Hemp Milk

Hemp milk:

You will need:  

5-6cups of spring water

1 cup Hemp hearts (divided into 2, 1/2cup servings)

Sturdy/safe container to soak seeds in
Strong blender, such as a Vitamix 

Refrigerator and time

To make milk: 

1. Put 5-6cups of spring water in a safe container (sometimes I use the large gallon jar pictured here, other times I simply soak in my vitamix). 

2. Add 1/2 cup of shelled hemp seeds/hemp hearts (I use Manitoba Harvest and typically just buy right from their site, because it is my son's main source of nutrition for so long, we buy it by the 5lb tub!)

3. Soak, and refrigerate for minimum 3hrs (I have experimented with the soaking time and do not know if there is anything scientific to it but have found 12hrs to be best soaking time for my needs).   

4. Mix with high powered blender (such as a Vitamix) for 2-4minutes on high (start on low, work up to high)  

5. Add 1/2cup of shelled hemp seeds/ hemp hearts and refrigerate and repeat steps 2-4.

6. Pour and serve. 

Total time: 24hrs. 

Total volume: 5-6cups. 

Tips: I pour it into gallon jugs for pouring (typically the jug I got the spring water out of).  I let the sediment settle, and pour off only the creamiest white parts- the sediment at the bottom are the parts of the hearts that don't quite get mixed well -- although it is very, very fine (because it will go through a bottle nipple), I mainly do this to decrease the fiber content for my young son that has an intestinal allergy, with frequent intestinal inflammation- he needs the nutrition of hemp but often the added fiber can slow down the healing from an inflammatory reactions he may have.  Disclaimer: nothing scientific about this, just what I have done to meet my son's needs.  I have done various things to make this more calorically dense, such as adding maple syrup or oils; but this recipe is simply how to make the hemp milk. 

Hemp Nutrition

Hemp is the base to Little Man's diet.  The nutrition in it was questioned from the beginning but I had researched it and found that it had even better qualities than fortified rice milk (which we already knew he couldn't have anyway).  No soy milk either.  And oat milk wasn't worth the risk, neither was goats milk, at the time.   Hemp it was!  I shared our excitement, and his love for it here: Hemp milk. 

I began making a formula out of it this time last year, we had some bumps in the road, such as:  we couldn't mix it with Neocate and find a threshold- we would need to move away from any and all traces of corn for true healing.   We tried tapioca starch for added carbohydrate calories, and failed- miserably.   This fail had FPIES symptoms but likely was also related to his dissacharide deficiency.  That brought us to arrowroot starch, safflower oil added to the hemp milk -- which we saw great improvements on.  But a blood draw revealed that it wasn't helping his pre-albumin levels (protein stores) improve (past the losses we saw with Neocate, likely from malabsorption due to inflammation brought on by the corn).   We found Hemp protein powder, and began to add it in in August of last year and his protein stores improved nicely.   Hemp provides a great nutritional profile for protein, nutrients and calories.   It is a good source of iron, but a plant source- which is not as readily absorbed by the body as a meat source.  With anemia in our cycle again (still), I have been looking again for more information on hemp nutrition; although I am not finding specific information to the bio-availability of iron, I am reminded of how nutritious, and functional, hemp is.   

Taken from a company that markets Hemp, Nutiva:
"The hemp seed is the richest known source of polyunsaturated fats, containing a perfect 3:1 ratio of Omega-6 linolenic Acid and Omega-3 linolenic acid. In fact, the hemp seed balance of Omega 3 to 6 fats is the perfect proportions for human dietary needs, making hemp an ideal addition to a healthy diet and lifestyle.


The Omega fats, or “essential” fats in hemp seeds are crucial to human health and they are called essential because they can only be obtained through our diet. Without essential fats, the body is at an increased risk of developing deficiencies that can cause slow wound healing, hair loss, skin conditions, and a greater risk of infection from the common cold and flu. Imbalance of Omega fatty acids, including too many Omega-6′s, common in trans fats containing foods like fast food, animal products and processed junk food can lead to diseases including heart disease, hypertension, stroke, arthritis and diabetes.

