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 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.