Monday, May 16, 2011

How Far We Have Come!

I have been horrible about blogging lately!  Between living life and adjusting to the new schedule dictated by my husband's new job (he works 7 pm to 5 am - not fun when you have an infant who doesn't sleep well at night) I have simply been a little nuts trying to keep up with everything that has been going on.  Things have DRASTICALLY improved for us.  While we are still trying to get our new insurance company (who has to cover B's formula by law) to help us with the tremendous cost of Nutramigen AA, there is hope in site that we will receive some relief in this area soon (it looks like it will take around another month before we finally get the approval we need).  Most importantly, Braxton has moved from simply surviving to "thriving."  When reviewing his growth charts, it becomes clear.  At one point, he had fallen off the chart and was in only the 1.02% (the chart showed that his growth actually stopped being linear and a break occurred with a brand new line starting below the prior one).  Today, I am pleased to share that he is in over the 20th percentile.  He now has a food that he can eat (other than his Nutramigen AA) - Peaches!  He loves his peaches.  He eats two jars a day and cries for more!  We are planning to begin a trial with carrots on Friday.  He is doing great in his new school and he LOVES it there!  The transition to a new caregiver provided a lot of freedom for my family and has had a tremendously positive impact on B! He has started crawling and has said his first word, "Dada."  It is hard to believe that not that long ago he was battling for medical stability and we were battling for medical care...  It is hard to believe that not that long ago he couldn't even tolerate elemental formula.  I am so, so, so, soooo grateful that we are not there anymore.  I am so glad that our families struggles have changed to more trivial worries like how to establish a "bed-time" and how to adjust to mom and dad working completely different schedules. We are so blessed!

On a different note, it looks like I have found a senator who would like to sponsor the bill for mandatory coverage of amino-acid formula in SC by private insurers.  I will keep you guys posted on this once the new session gets going.  Thank you to so many of you for all of your prayers, love and support.  I have been so touched by how many wonderful friends and family members we have who are willing to rally behind us (and carry us when we fall down). 

Monday, April 25, 2011

Test Results & Lots of Change!

It has been a really long time since I have sat down and written a post.  There are a few reasons for this - mostly, because our family has been going through lots of changes.  My husband has started a new job.  Today is his first day starting his assigned 7 pm to 3 am shift.  This job is such a blessing for our family and provides us with phenomenal benefits, but I had a little bit of trouble knowing that he would be away from me at night - especially when we have a 7 month old that is up 3-4 times every night.  I am so grateful for this opportunity for our family, though and I know that God will take care of me and our family through this transition.  Braxton is really doing great these days.  He is gaining weight (he is now in the 10th - 20th %), he is growing in height, and he is hardly throwing-up at all anymore.  He hasn't had scary diapers for weeks either! 

For several reasons, we recently became aware that we needed to change caregivers and made the decision to start Braxton in a pre-school.  He LOVES it there!  The school is awesome and his teachers met with us several times to discuss a plan to keep him safe from accidental exposure to foods (since we don't have anything "safe" except elemental formula).  Nutramigen AA has been working great for him and we are delighted to see Braxton really be happy and developing well.  He can now sit unsupported for long periods of time (he loves to play on the floor with his toys).  He is trying to learn to crawl, but has not quite mastered it yet.  Another positive change:  My husband's new job provided us with immediate access to incredible benefits.  Because the company is headquartered in Texas and Texas has legislation in place requiring private insurers to cover elemental formula, we will have up to 80% of the cost covered (we have to wait for the letter from our physician to be processed before we can begin to use this benefit).  This will not make me stop pushing to get help for the many families in our state who struggle with the enormous cost of this formula, however.  Unfortunately, I have been informed that there is no possible way to get the bill introduced until the next Senate session, so I am waiting for a few months to really begin drumming-up support again.

On a different note, we got our test results back from the Pediatric Center for Rare and Complex Disease in New Jersey.  They conducted in vitro blood tests which exposed Braxton's blood to specific food proteins to determine exactly what goes on at a cellular level with Braxton specifically.  We do not have the full interpretation of his results yet, but he showed significant reactivity to milk, soy, and gliadin - so we now know that he needs to pretty-much be milk-free, soy-free, rice-free and gluten-free as well.  This isn't helpful immediately since we haven't started food trials yet, but it will help us immensely once we begin food trials.  We have some direction - even if it is what NOT to try.  We also have a very powerful tool - Braxton's blood tests show that the FPIES diagnosis is accurate.  Hopefully, this will assist us and improve his access to care locally, as prior to this most of his doctors were unsure of what exactly was going on with him.  So, this is where we are to-date.  Lots and lots of changes, but many of them are so positive!  I will be posting more going forward.  I hope everyone had a great Easter!  Braxton had a wonderful Easter and received a basket with some cute little baby toys in it.  Who wouldn't want to get toys instead of candy on Easter???

Tuesday, April 5, 2011

Thank You, God...

