Trying not to get too discouraged....or, too excited?!

Today was some of the same symptoms as yesterday but not a build in symptoms; actually if anything- they were less. I am still confused by the symptoms at all, if this is going to be a pass but I am so encouraged that things didn't build. Maybe what we are seeing is left over from the Alimentum he had this weekend? It wouldn't be the first time a trial got muddied by being too close to a fail or just from a food that caused symptoms.
 He got 3 doses today (2tsp at a time, in 3 different bottles throughout the day). His symptoms to note are: crankiness when waking this morning and from nap....but I have to remind myself that is not abnormal for him- he really struggles with this transition and I really wish I knew why.
 But the good news, other than that- he was his normal mild-natured self all day. His cheeks aren't as rosy/chapped looking but it is waxing and waning still a bit. The concerning symptom of the blue coloring (cyanosis) around his lips and eyes is still there- there was a point today I just couldn't get over how terrible he looked.....but he was acting fine! He took a good nap, and he has fallen asleep easily tonight. His bowel movements have been great (yesterday and today)- no mucus, no blood, no increase or liquidy diapers, no diaper rash, no allergy ring; but there has been hiccups- twice. I know, seems silly right? Well, he's gotten hiccups before a fail before. He's also gotten hiccups randomly just like anyone else so who knows if this is a warning sign or not.
 Either way, we press on. We press on encouraged because his appetite was good today- he ate his millet "cake" for lunch, and he had snacks through the day and willingly drank his bottles, and had dinner even! I made mashed potatoes and he LOVED them! I mixed them with his safe oil (Safflower) and his hemp milk. He ate a few tablespoons, and then he followed that with gobbling down 3 mini millet muffins and a whole cup of peach juice (peach puree + water = his safe juice). He then had a bedtime snack of 6 mini muffins. 

The next day started out well, actually really-really well. The two little boys played SO well together! And then as the late morning wore on, we started seeing him crumbling...little things were upsetting him, he wanted mommy or daddy right next to him, he was getting obsessed over things (he has odd obsession behaviors when he isn't feeling good), he had 2 bowel movements - that although they didn't have any reactionary look to them, 2 in a day is out of his norm, plus that "allergy ring" was showing and some spots around his diaper area. What is this about? I actually didn't go right to the ProViMin in my head....

This is where it gets really hard....when you start seeing symptoms but you can't be 100% sure if they correlate with the trial or from something else....accidental exposure, cross contamination, etc. My head went to the Potato Stix he had eaten that morning. We initially found Pic-Nix potato stix at a Fleet Farm on our way up north last weekend. Everyone was getting a treat and I picked it up and read the ingredients: potato and cottonseed or palm, or safflower oil, and sea salt. Safflower oil is his SAFE oil! Right under the ingredients it states that it is manufactured on a dedicated line- no line cross contamination risk! The risk with it though is we're not sure if cottonseed or palm are safe....and actually have had suspicions that they might not be (from other foods with them). But, I took the risk anyway...we're traveling, he's not eating.anything. on the drive....I wanted him to have something to re-stimulate his appetite and was excited to give him a snack, just like this brothers were getting. I took the risk, for him. He ate the entire can over the course of the weekend, no symptoms to note. On the way home, we didn't go the same way but discussed that maybe we should have - since that can was seemingly safe, we should stock up!! Although we do have a Fleet Farm down the road from our house. I ran some errands earlier this week and decided to get some more, from our local Fleet Farm. I brought them home and he wanted some, took a few bites and then didn't want to eat them. Huh, well- maybe his "jag" is done and now that we're home, he wants something else "new"....or maybe it is a different batch with a not-so-safe oil and he can tell? My radar goes up a little. But, he has been asking for his "star cake" so I've been making that everyday (millet muffins made with a small star silicon pan). With the addition of pure maple syrup and ground CheeCha puffs (for potato starch/flour), the texture holds up better than his mini muffins ever did and he's gobbling them up- by the fork-ful! I'm amazed at how well this little boy is using a fork and spoon!

