Bottle please, mommy

He ASKED for a bottle! Actually 3 times yesterday!  What music to my ears!  He asked for a bottle! (this is normal for him except in the last few weeks).   So, maybe we are turning a corner and he is healing or whatever it was that was the catalyst for this recent spiral is moving out of the picture?...

The other thing I changed was that I increased the hemp in his formula "recipe"- taking the recipe from the 18cal/oz to 21cal/oz (at least) - and he is feeling SO much better!  I did have to change the amount of ProViMin that goes in to the recipe (and haven't calculated out that yet), but this seems to be the break he needed in this spiral....he needs the calories more than the nutrients (so his body tells us) - and I had it the other way around.   The 'recipe" is too thick with either too much hemp or too much ProViMin (powder).   I will have to do some calculations over the next few days to see where he is now at with nutrients but I am just so relieved he is coming out of this "funk".   He has a few spots in the day where he is edgy but nothing compared to how he has been over the past 2-3 weeks.  Another situation where you kid yourself on how bad it is, just finding ways to get through it, until you're over the hump and looking back realize how hard it was - which means how "off" he was.   

I still am unsure what the catalyst was- whether it was the heat and then not getting enough to eat or if it was the work in the basement (mud and taping,etc) and the subsequent corn exposure it gave him.   His allergy is a gut allergy and we avoid corn ingestion like the plague.  In fact, he hasn't had a corn ingestion reaction (full vomit) since a multivitamin in Jan. 2011.  However, he's had corn contamination symptoms, and he's had an inhaled corn reaction (vomit).  This concerns me that his corn allergy is worsening, or that he has more than FPIES going on (which we have suspected all along anyway) - not that other kids don't experience inhalant FPIES symptoms as well but it is more commonly heard of with EGID (eosinophlic gastrointestinal disorders) - which are very close in nature to FPIES.  In fact, I've often wondered if he doesn't have some form of an EGID that has gone undetected because of how difficult/specific it can be to diagnosis - especially when we keep his diet so tightly controlled.  I don't know but inhalant allergy symptoms sure do bring things to another level.  And I've been noticing a pattern of this in the past - days when hubby mows the lawn and little man wants to ride on the tractor- he inhales all those fumes (yep, ethanol = corn), times when I've used a different laundry detergent and it has a perfume smell, he gets very pale/sheet white on these days...the smell alone - with all the corn, is making him sick.   

I asked this on one of the corn free forum's I follow and was actually a little surprised by the answer- how many people had actual experiences with house remodeling....and ER visits because of how severe it set off their corn allergy (people on these forums have varied degrees and forms of corn allergy from your typical allergy of hives/wheezing/etc to GI distress to neurological, emotional/mental effects,etc).  I follow these groups because it is at least a starting point to helping me learn and keeping our son safer.  And I am so very grateful for them. 

The dietitian let me know today that she was low on her numbers for his calories/ounce in his formula recipe- wow, that is a relief!!  Although it is still only 20cal/oz, it is better than the 18 she had mistakenly calculated it at.  She thought something must have been off so she went back and recalculated it.   She has a program for calculating it but the Hemp seeds aren't in that program- so she has to add those in by hand - and she was doing a full analysis of EVERY.SINGLE.NUTRIENT.   I'm glad she double checked, it makes me feel a little less sad about how low he went for those days - either because of the heat or because he was feeling poorly from the potential corn-y exposures....or (and likely) a combination of both.   

Whatever it was, we seem to be over the hump - and I know the prayers that went up were pivotal with this.  God has been trying to teach me this....that the answers to my prayers don't always come from my whisper to His ear but instead from my whisper to the hands (and knees) of family and friends....showing us that we are never alone....no matter how isolated we feel when no one knows how to help when he is sick.  

We are blessed. 

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. 

Bittersweet

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!!   

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. 

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!

Hemp shake

Little Man's daddy made all the Mud Pies (aka, big brothers) milkshakes this evening. Since we introduced hemp seed cereal, and since he is feeling so much better these days with no tummy aches- little man is once again "asking" to eat. He gets quite agitated at meal times once again- and not even bringing him downstairs away from all the food will calm him down much anymore.

He wants what we have -- or at least something like it. Little man's daddy gets so creative with him and all the mud pies. Tonight, he could see Little man just needed something like his brothers. He got him a cup and a straw like everyone else -- only his didn't have milkshake in it, he had hempmilk. He was SO excited to be drinking through a straw, to have a drink like everyone else, he just giggled and said lots of "yumm,yumm,yummm's"! It wasn't anything new- just his hemp milk formula, cold, in a cup. It doesn't take much.