Thank you, God for giving my family the special opportunity to have such a special little boy.  Thank you, God for giving my family the grace, perserverance, and strength to jump the hurdles this disorder can put along life's path.  Thank you, God for wonderful days when Braxton smiles and plays all day.  Thank you, God for allowing Braxton to continue to heal and helping him to thrive on his new formula.  Thank you, God for allowing us to see the miracle inside of our little boy;  For letting us witness how sweet and positive his spirit is even on days when he doesn't feel well.  Thank you, God for giving me the courage to speak up for my child and for others who haven't found a voice yet, when it is needed.  Thank you, God for sending our family down a path where we could find support and knowledge from others who have overcome the same obstacles we are struggling with.  Thank you, God for giving us the opportunity to turn something that could be so negative into something positive.  Thank you, God for giving our family the opportunity to help other families.  Please help us to continue to utilize our special talents and skills to advocate for others and to advance Your will.  Please give us discernment so that we can accomplish the goals that you have set for us.  Thank you, God for so many blessings. 

Monday, April 4, 2011

Finding Our Way to Normal

Braxton is finally doing so much better.  For the past two nights in a row, he has slept 6+ hours without interruption.  He is eating like crazy - I hope this is due to a growth spurt.  We went to church yesterday and for once I didn't cry through the entire service about FPIES and I didn't worry about him too much.  It was wonderful!  There is a gray cloud looming over my head, though.  I love these times - Times when I can play with him and watch him laugh... times when I really get to enjoy the unique personality of my little baby.  I know these times will go by in the blink of an eye.  I also know that I need to email Dr. J to find out what other brand of enzyme replacement and what brand of probiotic we should be using.  I am avoiding doing this task like the plague!  When Braxton only gets formula, we get to pretend like we have a normal life.  We can go places, we can do things, he feels great... everything is good.  Everytime we deviate from a strictly elemental formula diet with no medications, life gets bad.  No one in our house sleeps, there is constant crying, and I spend every waking moment worried about what is really going on inside of my little boy.  I know we can't go on like this forever - on a diet consisting stricly of elemental formula.  Three different people made comments about how Braxton is half the size of their 6 month old child (and at least in one case, I saw with my own eyes that this is true).  I know the time is close when he is going to have to start to have some solids.   I know that he needs an enzyme replacement to help him pass foods... I know that he needs a probiotic for the same reason - BUT - we just found our way to normal again.  I want to stay here in this safe place forever.  For tonight, I am going to enjoy normal - Tomorrow, I will worry about the rest and I will write that email I have been dreading to hear a response to...  Today, I am grateful for the many blessings God has given our family. This weekend and tonight have definitely been blessings!

Friday, April 1, 2011


I know I promised some additional resources to help with the formula coverage fight, but I will not be posting them this evening.  This week has been hard on our family.  We are so blessed and Braxton is growing like crazy, but he is also teething and seems to still be getting over the issues he had with the Creon.  I have not slept more than 2.5 hours total (no more than 60 minutes consecutively) in a week.  I am exhausted!  So exhausted that I am trying to develop strategies to deal with Braxton's issues...  I will post more tomorrow.  I hope everyone has a great evening!  Thank God it's Friday!

Thursday, March 31, 2011

Taking Lemons & Making Lemonade!

In the last four months, FPIES has really taught me a lot.  More than anything, it has taught me what an amazing little boy God blessed me with.  It has also taught me a lot about the fabric God wove me out of...  I am more determined, tenacious, and courageous than I ever thought.  If someone told me that one day I would be unafraid to put my little family (including new baby) on a plane and fly accross the country to see a doctor, I would have thought they were crazy.  If you would have told me that I could go for days at a time without sleeping and still take care of my family, I would have thought you were lying...  I have always been a person who likes clearly defined procedures and rules and going outside of what a doctor or authority figure had to say was completely out of character for me - at least I thought it was.  Like I said, I have learned a lot about what I am made of.  What I have learned most recently is that God really did make us where we can find purpose and blessings even in the moments that feel the darkest - if we are seeking to.  I know that sounds crazy, but I have really found this to be true.  FPIES is not something I would wish on any chid or any family.  It is very hard to deal with... but there are so many positive things that have come from it because we have sought to find a positive way to deal with all of this.  I now spend a part of every day of my life really doing things aimed at making a real difference in the lives of others.  From blogging, to trying to get legislation in place to help the many families that can't afford formula, to trying to raise funds for the FPIES United Family Fund, I fill the few free moments that I have when I can't spend with Braxton with trying to make a difference.  This is the biggest blessing that FPIES has given me.  It has given me purpose outside of my family and job.  It has helped me find my voice and has helped me start to become a voice for others.  I may not accomplish all of my goals, but I feel empowered.  I feel like I am seeking the path that God was grooming me and my family for all along.  Today, I am grateful to be making lemonade out of these lemons - even though Braxton can't drink the lemonade!   

Tuesday, March 29, 2011

Milk Formula, Again?

