Sunday, December 19, 2010

The Elephant In The Room

I am supposed to be doing some online Christmas shopping but honestly, I'm not really feeling the spirit of Christmas at the moment.  It has been a while since I've blogged.  I wish I could say it is because our lives have been pretty uneventful but not so much.  I am in Texas right now with the kids while Justin is still in Seattle.  Our house flooded recently and caused some damage to say the least.  I think at this point Justin and I have agreed we would like to find a place where we can sleep off the rest of December.  Can we end this year already?  We're sort of running low on positive thoughts as we are feeling pretty defeated these days.  Did I mention I am so done with this year?  Justin has been working like mad to do damage control and get the house to a point where he can leave.  It looks like he won't be meeting us in Texas until late Christmas Eve.  Sorry if I sound a little bitter but this was supposed to be our time to get away from the craziness of our everyday lives and heed refuge with my family in Texas.  The kids and I are definitely glad to be here visiting with my mom, dad, sister and her family.  They have been really great and a wonderful distraction for us.  But, of course, there is still that elephant in the room...F-P-I-E-S.

Brendan has been pretty cranky and not looking so good.  His last iron infusion did not go so well.  It was pretty brutal.  The nurses had such a hard time finding a good vein for the iv that Brendan was poked all over his little body.  Since he has not been drinking enough water (due to the oral aversion) I believe he has been dehydrated.  Thankfully, my mom found a cup that peaked Brendan's interest long enough today and we were able to get several ounces of water in him over the course of the day!!!  My mother has always had such a gift for making things better in her own special way.  I wonder if she realizes just what she has done for her grandson?  I have been so worried about my baby.  His color has been off, eyes sunken, and sooo unhappy.  Before he went to bed tonight, he was happy again and babbling.  He even ate several bits of potato!  I can tell my mom, dad, and sister are worried about Brendan.  Everyone wants our visit to be a good one but no one knows quite what to say...including me.  I am scared to actually admit how panicked I am about Brendan right now.  If my family and I talk about it, the flood gates might open.  Between Brendan's current condition, not having Justin here with us, and being displaced as a result of the flooding, I could blow at any time.  I am just thankful I have the support of my family...no correction, I am thankful I can SEE my family and just know they are here for me. 

So, for now, we are making the best of our situation and trying our hardest to see the positives.  We are thankful for our family.  I am also very grateful for our friends in Seattle who have each helped us in different ways with the house.  Did I mention Justin has a wonderful uncle named Mitch who has helped him immensely over the last few days?  Thanks Uncle Mitch!!!  We love you!

Lastly, for those of you reading this, thanks again for your continued support of our family.  There are several other FPIES families I know right now who are really struggling as well.  Will you please say a little prayer for those families and their precious babies too?  By the way, I imagine I probably won't have an opportunity to send out Christmas cards again this year but just envision our family sitting together in our holiday attire, smiling, and wishing you all a very Merry Christmas! 

Friday, December 3, 2010

Back to Basics

The evening started out nicely.  We attended Cameron's choir program and went to dinner with friends afterwards.  We were all amazed to watch Brendan feed himself.  Ah...we finally felt like a normal family for once.  Against my better judgement, we have been feeding Brendan pinto beans, french fries and table water crackers.  For the first time, he was showing such an interest in food that we did not want to deny him.  It had been over a week since we introduced those foods and he seemed to be doing just fine.  Within two hours of eating beans and fries, he began the projectile vomiting.  He was vomiting so frequently and forcefully that he began choking on it.  I was crying and telling him how sorry I was.  We arrived at the ER and an IV of fluids and Zofran was started.  It did not take long for his electrolytes to be affected and for dehydration to set in.  The vomiting stopped and the ER doctor observed him for several hours.  We are now back at home and feeling pretty defeated.  Brendan is continuing to react but at least the vomiting has stopped.  The irritability, lethargy, and diarrhea with/without mucous and blood will soon rear it's ugly head. 

The doctors want to scope Brendan but Justin and I don't see a point in it at this time.  Between Brendan's recent surgery, iv iron infusions, and last night's episode, we are only concerned with seeing him through this latest reaction.  It will take his system a few weeks to heal and then we will start all over again.  So, for now, it's back to breast milk only. 

Monday, November 29, 2010

Brendan's Recovery

Just a quick post...a sincere thank you for all the well wishes and prayers.  Brendan sailed through his surgery and is doing well at home.  He was quite the ladie's man at the hospital!  It is amazing to watch him as he rediscovers his surroundings with his improved vision.  Fingers crossed he will start walking soon!  We are all pretty exhausted so that's all I have for now.  Thanks again everyone!