I have located a few different variety's of millet -- I have good feelings about this and am excited about the versatility of it. We may be doing (trialing) it this week. Stay tuned.

PS - yes, this is a grainy picture, and yes the date stamp is wrong....it's my old camera, which just happened to be in reach to capture a quick moment in time before it slipped away.....

The Calm in the Storm

Little Man and Mud pies (aka, big brothers) enjoyed running through the "river" created in our backyard from today's storms. The break in the storm was the perfect time to go splashing through the water! Whenever life gets a little too much, take cues from children. Little man has spent so much of his life in pain and discomfort, he doesn't know any different. This is his illness, this is his life right now. We work very hard to assure a high quality of life despite his chronic illness. Little man wastes no time, the second- the split second he is pain free- he is off and running. Exploring, learning, interacting with big brothers, finding new ways to make mommy and daddy laugh and say "good job" (as he claps his hands, so proud of himself for learning new things to share with us.

Little man is a happy boy these days, again. We will cling to this as his baseline. The only thing still hanging around is this carbohydrate intolerance. I can only get about half of his daily carbohydrate needs in his formula because of it. If you know of anyone who is lactose intolerant, this will help to understand what he has.....except his is with any -ose source (sucrose, fructose, maltose, lactose)...all the building blocks of carbohydrates=sugars. There is always going to be a variable in how much he can tolerate. Some lactose intolerant people just have to stay away from straight milk but can have cheese and ice cream, some can't go near either. Little man is somewhere in the middle- he can tolerate (and breakdown) a certain amount of carbohydrate but not too much at one time. We have realized we can not try and put any more in his formla, we need to try and add it to his diet. We are ready for food trials. We feel he is ready for food trials. Besides his hemp milk popsicles and hemp seed cereal and of course ice chips- Little man has not had any food to eat,and chew, and enjoy since the last week of Feb. He has not had anything but formula in almost 6mo!

Please pray this is the calm in his FPIES storm and that little man can finally have a safe little menu soon.

...because he's not allergic to water....

Little man really enjoyed the ice chips when we were at the hospital. So, we bought him a sno cone maker so we could duplicate those at home (we have tried just chopping ice ourselves but it is just in big hunks). He thinks the chips are a special treat. That is when he isn't having hemp milk popsicles and hemp seed cereal!

Mud pies (aka, big brothers) are enjoying the sno cone machine as well, of course they get to add sugary syrup to their sno cones. We had friends over for a much needed "normal" playdate day (thanks B boys!!) and Little Man's big brother (2nd mud pie) had to explain that Little man could have sno cones "because he isn't allergic to water"! :) His big brothers really do look out for him.

I found some Hemp seeds, I've made him a cereal out of this. As his ingredient list grows, I will have to think about what else I can make out of it...but for now, he is LOVING his new food. Yesterday morning, he had his cereal while his brothers had Saturday morning chocolate chip pancakes and he got to sit at the table with them! Oh, boy what a treat that was! He sat there for an extra 20min past when they were done, just eating his cereal- licking every morsel of it until it was gone....

Dietitians

I believe I've said this before....but it always warrents repeating! Thank goodness for the Dietitian's in Sam's care!!! It was an RD who helped us get to the diagnosis, and today big thanks to our RD at CHOP and our inpatient hospital RD at Mayo.

We struggled finding a baseline for Little Man, we visited with our Allergist at CHOP who suggested his intolerances could suggest a corn intolerance and trace corn proteins in the Neocate formula could be preventing the inflammatory process in his body from calming down enough to find him a baseline to build from. We trialed corn and sure enough, after just 1tsp, failed it, we pushed it another 1/2tsp to be absolutly sure what we were seeing was a true FPIES response and we got our answer. The true beast of this syndrome is that you have to feed the child the food that he could react so violently to to know if he is intolerant or not....it is a terrible thing to watch, I can only imagine what a terrible thing to experience. Little man let us know what a terrible thing by restricting his intakes of the formula, to less than half his needs for over a week...he got so weak, so fragile. We then started him on Hemp milk, putting it half/half in his Neocate bottles and he began to rapidly improve. We started to move further away from Neocate and it's trace corn proteins to more and more hemp milk - he was doing beautifully. We were planning on building up the hemp milk to equal the nutrition in his forumla; while we moved away from the Neocate- adding the nutrients we felt he needed in addition to the Neocate, starting with the starch. The addition of the starch coincided with the first blood in stools we have seen in 13mo. We stopped starch and gave his body a 3day rest, and then restarted; only to have everything come sweeping back- with full force of the worst watery explosive stools I have ever seen! This drained little man so much, so we tried other starches- with no better effects. Now little man isn't trusting his milk again and limits his Hemp milk to less than 1/2 of what he has been taking- going down to the same mere 400 calories he did with the Neocate after corn fail, only with the hemp milk (that is low on carbohydrate) - not getting adequate calories meant he wouldn't get enough glucose for his body to feed his brain....which is the state he entered in to on the weekend before his hospitalization. We knew he was sick, we just didn't know how to get the right help for him. We also knew we had an appt with his pediatrician right away that Monday morning; and knew she could help.

