Good Streak comes to a halt....

Still hoping these symptoms are from the lubricant but we're in the mind game time when I start to question everything in his diet and environment....I just want him to not suffer and be a happy little boy.   Seeing him suffer or struggle is so very hard on a mom.   Not being able to stop it or know exactly what it is from to know if I'm doing everything I possibly can to help him through it is even worse.   And that is where we are at.....

We restarted the Alimentum and it seemed to be going well- clearly benefiting from the increase in nutrients (B vitamins, iron, Vit.C) he needs in his diet and the increased energy that comes with that; but there were subtle signs that had been there in the past with introduction of Alimentum as well (rosy cheeks, little bite looking spots, a washed out look, not gaining weight despite eating more and getting more calories, questionable look and smell to stools) but these aren't necessarily FPIES responses for him.  Are they his carbohydrate intolerance, if so, it is more that they are intolerance symptoms and that although bothersome- they wouldn't be doing the "damage" an FPIES reaction does.  Are they enteropathy (FPIE) symptoms/reactions?   We just can't be sure yet, and the good was outweighing the bad so we are content for now, to "ride the line".   

The Chee-Cha puffs are still going well and I ordered some potato flour and potato starch to start playing around adding that to his millet flour to bake him more things.  We stopped (hid) the chocolate- I think it's safe to say that chocolate itself (Hershey's Cocoa) can be added to his safe list but he was OBSESSED with it and was eating way too much- so he was getting the effects from that (some hyperactivity and loose stools- seriously, he was eating spoonfuls of the pure cocoa powder!).   So, that went on the shelf for now, until I have more things to mix it into so he eats the food I mix it into and not just the powder!! 

Riding along the line.....then comes the lubricant (spoke about in last post) and we saw immediate flushing and tantrums that night followed by 3 days of loose, large stools, followed by some really questionable looking stools (was that a blood clot? is that blood mixed in? what is that smell?).   The boys thought the smell was like "burned plastic".   We're guessing it is the lubricant working it's way through his system....and now we recover from that.   With a sensitive gut that is not tolerating safe foods- Alimentum is causing symptoms, potato flour and starch (given over the last 2-3 days) are causing symptoms,....he is not sleeping well and last night he was up every hour or so and then gave up and got up for the day at 4am.  Not.good.signs.  So the guessing games begin....issues with Alimentum (sugars, soy oil)?   Reactions to the potato flour or starch (cross contamination with the brand- King Arthur's), or all just sensitive because of his inflamed gut??

And then there is the tube....the tube change was successful and it looked GOOD at first, then the lubricant issues kicked in and we held off using it became clearly painful for him again- bleeding and oozing and inflamed granulation tissue again.  

I don't even know what step to take next....We pray that we recognize the answers to our prayers on the next directions he needs for healing....

Just Peachy....

It had been a few days since little man had had anything to trial....well, unless you count the sheet rock or wood he keeps "sneaking".     Last week, I had picked up nectarine's at a local produce store.  I accidentally mixed a peach in with them.   Well, maybe it was Divine Intervention as the nectarine's were not very good once I peeled them and I ended up throwing them away -- the last thing I need is to give him spoiled fruit!  But the peach went into the fridge, maybe I'll eat it one day....

Well, the other night at dinner- he was "crying" for our food once again.  He has done this in stages for the past 8mo....when his gut is inflamed, he doesn't even ask for food.  When he is healing, he begs.   It is enough to break a mother's heart in a million pieces and some days so hard to not just give him SOMETHING!   I caved....I went to the fridge, where I knew the peach was - got a knife and sliced it up for him.  I put it in teeny-tiny pieces (the size of his millet puffs) and he picked it up (although slippery) and ate it!!  He picked up another piece and ate it!!  He tried to eat a bigger piece and gagged on it....but he recovered quickly and went for more.   He wanted to hold the peach, touch all aspects of it. He started to get frustrated that he couldn't pick up the pieces fast enough so I cut up a few more pieces and put it in his mesh feeder.  He is a little old for a mesh feeder and at first didn't know what to do with it but he got it!  He loves peaches!!