Ok, this is getting long so I better get to the point! Yesterday, he asked for his "potato chips" first thing in the morning. I hesitated- thinking of how he hasn't wanted them and what if they contain a unsafe ingredient and we're in the middle of the ProViMin trial,... but he has been wanting to eat before his morning bottle and I don't want to discourage that! So, I let him eat some- he didn't eat many and then he wanted his bottle, we decided to up the dose of the ProViMin yesterday- he has been SO pale and he needs the nutrients so his body can make iron if we have any hopes of not having to have another IV Iron infusion or blood transfusion. He took his 8am bottle and his 10:30am bottle well and was playing well all morning and then he had a full lunch of peaches, a potato pancake, 4 mini millet muffins, and some more potato stix. After lunch, he took another bottle and he started to get really crabby, we hoped he was just tired and an hour later he took another bottle and finally went to sleep. He did fine all evening, although his appetite was decreased and he was a little clingy to daddy. We got home late and he went to sleep easily and then he woke up around 3am SCREAMING!!! Yelling and screaming and thrashing and then hitting and kicking and screaming! He woke up everybody in the house, he was just crazy!! It's 3am!! We finally got him calmed down but he stayed awake for at least another hour. The next morning he was very crabby all morning- everything causing tears...all out of sorts. He seemed to be getting better as the afternoon wears on, so I am still hoping my instincts are right and that it was the potato stix and that will just have to work it's way out of his system (the can went into the garbage!) and not the increased ProViMin (went from 2tsp/bottle to 3tsp/bottle- upping his intake to 1/4cup/day (end goal being 1cup/day of ProViMin). I am also worried about his anemia and fear we have to face it and bring him in for an evaluation soon- he is so pale and has been for at least 2 weeks now, and this disturbed sleep (sleeping but not acting rested and then being up in the middle of the night) are familiar anemia symptoms. Also, his tube looks terrible!! I'm ready for it to just be taken out...we can't use it and he's now complaining again of it hurting during the day, and who can blame him? It's so red and inflamed, it looks like it is going to push itself out!! Time to address it. Surgery has given their recommendation - to pull it out, that it is causing more pain and adverse symptoms than it is helping (for sure!). His doctors are not sure if we are there yet with it and still hope to utilize it. We are just not sure. We continue to pray that the ProViMin will work out.

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. 

It's gonna be a bumpy ride...

ProViMin is started and, as suspected- we are seeing symptoms. At first this morning, I was hopeful it was just because I am watching so carefully- to notice that he woke up crabby and only wanted to sit and watch TV and didn't want me to leave his side, or that his cheeks were a bit dry looking and quite pink, or that he wasn't wanting his bottle or his waffles.... We started the ProViMin last night at 6pm with 1tsp of the powder mixed into his hemp milk bottle, he then got another one at around 8pm, with the same 1tsp. powder mixed in. He woke up around 11pm crying and uncomfortable but we hoped it was just because he was hot as he had fallen asleep covered up on the couch. He woke up at around 4am but a bottle (plain hemp milk) put him right back to sleep. He was awake for the day at around 7am and finally got him to take a bottle at 8am. I put 2tsp of ProViMin in this bottle. The goal is to give him 6tsp. in a day, which is equal to 1/2 a serving a protein. Once we are sure he is tolerating this amount, we will move up with the end goal being 1cup of ProViMin mixed into his formula and foods throughout the day. I suspect 1cup will be hard to get to (A LOT of powder) but we'll cross that bridge when we get to it. For now, we need to convince his body that it does not need to fight this. It is disheartening to see symptoms- however subtle they may seem today- as his safe foods have been safe from day one (no matter the quantity). Hemp milk, the first day he drank 50oz., without so much as a hiccup! Peaches, the 2nd day of trialing them, he grabbed the entire peach and ate half of it - whole and raw...not one burp or any symptoms. With potatoes, he ate a half of a bag of CheeCha puffs on day 1 with no symptoms whatsoever. Today, with the introduction of ProViMin, we have symptoms. Red, red, rashy cheeks, blue lines (signs of cyanosis) around his mouth (most concerning symptom), some decrease in appetite, and a sensitive mood....but nothing over the top or unmanageable. So, we press on and through, starting again tomorrow and working within the 6tsp. dose....until symptoms either disappear or become more clear.

