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, June 7, 2012


Little man has been hovering over his spiral for a few weeks now and helping him on our own has been just out of our grasp- right at our fingertips but not enough for us to get a good hold on it.  

This past weekend, he was really showing signs that his anemia was back and his Gtube was really hurting him.   So, by Sunday we decided we needed to call in right away Monday morning and get him evaluated further- for both anemia and Gtube issues (not that they are directly related). 

We call and leave messages with the GI and try to get in to see if his Pediatrician on Monday.  There are no appointments available but he can see him on Wednesday morning and in the meantime, the GI ordered for him to have an Gtube study (barium contrast upper GI) and some lab work to assess his anemia.    So, Tuesday afternoon was spent at these appointments.  

We got some of the results that evening, not good.....Hemoglobin (normal is above 11) is back down to 8.   Not good (down from 12 a few months ago).   It explains a lot though, and was what I expected - as he has been tired and had disturbed sleep and now lately, his lips are the color of his cheeks, which is not good because his cheeks are not rosy.   

We go to the Pediatrician appointment on Wednesday morning and he assesses that yes, his skin/lips/etc are  pale but his heart rate is good and his activity level right then in the office was good.   So we decided that at this time, it was worth trying to see if the ProViMin would  help him catch up and replenish his stores.  We scheduled a follow up lab check for 2weeks and said we'd be in touch.  The other good thing about his appointment was that his weight is UP!  For the first time in months, his weight is UP!   Alimentum RTF formula did nothing for his weight and just a week on ProViMin and he's gained a pound a half! He is now 31#8oz.    We all agree that we don't want to see him HAVE to get another blood transfusion and would prefer to avoid IV iron infusions as well.   IV iron is infused with a sugar - dextrin....which comes from corn.  It doesn't go through his gut but his body still reacts to it- so we would rather avoid it....if we can.   

Later that afternoon, the rest of his labs came back- another lab they checked was his Ferritin, which is the iron stores in his blood- we needed to find out if his hemoglobin was dropping because of blood in his stool/losses alone or if his stores were also affected because the last time they were checked, they were already low.   Now, they are very,very low.   We are going to have to intervene and not wait to see if the ProViMin will restore his stores quickly enough.....realizing that his iron stores are so low, we know we will need to do something more aggressive to help him.  

His GI called this morning and confirmed those are her thoughts and recommendations, so now we are waiting for her to connect with the Pediatrician and come up with a new plan (his plan yesterday before the Ferritin levels were back were to do a wait-and-see approach (to which we agreed to).   But now realizing that his iron stores are so low, we know we will need to do something more aggressive to help him.  

The GI doctors also mentioned that she is really upset that he is bottoming out again, that she doesn't understand why he didn't tolerate the Alimentum RTF- or why he "seemed" to tolerate it for a few weeks and then didn't.   I clarified to her that I don't feel he ever did tolerate it, we just wanted him to so badly so we kept pushing it -- and that he CAN be stable if we didn't have to keep pushing foods that his body is not ready to accept- full blown FPIES or not, he goes backwards faster if we push him when he shows us signs that he isn't tolerating something- if we push him just to get to vomit because that is the only evidenced based signs.  IF the ProViMin continues to work out, I don't want to push him - I want to just take things slowly because he should be getting all he needs in the ProViMin and if he needs gut rest or time to heal or a food that is not tolerated taken out of his diet- then we need to listen to his body.  Without a source of complete nutrition, we have not had that luxury.

The GI starts talking about long term hospital admissions, extensive tests and consults at other facilities with other more FPIES familiar GI doctors....she admits she is frustrated and losing her patience and needs to just know if his gut is use-able or not, or if he needs long term TPN to thrive....   

These thoughts overwhelm me and we ask all prayers that Sam will tolerate the IV iron infusion and that his body will have the catch up it needs and he can thrive on the ProViMin, and we can take things slower.   

Oh, and the tube?  Both the Ped and GI do not want to discuss taking it out yet....even though surgery has said that is their recommendation.   One good thing is that it has stopped oozing and draining and we noticed a significant correlation with the Alimentum feeds and intolerance to the increase of the gtube drainage.   

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