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???

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....