How to Help an FPIES Family

An informative and empowering post from The FPIES Foundation blog: How to Help an FPIES Family Today

We are so fortunate that our friends and family have been so incredibly supportive through the many stages of this journey.  Family, long time friends, new FPIES friends and even those whom we know nothing about....  There have been times when I read an anonymous comment on this blog and wonder if that person even realizes the impact of their kind and supportive words. There have been times when we have received anonymous and not-to-anonymous donations to help us through some rough times providing for a family through a chronic and rare illness.  How do I even convey what these gestures- no matter how seemingly simple they may seem to the giver, mean to me- to us.  Nothing goes unnoticed or unappreciated when the small things are the big things- like an illness that takes away your ability to feed your child.

If you're looking for a way to help and need some idea's, please read How to Help an FPIES Family Today

And thank you for all you do for our family, for your kind words, for your prayers, for your positive thoughts and comments left on this blog and sent in e-mails, and for the monetary donations for our family or for The FPIES Foundation to help them help other families, and for the time spent helping us with our other boys, and for the RV loaned for the long travel to specialists, and for the weekend (and longer!) visits to help watch our boys, and for helping purchase the Vitamix that now makes Little Mans' food every.single.day, and for the grocery help,and for the acceptance of our restricted schedule and our special needs to keep Little Man safe, for the care packages sent to his brothers- especially when he is in the hospital and our attention is so divided and energy drained; and for watching our boys while we go to appointments for Little Man or picking them up from the bus, and just for simply understanding the adjustments we have made to help our Little Man thrive, and for multitude of other ways you have helped!

Expanding Menu

Potato continues to be going well.   He has CheeCha puffs, which are potato flour, potato starch, and salt and then puffed.   He has eaten baked potato and mashed as well as fried….none of them in too large of quantity since he still mainly nibbles his foods.   We tried a potato stick by Utz, ingredients were cottonseed oil and potatoes.  He had irrational tantrums that coincided with eating them two times, so we simply threw them away- unsure if it is the cottonseed or a cross contamination issue or what but no reason to take any further chances when we can just move on. 

Normally, I would call the company and be sure that there is no cross contamination risk but that is easier to do when you know which foods you are strictly avoiding.  Many of little man's allergies are different. Dairy- we pulled before he was 6mo.old, already connecting a milk protein intolerance (and history of that with the other boys I knew he would need to avoid until at least around 1yr.), soy we had rechallanged when he was 18mo. because we just were never sure when we tried soy at 5-6mo.old what it was that he wasn’t tolerating in it and since the soy formula we used also had corn- was it the corn syrup in the formula?  Maybe, probably.   A soy challenge was when we first learned some of his reactions result in small intestinal villi damage….possibly more of what is referred to as Enteropathy. (sometimes even called FPIE (without the S)- Food Protein Induced Enteropathy.    Although the reactions are not as acutely severe as FPIES (there is no shock), the effects can be just as serious.  So, we have avoided soy in any forms as well.   We suspect that some of his reactions are this enteropathy where some are the FPIES.  The severe acute FPIES almost seems protective of the more-long-term damage of the enteropathy, because with an acute reaction- at least we know sooner rather than the side effects of a chronic FPIES state he has all too often settled into.  We know we need to avoid dairy, soy, rice and corn.  There are a few others that were bad fails (sunflower, buckwheat ,....).  Thankfully, little man hasn't had a full shock episode from first exposure of a new food. 

Back to potato and the expanding menu....in my search for fun ways to serve potato, and a potato pancake recipe, I came across a Pizzelle maker.  Pizelle’s are thin waffles- and can even be made into a cone or a rolled shape to fill.   It was not a cheap kitchen gadget to add to the growing supply but all I could think of was how much he likes crumbs and crisp and that his ingredients are more conducive to producing thin/small recipes than thick/large ones….so I bought it. 

