Mothers Intuition

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, March 23, 2011

Colds, Banana, and Probiotics...oh my!

Well, banana went great the first day.   The night was fairly uneventful (or at least not off course from his usual- up a lot to eat).   The next day, he wasn't as interested in the banana but did manage a few nibbles.  Nibbles are ok when you are trialing- there is a need to take it slowly.  But Sunday came and he was not interested in the banana at all.  Frustrating, disheartening.  Why won't he eat?  He wants to eat.  We're still missing something.   Too much of his safe foods, and he has a belly ache; to little of his formula and he is up all night hungry.   There must be a balance in here somewhere.   A balance where I find him a tiny menu, even if it is a menu I need to rotate through so as to not overwhelm his system and to provide him with lots of textures and taste changes. 

Little man drives me....I keep researching his condition, and all the symptoms surrounding it.  I truly believe to treat a disease, you need to find the root- treating symptoms only gets you running on a wheel...and we've been there.   The results from the bloodwork with Dr.J at the PCRCD are back but we're waiting on her to finish interpreting them.   She sent along a brief interpretation with the results but said the rest has to wait until after her return from the AAAAI conferences. 

So banana isn't moving, how is he doing on the probiotics?   We continue to use Kirkman labs CD Biotic that is the lactobacillus strains, the addition of the bifida strains (Bifida Complex), we were seeing odd symptoms- but they coincided with this current cold so it is difficult to tell.  I stopped it for a few days and he has certainly been less fussy/whiny/clingy.   Dr.J suspects that one of the bifida strains may be a problem and we discussed a possible switch to Pro Bio Gold - which is a mixture of a 4 lactobacillus strains and 1 bifida, and also adds in a new strain (a streptococcous thermophilus).  

My instincts are shouting at me to get some stool tests done.  Stool tests that I've come across a few times, that others have mentioned in different arena's.   These are not medical stool samples that test for malabsorption, blood, and white blood cells but another kind- one used in alternative therapy's.  This Stool Test tests for: "Digestive Function Analysis, Microbiology Analysis, Bacteriology Culture, Fecal Fat Analysis, Yeast Culture".  Little man has had stool studies done, he has also had biopsy's taken to check for small bowel bacterial overgrowth.   So, why do these tests?   They test further than "evidenced based medicine" does.   The argument against their reliability is in the results.    Testing for definitive bacteria activity in the gut is difficult since some of the bacteria that inhabits are guts is not even discovered or named yet, some is not able to live once it hits oxygen (anaerobic), so therefore difficult to quantify on a test.   Also, stools can vary in the pathogens, bacteria from day to day depending on diet, medications, environment, outside stresses, etc.   So, how accurate are they?   Let the body guide you instead.   So, I haven't done them yet.   But Little man is on a steady diet, so his stools shouldn't be dramatically different from day to day at this point (that would change once we get into food trials consistently) and even with the probiotic addition- we are still missing something....something in his gut.   Maybe he already has too many good gut bugs, maybe he has a really resistant "bad" bug, maybe it's not his digestion at all.    I didn't want to spend the money on these tests if we could figure out his 'root' in other ways but my instincts keep telling me it may be time.   My bank account holds me back too of course.   The tests cost ~$300-500!!   But what if?  What if they tell us something we are missing?  They are not definitive tests but they could be another piece, another clue....another really expensive clue.   But time is money, and if it had a clue we are missing that would save us time....and most importantly, his health....then we owe it to him to try....

We've done this with so many other things thus far, our trip to PA, taking him off elemental formula, trialing soy, our trip to NJ, all gambles in their own sense - but all benefits to this really big puzzle. All steps to getting him one step closer to healing and thriving.  

2 comments:

  1. Do it baby do it
    Love Suna and Mitchy XXxxx

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