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."

Friday, April 27, 2012


We've been doing well the past few days.  CheeCha puffs are going great, and bites of baked potato are without any symptoms at all!!!!!!
Now with getting a taste for new things, he has started asking for more things!   This little boy has few foods and few words but he said "chocolate please mommy, yes?"  and "ooooohhhhh, chocolate, yes?" when he climbs up in the cupboard to get it.    

What chocolate???   Well, at Easter time is when he first uttered the words chocolate- we didn't even have any candy in the house yet so I am not sure where he got the idea from but he looked up at me and said "chocolate please mommy, yes?" and this smile that would melt an iceberg....Now, again back to the approach we are at right now with Little Man, that if we know something isn't UNsafe- even if we weren't planning on trailing it....we want him to be able to try it- even if it throws a current trial for a loop, or a pause.  FPIES challenges just never seem to end.   

We don't want him to have negative associations with food and we certainly don't want to be keeping potentially safe foods from him- even if it is "just' chocolate!   So, to the store(s) I find Enjoy Life chocolate chips, which I knew I had found in one of the stores here in town at one time.    

Enjoy Life is a brand that is allergen friendly and many corn allergic people can tolerate them, although some can not- so we are not sure if they are safe or not but they are the closest we can come to safe since other chips have many more allergens in them.    Enjoy life has few ingredients and they make a mini-chip.   Well, he was eating a lot of them and his temper was VERY short (a red flag for us for his calm natured little boy), other symptoms were popping up too but he was BEGGING for the chips almost all day long for 2days before his daddy just threw them away- his symptoms were building and his interest was not lessening so we just told him they were 'gone'.    Well, he proceeded to take the chair and climb up to the cupboard to check for himself, which is where he found the Hershey's Cocoa!   "oooohhhhh, chocolate, yes?".   I don't know if it is the chocolate or the palm oil/sugar in the Enjoy Life Chocolate chips, or a corn-tamination or what.   So, I figured we've eventually have to finish the trial with the Hershey's Cocoa (safe for corn allergic)- maybe by baking with it or something but he wants this cocoa powder today so, I thought I'd let him have a lick of the cocoa and he'd realize it doesn't taste good and that would be the end of it.    NO!!  He LOVES it!?! What??  I did talk him into mixing it into his hemp milk formula- so it's sorta like a pudding; but he prefers it DRY!   So, over the past few days he's had bites/licks of this Hershey Cocoa.    I can't say it is going great but it isn't causing any building FPIES symptoms that I would normally be able to see by now,  or the same symptoms as the Enjoy Life chocolate chips were.  

That said, I've hidden the cocoa anyway and am going to have to just put it on the shelf for a bit because there are too many things in the picture right now, and I don't want it muddy over chocolate...since there are some symptoms (that are likely from the chocolate itself, not allergic)- he has some disturbed sleep and he had an explosive diaper this morning.    Now, I can't say it is all from the cocoa because 2 nights ago, he spilled his daddy's cup FULL of Mt.Dew and it splashed EVERWHERE (it was all over him, and some got on his CheeCha puffs -- although I didn't realize that until later so he may have gotten some Mt.Dew exposure (High fructose CORN syrup)....his daddy usually drinks diet (which still has corn but not HFCS) but I had bought him a case of the regular for a treat for his birthday.  Well, I can't be sure little man didn't get some exposure - from being on his skin or splashed on to some CheeCha puffs he ate, or....I don't know.  He slid downhill these past 2 days, his energy was down, his mood was sour, he had this weird rash around his belly button (where the soda splashed??),....and then there is the diapers and the disturbed sleep (from cocoa or corn-tamination?) OR, is his tube bothering him?   

Muddy picture, fast.   Back up....let's figure this out.   He is increasing amounts of Alimentum in his hemp milk formula that he is drinking- he's up to ~15+/day now!  (1-2oz. per bottle)!!   Can't be sure that isn't coming into play here also because we observed building issues with increased amounts of Ali when he was on the NG tube but we thought that was due to the tube and the lubricant they used to place it but we still haven't ruled out Alimentum intolerance (worried it is too high in sugars for him, or maybe the source of fats are a problem for him).  Or, is this all related to tube pain?  Possibly.  We need to rule things out one by one.  Corn was a potential exposure- symptoms flared up, we should see them flare back down, back to a baseline...he obviously hasn't continued to receive Mt.Dew splashes.   Cocoa- take it out and see if things improve.   They were improving already this morning, so I am still not sure what to think. The other factor -  the tube or a abscess or infection brewing, is this belly button rash related to tube or some random eczema rash?  A call to the surgeon's nurse and it is decided he needs to be seen....

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