I made him his first pizzelle right away- utilizing a potato starch that I am still hoping is safe (but not sure); but most of all using a baking powder!    We have successfully been using baking soda in his recipes but baking powder has corn starch in it, all except 1-2 brands- Hain is one, it uses potato stach.   With the addition of these ingredients, there is enough to hold together dough to successfully make the pizzelles!  “Waffles”!  he says!  

With waffles, came pure maple syrup.   I had bought some months back so had it in the cupboard, which was a good thing because his brother was having waffles for breakfast and got out the syrup, little man promptly asked "syrup, yes?" And I was able to say "yes, syrup!" He LOVED it!! He ate waffles all day long for a few days!  Noticing a trend here- when he discovers a new safe food, he goes through a typical toddler "jag" and it is all he eats, sometimes all he can think about! 

So, we are expanding his menu and experimenting with the new ingredients.  He now has hemp, millet, safflower oil, arrowroot starch, peaches, cocoa, potatoes, and pure maple syrup!  What is next?  

No Banana

Banana has not made the expanding menu cut.   Little man has had banana in the past, the symptoms have not been clear enough to continue or cut it, but last summer after 3 days, he had bright red flecks in his diapers so we didn't continue.    

A day a week or so back, we were at the Good Food store picking up some more maple syrup and peaches and his brother wanted banana's, he got little man excited about having banana's so I agreed to buy the banana's.   He couldn't wait to get home to eat a banana!  He was so excited, he ate most of a half of one!! Gobbled it down!  All was well and good until 4hrs later he had made a "stinky" diaper, and changing it revealed what looked like raw meat- blood mixed in, and a lot of it.   Sigh, same reaction as last summer only much quicker.  Yep, banana needs to be shelved.   Ten minutes later, another very large diaper with even more blood.  Shoot! And not even ten minutes later, another one!  Crap!! Is this going to get worse?  Are we going to see vomit?   Thankfully no, we did not but loose stools after eating banana is not ok and blood is most certainly not a good sign.   

This was actually right before the GI appointment a few weeks back and when we decided to add back in some of the Alimentum- because with the blood in his stool, he was going downhill fast again.  He had such adverse responses to the Alimentum- again making me think more of it being tied to his dissacharide (carbohydrate intolerance) deficiency because it is worse with a "flare".   After seeing the GI and getting the go ahead to stop the Alimentum, we did for a few days only to have him sink down again- low energy, pale color, disturbed sleep - not reflux but the same type when his iron is low, where he can't get to sleep or is awake in the middle of the night, insomnia).  We were planning on leaving for a long weekend (Memorial Day) and we don't want to be admitted to the hospital before that so we weigh the risks vs. benefits and decided to give him a few days of a few ounces of Alimentum again.  Back and forth and round and round and we still get the same symptoms- paleness, blue around his lips, then behavior issues, large volume stools, then disturbed sleep.  We just don't know what to make of it....clearly something isn't right... We hope he can make it through the weekend, through the travel.  We take along the Alimentum just in case....  

ProViMin Start

This weekend we went out of town.   We left on Friday, and little man did not drink his hemp milk formula all day- he was very pale and did not look well by Friday night - is this from the reintroduction of Alimentum or from taking it away??   He was sleeping a lot (not a bad thing for a travel day) but.... we were worried.  Saturday he continued to be very pale and low energy; so we decided by Saturday afternoon to give him some Alimentum in his bottles- just a 1/2-1oz. It really did help his energy and color.  And the other build symptoms didn't start creeping in until the drive home and even then, they were manageable.  Did we find a threshold?  Is this more clues to if it is enteropathy or carbohydrate intolerance?  Maybe.  Maybe we'll never know.  Maybe he'll be able to tolerate the ProViMin and we can simply move ahead.  

ProViMin is just that- Protein and Vitamin/Minerals.  It is a powder formula made for metabolic disorders.  It does not have carbohydrates and has very minimal fats (coconut oil), however it does have sodium caseinate, along with amino acids, for the protein source.   Sodium caseinate is a milk derivative.  A milk allergic person would be advised to avoid it, someone with a "light" milk allergy may be able to tolerate it- it would be the equivalent of a person allergic to milk but able to tolerate butter (doesn't happen very often).  We are essentially challenging dairy with the trial of this formula- although we will still have to trial other dairy separately.   

