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.... 

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:

Video of Jack's FPIES Reaction