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."

Thursday, May 19, 2011

A switch?

We seem to be at a baseline that we haven't been at in a long-long time.  The last time I remember him being this stable was last fall.....before anemia hit us with a side blow, before soy fail hit us with villous atrophy, before TPN, before re-cooping from TPN and failed vitamin trial, and accidental ingestion's, and, and, and.....

Even his recent reactions (from accidental ingestion's, banana, exposures) have been rough but not as severe as past reactions.  And despite the recent illness from IV sucrose, his body seems to be bouncing back much better than it previously would have.  Why is this?  Is he maturing? Becoming less reactive? Or have we hit on something that "fits" his needs?  

It has taken 2months of playing around with probiotics but we seem to have finally hit on a good strain and dosage for him.  And although it is very delicate dosing, on the days when we get it right- he is such a different little boy.   I have found that he needs 2 capsules/day, of Kirkmans CD Biotic (broken open and dissolved in hemp milk).   He can not have 2 capsules all at once, it's too much.  He does ok when I break up his dosages morning and evening but he has a plateau effect from that.   After his stool study came back and showed that he has no lactobaccilli growth detected, it becomes clear why he plateau's so easily and I have the idea to try and mix it in his formula, so he is getting low-dose, all day long.   This works wonderfully but it has taken a few weeks to work through kinks (and I don't think they are all worked through yet!).    I discovered that I can't put it in too many bottles at once, it goes about 8-10hrs, and then it starts to ferment and he doesn't so much enjoy that fermented hemp milk taste.   Have you ever tasted/heard of Kefir?  It's kinda like that.   Now, that is a good sign- it means those probiotic bugs are active!  It also means there is adequate sugars/carbohydrates for them to survive off of, enough to grow.  Now, do they make it past his stomach acid?  I hope so.  Hemp has a decent amount of fiber; and fiber is what makes a good pre-biotic.    Either way, we're working with what we've got and it's working ok.   I long to get coconut in his diet- to make coconut milk and coconut yogurt and so many other things.   We're working on it, very slowly.  

Good appetite, weight gain, less adverse effects from reactions....all very good things but the best thing so far that we have noticed a change is following antibiotics.  Little man has dysbiosis- meaning his gut flora is off, there are more "bad" gut bugs than "good" and although I still learn more everyday to all the effects this has on health, immune system, the brain even; we see the effects it has had on Little man....with very little oral tolerance, with disturbed sleep and mood, with failing most foods we trial, and with pain.   Pain that I don't completely understand but know is there....a mother knows when their child is in pain.  Pain that has been absent from our everyday now since antibiotics, followed by increased probiotics.  Is this the switch he needed?  

I want so badly to test it out- to try a dozen new foods!  And yet, I also want to just stay here for awhile, not risk causing him that pain again.  And what if I introduce a food that flips that switch back into dysbiosis?  But what if not introducing a food causes him to slip back into dysbiosis again?  What if there is a "good" food to do, what if I pick the wrong food? 

We must go forward.  He needs a better menu, he needs B vitamins, and better Vit.C, and micro nutrients, and variety....and!!  Yesterday, the 4 boys and I drove 40miles one way to get 2# of ground buffalo, and a pound of buffalo liver.  The Buffalo gal even threw in some Elk from a farm down the road, in hopes that Elk may be even better for him than buffalo.   Buffalo aren't typically fed corn.  They graze as they did hundreds of years ago; but some farmers do "finish" their buffalo on corn.   "Finishing" happens with a lot of grass-fed animals, so if you're watching for soy or corn feed- always check to be sure they are not "finished" on corn/soy.   Adding the corn/soy feed in at the end likely gives them less "gamey/grassy" taste to the meat.   Little man's corn trigger is quite sensitive so we do not want to take the chance.  The buffalo gal was worried that her buffalo, being free range may come in contact with some corn-like grass over their lifetime; she felt compelled to inform me this.   I am taking the chance that it will not be an issue- it's all about the trials anyway?   But, she wanted us to try Elk first as they are not free-range and are sure their diet does not consist of any corn or corn-like products.   I also had her check with the butcher/processor, to be sure there is no spray or preservative during processing that would come from corn.  The things I never thought of before having a child with a corn allergy.....

We will give him another week or so, to be sure he is healed past the recent illness.   The IV sucrose was not in his gut- so we feel he shouldn't take as long to heal from that, despite how sick it made him that week.  We will wait for good weight gain to show itself, and to continue this baseline we see.   Then, Elk, Buffalo, continuing coconut, and some vegetables? 


  1. Oh I hope it holds! And wouldn't a meat be great?! We are rooting for Sam and for you too, Mama! I ask myself that same question all of the time "What if I pick the wrong food to try? What if there was a better food that could have helped?" It is a frustrating cycle! Nonetheless, good luck and we are thinking happy buffalo and happy elk thoughts!

  2. Yay I hope his good run continues
    Love Suna and Mitchy XXxxx
    P.S Mitchy's post antibiotic food tolerence was really improved too.

  3. A pound of buffalo LIVER? wow! now THAT is amazing. excited for his progress. antibiotics, probiotics...the right combination. hooray! Ellie just had elk for the first time last week (wish we could score some bones) and boy was it grainey. Can't wait to hear what you plan next!