We started it this evening.  Tomorrow will tell us more of how he is doing, so far tonight he has been ok. 

Pizzelle Waffles

Pizzelle Waffles:

Combine:

5Tbsp. millet flour

1Tbsp potato starch

1/2tsp. baking powder (Hain)

1Tbsp. Hemp seed +1Tbsp. water

3Tbsp. oil

Can also add pure maple syrup to the batter.

Mix ingredients together.  Preheat Pizzelle, spray well and scoop 1Tbsp mix onto plates, close and set darkness (3 works well).

546 calories, 3.7 g protein, 43 g CHO and 41 g fat. 

Potato Pancakes

Potato Pancakes:

2 cups mashed potatoes (or grated)

¼ cup millet flour

2-3Tbsp. hemp seeds +2-3Tbsp. water

Generous amount of oil in pan, heat oil on medium high and cook pancakes until crisp.

Recipe provides approx. 225 cals, 4.5 g fat, 27 g CHO and 5.9 g protein

GI Appointment

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....

I had called earlier in the week to get a follow up appointment with the GI because of his Gtube.  The previous week, the surgeon's NP had said that their recommendation would be to put him under sedation to do a tube study.  A conversation with this NP on that Monday morning and she now felt he should have an endoscopy because it wasn't just the continuous granulation tissue that was concerning them, it was the continuous brown drainage that should not still be there with a tube that has had all these weeks to heal.   This tube is causing him daily pain and suffering and we can't decipher which symptoms are FPIES/adverse reactions to foods or tube pain and we're not even able to USE it so we agree- further evaluation needs to happen.  

By the end of that week, we not only need to talk to the GI about a tube evaluation but we need to talk about a new plan with the Alimentum and food trials...

We discuss about how he has been doing and how his Gtube is and where we are at and going.    She is sure he needs reflux medications; remindinh her there are none that he can tolerate.   She doesn't know how to treat him if she doesn't treat his apparent reflux/ulcer, attributing everything (including this tantrum) to the ulcer.  I don't mean to disagree with her but he has days where these tantrums are not anywhere near a part of the day, he has nights where he sleeps through the night, he has days where his tube doesn't ooze and isn't inflamed.  I just am not sure he has ulcer damage but agree that I would love to try and treat it- if it can be done safely.   We decide on sodium bicarbonate, in pharmacy dosing and strength, to at least neutralize the stomach acid for awhile.  She feels that the Gtube is causing the stomach to produce extra acid as this can be a normal response to a Gtube (the body naturally responds to the foreign object), she feels that the drainage from the tube (the brown gunk) is stomach acid....although does note that it is interesting/surprising that it is not breaking down his skin around the Gtube.   My suspicion is because it is stomach acid but it is not acidic. 

We discuss the Alimentum more and she hears our concerns over his tolerance of it, or our difficulty in finding or maintaining a tolerance of it and at first suggests we stay under 8oz of it per day and then later changes her mind and agrees we stop it altogether, in preparation to trial a new formula- one called ProViMin   So, the plan is to stop the Alimentum and start the Sodium bicarbonate as soon as we get the Rx for it (regular old baking soda is too hard to "dose").  

The Spiral

The lubricant kept Sam "off" for a full 10days, and wasn't until day 14 that we started to see his color come back again- otherwise he is a pale and pasty that has us worried.  I was so relieved when it did come back.   

