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, April 22, 2012


Little Man has been drinking the Alimentum RTF formula, little amounts mixed in to his hemp milk bottles!!    It had been too many days since we've been able to use his tube (and not sure when we'll be able to because he is still guarding it in pain/sensitive and the granulation tissue they just removed is already back!) 

Last Thursday afternoon, his daddy thought we may as well at least try to mix it into his bottle so we put a 1/2oz. in his 5oz. bottle and he drank it without noticing one bit!!!   We thought, could it really be??   

Well, with the recent ingredient change in the Living Harvest Tempt Hemp milk to add sunflower lecithin and him having reactions to this, I have started to make the hemp milk from scratch- a company called Manitoba Harvest (guess we need to move to Canada since half his food supply is from Canada!) makes a product called "Hemp Hearts"- they shell the hemp seeds and package them for sale- hemp is used to make milk,or flour, or serve on salads and etc.   They have a "nutty" flavor - mild nutty....we've had to mix this homemade milk into what we have left of the Tempt non-sunflower milk to get him used to the more nutty flavor (which he has been doing great with)   Well, it looks like having that nutty flavor masks the Alimentum formula flavor/smell MUCH better then when we were trying to mix it into the Living Harvest prepared hemp milk during the trial.   I can't even smell it once we've added it to the bottle!   

We added 1/2oz. a few times on Thursday evening and then through the night too, we upped it to 1oz. in a few bottles on Friday and by Saturday I had added an 1-1.5oz. to every bottle!   Sunday, he even took a few with 2oz. in it!!  He got 13oz. of Alimentum yesterday and we can already see the difference in his energy levels (his Vit.C levels have been low again, thus causing his iron levels to dip dangerously low again and so between that and his tube giving him trouble- he hasn't been too active.    Yesterday, we couldn't slow him down!   

Something is better than nothing, even though it's not enough for all his nutrient needs yet (of what is missing from the hemp milk formula for his age) and we aren't sure how much he will let us add before he starts noticing (we're going up slowly because we don't want him to mistrust his bottles).    

We are so excited about it and yet it is bittersweet......I knew we could get him to drink it mixed in eventually... it's a little sad having gone through what we have and what he has endured for these tubes (NG and now G) when he's now drinking it....although not nearly enough for all his nutrient needs without a better menu; and that is what we knew we would battle (drinking adequate amounts) but with his tube giving him SO much trouble this week and now it looks like there may be something brewing - infection or abscess or something because the granulation tissue came back already, the site is still too painful for us to touch at all (or he is simply so averse to it from all the manipulation and negative experiences so far), and on Saturday I noticed some green drainage oozing from it so all of this will need to get checked out and the NP on Thursday said he will need to be sedated for some tests to see what is going on with this tube not healing well.   So, our excitement is capped a bit but we are very excited about him drinking the Alimentum (and feeling better on it), and potatoes continuing to go well!!   


  1. I would like to propose that he is drinking the new hemp milk so well because it doesn't have any traces of corn in it. Allergic individuals have an uncanny way of detecting when their allergen is present in foods. I don't know how it works, but my daughter can detect corn in tiny traces from fifty paces.....I imagine if you were privy to the manufacturing and packaging process for your former hemp milk, you'd find there are traces of corn in it. It's almost impossible to find a packaged product that is "accidentally" corn-free. Corn that is used as a processing or packaging aid need not be listed on ingredient labels.

    You know there is no corn in the new hemp milk because you make it yourself. The key to this allergy is to start with the purest and least processed ingredients that you can find and use them to make food from scratch. Some of his foods listed on the sidebar have a high chance of being corntaminated during packaging. I have a post that describes some of the ways that corn sneaks into our food supply unlabeled:

    We've had to give up peaches unless they are in season because they discolor without citric acid and most citric acid is derived from corn or corntaminated during manufacturing. Safflower oil, sunflower oil, canola and soybean oils are usually extracted using hexane with citric acid used as a degummer. There is a high incidence of cross contamination of grain products.....try to only buy those that are not sharing equipment or buildings with corn products (we avoid Bob's Red Mill for that reason). Some maple syrups will use corn as a defoamer so be sure and check to find out what is used by your manufacturer. Finally, Hershey's cocoa is a very controversial product that only a few corn allergics on the avoiding corn forum can tolerate.

  2. Yes, we avoid BRM for sure now. I get a brand from a small farmer....although any grains take on a certain risk because of simple farming and USA being high corn producers.
    Peaches, yes- ONLY in season...I buy them in bulk and am freezing them pureed.
    Safflower oil...I suspect there to be an issue, I used to put it in his home made formula but took it out and saw a significant difference in his mood by the end of the day, so we have kept it out except what I use in baking.
    yes, we are sticking to the maple syrup brand he seems to be doing ok on- not all are created equal.
    I suspect there may be an issue with the Hershey's cocoa but not enough to fully pull it yet...just don't let him have it often.