That was a big "no-no"- we trialed at night and we let him decide how much he wanted.   But I have been so frustrated with his oral aversions and not wanting to trial, and his most interested times to eat are at dinner -- with the family.  So, as I've done all along with this crazy illness -- I need to let him guide us a bit here.  I've been "throwing" (ok, not quite literally) food at him over the past week- see if I could find something he was interested in, taste and texture.  He tried persimmon, liked exploring this (freeze dried) but it came through whole in his diaper the next day and it is red- so that makes me too nervous right now.  It is in the date family, so it may be too high fructose load for him to tolerate in large enough quantity's for a true trial anyway.  He has tried buckwheat (good flavor if I do say so myself) but spit it out.  He tried spinach- gagged and spit it out.   Mango's, liked those the first day but won't let me come near him (they may have caused a big of a stomach discomfort as they are high in fructose, and his body has a hard time digesting high sugar load foods).  But we have to start somewhere....

So, we've moved on to peaches.  The next morning, I gave him what was left of the feeder (after putting it in the freezer all night)-he carried that around all morning and sucked it dry!  He was so happy with his new treat!!  

The rest of the peach (1/2 of it left), I cooked down and mashed.   Little Man's aunt gave me a great idea to try....put the puree in a piping tool (used for decorating) and pipe little dots out on some freezer paper and freeze his puree- so he could have a pureed finger foods.  So, that is what I did with the rest of the peach.   Last night, while making dinner- I sat him down and gave him his new treat.   He gobbled those up faster than I could finish making dinner!!  Thanks Aunty M!!!!! 

Now, I was out of prepared peaches, but I had just picked up a few dozen more at the store; so I got some and cut it up like the previous night.  He was more interested in the skin!!  He wanted to "chew" on the skin!  We let him explore it a bit, but I had to stop it soon....there is a spray put on most fresh fruits and veggies for preservation and this spray often contains corn byproducts!   So, even if washed- it would be a chance I'm not ready to take yet for him.  But it was really great to see him putting something with so much texture in his mouth.....

So far, so good with peaches....and we celebrate our little victories.   Could it be that we are FINALLY building little man a tiny menu??   Peaches are good source of vitamin A and C -- just what he needs!!  Also, they even have a bit of iron in them.  They would be a perfect addition to his diet.  Now if everything else in Little Man's complex care could be "just peachy", we could celebrate more.   But for now, I must go and prepare/puree/pipe/slice/freeze the rest of those peaches!!

Millet Trial, day 3

No, you didn't miss a post. Day 2 was a day off (from millet). Little Man had too many loose stools from the millet grits, his system needed a break. This is an added component of Little Man's FPIES. He isn't the only one with it, our RD at CHOP is the one who alerted me to it. His scope confirms what we already knew: he has a carbohydrate intolerance. He can not fully digest the same amount of carbohydrates as other kids his age (FPIES or not), so if he gets over his "load" - his body will let it out in explosive diarrhea.

Mudpie #2 (aka 2nd son) has lactose intolerance that developed last year. I connected his issues down to milk (lactose=milk sugar). There isn't many non-invasive tests for a lactose intolerance diagnosis confirmation. So I relied on the tried and true elimination and reintroduction process. I pulled out all milk from his diet without him noticing for a week or so, and then I tested it with a nice big glass of milk one afternoon and sure enough, he was running to the bathroom. I asked him if he was having cramps- being six, he didn't know what cramps meant so he described to me..."it feels like firecrackers going off right here(pointing to his lower abdomen)". He has a way with words! And I couldn't think of a better way to describe it. Off to the store to buy lactaid pills and milk and problem solved. He doesn't have any of those bathroom trips if he takes his lactaid or drinks the lactaid treated milk. Lactose intolerance is the easy one of the carbohydrate intolerance's to fix. Although some people do have it so severe- they can't have any lactose in their diet, even with the help of lactaid...but I digress. Lactose intolerance is what most people are familiar with since it is the most common of the carbohydrate intolerances. It is the same result, from any of the different carbohydrates (milk sugar, starch sugar, fruit sugar....) for someone with a generalized carbohydrate intolerance like Little Man.

