If he doesn't eat formula, what does he eat?

I get this question a lot when I simply say, he is allergic to food....and can't even have formula.   It usually takes a minute for this to set in, I can see the wheels turning- trying to process what a baby on no foods could survive on if not breast milk or formula.  I think it is harder to process because they are looking right at him, he doesn't look like he's starving? is what they probably want to say!   I don't let them suffer for long, I continue on....he is on a hemp milk formula I make for him.    It is not complete nutrition but he is not allergic to it, he has grown and gained weight on it and thriving developmentally.   And...he loves it! 

I began the process of making my own formula for him when I discovered he was sensitive enough to react to the elemental formula's, that by giving up nursing to put him on an elemental formula- I had made him more sick.....an FPIES moms worst nightmare.   It is rare, but it can - and does- happen.  Little man is not the only one, and with the growing number of people discovering that corn is at the root of their illness, it is my hope that one day there will be a corn-free elemental formula.  But as of today, there is not.   So, I must make one...it was the only way to take away his daily pain, his random vomiting sessions, his terrible diapers, his colic and gas-disturbed sleep.   And not only that but to add in increased intakes, and healing.   Hemp milk has provided this for my Little Man.   

It has taken months of tweaking, and while the formula is now at ~22cal/oz; and meets all his macro nutrient needs (macro nutrients are the bulk of our diet- calories in the form of carbohydrates, proteins and fats); it is still lacking in some micro nutrients- mainly B vitamins since Hemp is a plant protein, but also a few others (micro nutrients are vitamins and minerals). When starting the formula, our goals were to just make sure it was adequate in macro nutrients and that it is.  

The ingredients of this formula to meet those macro nutrients needs?  
1. Hemp milk is the base with Hemp high protein powder for added protein.  Hemp is a super food.  For an article on the benefits of hemp: Hemp Seed.  
2. Safflower oil provides a low-allergenic fat source.
3. Arrowroot is a well-tolerated starch.  Although well tolerated, little man does not tolerate it in the starch form,  I have to make it into a syrup.

His formula is adequate but not optimial.   Micronutrients would make it optimal.  Where do we get the micronutrients from?   His diet....but we have been unable to give him the tiny menu to do this. 

Very Merry Muffins!

Thanks to Baby B for the great recipe: babybeesfpiestestkitchen.  I have been able to make a muffin from Little Man's safe ingredients: millet, safflower oil, arrowroot, and peaches, add in baking soda and we have VERY Merry Muffins!  The first batch, was the other day- I made according to the recipe, with only the changes in ingredients.   The batch I made today, I made a few additional modifications.  I took the recipe down to 1/3 so that I would get just 12 mini-muffins so he will have fresh ones every few days.  I could also simply freeze some and thaw as needed but this recipe is so super easy, and he has so few foods right now- I'm ok with just making a smaller batch and making it every few days. 

I was making peach dots....

Peaches were a pass a few months ago....just in time for them to be leaving the stores as their season closed out!!!  So, I had some in the freezer (cooked, purred and portioned out in ice cube trays and piped out in "dots").   Little Man used to look forward to his "dots"; but we have run out.  The only way he will eat the ice cube trays is in a mesh feeder but he has lost some interest in that now too.   I found a baby food brand that does their peaches with no other additives. No citric acid, no ascorbic acid -- so no corn.   Plum Organics, ordered online and received the shipment this weekend.  Little Man squealed with delight when the box came in the door- as if he knew it was ALL for him!   I immediately let him open one of the pouches and play with it...he didn't like it.   I piped it out and froze it- hoping he would accept his familiar dots.  He was excited when he saw them but one taste brought on gagging.  I tried it a few more times, same results.   I think since I had to add water to cook and puree the peaches I had done, they weren't as strong tasting as this was and since he is not accustomed to strong tastes (his formula is bland) and 4 weeks of no new tastes; we're going to have to build back up to that one.   So, tonight- I thought I would cook the Plum Organics Peaches with some water and pipe them out for his "dots".  This made soup, so I had the idea to add my ever trusty Arrowroot (I heart Arrowroot!) and this worked very well.   As I was making this, I was mixing up his new batch of Merry Muffins and thought this peach blend might work well in the muffins- arrowroot will act as a binder, and thickener.  And having it cooked first might help.  Well, my experiment worked!  They are lighter and softer (taste and texture). 

I imagine I will continue to work with this base recipe- variations as we add in safe ingredients.  The BEST part of all is that he EATS it!!  ASKS for his snack, sits with his brothers and proudly eats his safe snack, sits by himself and eats his snack, licks up the crumbs....he has been eating at least 3 a day.  I calculated out the calories in the batch and then in each muffin and I have made him a 100calorie snack!   Each muffin is 100calories!! And he's licking it up to the crumbs!!   This gives me such hope for future food trials, for future recipes, for adding foods-- adding nutrients to his tiny menu that he will actually eat! 







Better Days....

Little Man is better today. The post yesterday is an illustration to help those that do not fully understand the depths that this FPIES beast takes a child. Sorry if it was too "graphic" but this has been our life for the better part of the past year. Crying doesn't begin to describe his level of agitation. I have many times wished I had grabbed the video camera to record small snippets of it -- to help give a visual to what we mean when we say he is in pain. He cries less when he is teething, or has fallen down and is bleeding, or gets a blood draw or IV..... Even his brothers recognize this cry as high pain and agitation. It breaks their hearts to. We owe it to them and to Little Man to keep this from happening.

Hemp milk formula made with Safflower oil and Arrowroot starch takes all of this away. There is no agitation, no screaming for hours, no crying in pain, no waking up at night, no difficult bowel movements -- just playing and exploring like a "normal" 14mo. old little boy.

And as of last evening, I have successfully increased the arrowroot starch in his formula, so now he will get his daily carbohydrate needs!! I have had to really play around with how much hemp milk I cook with the arrowroot starch and how long I cook it, etc to get the consistency right (not too thick, not separated out) and I am hoping I got it closer to what he needs! He is drinking it well since last night! So, so far it isn't too thick! The one kink I still need to work out is the volume, his kidneys are showing a little stress from having to put out so much volume--he averages 65oz./day! But if we could build his tiny menu, that would help alot with that. And now that I am feeling a little more supported (by his almost 2# weight gain ON my formula, his labs holding and by letting the doctors know that this is what I am doing) - I am feeling braver about experimenting with his formula to get it right. Will be good to see where his weights and labs go in a week on this recipe now!