That was one week ago. Where did the week go. I find myself wondering if the doctors here knew about FPIES and what they were really seeing in Little Man upon admission was not malnutrition but failure to thrive from the foods we give him.....would we be ahead of where we are at today?

The focus is on his nutrition. A growing baby needs nutrition first and foremost for brain growth. Little Man's body knew this, and knew what to do to give it to him....burn his own stores to make glucose for his brain- it is a state called acidosis. Little man's body was starting to go into acidosis because his stores were so low....from being so sick since corn fail; and not from a diet of hemp milk.

Which brings us to today, where everyone can hopefully start to catch up. Dr.P at CHOP has given us some great advice...."the parents know the child". If the parents are worried about the child, then there is something to be worried about...."listen to the parents". Dr.P has been calling us daily to check in because we are worried about our little man, so he knows to be worried too.

Today brings us new doctors, new perspective, new approach....the Mayo way- a team of doctors to look at things from every angle; not only to give best care but to make sure nothing is being missed or overlooked.

Our good news today? Our dietitian from CHOP was able to give our dietitian here the resources to show that Hemp milk is a nutritious milk alternative (not to be confused with a formula alternative); but a good base on which to build a good diet for an FPIES child with intolerances to dairy, soy, rice, and corn. Confirmation that I was in fact not malnourishing my child, his FPIES was.....

So quiet....

at home. Hubby takes the night shift with little man. After many months of having a sick child, while still caring for our other 3 boys; we have become a well-oiled (although admittedly sometimes squeaky) machine. And right now, I take the day shift with little man at the hospital so I can be there to talk with the doctors; and he takes the night shift so he can be there for Little Man. This allows all our boys to get time with each of us as well. Cuddle time, bedtime stories and bedtime prayers with mom right before bed are critical for the 3 big brothers. Playtime and cuddle time with daddy before bed are essential for little man. But we miss Little Man at home. He is anxious to get home too...hopefully tomorrow afternoon...

Little man has not had good weight gain yet. I already could have told you he wasn't going to. He drinks in adequate calories but his body isn't absorbing them all because of his gut inflammation, so this will continue to be a cyclic affect until we can rid his body of the inflammation. He started to have a rash on his back today- just another sign of the inflammatory triggers in his body. He also looks more pale today.

Our allergist at CHOP has been calling to check on him, this makes us feel very supported and is helping with a lot of the questions we/the doctors here have about FPIES. We have learned so much on this journey so far, I continue to look to learn more- not only to help our son (who still needs so much help right now) but to help learn and raise awareness of this roller coaster ride.

Between a rock and a hard place...

When you can't go backwards and you're stuck with how to move forward....where do you go?

I know Little Man will outgrow this one day, my goal has been to get him thriving in the meantime. I don't want to just 'get by' and "survive" the next 1-3yrs...if he were pain free and not throwing up every few days and maybe able to tolerate even just 1-3foods; it would be a consideration. But the trace proteins of corn in the Neocate were keeping him from this - his gut remained inflammed and continued assualt and this would keep him from tolerating any foods and is likely the culprit of this possible carbohydrate maldigestion issue.

So, the choices are:

1. Stay on (go back to) Neocate and have continued gut assualt but know that his brain is fed. No foods for the next 1-2yrs, along with continued throwing up, continued mucous stools, continued pain with ingestion of anything, and off and on again agitation/fussiness/colic- whatever you call it- clearly uncomfortable. Risk continued food fails (because of gut inflammation and unknown consequences of that) and him being sick over and over again- and then not even wanting his Neocate. Also, this isn't just about him- I have 3 other boys who this is affecting daily as well, if we have a choice to get better than this....how can we not take it?

So, brings us to, choice

2. Hemp milk and build him a formula...risk him being sick while we tease out which ingredients he can tolerate as fortifiers. Risk him losing weight while we look for ways to fortify his formula. Move away from FPIES triggers and gut inflammation and be able to see more cleary where all his almost daily pain for the past 9+mo is coming from.

