Acidic Bile Vomit

The other day, I came across this picture....from January, a year ago.  I had washed it 2-3 times by the time I took this picture....and then threw it away.   The pillow looked dirty when it was clean.  I took the picture before I threw it away.  Why take the picture?  Because I am still in disbelief of how this vomit stains EVERYTHING! Before the FPIES diagnosis, or knowledge of anything FPIES- I threw away shirts with these same stains on them- both Little Man's and mine. I would throw them in the wash IMMEDIATELY -we always had a full load by the time the vomiting was done, all the towels it took to soak it up, the bed sheets, the clothes we were wearing, the washcloths used to clean up...and they would always stain.  The stains remain on the mattresses, the pillow themselves, as well as blankets and sheets we are not throwing away, and the some spots on our carpet....yellow vivid stains. A reminder when I change sheets of these long nights....

Bile vomit is very, very acidic. It stains everything. This pillow....this night...the vomit was scary. It made me think of all the times he was alone in his crib, not even waking up to vomit (the allergist who diagnosed him said this was indicative of shock- where they don't even...can't even, wake up to vomit).  This night, the story this pillow tells....a night in January when little man was (unknowingly) reacting to sunflower lecithin that had recently been added to his previously safe Living Harvest Tempt  Unflavored/Unsweetened Hemp milk.  It was 3 nights of green vomit around midnight before we figured out it was the hemp milk (that was previously safe when it did not contain sunflower lecithin).  This night, this last night before we discovered it was the sunflower lecithin  I had just laid my head down on the pillow next to him (hubby or I took turns sleeping with him while he was on TPN- IV nutrition, as his IV line was a central line, we didn't want him twisting and turning in the night and getting tangled in his lines).  I had just laid my head down and I heard this gushing sound...like the sound of the toilet overflowing. I jumped and looked towards the bathroom- expecting to see one of my other boys running out of the bathroom- trying to find help for an overflowing toilet.  Except as I sat up, I realized it was Little Man because he the gushing happened again- he wasn't even awake, barely lifting his head off the pillow to vomit this green substance.  I scooped him up and had him in the bathroom a few seconds later (right across the hall from his room) to finish emptying the contents of his stomach in the sink.   I just can't forget that sound....the gushing of vomit, and looking over at him to see his eyes not even open and more vomiting coming....FPIES sucks.

Why share this?   Why share this scary story?  Because this is the reality of an FPIES child, of an FPIES family.   The amount of vomiting that little man has experienced is not normal, not ok, not healthy.   The amount of vomit we have had to clean up, his brothers have had to watch him experience, we have had to help him through....all more than one child should have to endure for sure.  But all the stark reality of these children and families. Maybe this will change one day, maybe more will be known about the mechanisms of this allergic response and future generations will not have to go through so much....it begins with this, sharing our stories (yes, even the 'scary' ones), it starts with awareness of what FPIES is....

Sunflower Suspicions

Sunflower derived Vit.E was in the Living Harvest hemp protein powder that we used to use (until they discontinued it earlier this year).  I always had a reservation of how he was doing with that derivative but until I found the Manitoba Harvest brand powder he is on now, we couldn't move away from it –and the symptoms were never obvious or severe enough to do that.    Recently, I tried the potato chips, with caution because the oil was sunflower….still not sure about it.    Following the potato chip vomit, the suspected pineapple, and then coconut, we decided it was enough.  We were done trialing anymore foods- he needed to rest and his gut needed to recuperate; and we needed to regroup.  We aren't getting anywhere but a sick little boy.

Then he had a vomit session after sucking on some bathwater, that has happened before but not since he was on formula; and with formula he was chronically reacting to the trace proteins of corn which was making him extra sensitive to his environment.  So, was it from the recent fails?  His body was on high alert?  I suspected so, but was incredibly discouraged by it because it seemed to really make him sick…one reaction to much for his tired body.   I am saddened by seeing him like this, saddened he had to get to this sick.  And now to see him react to bath water….from a bath he shouldn’t have had but he wanted so badly….The PICC line is in his chest, it is difficult to wrap in a way that a 2yr.old would not get it wet and getting it wet would increase the risk for infection; so it has not been worth it.   We do sponge baths and it is sufficient to keep him clean but a little boy just wants to play in the tub! 

Well, 2 nights after the bath water vomit session, he had another random vomit session, and then 2 nights later- again.  What is going on?  As I’m cleaning him up, and washing sheets and just sad that he is this sick again- this sick that he hasn’t been since he was 7-11mo.old….when he was having chronic reactions to his formula; but he hasn’t been eating anything but his hemp milk.  His hemp milk….I took one out of the cupboard and read the ingredients…wait, how long has THAT been there?   Sunflower Lecithin?!  Is this what the random vomits are from?  Is he sensitized to sunflower enough to have him having these vomit sessions from it in this form?   A lecithin is the fat from the oil, “technically” it shouldn’t have proteins and shouldn’t cause an allergic reaction; but FPIES doesn’t follow those rules and avoiding the food in any form, trace and contamination of is advised - especially when you are seeing random vomit sessions.  Now, could it be from a sensitive system from all the repeated fails of the past weeks?   Quite possibly, and hopefully but I dig back to the back of my cupboard and find 7 cartons of the some other hemp milk from before I bought this new case; sure enough it does not contain sunflower lecithin so this is a new addition.   I contact the company to get more information about it and confirm it has recently been added- it will help the product not separate is what they tell me.   The switch back to the old version resolves the vomiting....which is both good and bad, good for little man; but not a good sign for the sunflower lecithin being the culprit to his problems.  C.R.A.P, maybe it’s time to panic now?  

Now he was getting more sick by the day, his lab draw that week confirms it is because his anemia is bad again- and his body is weak.   He can’t tolerate the trial of the sunflower lecithin and some friends suggest buying out what is on shelves in stores now, and shipping it to us.   I posted this on my facebook profile and the response has been amazing!!  Friends and family are checking shelves all over, finding a carton here and a carton there, a few dozen cartons are found and so far we have an almost 3mo. supply!!  We have the chance to get him well again before we need to address challenging the sunflower lecithin; or switching him over to a homemade hemp milk (can be made in a blender and then strained –we’ve tried it but the seeds are still not small enough for his bottle nipple.  He’s 2 ½ yrs old so really could transition off the bottle but it is how he gets his hemp milk, his nutrition, I had no intentions of even trying to change him over but maybe we will need to.   Thankfully though, we can do it when he is at a better baseline, which he is not right now.  Thanks to some amazing family and friends….