The hemp seed is one of the best sources of nutritious plant protein. Hemp is also loaded with all 20 amino acids (including the 9 essential). Plant protein, such as hemp, is vital for vegans and vegetarians, and is also preferred by many world class athletes for its dense nutrition. The protein found in hemp hearts is very digestible, with no known allergies, which makes it an excellent choice for sensitive diets.

Hemp also contains phytonutrients, which may boost immunity, purify the skin, and strengthen connective tissue. Hemp seeds may help with the reduction of cholesterol and blood pressure, reduce inflammation, increase healing time, improve circulation, and boost overall immune function and performance"

And, the Nutrition facts label of the hemp protein powder Little Man consumes.

What a superfood! 

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. 

"Bowtou" Translation: Bottle

Little man ASKS for his bottle.   Music to my ears.  Not only that he can say a new word, but more that he is hungry- and asking to eat!   And his asking, his interest and acceptance in his formula, increases daily.   His formula, I had previously been making to 18calories/oz. with arrowroot, safflower oil, hemp protein powder and hemp milk.  But the arrowroot can make it thicker, if I didn't cook it right- it could be pudding!  I cook it, low heat for long periods.....the heat thickens it but the longer heat starts to break it down.  But it is still a thicker, almost a milk-shake or protein shake consistency....through a bottle nipple.  He's not ready to give up his bottle yet, and I'm not even going to try.   Yes, he is 18 (almost 19mo) but it is his sole source of nutrition, it is a stable thing in his unstable world.  I'm not touching it.   After 3, almost 4 weeks, on plain hemp milk (while on TPN), and no other foods or practice with eating and swallowing- he has lost some of his swallowing techniques.  He now gags on his peaches (unless in mesh feeder), he gags on his bottle if I put too much of the arrowroot starch in it.    So, I've made it with less arrowroot for now; and we've been working up his acceptance of it again.   But with less arrowroot, it is around 15calories/oz.  

The first couple of days home from the hospital, he took only ~30oz., but the past 3 days he has increased to ~50oz!   50-60oz./day is the volume he needs to drink....at 18cal/oz. But at 15calories/oz- he isn't meeting his needs.   But he won't drink it thicker, will gag on it and distrust it and then drink less.   A rock and a hard place, a balancing act....again.  

So, we continue to be patient.   A degree in Patience is essential with this diagnosis.    We patiently await his body's adjustment while continuing to work it up slowly and coax him more, to drink more.  To meet his caloric needs.   To not lose the weight we just put on...3 1/2# of weight gained in 4weeks!  Weight checks reveal we are slowly losing this week.   We anticipated some loss with the IV nutrition stopping, from the decrease in IV fluids.   We are hoping that is all it is.

It has been no small feat to get him to eat adequate amounts of his formula.   He likes it, but he wasn't used to eating so much, so often- it had been a few weeks.   His tummy was still so full and bloated from the TPN, he just wasn't as interested.   My main goal has been to get him to eat.  If it's time for him to eat (every 2hrs), I am stopping whatever it is I'm doing to sit down with him, cuddle, turn on his favorite show, coax and try, try again....whatever it takes to get him to take more and more.   Each day we have made progress.  It may not be enough progress but it is progress.   Practicing my degree in Patience. 

Increase formula volume, increase caloric value of formula, maintain weight.   Do all this, while trialing a multivitamin.    If he is unable to take in enough calories and maintain weight, accept the texture of his fuller caloric formula and begin gaining weight again...and soon...we may have to consider a G-tube for him. 