So, this is what quiet is like...

It's the night before Brendan's surgery and all is quiet in the Incarnato house.  For those of you who know us well, you can imagine how strange it is to have complete silence in our home.  Brendan just fell asleep until his next nursing session with mama and Cameron, Loren, and Gabby are staying the night with family friends.  By the way, Andrea and Holly, I can't thank you enough for keeping my babies for me tonight.  Gabby was so excited to have her first ever sleepover with her bff.  I'm a little nervous because this is the first time my little Gabby is spending the night away from her mom.  So far so good I think. 

Justin and I realized this is the first time in four years we are almost kid free.  Brendan is still with us but three out of four is a huge deal in our world. :)  In all seriousness, the stress of Brendan's surgery has been so thick, I'm sure the kids have felt it.  I am so thankful the older three kiddos were able to get a break from things at home.  Sooo...tomorrow's the big day.  Brendan will have his eye surgery and boy are we N-E-R-V-O-U-S!  His eye surgery should go pretty smoothly since it is a common procedure.  However, there is nothing "common" or "normal" about Brendan's FPIES.  It sure does throw a wrench in pretty much everything where Brendan is concerned.  I received the list of possible medications/anesthesia that will be used during the surgery so I am hopeful he won't react to any of the ingredients.  Ultimately, I won't be okay with all this until it is over.  It will be a long week for little man. 

I'm missing my other little monkeys already.  I am such a control freak that I have had a hard time letting go of Cam, Loren, and Gabby for the evening.  I know they are fine and with family friends who love them dearly.  Would someone please tell my mind and heart to get on board though?  Although Brendan's first FPIES reaction was almost a year ago, I still feel such guilt over the things I cannot control or do for my other children.  I know there is a light at the end of the tunnel...there has to be.  Can we just get there already?  On a more positive note, Brendan has been tolerating mashed potatoes since Thanksgiving and has had a handful of french fries.  No, french fries has never been my idea of a great "first" solid food for my baby but, hey, we will take any small victory even if it is in french fry form.  I'll just call Brendan my "Fry Guy".  Justin and I will throw a HUGE party the day we can call him the "Hamburglar"!

Saturday, November 27, 2010

Hematologist Appointment at Children's

Justin and I took Brendan to his hematologist appointment last Tuesday.  The hematologist was very helpful and after reviewing Brendan's latest bloodwork, decided iv iron was the way to go.  It was so refreshing to have a medical professional listen to our concerns and actually agree!  Although, it did not feel like a win since it involved iron infusion through an iv.  Brendan will begin receiving iv iron weekly for the next month in hopes of getting his iron levels back up. 

Needless to say, Tuesday was a long and stressful day for all three of us.  The poor baby has to have another round of iron the day after his surgery.  And, speaking of surgery, Brendan's eye procedure is on Monday morning.  I am only allowed to nurse him until 3 am the night before his surgery.  I'm sure Brendan will not be thrilled about that.  We are so nervous about it and praying everything goes smoothly.  We are trying to stay positive but it has been pretty difficult lately to watch him go through so much.  Not sure if I will blog again before his surgery but will definitely post once he is feeling better.

Tuesday, November 9, 2010

Gastroenterologist #2 and counting...

Today I took Brendan to Swedish Medical to see a gastroenterologist.  We had no luck with the GI doctor at Children's so I thought I would try a different doctor and hospital.  Well, this doctor knew about FPIES but I was less than impressed.  She told me it was pretty much impossible for Brendan to react to Elecare (a prescription amino acid based formula designed for children with food allergies) but he either reacted to the Elecare or my breast milk.  So, which is it because he didn't have anything else during that time.  Technically, according to medical articles and limited research, FPIES children should not react to proteins through breastmilk.  The GI doctor then proceeded to tell me she thought it was strange that Brendan does not react when I eat chicken and then nurse him but he does react to it when he ingests it directly.  Well, I hate to tell her, but that is one of the first things you read when you look up FPIES.  And, for those of us dealing with this syndrome, WE know there is no rhyme or reason to what our kids react to.  The GI doctor wants Brendan to do a 48 hour food trial in the hospital with Elecare and a feeding tube.  Yes, I said feeding tube.  This is the VERY thing I warned the doctors about in the beginning. 