Not really...  but it feels that way.  I remember coming home with my newborn baby.  I was so exhausted.  He cried, and cried, and cried some more - Then, on occasion he would take a breath and he would throw-up or have major gas.  I look back and have no idea how I made it through the first six weeks of his life.  He never slept - I am not kidding, I mean NEVER slept.  When he did finally nod-off it never lasted for more than 15-20 minutes and he was screaming all over again.  For the last day and a half, we have been back to that scary dark place again.  Braxton has been screaming his head off - constant crying and lots of gas.  He wakes up every 2 hours (okay, so it isn't quite as bad as it used to be) screaming.  He is throwing up more and that rash I hoped I would never see again has re-emerged on his beautiful little face.  He has the same cough that he used to have - a dry cough that you can't quite put your finger on.  I know what this means:  it's the Creon.  I had such high hopes!  We are officially pausing the Creon trial.  Maybe I gave him too much (a "sprinkle" to me may be a "dash" to someone else).  Maybe it is just too soon to try it...  I am second-guessing myself as I type: Maybe I am crazy?  No, I know what this looks like - we lived with him like this for so long!  I hate FPIES!  What does this mean for when we are supposed to start thinking about adding a probiotic?!  I am so tired of him failing everything!  He has done well for 5 or 6 days, and now this?!   Well, it's not the end of the world.  We will move forward and continue to try.  I can't wait to get the blood results back from PCRCD - maybe we will have more information at that point.   For now, I will look on the bright side.  He has gained weight and length since we got back from NJ - like a lot of inches and a significant amount of weight.  He is now officially in 6-9 month clothes and he is officially 6 months old (he was in a 0-3 until he was 5 months old!).  Life is good and we are blessed, but for now - no more Creon. 

Monday, March 28, 2011

Initial Results from PCRCD & Strengthened Resolve

Things in our world have been a little crazy since our much anticipated trip to the Pediatric Center for Rare & Complex Disease in NJ to see Dr. Jyonouchi.  One thing, Braxton is growing again!  I am so excited to see him starting to thrive.  We have started trialing Creon as Dr. J suggested.  Although Braxton is still only receiving a "sprinkle" he seems to be tolerating it well.  He is actually doing better than ever and I couldn't be happier to see him thrive once again!  On Thursday, we got our inital report back from Dr. J's office.  Here are her impressions (this is pretty much quoted directly from the report):

#1 - FPIES - His clinical features are typical for protein induced enterocolitis syndrome. It appears that he had a severe reaction to rice. Given his early onset of reaction to milk protein, it may be possible that he was already senstized to milk protein in utero - this is reported in several cases. In the case of soy, it took about 2-3 weeks to start having reactions, indicating that he became sensitized to soy protein for the first time. 2-3 weeks of sensitization period for cellular T cell responses are typical.

#2 - Severe shock reaction to rice - Shock reactions to solid food proteins have been reported - typically manifests with severe vvomiting, lethargy, and watery diarrhea. I suspect that after his severe reaction to rice, his gut immune homeostatsis was further immpaired and he became intolerant to Neocate. His metabolic process of lipid and carbohydrates may have been impaired secondary to severe reactions. Additional enzymes may help.

#3 - Suspected Dysbiosis - due to prolonged use of antibiotics without probiotics close to delivery. This may have predisposed him to dysbiosis or less spectrum of commensual flora which may have hindered development of his gut immune system. Probiotics may help, but he may not tolerate potent probiotics containing multiple strains.

In addition to her impressions, Dr. J reports that she believes that Braxton may have become sensitized to milk in utero (Now I know why he kicked so much!!!).  She states that this has been reported in several cases. 
So there's the summary of the initial report.  Things finally make sense.  We are waiting for his blood results to come back within the next 30 days so we can learn even more about what is going on.  In the midst of all of this information, came what could have been a pretty large blow to our family.  My husband is an I.T. contractor.  He was told on Friday that his contract at work is not being renewed.  When he sat me down to tell me that essentially half of our household income had disappeared, the only thing I could think is, "How in the world are we going to afford Braxton's formula? We are already stretched to pay for it now... How can we continue to do it?  Where can we find help?"  Ironic that I would feel this way less than a week after I started my push to get changes started within SC related to the coverage of amino-acid based formulas...
Long story short, my husband was offered a job within an hour after he told me his contract was not being renewed by another company sitting 2 desks down from where he has sat everyday for the past 3 years as a contractor.  We are so very blessed.  I feel like God allowed me to experience these emotions so I could truly understand how so many families feel that can't find a way to get the prescription formula their child needs.  It has strengthened my resolve.  I will do everything I possibly can to help these changes occur within my state, and I will do everything I can to help others see these changes occur within their states.  I even contacted Senator Thomas today to provide more information on the fiscal implications of this proposed legislation. I believe that all struggles in life happen for a reason.  Maybe this cause is mine and Braxton's reason.... 

Friday, March 25, 2011

Template Letter to Legislator: Request for Legislation for Coverage of Elemental Formula

I have tried to find a way to upload a document to Google Blogger, but have been unsuccessful.  As I have received several requests to make the letter I wrote to Rep Smith available for others, I am pasting a template of it below.  Below this letter, is a link to the draft bill I attached provided by  I hope this is able to help many!  Please let me know if you are able to use any of this and have success!

Representative/Senator (Name),

I am writing to urge you to sponsor legislation that will have a tremendous impact on many working class families with medically fragile children.  My child has been diagnosed with (insert your information here – I have left what I had in my initial letter as an example) food protein-induced enterocolitis syndrome (FPIES), a condition that causes his body to reject most food proteins.  The reaction to most proteins is very severe and has even caused my child to go into shock. The only form of nutrition he can currently be sustained on is a prescription amino-acid based formula (AKA: elemental formula).  This formula costs $(insert dollar amount here) per can and although my family pays over $(insert dollar amount here) per month for group insurance through our employers, it is not even partially covered by our insurance plan through (insert name of insurance company). Both my husband and I are employed full-time within the private sector and we still struggle to provide my son with something as basic as the food he needs to survive.