A G-tube brings mixed feelings for me.   A G-tube means increased nutrition, through reactions (full blown or "build" ones where his appetite decreases), although while they are having a reaction- their guts are not accepting food- no matter what form given, the inflammation is acute and severe.  A G-tube means adequate hydration through a reaction (a minor one, a full-blown one would still need IV fluids as any fluids taken in would be expelled out). A G-tube would assure adequate caloric intakes on days when he is disinterested in his bottles, or slowing down enough to eat enough.  A G-tube would take some of those kind of stresses away.    But a G-tube would also bring on it's own stress.  Surgery is a main concern (with yet another hospitalization and we haven't even fully caught our breath from the last one!), but get through that and then there is site care and preventing infections (externally and internal GI infections-with an added portal for germs to enter the risk is high).   Another concern is that feeding him his calories via the tube and he will lose even more interest in eating and we would just have to give him more and more via the tube and he would have less and less chances for practice and increased risk for oral aversions.  A G-tube is an answer, is it the right answer for Little Man?   Would it be better for him long term?  Would it give us more set backs?   Would it be worth the extra stresses?  Or can Little Man overcome the obstacles again?   We let him guide us through this....

Biopsy Results!

This week we found out the biopsy results, and confirmation of true gut healing for Little Man!!  We are so excited at this prospect of a "reset" button on the last many months of trying to play catch up since corn fail (and before).

Inflammation healed, villous atrophy gone.  Christmas wish (and many months of prayers), answered.

We now have a head start, a real chance at passing foods, at expanding his tiny menu -- or just staying still with the formula that has sustained him since stopping the Neocate.   The only catch is, he needs some vitamins to fill in what his hemp milk formula is missing.   He needs a multivitamin/mineral supplement.  Having this will complete his daily needs -- to assure us his nutrition during breaks, during trials, during reactions, for proper growth and development.    Taking away the Neocate and starting him on hemp milk formula stopped the daily assault on his gut, and his daily pain and random vomiting but the damage of corn had been done, other food trials did and left their "damage" and then there is the villous atrophy (from soy?, we still are not sure).   But, taking away the Neocate also took away our complete vitamins/minerals.   This was supposed to be filled in my a tiny menu- but we couldn't get to a tiny menu.    So, next steps....to trial a vitamin.   My searching has continued and thanks to some great dietitians- we have found one that is the "lesser of all evils"...apparently a 100% corn and corn derivative free vitamin does not exist.   We found one that is worth trialing....to give him that complete component he needs in his diet.  

But, trialing a vitamin with corn derivatives does not come without it's concerns.  We are reminded of how quickly, and how severely he reacted to a Vit.C derived from tapioca (a previous fail from bloody dumping diarrhea resulting in acidosis), such a minute amount hit his system so hard and we landed in the hospital being evaluated for a blood transfusion.   Not a lesson easily forgotten.....

But he needs the vitamin....

Our GI has assured us that we will do a 2 week trial of the vitamin (as we know trace amounts will potentially bring on a myriad of symptoms and not a full "reaction" of violent vomiting and diarrhea, lethargy.  The plan is to push through the symptoms, noting them as we go and if they do not subside, build or continue to be worrisome- she will re scope him to be sure we haven't lost his baseline of NO inflammation and NO villous atrophy before we continue on the vitamin or onto food trials.    The vitamin was ordered yesterday, will arrive at the end of the week, we will start it Monday. 

But in the meantime.....we are weaning off TPN and we plan to go home from the hospital (after 25days) tomorrow!!  We are SO ready to have him home again, to enjoy his baseline, to re-establish a "home" routine.  

Little Man has been weaning off his TPN while reintroducing his hemp milk formula - which he has been taking really well.  In fact, he has started to ask for his "bat-ba", he also asks for his "night" (translation blanket) when he wants his bottle, or a nap.   He has learned other words such as chair, door, car, bye, thank you.  He has added knowing where his eyes, ears, mouth, tougne, nose, feet, and belly are.   He adapted to hospital life and we made the best of it, taking any moments as teaching moments and play time.  His brothers visited when possible.  We will all be very glad to have him home....we were able to take him home for 4hrs on Christmas Eve and on Saturday and Sunday evening as well - he LOVED every second of it! 

