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."
Friday, February 25, 2011
Essential fatty acids (Omega 3): I initially tried some fish oil- last March. They were free of dairy/soy contaminants; and at the time that is all we knew of his triggers. They were a high quality brand, that I had obtained from the chiropractor. Unfortunately he had symptoms from them, after 3 doses...I don't remember all the symptoms (no food logs at that time) but the two main ones I do remember were disturbed sleep, and a rash (tiny hives) on his face. At the time, we assumed the fish contamination could be the culprit and just stopped them. I still have that bottle and looking at it with FPIES eyes see there are other ingredients that could trigger an FPIES response: cod liver oil, flaxseed oil, extra virgin olive oil. At this time I feel he either reacted (IgE) to fish (disturbed sleep and hives) or he reacted (either IgE or FPIES build) to olive oil. We won't be trying either anytime soon.
Hemp milk has excellent Omega 3/Omega 6 ratio, a good source of EFA's...a super food, a functional food. I sometimes wonder if that is why he did not react to it? Very high in EFA qualities that his body needed to support hsi anti-inflammatory mediators.
The next thing we attempted is the probiotic. I knew about his dairy and soy triggers and we were just beginning to move away from the corn triggers, and found this one: GI ProInfant by GI Pro Health ; which has a great profile of Lactobaccilli and Bifidibacterium, multiple strains. Other ingredients: Inulin from chicory root and proprietary polysaccaride complex. This was pre-FPIES diagnosis where I checked the SOURCE of any and all ingredients to be sure they are not derived from his trigger foods (very common to find something derived from corn!). I think I did find out that this product was cultured on dairy but the dairy proteins were removed (common with many probiotics- ALWAYS check the source of ingredients and always check where yogurt is cultured on- it could be dairy, it could even be rice! I now know this is not good enough for very sensitive FPIES such as Little Man, but I did not know that then and so we trialed it. He did not tolerate it and we assumed it was the chicory root because it seemed to be tummy/gas pains then FPIES trigger (dairy derived).
My previous train of thought isn't that more is better but that you simply wanted good combination of active strains. Probiotics are bugs after all, and keeping them alive can be a challenge- they need a good medium and require refrigeration...some brands "seal" in the strains in processing but in general- the longer the shelf life, the more likely to have less alive bugs by the time you consume them. Having them live on fermented food is ideal. The food will also act as a PRE-biotic. A prebiotic is essentially the food for the probiotic to survive the stomach acid to deposit deep into the intestines where they will colonize with other bugs and live and thrive happily! Fibers are good pre-biotics, inulin is a popular fiber for manufactured (pill) probiotics. The most common one being chicory root, although there are other substances that can be used (tree fibers) to make them hypoallerenic and well tolerated.
After he did not tolerate the GI ProHealth Infant, we tried a yogurt starter from the same company - again, we were feeling it was the inulin he was having trouble with. I successfully made yogurt but it didn't take much for him to have reaction symptoms(yogurt-starter blog post); so this was abandoned as well. We have not tried another probiotic, until now. I did extensive searching and found CD Biotic from Kirkman Labs that looked promising, I have spoken to the company and found out the ingredient sources, I also purchased a Bifidibacterium strains one and there they have sat- in my refrigerator....too afraid to trial them and have a fail, to afraid to have a fail on a non-food item when we needed to be trialing FOOD. Too afraid to over-dose him or under-dose him, or give the wrong strains.
Dr.J recommends probiotics; she wants us to start with a single strain of a safe probiotic or even get it compounded. A good candidate for a single strain looks to be Culterelle; but I have Kirkman's in my fridge, calling my name for months....so I decide that even though it is not quite single strain- that we will start here. I open the capsule and give him approx. 1/3 of the powder mixed in a tiny amount of his hemp milk and syringe fed to him. The first 2 days, he loved it. The 3rd day I got crazy and mixed part of it with coconut oil....I am not sure if he ingested it as he spit it out all over the kitchen! I'm thinking coconut is a no-go for now.....and as the day wore on, my fears kept climbing about coconut. He has, of course, had it before- but we haven't called it "safe" yet. With that day's symptoms- I will not be trialing it again until we have the opportunity to trial it alone. For now, we continue with the probiotic. He seems to be tolerating it ok- we aren't completely symptom free but the symptoms we're seeing aren't all bad, and I'm not sure yet what to make of them except that they are symptoms of his dysbiosis being corrected...we will see what the next days bring.