Okay, okay...we know Brendan is a very delayed FPIES reactor.  It can take him two weeks before he reacts to a new food.  With that in mind, a 48 hour food trial might seem like a passing food challenge, but what happens when we take him home?  I alone will wait with bated breath for days after before I will call the food challenge a pass.  I have also been told that I should not nurse Brendan at all during that 48 hour period.  So, basically, I am expected to wean him while he is in a hospital with a feeding tube?!  And, during the food challenge, I have to pump so I can maintain the milk supply I have worked so hard to protect?  I can't wrap my head around this right now.  I don't know how I feel about it.  I understand Brendan needs more than breast milk.  But, I have a hard time trusting a process that is not a guarantee.  I have been Brendan's lifeline thus far and it scares me to death to think of how many different ways this can go wrong.  And, why do I feel like the doctor wants to "prove" or "disprove" the things I have described?  She mentioned conducting a double blind food challenge and I started feeling like her intentions might have been good but they were not primarily about helping Brendan.  I have always wished for a doctor who would take an interest in Brendan's syndrome, so I don't want to sound negative, but this is too much.  I just did not have a good feeling about it.  I am tired of being told what is possible/impossible for Brendan to react to.  I was also told irritability is not a sign of a reaction.  That's funny because irritability is one of the first indicators of a reaction to come.  Just ask any FPIES parent. 

Where oh where is that perfect blend of doctor and concerned parent?  Better yet, is it possible to find a doctor who also has an FPIES child themselves?  I guarantee you their response to my child would be much different if they walked a day in my shoes.  My husband will be home after eight days in Berlin and we will start making some decisions.  Meanwhile, I will continue on with my own research and also begin preparations for Brendan's eye surgery in two weeks.  One thing at a time...my next battle is getting the ingredient lists for the anesthesia and medications that will be administered during Brendan's procedure.  Wish us luck!

Saturday, November 6, 2010

Dust yourself off and try again...

So, we saw a feeding therapist on Thursday for Brendan's oral food aversion.  The occupational therapist at Children's had a few suggestions but no real solution for Brendan's unique situation.  She was so sweet and empathetic.  It pained her to hear our story.  Although little man obviously has an aversion to food, it is not the usual scenario.  We cannot set several foods in front of Brendan in order to introduce different tastes, textures etc.  We would have to perform a trial for each food before letting him "dig in".  What does this mean?  Well, occupational therapy will be a VERY long process.  Both Brendan's pediatrician and the occupational therapist feel it will take a long time to "undo" all the damage that has been done over the last year.  What I wouldn't give to just throw a slice of pizza Brendan's way.  But, I can't.  If I did, it could cause a reaction with no real measurable result.  There are so many different ingredients in foods that we would not know what he is reacting to.  We have to keep it simple.  Our gastroenterologist was less than helpful so now we are back to the drawing board.  We will try to get in with a new GI doctor at Swedish hospital instead of Children's.  Our pediatrician, bless her, is trying her best to help us.  She is referring us to a hematologist at Children's in hopes of determining how much "wiggle room" we have in regards to Brendan's anemia.  His iron stores are so low that if he has another reaction, (mucous and blood in the stool), it could lower his iron levels even more.  Every time we go to these specialist appointments and get nowhere, well, it takes that much longer to process it, dust yourself off, and try again.  I just want to scream!  How is it possible that FPIES children can suffer so much and get so little help??  What is it going to take to make a difference?  Meanwhile, I am looking at my precious Brendan, down for the night, and so angelic...if only he knew what is in store for him.  I am so mad I can't see straight.  I will do whatever it takes to get someone's attention.  We need more advocates, more research and a more united front.  Brendan, I am doing all of this for you my little man.  I won't stop until FPIES is a well known medical condition.

Thursday, November 4, 2010

A Desperate Plea!

I am trying to breathe. I am trying to stay positive, focus on the immediate needs of my family, and yes I AM trying to feed my child. I am also trying to type through my tears, scared as hell and TIRED. I don’t know where FPIES ends and I begin anymore. How do I explain the life my family lives? How do I get my message across? How can I shake the tree? Who will listen?


Will you listen? Will you help me help my sweet little fifteen month old boy? Would you like to know if our pediatrician can help? No, she can’t…neither can the allergist/immunologist, gastroenterologist, family physician, naturopath, nutritionist, feeding therapist, lactation consultant…I’m sure I am forgetting others we have tried to seek out. No, none of these specialists have been able to help. Why? Well, unfortunately my son has Food Protein Induced Enterocolitis Syndrome. What is that? It is basically a “food allergy” but not the typical one. It is not an IgE mediated reaction so, no, we can’t just avoid that food. It is more specifically food protein that my son reacts to. He reacts to foods such as apple and pear which has very little, if any, protein content. Did you know there are ingredients in medications, supplements, cooking oil, and even anesthesia that FPIES children react to? If you talk to an FPIES parent, they will tell you food is the enemy.