We are ready to close the door on 2010, and greet 2011 with optimism and health.    May the New Year bring us (all FPIES families) a renewed FPIES path!

Failure to Thrive...

We've had failure to grow and gain weight but we had avoided the "big" FTT....these words were uttered yesterday by the Pediatric consultant.   Another mom's words echo through me when I hear FTT: "failure to thrive may as well being saying failure to be a mom".   I don't know if it is because I am in dietetics field or if all mom's feel this hit as hard but words like "malnourishment, undernourished, failure to thrive", etc mean more than just diagnosis language to me.   To me, they make me feel like I am being blamed for his nutrition...when in all actuality- I think he's done well for everything he has gone through.   His iron is low, his weights are low but steady.  All his other labs are doing good, he isn't as "sick" as one would think reading his chart.  That isn't to say that he won't be if his current issues aren't treated.  Villous atrophy and gut inflammation will lead to malabsorption of nutrients - there malabsorption is a better term....at least it says it for what it is...his illness is doing this to his body- we are not.   We are in fact, doing the opposite- going to great lengths to keep him from becoming more ill, suffering more ill effects from his allergy. 

His formula kept him in daily pain and disturbances to his system and random vomiting every few days.  I made him a formula that took this daily pain (that had been going on for most of his life) away, but with that I also took away assurances of some micro nutrients.  The formula is adequate in calories, protein, fats and carbohydrates as well as many other nutrients; but it lacks about a dozen or so of the many micro nutrients we need in a complete diet (although I challenge you to find a typical 18mo.old who meets all these micro nutrients needs daily, but I digress- Little Man isn't typical).  Adding fruits and veggies, a meat and a grain- building a tiny menu, would get him these missing micro nutrients....but he has not tolerated food introductions.  Giving him a vitamin may fill in these gaps, but he can not tolerate the additives in most (all?) vitamins- giving him foods and vitamins that his body rejects puts the very real possibility of making him more sick; and thus less able to absorb nutrients from even the formula he gets daily.  The formula that is adequate in calories, and yet he doesn't gain great strides of weight (gut inflammation prevents this).  The formula that is adequate in iron and yet his iron has only continued to fall (villous atrophy contributed to this- recently and likely a year ago as well, initially causing the low iron that set him behind from the beginning stages).  

Today, little man received another dose of IV iron infusion.  This will continue 2x/week for the next few weeks.  He continues on his plain hemp milk, and his TPN is built up with all ingredients to nourish his body and repair his small intestinal villi; so we will continue with this recipe for the next 2weeks and then the plans are to do another endoscopy to check on his villi; and proceed from there depending on the findings.  The hope is that the inflammation will be healed and the villi will be rebuilt so that he can go back to his Hemp milk formula, peaches and millet and re-begin food trials to finding that tiny menu.   

Little man is thriving: he plays wildly (a PICC line doesn't slow him down- it only speeds up his parents following behind him tirelessly so his lines don't get tangled, caught or pulled).   He builds blocks, puts together puzzles, processes language and follows directions, makes friends, gives "high-5's" and kisses, and learns more words everyday.  This week he has added "ice", "car", "love you", "this" to his vocabulary.   For 18mo., I still wonder if he isn't a little behind for language- but he doesn't get as much oral motor development so, again- all things considered- he is doing really well for what he has had to overcome.

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!

more Elemental Formula?

Little man had Neocate Advance (300ml) added to his Hemp milk formula. I was so hopeful that the dried glucose syrup in Neocate Advance would be better tolerated than the corn syrup solids in Neocate Infant/Jr/One+.

He was clearly a happier boy most of the day yesterday, his blood sugar was more stable and he was able to play without hunger feelings. He had some small initial signs that I was hoping would not connect/add up.

