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, April 17, 2011
Dr.J advised that his gut is in severe dysbiosis and taking steps with food trials will only further this unless and until we correct it. We need to push through with probiotics, we need to address treating the potential overgrowth of bad bacteria if the probiotics alone can not regulate the dysbiosis, and we may need to consider enzymes to help further his digestion with food trials, following probiotic treatment. His gut has been in a state of dysbiosis for quite some time. It is going to take time to heal that.
Little Man has been on the CD-Biotic from Kirkman labs since returning from that visit to the PCRCD, with Dr.J's recommendation to start with a slow introduction of a single strain probiotic. We had a rough start, some would refer to as "die off", Dr.J called upregulation of the immune system in response to the probiotic strains (I think they mean the same thing, one is a medical term, the other a everyday term). Noting that with these symptoms, we were able to push through because nothing was significant or building or cascading, and it subsided completely by day 9. We had good increase in appetite and mood and he gained weight. Things were good, but we were noticing a "plateau effect", the probiotic wasn't lasting all day. We broke up the doses, doing one morning dose and one evening dose. This seemed to help some but we were still falling short. So, either he needed a prebiotic or it was time for the addition of a bifida strain. Dr.J left it up to us which to try first....knowing he could potentially react to either, or both.....
Here are my notes from those days:
3-12: 1st dose Bifida strains + CD Biotic. Woke up with fever from nap
3-13 Skip bifida, + CD Biotic. Ate poorly, fussy, pallor, chewing on wood, very crabby in evening.
3-14: Skip bifida +CD Biotic. Ate poorly, rough day, very fussy, very off, bad breath, shiny BM, crying in sleep
3-15: Bifida strains(2nd time)+ CD Biotic. Very fussy all day. Lab check today, CBC all within normal limits (may be the first time in his life!)
3-16: Bifida strains+ CD Biotic. Seems to be doing better but ate chalk, then spit up 2hrs.later
3-17: Bifida strains+CD-Biotic. Blood in stool, whiny a lot, gave Tylenol at night (so fussy/pain?) ?ing bifida strain, or from chalk?
3-18: CD-Biotic. Hold bifida strains. Tried banana. Better day- slept well last night, normal activity, but then up a lot through night after banana.
3-19: CD-Biotic. Nibbles banana. Slept better No bifida, ate well
3-20: CD-Biotic. Licked banana
3-21: CD-Biotic. Cough, runny nose, fever
3-22: CD-Biotic. Trouble going to sleep for nap
3-23: CD-Biotic. Try bites of banana again. Trouble sleeping, decreased appetite
3-24: CD-Biotic. Decreased appetite
3-25: CD-Biotic. Decreased appetite, trouble sleeping (up every hour all night last night after 12:30!)
3-26: CD-Biotic. Plum organics peach in millet muffin tops (semi-retrial of plum organics brand)
3-27: CD-Biotic.Millet muffin tops
3-28: CD-Biotic. Ate ok all day but ~8pm, coughed and threw up
3-30: CD-Biotic. Restart bifida strain. Difficult with nap but ate ok and slept well overnight.
3-31: ProBio Gold. Napped easily, morning BM had blood
4-1: ProBioGold. Rough day, up through the night last night and coughed and threw up a little Fussy and clingy all day
4-2: No probiotic. Decreased appetite, awake a lot through night last night but didn’t want to eat, less wet diapers, fussy, tired, played very little today, pallor. Issues from ProBioGold?
4-3: No probiotic. Diarrhea/liquid BM, +Smell; otherwise doing better today Reacted to ProBioGold??
4-4: No probiotic. Bites of banana (asked for it). Green shiny BM.
4-5: No probiotic. Ate puree peaches. Lots of crying through the night last night, poor appetite all day. Recooping from ProBioGold or from Banana? Needs probiotic. No more banana
4-6: No probiotic. Difficult sleep for nap- pain, kicking legs, couldn’t stay asleep, Morning BM full of mucous (?banana)
4-7: Restart CD biotic. Appetite still poor, still some mucous in BM. Clearly seems to need probiotic.
4-8: CD biotic. RRD, Pallor (lips and eyes), fussy in afternoon. Appetite improving.
4-9: CDbiotic. Pale. Skipped morning probiotic
4-10: CD biotic. Cranky, lots of gas, struggled with nap. Readjusting to probiotic or still re-cooping from banana or ProBioGold?? +BM with mucous and blood.
4-11: No probiotic today, no BM today.
4-12: CD biotic. Up for 2hrs in the middle of the night last night! (?from missed probiotic?)
4-13: CD Biotic. Nectarine (mistake- thought frozen nectarines were frozen peaches, until opened bag and ready to give it to him). Crabby all day. Blood & mucous in evening BM.
4-14: CD Biotic. Lab draw today, rough afternoon after. Poor appetite all day. Found out Anemic again, hemoglobin 8.8 (normal is above 10.5)!
4-15: CD Biotic. Working on decreasing arrowroot in formula, tolerating it well. Playing well, happy boy.
4-16: CD Biotic. Doing well. Playing well, happy most of the day, until....he got a hold of a juice box. 100% juice still has citric acid and ascorbic acid added....he reacted, within 2hrs. he was screaming, 4hrs he had a 'reaction' diaper, and 7hrs. later was the vomiting.
When did we start to spiral? Did you see it? How do we stop? His iron was falling, some time after 3-15, we had it checked that day and he was doing so well! Maintaining a hemoglobin of 11 for a month. He had some bloody stools this month, some minor reactions, a fever/virus, some gut flora disruption...but we've barely moved 1/2" forward, and now we're set back again. He spirals so easily, one false move can set it off and it can be so difficult to regain ground with his "atypical" FPIES. We still do not know why he is so sensitive. The findings from Dr.J's research give us clues but no definitive answers as of yet. It is all still about the trials-take a step, evaluate, take a step, evaluate again. So, next steps? IV iron, stool studies, pushing through to get a good probiotic established and tolerated (maybe trying a new one?). All of this before we can even think of a food trial!