My family is not alone in this struggle. Though my son has (insert condition here), many other conditions can cause a child to require an amino-acid based formula as their sole form of nutrition. This is an issue that affects many families who are working class who reside within our own district.  The confusing part about our inability to receive assistance to cover the tremendous expense associated with nourishing my son is that only working class families are excluded from assistance. Currently, WIC, Medicaid, the state employee’s  plan, and the federal employee's plan cover the cost of amino-acid based formulas when prescribed as the sole source of nutrition for a child.  Only those of us who are middle class or above and employed by the private sector are left to manage this expense without assistance.  Many families make decisions like down-sizing their home or becoming unemployed so they can qualify for Medicaid just to overcome the expense associated with this type of formula.  This is why I urge you to sponsor legislation requiring private insurance policies in South Carolina to cover the expense of amino-acid based formulas when prescribed as the sole source of nutrition for a child.

Many states have already enacted similar legislation including Arizona, Conneticut, Illinois, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Oregon, Rhode Island, South Dakota, and Texas.  I am attaching a draft of this type of legislation for your review.  If you would like to learn more about my family's story, (insert your info here… an example may be please feel free to contact me at any time – I have left the info from my initial letter here as an example) please feel free to visit my blog at  Thank you so much for your time.  I look forward to hearing from you and am hopeful that you will advocate for the many working class families who struggle with this issue.

Kind Regards,


Tuesday, March 22, 2011

Possible Legislation for Coverage of Amino-Acid Based Formulas in SC

Today, during my lunch break, I submitted an online comment to SC Representative Garry Smith related to the finacial struggles many SC families face who have children that require amino-acid based formulas (Neocate, Elecare, Nutramigen AA, etc.).  These families struggle because of the burden created by the enormous expense of these formulas and the failure of most private insurance plans to cover the cost unless the formula is administered through a feeding tube (Feeding tubes are not typically standard in the treatment protocols for many illnesses requiring elemental formula to be the sole source of nutrition.).  The comment only took me about twenty minutes to put together and I simply said what was on my heart.  While my family personally struggles with this issue, I believe a much bigger issue exists:  The fact that working class families employed by the private sector are the only families who cannot currently receive assistance with the cost of prescribed elemental formulas within our state.  In SC, Medicaid covers elemental formulas, WIC covers elemental formulas, the state insurance plan covers these formulas, and the federal insurance plan also covers these formulas.  The only people who do not have the opportunity to receive assistance are those families who are usually paying a substantial amount for private insurance coverage and are contributing directly to the economy within the community (the majority of these families are middle class families who are already stretched financially in this difficult economic climate).  I did not expect anything to result from the submission of my comments to Representative Smith, but I thought that I would at least attempt to raise awareness of this issue.  To my great surprise, Representative Smith contacted me back directly - today!  He is planning to share the information I sent with Senator David Thomas, the chair of the SC Senate Banking & Insurance Committee.  While I know this does not guarantee the introduction of legislation, I am hopeful that it is a step toward positive change for the many working class families who struggle with this expense within our state.   Hooray for politicians who are actually willing to listen to their constituents and who want to be a champion of the middle class working citizen!  God Bless You!

Monday, March 21, 2011

Elemental Formula Fails

I promised several posts ago that I would do a post on Braxton's Elemental Formula fails, as this has been such a big part of our journey.  For those of you who are not familiar with elemental formulas, I will give a brief summary of what elemental formula is.  When a baby can't tolerate regular milk-based formulas, normally the baby is switched to a soy-based formula.  1 in 5 children who cannot tolerate milk-based formulas cannot tolerate soy formula either.  These children are usually switched to what is called hydrolyzed formula.  Hydrolyzed formulas contain very broken-down milk proteins that most of the children who can't tolerate milk can handle (it is very close to breastmilk in how broken-down it is).  It is available at most stores, but is much more expensive than regular soy or milk-based formulas.  A very small percentage of children can't even tolerate the broken-down protein found in hydrolyzed formula (Braxton is one of these children... not surprising considering FPIES children can react to even a trace amount of protein from a trigger food).  For these children, the last alternative is a prescription amino-acid based formula (AKA: elemental formula).  Since our bodies are made of amino-acids, it is impossible for a child to be allergic to amino-acid proteins (it is not impossible, however, for a child to react to other ingredients found within this formula).  These formulas are NOT available in stores.  They must be special-ordered.  They cost anywhere from $40-$57 for a can that lasts a 6-month old approximately two days.  Because our family is blessed enough to be considered middle-class and both my husband and I work for the private-sector, our insurance does not pay any part of the expense associated with this formula ((The insurance plan for federal employees covers the cost of these formulas. Medicaid covers the cost of these formulas (we do not qualify).  WIC covers the cost of these formulas (we do not qualify).  In the state of SC, all state workers also receive benefits which will cover the cost of this formula.  In our state, only families who do not have anyone employed by the state or federal government who are above the poverty line have to absorb the tremendous expense associated with elemental formulas). 

