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."

Saturday, April 23, 2011


Little man has always had low hemoglobin, the first blood work we did (around 6mo.) showed a low hemoglobin and low Vit.D.  It was one of my confirmations of the intestinal inflammation I suspected he had, that matched his ever-growing symptoms.   A change from breast milk to elemental formula where we could be assured he was getting the iron his body needed, but his hemoglobin continued to teeter and his iron stores continued to fall.   Iron is needed for the body to make hemoglobin.  We got him started on some oral iron pills- even compounded to avoid his allergens (corn), initially he seemed to respond to them and we had hopes it would do the job- slowly but safely.   He had a lot of weird symptoms at that time but we attributed to iron upsetting a sensitive stomach and resigned that it would be part of the side affects he would have to deal avoid a blood transfusion.   A few weeks later and he was no longer responding (even reacting to) his iron pills, his iron stores were severely depleted and his hemoglobin dropped severely low.   By the end of October, he was admitted for a blood transfusion....a very scary time for us.  He responded well to the blood transfusion and his hemoglobin raised nicely; however it did little for his iron stores and within a few weeks, he was quickly declining again.   After the soy challenge, it went very low.    That is when IV iron was decided to be the best course for him, along with IV nutrition.    That was almost 4mo.ago.   We have been checking his blood labs frequently, with two checks in a row revealing a wonderful hemoglobin within normal limits.   We last checked March 15.   We had a follow up appointment on April 15 with our GI doctor, it was time to check his labs again....he was chewing on wood, he was fatiguing easily, his appetite was declining, he had had accidental ingestion reactions, he was spiraling....the blood work came back and we were all surprised to find a low hemoglobin once again (8.8)!  Back to IV iron....

Why are his iron stores always so low?   Is it his diet?   From the outside looking in, it would be an easy culprit to blame; but a quick glance at all his lab data and you can see his iron stores progressively declining from 6mo.until he got TPN (IV nutrition with IV iron)- even through getting 5+mo. of elemental formula.  IV iron has been the only thing to bring his levels back to where they should be.   His DRI (daily recommended intakes) for his age is around 7g.- he gets around 15g/day! He is missing vital B vitamins (gets some but not all) so essentially he is a 22mo.old vegetarian. The typical recommendation for a vegetarian is to double up the protein sources to assure adequate iron intakes since non-heme (plant) sources of iron are not absorbed as readily by the body as heme (meat) sources are. So, we're doing that and still he is unable to maintain his iron.

His gut is not absorbing his iron enough- regardless if his diet is complete in it or not.    But why?
"people with damaged gut flora often have particular groups of pathogenic bacteria growing in their gut, including iron-loving bacteria (Actinomyces spp., Mycobacterium spp., pathogenic strains of E.Coli, Corynebacterium spp. an...d many others). These bacteria consume whatever iron the the diet provides, leaving that person deficient in iron. Unfortunately, supplementing iron only makes these bacteria grow stronger and does not remedy anaemia. To treat anaemia, the person requires all the nutrients we have mentioned, many of which healthy gut flora supply"  
I found this reference recently, while trying to read more about some information I ran across a few months ago that would explain his anemia more....have found this connection interesting.
I've also since learned that beneficial bacteria actually synthesize/produce B vitamins (which helps the body with iron).  

He has continued blood in his stools, from what we are told is from a fissure (superficial, bright red), his diet is double his iron needs for his age but from plant source, his diet is low in B vitamins, and Vit.C, he has dysbiosis, and I am now really thinking the above reasoning (gut flora) is behind this anemia.    We see in his blood work data from Dr.Jyonouchi that his gut dysbiosis is behind/at the root of his complexity of responses.   

Stool samples are sent, probiotics are on board (trying to find the right "fit"), B vitamins are ordered and will be "trialed".....I continue to fight this fight for him.  But I'm not working fast enough....

Bringing him in last week to get an IV placed for the iron to be administered was rough, emotionally and physically exhausting.    He is so little, and he goes through so much.....I just can't seem to research enough, there are not enough hours in the day to get far enough ahead of his condition to know what next step to take.   Someday, the doctors will know more about FPIES, someday treatment protocols will begin sooner and infants and toddlers do not need to suffer these co-factoring illnesses on top of what FPIES already is.

1 comment:

  1. Joy, so sorry to hear that you are going through this, both my boys have been anemic at one point as well. We are actually going for some metabolic testing next month. We aren't doing any food trials either for now. Things are kind of at a stand still for us right now. I'll keep you in my prayers.