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."
Wednesday, July 27, 2011
My notes from the appt:
•He knows what FPIES is, and that it is a severe gut immune response.
•Would like to see Celiac and other auto-immune genetics testing done as this will help guide treatments (how susceptible are his genetics to these auto-immune and inflammatory conditions?)
•Possible for IgG testing (blood) in the future.
•Hyper-permeability of the intestines will result in reacting to proteins once previously tolerated- could be building up an intolerance to something in his regular diet.
Hyper-permeability can be from:
Nutrition (lack of nutrients)
•Would recommend a Nutral (?) test (urine and blood) – tests for nutritional Efficiency (vs.deficiency)- to see how well his body is utilizing the nutrients he is getting.
•Glad to see he is on a probiotic and tolerating it (acknowledges that you can react to a probiotic because of it being cultured on dairy if you are dairy intolerant), wants to look at other strains for him. He was intrigued that he is doing so well on sacchyromces strain. Would like to look at getting custom probiotics- strains made just for his profile as well as compounded just for his needs. Knows a PhD (the bug guy) that does custom probiotics to see if this can be done.
• Agrees with our GI that, right now, he absolutely needs TPN and that it presents with a unique and beneficial opportunity for working through the probiotic strains introduction. Was glad to hear he tolerates TPN well, from his history.
• IgG powder, feels he would benefit from this- we looked at the powder he carries and it looks “pure”, but he will get in contact with the guy who makes them as they are friends to be sure there are no corn (or dairy/soy) ingredients.
•Pancreas elastase stool test showed “robust” pancreatic enzymes but reports that only 10% of enzymes are put out by the pancreas, the rest are from the brush border- which he acknowledges he has none right now (with inflammation/permeability).Would like to find an enzyme product that he could tolerate, as this will be beneficial for helping his body to breakdown foods.
•Agrees 100% that we need to do things systematically and slowly, one thing at a time and monitor each step made.
•Acknowledges that there is no one thing to do that would be the “click” but that we can look in all these “corners” and find things that help piece it together for him to thrive through it.
•Above all, needs a collaborative effort- not just from other MD’s on his team but mainly from us as his parents. He will suggest things and I will need to know if it is something we’d like to try or not.
•Unfortunatly, it does come down to the parents managing a lot in these kinds of cases; we know our children. It is a lot for parents. Supportive doctors can help.
•Discussed his soy and corn reactions- he confirms Dr.J theory on the cytokine storm and relates that it is localized and not full organs (as it reports in literature). Avoid soy. Corn needs to be avoided in all derivatives, acknowledges this to be very difficult to do and echo’s Dr.P (allergist) in a “tiny menu”.
•Interested in being put in touch with Dr.J (research MD in NJ) shared those study results with him and he acknowledges that the results are not concrete and really don’t tell all but can be used as a tool (along with many other testings-stool, blood, urine, genetics, etc) to help guide treatment/next steps direction; especially when you hit bumps in the road.
•Feels my instincts on that Little Man's severity is directly linked to his gut flora is right on and that the focus needs to be on correcting his dysbiosis; and this will help correct his over-reactive responses to every.little.thing right now.
FULL day, lots to absorb and process, lots of my own research confirmed. A new doctor to add to our resources for Little Man's team. A team to keep him thriving through such a confusing diagnosis.