In the meantime, his tolerance for the Alimentum dropped significantly.  I have never been able to really tell how he is doing on it- knowing that something isn't quite right but how off is it and how bad is it? is the question.  No vomit or diarrhea means no acute FPIES reaction but poor color, circulation (blue around his lips and eyes a lot and mottling on his skin), poor appetite (he doesn't ask for food when he has the Ali and no, it's not the calories because he takes in more calories when off it), increasingly poor sleep and mood/behavior and decreased play.  Any little wind blown in the wrong direction will set him off and he loses the ability to control his tantrums.  I know, you're thinking- what 2yr.old can control their tantrums but there is a huge difference between a "normal" 2yr.old tantrum and these possessed irrational tantrums he goes through. He has 3 stages of tantrums- 1). normal 2yr.old, 2). unreasonable and intense and 3). irrational, unrecognizable, possessed.   When he escalates to #3- we know we must stop and assess the situation because they really are not his true nature but feel it is his way of telling us he hurts.  We were getting more and more #3 tantrums with continued Alimentum.   Exhausted one day last week and busy running errands- I did not add the Alimentum to his afternoon bottles and what was becoming a typical evening meltdown fest, was much-much less and easier to control.   I really started to wonder what the Alimentum could be doing to his system?    And, even bigger question- why?   What from? What was causing this? Dissacharide deficiency (carbohydrate intolerance) or FPIES or something else?   Whatever the answer, his quality of life and ours was increasingly declining.   The stress it has on all of the family members to tip-toe around a 2yr.old's insane screaming tantrums is beyond any words I can describe here (especially since I'm still a bit sleep deprived from it all).  

So, that was Tuesday and then Wednesday we skipped Alimentum altogether and he was an angel.  So, so, so nice to see him just PLAY and BE TWO and ENJOY his brothers and his toys, and books, and to SLEEP for a normal nap and wake only 1-2times/night instead of oh-so-many-more-times.  Clearly, clearly, something is NOT right- but if it is the sugar, can we find a dose that works for him?   If it is the sugar, maybe it is worse after a reaction when he gut is inflammed so we just need to cut back after a reaction and then slowly build him back up again?   But wait, after a reaction is exactly why he needs this formula so badly to begin with.  And if he's on it at other times, he doesn't want to eat food - so then we can't trial actual FOOD....ok, if he was 6-9mo., maybe this would work better because of the nutrients it provides him- we could ride the line a bit longer but he's not 9mo., he's almost 3, he needs FOOD, and we've been riding this line for 3 mo. now and it is quickly reminiscent of his Neocate days (except on Neocate, he vomited and was much more miserable but are we simply building to that?).   What can we do?  What should we do?  

By the end of that week, he seemed to be fully over the lubricant inflammation and he seemed to be so much better with the removal of the Alimentum but we aren't ready to just throw it out yet, maybe we can find a threshold (if it is just the sugars)?  So, Thursday we gave him more Alimentum -  wanting to sort of push it so we could be sure it wasn't FPIES, so we did- adding 2oz. to each 4oz. hemp milk bottle and by the mid-afternoon he was a MESS!  He was tantruming, he was unreasonable, he was pale, he was not interested in eating, or playing, or sleeping, or....it was a rough rough day and becoming more clear that we needed a new plan - a plan that did not involve Alimentum.  

Oh, and his tube?  STILL unable to use it!! It's been WEEKS, it causes him pain every day- I don't even know exactly how much except that it is too tender to touch....even watching him playing, he will guard it and pull away from something that may rub on it.  It oozes brown/yellow drainage all the time and the granulation tissue comes and goes and often bleeds.   

He needs a new plan, and we have a GI appointment coming up....

Peach fruit cups

Processing peaches while they are in season (Georgia peaches are our favorite!).  I am buying them by the case, and for the most part- Little Man enjoys the pureed peaches. However, I am wanting to give him some different textures, but can not use any sugars to "can" diced fruits so I am using some of the peach puree to put the diced peaches in. And then, for added fun- freezing them in fun shapes! 

Celebrating Food Allergy Awareness Week 2012

Aside from the fact that I am so far behind on updating here on how Little Man has been getting along (it's been a busy few months), we are celebrating Food Allergy Awareness week by raising awareness to FPIES....a food allergy of the gastrointestinal tract. Today, The FPIES Foundation launched a video created for Food Allergy Awareness Week to honor FPIES and put faces (and sentiments!) to this invisible illness.  I would be honored if you would watch it.

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....

Speech Therapy Evaluation

I have expressed my concerns for his speech for many months- recognizing that he wasn't at where my other boys were for his age and stages; but since he has always fallen "in the window", this has never been something that has been recommended as a further evaluation.   He processes concepts well and follows directions, he can say words- he just doesn't put everything into sentences like he should be doing by now, and he can't articulate what he wants to say, also some sounds are mixed up.   

