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."

Sunday, November 14, 2010

More Pieces to this puzzle?

My last post I talked about how the pieces to the puzzle were dumped out all over the floor, and that there may be pieces all mixed in from another puzzle.   Well, maybe (just maybe- not confirmed yet) that Soy is putting more of those pieces in their places.   Soy trial from 11/3 - 11/5, he consumed 6oz. the fist day, 6oz. the second day and double that the 3rd day.  We saw a few "weird" symptoms but they weren't hanging around and they weren't building; so we dismissed from the hospital on Friday night and stayed optimistic to call soy a pass in a few days.   Saturday afternoon brought on a whole new story.   After getting up from his nap, he was running a fever and was so miserable.  Sunday was the same story.  By Monday we wanted him seen and evaluated for a source of the fever.   Tuesday we were hoping he was turning a corner but by evening it was clear he wasn't winning whatever his body was fighting.  I had stopped soy on Monday morning and returned to his safe hemp milk formula that he otherwise thrives on.   Wednesday, after a positive-for-blood stool sample and discussion with GI doctor- we decided best to have him admitted for continued monitoring back to baseline and then look at either re-trial of soy or trial of a vitamin the GI doctor has found that we think may be safe.  By Wednesday evening, he looked like he was turning a corner and Thursday was a good afternoon.   But it was a false sense of security because overnight Thursday he began to run fevers again and developed a very "seal" like cough and runny nose and was just downright achy miserable.  His formula intakes were very poor through all of this, only taking in half or less of his needed caloric intakes.   We waited it out on Friday- trying to decide next steps, waiting to hear from the GI doctor on what her thoughts were for next steps (soy re-trial or MVI?).  By late afternoon, it was decided that we should proceed with a multivitamin trial rather than risk a fail with soy.   The main goal and priority now is to get the micronutrients he needs that his hemp milk formula doesn't provide....although labs were all done on his body's levels of these micronutrients and he is holding with all normal levels, so that has been encouraging.   Although the thought process is to treat it now before he loses these body stores and dips low (like with his anemia); and to have all the nutrition he needs in his formula and a vitamin as we press forward- taking breaks when needed, through food trials. 

The vitamin presented as possibly safe has some concerning ingredients that I will need to check on before trialing it.  I am in desperate need of assuring he is getting the nutrients he needs but also very worried about making him sick -- from a vitamin, synthetic nutrients!  I would SO much rather be doing a food thoughts go to Egg.   Egg has so many beneficial nutrients - maybe if he could pass egg, he can fill in the blanks to assure optimal nutrition from FOOD.   I am all for whole food vs. supplements but I do realize when the need outweighs itself.   So, I have some (more) researching to do this week; along with more research/reading on Protein Intolerance.  

FPIES is protein intolerance, it is viewed as the severe end of the spectrum of protein intolerance.  Much like anaphylaxis is the severe end of the spectrum of IgE allergy's.  Not everyone with IgE allergy's reacts with anaphylaxis, in fact it is rare.   Not everyone with Protein intolerance reacts with violent vomiting to bile/lethargy/diarrhea and shock- FPIES reaction.  It is also rare.

Soy brought on what looks more of intolerance symptoms (disturbed sleep, runny stools, bloody stools, mucous in stools, runny nose and a barky cough).  Not symptoms you would want to see at a baseline!  But not FPIES trigger either?  Not clear and not tolerating either way.    We will need to re-trial soy again soon to know for sure. 

Protein Intolerance is where I began this journey.   But his symptoms didn't fit nicely in that box.  Reflux was suggested, but his symptoms didn't fit there, EE was ruled out, Celiac was ruled out by biopsy.   Elimination and elemental diets brought us closer but still not in a box.   FPIES discovery, diagnosis and treatment brought us a baseline.   And yet we still were struggling to maintain that baseline.  More to come on protein intolerance vs/and FPIES as I learn more of this puzzle.

We did come home from the hospital (again) on Friday night.   We felt since Little man was FAR from a baseline (bloody stools everyday last week, with this congestion/cough/fevers) we couldn't introduce something and see a clear picture of how it was affecting his body.   We are so glad we came home!  We have enjoyed the past few days just being a normal family.

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