Right now, we're stuck- he does not tolerate the carbohydrates we are adding to his formula....I have to choose between giving him unbearable gas, and runny stools to give him a carbohydrate or give him plain Hemp milk and have him hungry, but pain free, from no carbohydrate.

He is so tired today, but I do not feel it is only from the plain Hemp milk only diet- I feel it is from the tapioca, sugar, and potato causing so much distress that is exhausting him because he can't sleep through it, also the watery diarrhea from the maldigested carbohydrate causing some dehydration. I hope he pops out of it soon. I hope GI agrees to see him SOON. We are in need of GI doctors input for further guidance. I could go it alone and guess, but I'd rather have some medical input...

I amtempted to go back to tapioca starch and give him enzymes....might be worth a try - I don't know. Also thinking of getting a meat trial underway. Will need grass-fed (no soy, no corn) beef, lamb or pork.

If we have more pieces, will this puzzle finally come altogether?

After stopping tapioca starch over the weekend and restarting it on Monday with a swooping repeat of last week (agitation, GI distress and blood in watery stools), we stopped the tapioca starch yesterday morning. Little man got plain Hemp milk all day yesterday. We tried to just put a little cane sugar in his hemp milk to see if that helps to keep his blood sugar stable enough so he isn't so ravanously hungry and over eating (like he did on Monday- ate 83oz of hemp milk that day!!). I have questioned his tolerance of the cane sugar, but it was something to try so Little Man's daddy wanted to give it a try. He gave him some sprinkled on the table for him to play with (large granules) and sprinkled it on the hemp popsicles we make for him- he licked it a little. We also tried to put it into 2 bottles last night- of which he would drink an ounce and then not want anymore; only to give him a plain hemp milk bottle 15min later and have him suck down 6oz.

Well, we put him to bed (happy baby all day) and he woke up SCREAMING mulitple times (too many too remember) last night!!! He was SOOOO agitated...well, now we have little doubts of how he does with cane sugar as well.

So, moving on- I went and got potato starch today and started that in his bottles, he drank them ok as long as I kept it low....well, it was a good thing I kept it low because the same thing that happened with tapioca starch and sugar was happening all afternoon with potato starch.

It would seem to me, at this point, we have enough signs to point us that this is a carbohydrate maldigestion/intolerance issue compounding his FPIES. Hopefully we'll know more soon as I hope we can utilize these carbohydrate trials to help further solve our Little Man puzzle and be one more step closer to finally getting him healthier and thriving, and getting real food trials going. Hopefully....

More sliding...

Little man has been sick for a week now. We've lived in this place before - all the crying, stomach aches and pain, sleepless nights, wondering what is wrong, what to do to stop it, or fix it...

He isn't throwing up, so for that I am extremely grateful. It also is a good indication that what he is enduring isn't FPIES reactions.

His diapers are another story. Since corn fail, we continued to give him Neocate- with trace corn proteins. His body was reacting to the trace corn proteins already and after we pushed the limits with a true food trial of whole corn; his body now recognizes corn as an offender- and launches the attack at even trace recognition of the proteins. We continued to give him Neocate following corn fail because he was just too sick to test out a new "formula" or milk. The mucous in his stools was daily, the throwing up kept up sporadically (despite no crumb ingestions or other food exposures). We were moving him slowly to only Hemp milk...until the mucous in his stool turned to blood. We stopped Neocate right away and went straight to Hemp milk and building a formula out of that.

His bloody stools were accompanied by unexplained low-grade fevers and lots of fussiness but we didn't see any more blood....until yesterday. Blood throughout his diaper, in streaks and clots, and the pain cries have been intense, until the diaper today with a very large blood clot- he's been feeling better since then so hopeful this was the "end"....and maybe just his body cleaning out.

I can hope, I am optimistic. We were getting to see such good progress before last week, if only we could get back there and stay there for awhile.

Mudslides

Our rollar coaster ride has hit a mudslide....the blood in his stool, then not eating well, then starting to refuse to eat, then a viral illness, everything started to look fuzzy through the haze of mud.....

Little man continues to run unexplained fevers and generally just feeling lousy- lots of crying like he hasn't done in a long time....it looks to be "just" some virus that he is fighting...day 5 of fevers today. So, we just have to keep a close eye on him.

