?"

Time after time I think it's just no good
Sooner or later in life, the things you love you lose
But you got the love I need to see me through.

Tuesday, February 1, 2011

Testing, Testing...Is This Thing On???

Brendan had another appointment today with the hematologist and during our conversation, the phrase "testing, testing...tap tap...is this thing on?" kept running through my mind.  It almost made me laugh.  I say almost because I cried instead, out of frustration.  Each and every doctor appointment feels like a performance but instead of applause, I wait for an answer....or heaven forbid, some validation.  Before every appointment, I research the latest medical obstacle that has been placed before us.  I learn the medical terminology and run to the appointment with all my findings in tow only to be disappointed. 

I sigh and begin my lengthy explanation.  Well, we stopped seeing the gastroenterologist because it was apparent we were getting nowhere.  They don't want to scope Brendan to establish a baseline because it is too invasive and comes with risks.  However, they recommended an inpatient three day food trial of an elemental formula via an NG feeding tube.  As an added bonus, they thought the trial would work best if I also stopped breastfeeding Brendan.  It sounds ridiculous when I say it out loud.  Obviously, a hospital stay and all the procedures that go along with it would be more invasive...not to mention traumatic.

During today's appointment, the doctor asked why certain blood tests had not been performed yet.  She then determined it was probably a result of Brendan's growth chart.  Once again, I explained, yes he is growing but only because I am nursing him 24/7.  I finally told the doctor that I would have to essentially wean him so he could fall into the failure to thrive category before anyone will take us seriously.  Otherwise, no one has been able to treat Brendan's FPIES but rather the secondary conditions that come about.  It is also apparent that even if the doctors understand the dangers of a toddler relying on a breast milk diet, no one is knocking on our door to help us.  By the way, I would not really stop nursing Brendan just to prove a point, but good grief, what is is going to take?

We are ever hopeful for some direction and measurable results from our NJ trip.  From what I understand, it will be informative but a battle to facilitate the collaborative efforts necessary to move beyond the test result phase...for various reasons.  Justin and I keep asking ourselves the question, is it worthwhile to take Brendan across the country to see a new doctor?  I can answer that question with a simple yes.  I would travel the ends of the earth even if I only learned one new piece of information that can potentially help my son.  Mental note...I should perform a sound check before the next performance.

Friday, January 21, 2011

You Win Some...You Lose Some...

We found out yesterday that Brendan has been accepted as a private patient @ the Pediatric Center of Rare and Complex Disease in New Jersey.  What does this mean?  There is a doctor in New Jersey who is conducting research studies on FPIES.  Not only that, but she can also offer treatment to patients.  No, there is still no cure for FPIES but we are hopeful that this new doctor may be able to shed some light on Brendan's medical needs and offer support.  We have met with such resistance from local doctors regarding Brendan's current medical state.  Everyone recognizes the secondary medical conditions as a result of FPIES but no one has been willing to step up and deal with it head on.  I can't even get a gastroenterologist to scope Brendan.  No one seems to understand that we need to establish a baseline.  I suppose I am giving up on our local team of doctors for now and praying for a miracle in Dr. J and her team.  It sounds like Dr. J will also help me to navigate through my breastfeeding journey. 

We have also been blessed with an amazing developmental center who will assist us with therapies for Brendan's gross motor, adaptive, and speech delays on a weekly basis.  Woo hoo...finally someone understands that we do not operate as a typical family.  I am so thankful the developmental center is interested in not only seeing Brendan through this difficult time but his family as well.  We have set some goals for Brendan and the rest of the family over the next six months and we are eager to see them come to fruition.

Next comes the latest and greatest in Brendan's ongoing food trials...and the reason for my blog title of "You win some and lose some".  So far, Brendan's safe foods are banana and potato.  We trialed coconut milk this week and it was a fail.  Two days ago, Brendan started with hiccups, lack of appetite, fussiness, and holding his tummy.  Last night, the frequent bowel movements with blood and mucous confirmed the failed trial.  If we did not have the upcoming doctor appointment in NJ, maybe my feelings would not be as positive as they are in spite of yet another failed trial.  I do try to take the positives as they come.  After all, Brendan took a two hour nap today for the first time in weeks and I was able to tend to the housework!  As I buzzed around the house folding laundry and vacuuming I thought, wow, at what point did I become so thankful for the opportunity to do housework?!  I must be out of my mind.  But no, I am just a mom who wants nothing more than to feel the gratification of taking care of her family.  Before FPIES, I used to wish for the acknowledgement and occasional pat on the back for staying at home and caring for the family and household.  Now?  I long for those more simple times.  I must say though, I feel like the luckiest woman on the face of the earth.  No need to feel sorry for myself...I have an amazing husband and four awesome kids who know how to show up when and where it counts!  Isn't that half the battle right there?  I am also learning how to be more supportive, accepting, and non-judgemental of those around me.  Things are so much better when we try to understand and appreciate each other.  I firmly believe those are some of the lessons I am supposed to learn with this experience.