Braxton has been prescribed 3 different amino-acid based elemental formulas. The first amino-acid based formula he was on is called Neocate.  Braxton thrived on Neocate for about 6 weeks.  I actually made the comment that it was like someone gave me a brand-new baby: A baby who didn't constantly cry and vomit.  A baby who slept through the night instead of waking up every 2-3 hours screaming. Gradually, Braxton seemed to become more and more intolerant to Neocate. The last week he was taking Neocate, he was up to about 15 dirty diapers a day and he vomited 7-8 times per day.  We were instructed by Braxton's doctor to switch him to Elecare.  Braxton stopped tolerating Elecare within one week of starting the trial.  He began vomiting even more than he had on Neocate and had approximately 20 dirty diapers a day.  He was taken off of Elecare after his dirty diaper was filled with blood.  He developed carbohydrate malabsorption (where the body does not absorb carbohydrates as it should - it can result in the child becoming malnourished) and severe intestinal inflammation.  Now, Braxton is on Nutramigen AA.  He has done okay on this formula, but he has continued to vomit often and has developed constipation.

When a child cannot tolerate breast milk, milk-based formula, soy-based formula, hydrolyzed formula, and seems to fail every elemental formula that is introduced, there are no other alternatives available to sustain the child (other than one strategy adopted by a very resourceful dietician we know who manufacturers her child's formula at home - this is very difficult, however, particularly for those of us who are not dieticians).   This is where we believed our family was...  We were absolutely terrified and could not find anyone who could provide us with help.  This is why we made the decision to travel to the Pedicatric Center for Rare and Complex Disease in Newark, NJ to see Dr. Jyonouchi.  She informed us that Braxton does not actually seem to be intolerant to elemental formula.  She instead believes that he does not seem to tolerate these formulas because his system was damaged so severely by his rice reaction (and then by the antibiotics he was treated with in error - he received 3 rounds intravenously), that his system can no longer regulate itself.  This theory would explain why he initially did so well on Neocate for about 6 weeks and then stopped tolerating it after his rice reaction. We are going to treat this problem with probiotics to help his system regain balance, and we were instructed to give him anything except prescription elemental formula for the forseeable future.  While my heart breaks when I see cute little baby spoons, sippy cups, and plates that I know he will not get to use for the foreseeable future, I am so happy that there is SOMETHING available that Braxton will be able to eat.  I am so grateful to Dr. J for not accepting things at face-value and finding a way to treat the problem - instead of just ignoring it.

Sunday, March 20, 2011

Trip to Pediatric Center for Rare & Complex Disease

We are back from our much anticipated trip to New York City to see Dr. Jyonouchi at the Pediatric Center for Rare and Complex Disease.  I am so grateful other moms told me about Dr. J.  Seeing her was totally worth the trip.  For the first time since Braxton was born, I feel like our family has a solid plan for how to deal with his food issues.  I don't particularly like some of the things Dr. J said, but I know that she is an expert and her directions will do nothing but help our family.

In a nutshell, she said that she believes that Braxton does indeed have FPIES.  In addition, she believes that he has a pancreatic enzyme deficiency.  Interestingly, she does not believe he is intolerant to elemental formula - though Braxton has never seemed to reach a baseline on elemental formula.  Instead, she believes that his reaction to rice cereal was so severe that it disrupted homeostasis in his gut.  Then, when antibiotics were administered, it wiped his system out... Basically, his digestive system no longer has the good bacteria that it should have because the severe reaction and antibiotics killed off everything in his system.  Because of this disruption to his system, every time he eats his body rejects the food.  He has been unable to heal completely.  We have been instructed to start Braxton on a medication to treat the pancreatic enzyme deficiency.  After we are certain he can handle this medication (several weeks of gradually increasing the dose amount), we are to begin giving him probiotics to re-populate his system with good bacteria.  If we do these things, Dr. J believes Braxton will eventually regain the ability to digest food as he should.  This does NOT mean that we get to just give him anything we want for him to eat. We have been instructed to strictly avoid all foods except for elemental formula for the foreseeable future.  In Dr. J's words, if we do food trials now "he will fail miserably."  We will probably wait until he is at least 10 months to introduce anything other than his formula into his diet.

Dr. J also took Braxton's blood to run tests.  Over the next 30 days, they will expose his blood to milk, soy, wheat and yeast and observe what happens at a cellular level.  They are also planning to extract white blood cells and stain them to study the physical make-up of his white blood cells.  After they are done, we will get detailed results about how his individual system reacts to these things.  It should provide us with even more direction!

After this trip, I can honestly say that it was worth the expense, travel time, and time off of work to see Dr. J.  I feel so much better equipped to finally help Braxton.  I am so grateful to all of our friends, family, and many other FPIES moms who have supported our family through this process.  I am very hopeful that things are only going to get better from here!

Saturday, March 12, 2011

Counting Down!