FPIES is thought to be a T cell mediated response with no test to diagnosis it. There is no known cause or cure for it. After three severe reactions and three doctors, Brendan finally received the FPIES diagnosis. I thought our problems were solved…a doctor who actually knew what FPIES was and a diagnosis. Boy, was I wrong. This was just the beginning of many reactions and specialists to come. Next month will be exactly one year since Brendan’s first reaction and still no answers. We have been to our local Children’s hospital, various specialist appointments, and still no real improvement. At fifteen months, Brendan is still exclusively breastfed and now suffers from anemia and vitamin deficiencies. He has developed oral food aversions and we suspect the beginnings of developmental delays.

Brendan is our fourth child. My husband and I thought we had this one down pat. Once again, we were wrong. We have been robbed of the simple joys in Brendan’s life. Parents and children are supposed to triumph over the introduction of solid foods and all those other food-related “firsts”. Instead, my husband and I take turns eating our meals because we feel so guilty eating in front of Brendan. Everyone in our household understands the dangers of crumbs left on the floor and drinks left within Brendan’s reach. No one ever really relaxes in the presence of Brendan.

I have only touched on a few of the things that impact our family on a daily basis. I have yet to give credit to the real trooper in our family…my little man Brendan. He is such a happy child. On the outside he looks healthy but that is only possible with mommy’s milk. If we did not have that, Brendan would probably fail to thrive. Breast milk is not enough anymore. He needs more protein, fat, iron, vitamins and other minerals. He is also hungry and tired! I try to keep up with the demands of a toddler’s nutritional needs but that means sleepless nights and low energy for Brendan and mommy! He nurses constantly through the day and wakes frequently at night to nurse. I could tell you more about our family’s trials and tribulations but I will spare you the unpleasant details. This may make me sound negative, ungrateful, depressed, and anything else I have been called in the past. But, really I’m not. I love my family and thank God every day for the little blessing that is Brendan. I am thankful I have family and friends who care. Our family is tired though. We need others to help us. What can you do? Please help us raise awareness and funds in order to find the cause and cure for FPIES. If you or anyone you know can help spread the word or help me in my fundraising efforts, please let me know. Brendan thanks you and so do I!

Thursday, May 13, 2010

Getting a Diagnosis

In March, my husband and I took Brendan to see a pediatric allergist who gave him the FPIES diagnosis. Unfortunately, she was unable to offer more than the diagnosis. After several phone calls to the allergist's office, I was desperate for some answers. I read up on the limited FPIES information on the internet...and thought there had to be a better way. FPIES is described as a rare disorder...although there are so many affected children. FPIES is being misdiagnosed. Thankfully, we found a local allergist who is familiar with FPIES. My son will undergo atopy patch testing and we will use rice cereal and apples as a control (since we know he reacts to both). I am hopeful that we will be able to find something Brendan can consume and challenge orally as a result. In the meantime, I will document our experience so that we can a) help other parents and children and b) find a way to educate the medical community. If anyone would like to share their experience or know of an FPIES doctor, please let me know. My goal is not only to help my son but to also help other children and parents afflicted by this syndrome.

FPIES episode #2 and #3

Upon our return from Texas, I primarily nursed Brendan. He had two more episodes in February. I fed him apples the second time and rice cereal with pears the third time. Each subsequent episode was worse than the first. It was the typical time frame of four hours, followed by projectile vomiting until there was nothing left in Brendan's little body. I would lay him on my chest (for fear of him choking on his vomit) and he would dry heave for several hours after.

During the third episode, Brendan seemed lethargic and confused before the vomiting even started. In the days following, I searched the internet for anything related to "vomiting after consuming rice cereal". This is when I came across the FPIES articles. After reading several articles, I was convinced this is what my baby had.

Wednesday, May 12, 2010

FPIES episode #1

We flew down to Texas to visit with family over the holidays. Brendan was five months old at the time and had consumed rice cereal at least six times successfully. On January 2, 2010, Brendan had his first FPIES reaction. Four hours after eating rice cereal, Brendan had projectile vomiting and diarrhea for two hours. I like to think of myself as a "seasoned" mom of four children but my mommy instinct told me something was not right. My husband thought it was a stomach virus and my mom thought it was due to teething. I knew something was wrong and wanted to go to the ER. Ultimately, we waited and when the vomiting ceased, I nursed my son. He seemed lethargic and out of sorts but still flashed his little gummy smile. The vomiting stopped but the diarrhea lasted several days. It was slimy and mucousy. We thought that was the end of it.