The hemp formula I am building him is low in carbohydrates, only supplying half his daily needs, as I am nervous about putting too much in (because of his carbohydrate intolerance) for a few reasons:

1. it makes it thick and then will he refuse to drink it? and

2. will he get diarrhea like he did from tapioca starch and make him sick landing in the hospital again; and then

3. I'm doing this on my own. The doctors here have not recommended it and they can't recommend moving away from an elemental formula. So, I have been 'testing' it to see if it will work for him- I calculate out every recipe, every ounce, to be sure he is getting adequate nutrition.

I am not taking chances with his health, I am looking for ways to improve it. Our Allergist knows we need to move away from the Neocate and has advised such. We have struggled with this because of Little Man's compounind carbohydrate intolerance. And, if something were to happen that he could not tolerate his hemp milk formula -- should he lose weight or get so sick again like he did on first attempts to build it (with tapioca starch that caused osmotic diarrhea and a hospital admission), the doctors surely will not help us move further on with next steps but will only want us to keep going backwards with the Neocate that we are so trying to move away from.



Why move away from an elemental formula that we know helps children thrive?

Here is one reason:




And an hour later....



Pick up your crying child you say?....



This went on for 3hrs this morning until I finally gave him some of his compounded ibuprofen (which we are to try and stay away from because of his "ulcer" in his stomach) but it is the only thing that helps with this kind of pain -- to at least give him a small break from the pain. Another sign of his agitation (besides that it does little comfort for him for me to pick him up except have a screaming child closer to my ear) is that he clings to things- he has to have things in both hands and will NOT let go...something to try and give himself comfort. This morning it was this piece of paper, and the cup...



If we ignore this, it gets worse- it moves to around the clock pain, difficult stools, mucous and blood in stools, screaming and sleepless nights, until he begins to refuse to eat (connects that this is what is causing the pain), and then if he starts throwing up or diarrhea on top of all of this....he gets so sick. This is the cycle we keep having with him and have been trying to move away from. We have been able to move away from it, with the hemp milk formula. When we see this agitation become a mere memory, we know we are moving in the right direction. When we see this agitation come back in full force with reintroduction of just 300ml of Neocate, we know taking it out altogether is the ONLY direction.

Each step I learn more....

I learned that he clearly needs more carbohydrate in his formula, and I learned that he clearly can not tolerate even trace amounts of the corn (glucose syrup or corn syrup solids).

The Hemp milk formula needs to be tweaked, with better carbohydrate ratio in his current formula, more vitamins to make it optimal and moving towards a tiny menu. This is the direction we are hoping the Peds GI doctor here can help us with tomorrow.

Tapioca

The next step in building a formula for our little man is adding a carbohydrate source. We will then get a good amino acid protein profile added and FINALLY move away from Neocate and it's trace corn proteins.

Those trace proteins may be causing a new problem, for the first time tonight- his diaper had blood in it. :( Many experience blood in stools with allergic reactions, we saw it at 8weeks with our oldest son when he was reacting to milk proteins. It is called allergic colitis, it isn't necessarily a component of FPIES but many kids have it also. We have not, until now.

Tonight, I'm stumped- why now? Where is it coming from and should we be worried? How worried should we be? Little man has hyperplasia in his colon and the GI that performed his scope said it is common to see mucous and blood from the sloughing off of this from food intolerances. We felt lucky that despite seeing this in his gut, little man had not experienced the colitis.

And today was going well-- we are making little man a formula he can thrive on!!! We have an awesome dietitian who will help assure that he gets all his micro and macro nutrients, calories, protein, fats, carbohydrates. I spoke with our allergist's RN today and got good compliments on how we are handling things and moving forward.

Thankfully little man isn't having any GI distress -- so I am not inclined to think this is leading to an FPIES trigger reaction but I'm certainly not encouraged by this new appearance in his evening diaper change.

We press on....more on the FPIES rollar coaster ride!