We are counting down the days until our trip to see Dr. Jyonouchi at UMDNJ's Pediatric Center for Rare & Complex Disease in Newark, NJ.  We will be leaving on Wednesday.  I am so excited, but I am pretty nervous at the same time.  We are praying that Dr. J can give us some insight on what to safely feed Braxton.  While he is doing "okay" these days, our daily lives are still interrupted by vomiting.  As an example, we had a great day today.  We went downtown in the city we live to shop and stroll around outside.  We were there for about two hours before the vomit attack began - leaving a puddle on the street in front of us.  It is 7:10 pm and Braxton has had a complete clothing change 3 times since he got up.  He had to have his bath early because the vomit had seeped through his clothing and his skin was damp all over.  I am grateful, however, that we are no longer allowing these issues to completely isolate our family from the rest of the world.  If Dr. J can assure us that these vomiting episodes aren't hurting him, I can live this way - our family can adapt.  I am so afraid that there is constant damage happening to his insides, however.  I am praying she can give us some answers!  We are so grateful to have the opportunity to see a doctor with such extensive knowledge on FPIES.  We are counting down the days... 

Wednesday, March 9, 2011

Breath-Holding Spells?

Weird title, huh?  Another mom asked me what some of the first clues were that Braxton had FPIES.  I quickly rattled off things that most of us know by heart (classic signs in the literature): vomiting, diarrhea, distrubed sleep, rash on face on occassion and then the blow-out rice reaction that landed us in the hospital.  It then occurred to me that I had left out a detail that was fairly important - at least in our story.  Not too many weeks after Braxton was born he started exhibiting a really scary symptom.  Sometimes, after we would fight him to take his bottle (we assumed this was due to what was diagnosed as severe reflux) he would belch very loudly, throw-up, and then become completely non-responsive for 2-3 minutes.  He was so out-of-it that I would try to revive him by picking him up and his head would flop from side to side.  Then, he would suddenly wake up and it was as if it never happened.  The first time it happened, I panicked, but once he snapped out of it I thought maybe I was just an ill-equipped, new, first-time mom who over-reacted.  The second time it happened, my mom was at my house and she exclaimed: "I am not trying to scare you, but I really think there is something major wrong here."  These episodes continued to happen to Braxton periodically.  I asked our pediatrician about it.  I explained that I noticed it always occurred within a thirty minutes after taking a bottle and went through his history of vomiting.  The official diagnosis: Breath-holding Spells due to the severe GERD (reflux) that had already been diagnosed.  Breath-holding spells occur in some children as a reaction to pain.  The child holds his/her breath until they pass out as a response to pain.  

Within two weeks of this diagnosis, Braxton had his shock reaction to rice.  We actually told them he was diagnosed with breath-holding spells at the ER that night, since he had experienced a period of being completely non-responsive before we made it to the emergency room.  Interstingly, he never passed out from having a catheter put in place, getting an IV, immunizations, or having his blood drawn.  After receiving the FPIES diagnosis a month later, I know that he doesn't have breath-holding spells.  While I have never heard another mom mention this symptom as part of a chronic reaction (reaction that occurs due to on-going exposure to a trigger-food on a daily basis; classic acute shock-type reactions typically occur when a trigger-food is re-introduced after a period of elimination), I am convinced that the FPIES immune response caused by milk/soy formula created this symptom.  He has never experienced this particular symptom again since going on a diet consisting strictly of elemental formula.  I list it here for several reasons: 1. It is important to know that sometimes physicians are wrong; 2. It is a part of our story, and 3. It may help a family who is experiencing something similar to be one-step closer to a diagnosis.

By the way, I thought the Breath-holding spells diagnosis was tough when he got it, but I would gladly take it over the FPIES!  I am grateful, however, that I am not as clueless as I once was and that he is not going through these episodes anymore.

Monday, March 7, 2011

Pay It Forward

FPIES can be a very hard thing to deal with...  There is a lot of uncertainty as a parent (particularly a new parent) as to what to do.  There is also a lack of support and information within most of the medical community.  Add on top of all of this a lack of understanding from friends and family that must be overcome with education provided by the family with the FPIES child (I understand why this is - FPIES kids look so healthy on the outside that until you witness an "episode" first-hand it is hard to believe they are sick) and it leads to anenormous amount of pressure felt by the family diagnosed with FPIES (yes, when the child is diagnosed the whole family bears the weight).  These pressures often lead to a sense of isolation.  Not many others really understand what the family is going through...  For my family, this weight has been easier to bear because of some amazing women who care.

FPIES has taught me more about community and compassion in the last 4 months than I learned in the 28 years of life I experienced prior to having an FPIES child.  Thanks to the internet, there is an entire online community of FPIES mommies who provide information, support and resources to one another.  These women have become my heroes.  There is no telling how many trips to the emergency room we would have experienced by now were it not for these women, and no telling how many times Braxton would have gone through shock.  There is also no telling how many days I could not have made it through without these women.  They have prayed for us, cried with us, and been there to give us advice.  They have never judged me nor laughed at the often ill-informed questions I have had.  One of them even sought me out when I had no clue the severity of the situation we were dealing with.  Had she not mentally prepared me for what was coming, I don't know if we would have made it through (Thank you, Joy)!  She even helped us to get our appointment in New Jersey.  The amazing part is, she did all of this while she was fighting for her FPIES child every day.  Another mom, Fallon, has provided me with tons of information on how my family can get assistance with the enormous cost of Braxton's formula.  She also has pioneered efforts to start the FPIES United Family Fund so more research can be done to help find a cure for these children.  These are only two examples of the many amazing women who have stepped-in to help my family;  Women I have never even met... These women helped me to stop being afraid to speak-up for my child and have walked me with me through some of the darkest moments of my life.  They have been our lifeline.