He drank 70+oz of hemp milk today!!!!! But he was hungry all day....unfortunatly the hemp milk does not have enough carbohydrate and he does ok for a day or two but then it just caves on him and he needs the carb. I tried a few times adding the tapioca and cane sugar mix but he was refusing it, and gagging on it- and I can not have him associating this new formula with anything negative.

So tonight,after a very busy day, I started really trying to pinpoint where this mudslide started (other than the blood in stool from the neocate)- but that is where everything started to spiral and unfortunatly making it look like it was all connected. After much thought on it and careful review of my logs; I think it is the cane sugar he is not liking. He's reacted to things with sugar before, so maybe he has an aversion to sugar (or something more). Still not sure but for this instance, it seems that when I started experimenting with small amounts of adding cane sugar, things started to slide down this mudslide; that combined with his body fatigue from Neocate exposure after corn fail, and this virus- all just got to be too much for his tired little body.

I have added the plain tapioca starch back in this evening and he was almost immediatly a happier boy; so hopefully this works and I will stay away from the cane sugar for now -- will just have to figure out another way to get more carbs in him. His allergist at CHOP keeps suggesting a barley trial, but I am SOOO leary of grains right now!- I'm SO leary of ANYTHING that will have a chance of making him sick!!

But we do have to come up with some foods we think he will "pass" and be "safe" foods to expand his diet. I'm thinking potato is the better option for next trial- it is not a grain but it is a starch and would give him the carbs he needs, and so much more! Also, looking at Arrowroot starch. Need to get him healthier first though....

I keep searching for that little barometer that tells us that he is ready for a food trial, that his illness is or isn't related to food intolerance, or when a food is going towards an FPIES reaction.....still can't find it!!

A step in a new direction?

Or maybe (hopefully?) a leap! A leap towards true gut healing and finding our little man's baseline and moving on with food introductions.

Big day today! Hemp milk arrived this afternoon (thankfully the one with the expiration date after Feb.2011 to assure natural flavors in it are corn free). We gave him some right away, he loves it! Half the worry was if he was going to take it....although I figured he would- he doesn't seem to be a picky eater or "super taster" as one of my other boys is. He has had a good evening and fell asleep without any problems. So, now we wait....we wait to see how his body will accept it and if he will drink enough of it, then we begin the process of adding fortifiers because it isn't very high in calories or protein. But if it helping to finally heal his gut and his body can absorb each of those calories, he is still winning. Although, we know we won't be able to continue it just "as is" for too many days. We see his Dietitian on Tuesday so by then we should know how his tummy is handling the change.

It is my #3 son's 3rd birthday today!! Wow, 3yrs go so quickly. It seems just last week he was the age of our littlest man. Birthdays are always celebrations for mommy's too...bittersweet celebrations. I always say I want to find the pause button....until now - with FPIES, I'm looking for the fast forward!!

Hemp Milk

Given Little Man's symptoms since corn fail, Dr.P at CHOP has advised that we need to get him off of Neocate as soon as we can. He advises Hemp milk as a good starting alternative. Of course, it will need fortifiers as it is low in protein and fats and just plain calories but one step at a time- we need to see if he'll drink it. Dr.P said if he won't take it at first, to mix it 1/2 and 1/2 with his formula for a few bottles but really try and get him on the 100% Hemp as soon as possible. He really feels that his symptoms and extreme sensitivity, as well as continued issues since starting elemental are related to the corn intolerance and trace proteins in the Neocate.

He also agrees that we should hold off on food trials of FPIES trigger foods until little man is to a baseline and healthier...he has been just getting so much sicker by the day and it is so hard to see him go down this road of not thriving again. He advises, get him on the Hemp and get him eating and tolerating this, then get some fruits and veggies in his "safe/pass" foods and then when you have him built up to a good baseline, trial a grain and a meat (these can be iffy so have to proceed with caution and it's pretty much a guess work with FPIES to which grains and which meats they can tolerate).

I'm exhausted since corn fail, but so is little man - he falls asleep at random times throughout the day...I walked into the living room today and he had just crashed asleep on the couch, he usually requires us to rock him to sleep. Ok, so maybe it is a good thing- maybe he is so much more relaxed since we are able to give him ibuprofen that isn't hurting his belly and so he is catching up on some sleep. I would be reassured by that if he actually looked like he slept when he woke up, or if he acted like it- but he looks and acts so tired.

I ordered the Hemp milk online this morning, overnight shipping- should be here tomorrow....hopefully he likes the taste! Thinking of having him on something that is truly nourishing him and healing his gut- getting to see him pain free and distress free, and maybe even start passing some foods gives me chills of excitement!