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.... 

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 childrensmagic.org.  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 www.whatseatingyou-fpies.blogspot.com.  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,

 YOUR NAME HERE

DRAFT BILL FOR COVERAGE OF ELEMENTAL FORMULA

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!