After finally getting an appointment in New Jersey, I asked one of these moms how I could be of service to her family.  After all, she has done so much for mine...  Her reply, "...share your story, raise awareness, help another mom that will come along and read your blog and posts... pay it forward!"  This is the reason I have started to blog: to keep the network of support going; To attempt to repay some of the kindness that has been given to my family.  I can only hope that by sharing my family's experiences, I can help another mom who is searching for answers or another mom who is in desparate need of understanding and support as I have often been during this journey.

Thank you so much to the many FPIES mommies who have taken the time to share your experiences, research, advice, prayers and support with me.  You are some of the most amazing women in the world!

Sunday, March 6, 2011

Can't You Just Give Him Goat's Milk?!

As I mentioned in prior posts, Braxton cannot have any formula that has cow's milk or soy in it.  He can't even have hydrolysed formulas (where the protein is broken down to a level that is very similar to what is contained in breast milk) like Alimentum or Nutramigen. I will give a little background about how we know this and answer the question, "Can't he just have goat's milk?!"

Shortly after Braxton nursed for the first time he begain spitting up.  He spit up so much that we called the nurse in three times because we were afraid he was going to choke and stop breathing.  We were told that he simply swallowed too much amniotic fluid.  We accepted the response and went home with our brand new baby who still spit up so much that he couldn't sleep for choking on it.  Those first few weeks were really hard.  Braxton dropped a LOT of weight pretty quickly.  He lost over 14% of his body weight in the first two weeks after I had him.  I was told to begin supplementing immediately.  Although all the signs were there that I would develop an adequate suply of breastmilk, the more I pumped and nursed, the less milk I produced.  I saw a lactation consultant two to three times per week.   She was baffled by it.  He NEVER slept.  When I say never, I literally mean that my baby never slept more than 15-20 minutes at a time.  He would wake up screaming!  He spit up constantly.  He began clawing his face until it would bleed and deveoped a rash on his face.  Over time, he developed a chronic cough.  He also had what sounded like sinus congestion and began snoring while he slept.

During this period of time, I took him to the doctor constantly (not much has changed in that regard).  We were told he simply had slight reflux, then we were told that he had severe reflux and would require two medications simultaneouly to treat it.  We were told he had infant acne to explain his rash.  Then, we were told he had developed cradle cap on his face as the rash got worse.  We were also told by a brilliant Nurse Practioner that we were causing him to cry and not sleep, and that I as a mother simply needed to "learn to let my baby cry."  In spite of these explanations, my intiuition told me that something else was going on - I simply didn't know what it was...

One evening I opened B's diaper and it had a large amount of blood in it.  My initial thought was to take him to the hospital, but I pulled my copy of What to Expect in the First Year down and looked up what could cause blood in the stool.  The description under milk allergy described pretty closely what had been happening to Braxton.  I phoned my husband, explained what happened, and asked him to bring home soy formula.  When we stopped using milk formula, Braxton's symptoms rapidly began to resolve.  Unfortunately, by day 8 on soy, many of them were back.  On day 14, we knew soy was no longer an option and switched to Alimentum (a hydrolyzed formula).  His reaction to Alimentum was immediate and violent.  He had projectile vomiting within two minutes of finishing the bottle.  He would not take a second bottle.  We switched him to elemental formula (Neocate).  Since that time, he has failed Neocate and Elecare and he is now on Nutramigen AA (more detail will be given on our elemental formula fails in another post, as this is an important part of the story).  He has been skin-prick tested to see if he is "allergic" to milk, soy, rice or corn.  All skin-prick tests were negative for allergy.  Children with FPIES typically have negative skin-prick tests.

If I had a dollar for every time we have been asked, "Why don't you just give that baby goat's milk?!" my family would be rich!  I know that this question is well-intentioned, but at some point it begins to feed into the sense of isolation that a family with an FPIES child often feels.  I have often wanted to reply with, "Do you really think we would be feeding him a formula that costs $57 for a can that lasts for two days and isn't covered by our insurance if we could just give him goat's milk?"  I have of course never said this to anyone, as I know that I hear responses like this for several different reasons.  Most people have never heard of FPIES and have no clue what it is.  It is hard to stomach that a baby would be born that can't eat anything - I get that.  It is harder to be the mother of a baby that can't eat anything...  It is also difficult to believe that a baby who is contstantly smiling and looks alright on the outside could be so sick.  What makes this question the hardest to handle is when someone who is a close friend or family member asks it.  It isn't that it makes me mad at that person, it's just that I wish they would be supportive by educating themselves on what we are going through and how to help Braxton (or at least prevent him from becoming sicker).  If you know someone with an FPIES child, one of the best ways you can provide them with support is to educate yourself and others on what FPIES is.  There are plenty of articles that are easily accessible on the subject thanks to the internet - some of these resources are provided at the bottom of this blog.  To answer this question once and for all - NO, BRAXTON CANNOT JUST HAVE GOAT'S MILK!

