Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Sunday, February 27, 2011
The FPIES puzzle...more on probiotics....
Little man is among the many FPIES children with a gut dysbiosis that is making their FPIES more complex: more intolerance's than tolerances, more symptoms than not, symptoms build on symptoms and the dysbiosis complicates itself.
Before FPIES diagnosis, we were lost in a sea of murky waters of chronic symptoms - piling on top of each other and drowning us. We could barely see straight, much less breath above water. Once we finally found FPIES, we were able to slowly get ahold of not only his symptoms but his triggers. Once we got ahold of his triggers, we were left with the dysbiosis in his gut....but not before the damage had been done to his gut. Now, we have repaired that damage (with gut rest and IV nutrition), we are ready to begin healing his dysbiosis.
We began the probiotic this week. Simple strain. We have noted varying degrees of symptoms on every day. I have read information from other moms about the "die off" effect with treatments such as yeast protocols, even antibiotics, and probiotics. The dysbiosis is disturbed and the body is reacting to that. I recently got a book to review for further information, hoping for more light on our path....The Gut and Psychology Syndrome, referred to as GAPS. The information presented in this book addresses the neurological effects of gut health and nutrition and has information applicable to the gut health of FPIES kids as well (much like Dr.J is researching the similarity's of the immune dysfunction of ASD kids and PI kids). In this book, there is a chapter on probiotics. It is a good chapter, and I jumped ahead to it today as my concern for Little Man's symptoms grow. This is what she says about probiotic treatments: "...a good therapeutic strength will always produce a so-called "die off reaction". What is it? As you introduce probiotic bacteria into a digestive system, they start destroying pathogenic bacteria, viruses, and fungi. When these pathogens die they release toxins.....symptoms may temporarily get worse....may feel more tired than usual, generally "off color", or develop a skin rash. It is a temporary reaction and usually lasts from a few days to a few weeks in different individuals. To make this reaction as mild as possible, build the dose of your probiotic slowly. Start with a very small amount. Observe for any "die off" symptoms. If there are none, then increase the dose. When you see a reaction, settle on this dose until the "die off" symptoms disappear. Then increase the dose again....keep on increasing the dose until a therapeutic level is reached. This period of building the dose can take from a few weeks to a few months in different patients. It is very individual and depends on how much overgrowth of pathogenic microbes the person has in the gut." She goes on to clarify that you should always work with a knowledgeable physician to find this therapeutic dose. And also, once the therapeutic dose is achieved, that someone with a gut dysbiosis will need supplemental probiotics for life (whether in pill form or fermented foods) as the gut flora is established at birth and probiotics will not colonize this established resident gut flora, but will flourish alongside it to give the benefits of beneficial bacteria to control the pathogens and correct the dysbiosis.
I am pulling pieces from Immunology, Allergy, Digestion, Gut-Brain connections....all add up to the pieces in this FPIES puzzle. Dr.J and her research at the PCRCD is giving us some light into the puzzle - not only from her research but from her multiple articles written on the subjects of gut dysbiosis and Non-IgE food allergies. But also, I am looking for, and finding pieces to the puzzle in other places too. Every one's puzzle is unique to their own genetics, environment and nutrition. Every child has their own unique-ness in their own puzzle. We need the base to the puzzle in order to even begin to solve it. But what is that base? What happens first? The Immune dysfunction? The Gut dysbiosis? The immune dysregulation from the gut dysbiosis? The gut dysbiosis from the immune dysfunction? Will we ever really know?