Firecrackers is what Little man was having- but he didn't even mind. He had some initital tummy upset from the Millet grits but never did have any issues after that; although the diarrhea continued all day and night and into yesterday with one loose diaper. Yesterday we didn't give him any millet.

Today? Today he had a COMPLETELY NORMAL BABY POO diaper!! If you're an FPIES mommy reading this- you're giggling...I know you are! If you're not an FPIES mommy, you're wondering why the extra excitement over poo! FPIES ravages their entire digestion, normal poo's are not their normal....unless things are right in their world! I have 4 boys - Little Man is #4. And I have changed many poo diapers in my life even before them - I have done daycare, I have babysat, I started changing diapers when I was 9yrs old (since I am #2 of 7 children it was par for the course)....I have never, never seen such a range of weird poo as I have from one child- from my Little Man.

So, today- millet puffs arrived (thanks M!!!) and we continue with millet trial. I "cooked" them with some hemp milk into a cereal and he ate some just puff plain. He LOVES them!! We will do this same amount for the next few days and then look to increase it as we go. I am still holding out hope that this will be the wrench in this viscous cycle of a ferris wheel ride ON this FPIES roller coaster ride!

Millet Trial, day 1

This morning marks our first trial for Millet- our attempt to get Little Man a grain, even if it is a pseudo-grain. He needs the extra carbohydrates in his day because he can only tolerate small amounts throughout the day but being a growing little toddler - he can't go without completely (carbohydrate intolerance or not). Millet is our hope. Our hope to give him a carbohydrate, a grain, a versatile food source (flour, puffs, grits, seeds, flat bread, pop-millet....) for a base of his tiny menu.

Well, I can't say the day went without a hitch. I made up a small bowl of this millet grits, tasted it myself- hmmm, a bit like corn cake. We are lucky that Little Man has no oral/food aversions as of yet. I'd like to keep it that way so forcing him to eat something is not going to be a part of food trials. He would not let me spoon feed him. So, in the bowl went about a tablespoon of grits- give him a spoon and watch to see that he eats about a teaspoonful and then stop him. Gee, sounds like fun? Well, thankfully he took two small bites and then started playing, so I used that opportunity to be done. Thankfully....

The pain started about an hour later, the SCREAMING lasted for about an hour and then he finally took some more hemp milk formula and settled down. And then he played, and played and played all morning....until- the report from Mudpies comes in...."Little Man stinks mom, and we heard it too, it exploded". Uh-oh....but he's not crying? Reaction poo for little man can be acidic and he lets us know the split second it hits his bottom. But nope- playing in the sandbox like nothing is going on. Sitting on the changing table tells a more worrisome story. Mucous, lots of it; and all loose. I had held him a little bit a few minutes earlier and I could feel the gas bubbles digesting. This is not FPIES trigger, I feel this is his carbohydrate intolerance and the almost 2tsp he ate this morning gave him 8grams of carbohydrate....apparently too much for his body to digest at one time.

With a carbohydrate intolerance (that we assume is secondary to his FPIES), Little Man doesn't have (or release/produce) sufficient enzymes in his small intestine to breakdown all the sugars in the carbohydrates that he eats, so then those go into his large intestine undigested and not recognized by the large intestine that is supposed to only be handling digested foods and the gassy cramps can be pretty painful and then it causes diarrhea.

After this first diaper, he settled down nicely with a bottle for a nap and even took a really long one! He woke up and played outside again (he LOVES to be outside!). But then he had another diaper of diarrhea. So, I am a little concerned as diarrhea is what lead up to him getting sick and ending up in the hospital a month ago. But I am hopeful we are staying on top of it. He has been drinking his formula like a champ and although he screamed for that hour this morning- he otherwise was pretty good all day and settled down easily for bed tonight.

Stay tuned as we will press on tomorrow! We will give him less, or change to Millet puffs and see if that goes better.

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.

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.

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!!