Saturday, March 5, 2011

How Can You Be Allergic to Rice?!

I promised yesterday to do some posts over the next few weeks that are "flashback" posts so Braxton's story can be told as a whole.  This one is particularly difficult for me to do, as most of what happened I would much rather forget!

Occassionally, when trying to explain B's condition, we will run into someone who says something like, "It's impossible to be allergic to rice!"  FPIES has taught our family that a lot of things people say are impossible are not only possible, but probable.  One of these possibilities is being allergic to rice.  Braxton, most definitely reacts to rice... Braxton has always had problems with vomiting.  He started vomiting almost immediately after the first time he nursed just minutes after he was born in the hospital (more on this in another post).  The vomiting has continued through today.  Our initial diagnosis: Reflux (GERD).  B was placed on two reflux medications simultaneously because the vomiting did not stop after weeks on the first reflux medication. When the second medication failed to stop the vomiting an upper GI scan was ordered to evaluate for anatomical abnormalities.  The scan came back "normal," but showed that Braxton experienced slight aspiration and slight reflux.  We were told to add rice cereal to his bottle to thicken his feeds to prevent him from aspirating. At that time, he was only 6 weeks old.  The day after the scan, we added the cereal to his bottle.  What unfolded that night continues to have an impact on our family to this day.

About two hours after Braxton took his bottle, he began vomiting.  This was different than the vomit we were used to seeing every day.  He vomited over and over again until his stomach was completely empty.  He then began to vomit bile.  He became extremely pale and his breathing became rapid.  He seemed to barely be conscious.  He began dry heaving and then went limp... All it took was one look between my husband and me - We both knew what the other was thinking.  We ran to the door, put him in the car, and drove to the ER.  We made the 25 minute drive in 9 minutes flat.  His pulse rate was over 240 bpm when he was finally evaluated at the ER.  What he experienced that night were the scariest moments I have ever lived through.  I knew that there was something seriously wrong... I knew that this was something different than I had ever seen anyone go through before and so did my husband.  I now know that Braxton was experiencing shock and it was indeed caused by his reaction to rice cereal.  After several days of hospitalization, he was finally discharged.  While he was not diagnosed that week (we were told it was a "stomach bug" - but I will post much more on this later), this was our first exerience with an acute, life threatening FPIES reaction.  My baby boy went into shock for the first time when he was 6 weeks old.  I have been fighting since that day to find answers and to prevent it from ever happening again. The link below is to a video that shows a child who is older than Braxton with a less severe FPIES reaction to rice.  I will NOT watch it again because it brings back too many memories and makes me ache for the child in the video.  I post it here so that others can become educated on what can happen to my little guy (and any FPIES child) when given one crumb of a trigger food:

Friday, March 4, 2011

FPIES, This Blog, & Where We Are Now

My son, Braxton, is 5 months old.  He is one of the happiest babies I have ever met.  He loves to laugh and play.  He has a chronic condition called Food Protein Enterocolitis Syndrome (FPIES).  FPIES has ruled our lives since shortly after Braxton was born.  Vomit, scary diapers that look like they were produced by an alien, and sleepless nights have become a way of life for our family.  The hardest part of Braxton's condition is the lack of support we have received from many within the medical community.  To date, I have fought for every bit of medical care my son has received.  That fight, along with the support I have received from other mothers who are involved in online communities who share their own stories in blogs, are the reasons I have created this blog. 

Although Braxton is only 5 months old, a LOT has happened in those 5 months.  If I tried to put it all in one post, it would be a short novel.  For this reason, I will do posts designed to catch-up what we have gone through so far over the next few weeks.  For now, I will give you enough of a summary to let you know where Braxton is in his FPIES fight to-date:

Braxton cannot tolerate any milk or soy formula (even the expensive hypo-allergenic kind that you can buy at the store).  Instead, he has to be on a very expensive kind of formula (not covered by insurance, but that is another post in and of itself) called elemental formula.  Braxton has not tolerated any elemental formula well.  He thrived on Neocate for about 6 weeks before he developed chronic diarrhea and vomiting.  Our medical team decided to switch him to Elecare.  After two weeks on Elecare, he developed severe vomiting and diarrhea, and had large amounts of blood in his stool.  He is now on Nutramigen AA.  He has held-up alright on Nutramigen AA, but still vomits (large quantities) every single day.  We know he does not fully tolerate this formula, but there are no other alternatives available for us to feed him.  He is not gaining in weight or height as he should (around 5th percentile in both).  No one on our medical team has offered any solution to-date.

We are currently counting down the days until an emergency appointment (actually set yesterday) with a speciailist at the Pediatric Center for Rare and Complex Disease in New Jersey.  Although it is a great expense, my family will be traveling to NJ from SC within the next two weeks.  We are hoping to find some answers there...

This is where our family is to-date.  I sincerely hope that this blog can provide information to other families who may be seeking it.  I also hope that it can serve as another vehicle to break the feeling of isolation FPIES can create for families experiencing the same fight.  Finally, I hope this blog will assist in  raising awareness of this disorder. Many of us desparately need the medical community to support us, but find that there is no support locally available.  Only through increased awareness and research, will we ever be able to help the children who fight this battle daily.