Well, that is pretty much what the evaluation told us as well.   He actually sits right on the line- not necessarily needing speech therapy from a medical standpoint because he can repeat the words (some with mixed up sounds), he can process, and follow directions as well.   He just has lacked the practice in the everyday speech- with so many hospitalizations and illnesses, he is just understandably behind the curve.    She did recommend that we seek private speech therapy and get an evaluation through the school system as well because he would benefit from being followed closely since clearly his illness has put a kink in his learning and practice of his vocabulary.    

It was a good appointment- it was good to see him "tested" on what he can do, and what he can do when prompted/taught. There were some areas that covered concepts (understanding pieces of a story) and he was able to complete those, she commented that those were at the 4yr.old level.  I can see area's that we could work with him more on, practicing sounds and repeating words, and I see areas that we will clearly need help helping him.  So, we will definitely check into the private speech therapy and the school system evaluations and see what help we can get.  

My goal is to get help so we can help him optimize his potential and lessen the gaps that the chronic components of his FPIES has created. 

It's Proprietary....

....means the company does not need to release the information of the ingredients.   This very often means we can't take the risk of using their products.  Unfortunately this appears more often than you would expect- especially with allergen acts and labeling laws to help protect individuals.  The sad thing is, I'm not asking for someone else to protect my child, or change anything about the way they do things- but I do need all the information to be able to protect him myself.   The answer "it's proprietary" means Russian roulette to us.  It means I can do the research as far as it will take me to know what the ingredients are typically derived from and take the chance, or avoid altogether.   

Well, this reaction wasn't even from FOOD.   It turns out the lubricant (Surgilube)....which doesn't have a label law since it's not a food but being a chemical, it has what is called a MSDS (Material Safety Data Sheet)    The ingredients are Hypromellose and Propylene Glycol.   I recognize propylene glycol immediately- that is a-typically-derived-from-corn ingredient.   Hypromellose is a substance made using ethanols- and what are ethanols a gas of?  You guessed it.  Corn.  

Of all the things you think you never even have to think about.  But this is the 3rd time he has had reactions to lubricant.  Once was when we used it to help with his severe dry and cracked lips the first time he was on TPN (he was dehydrated on TPN?  Yeah, well...).   Anyway, the next time was the NG tube.  And his scope at the time of his G tube placement showed inflammation - we suspect due to the darn lubricant (that we didn't even realize was being used until the 3rd replacement of his tube; a tube replacement without it resulted in no symptoms and better tolerance of his feeds).   

I am still kicking myself for not registering that she was using lubricant to replace his Gtube last Friday.  Yesterday afternoon was the first day he started showing no further symptoms- since Friday,he's run through the symptoms of flushing of his cheeks, loose stools causing an itchy, sore diaper rash (acts yeasty but doesn't look yeasty), decreased appetite,increased whining, decreased play, and some sleep disturbances, 5 day of symptoms from a tsp or less of lubricant!  Lesson learned, finally....no more lubricant.    

I called the NP from the surgeon's office and spoke to her about it, verifying that she did indeed use a small amount of lubricant.  She was baffled that this would cause symptoms but assured me that she would add this to his list of allergens on his chart to alert others to help us avoid this in the future.  But like my hubby pointed out- she wouldn't have checked allergens before using lubricant anyway!  It will be there, for verification and alerts but we still will have to remain vigilant.   Corn allergy really, really sucks- we aren't just avoiding foods....

Either way, we're past it.  His tube site looks much better!!  He isn't acting like it is as tender but it is as if he is just now starting the true healing process.   We haven't used it in 2 weeks, or longer? So discouraging, but just trying to hold out hope that if we let him guide us and let it truly heal- we will be able to use it soon.   He is drinking 2oz. of the Alimentum with every 4-5oz.bottle of hemp milk so he is getting some of it everyday- which is really good because once we are able to use the tube, we won't have to do as many "feeds" and yet will still get the benefits of the feeds and using the tube to keep him thriving and safe, and his quality of life and ours, increased.  We still hold out hope to get there anyway....