Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Wednesday, February 1, 2012

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….


  1. I'm SO SO sorry to hear this. :( I'm glad he is feeling better now that he has had his transfusion but it's so hard to see these little ones so sick. It's even harder when you cant figure out why. Glad you thought to look! We do ok with Caleb's formula (good start 2) but he still gets diarrhea if we give him too much powder per bottle. I know we need to figure out what to switch him to but the thought of something worse than a bit of diarrhea terrifies me! I haven't mentioned this on facebook but I developed a panic disorder after my first son was born and have only just gotten it under control in the past 6 months. I have a puke phobia. Of course it is much better now that i have had Caleb (no choice right??) but it makes deciding to trial even harder. Not only am I consciously making the decision to give him something that will probably make him sick I'm consciously putting myself in a situation that will make me panic. It's a no win situation. Sorry, rambling again. Just wanted you to know i feel for you!!

    1. Hi Lisa! I know just what you mean. I have done posts on it- how I have gotten through, coping strategies I use. I think I even did a post on PTSD (post traumatic stress disorder)- because to me, that is what it feels like at times. I did one called "I pace myself"- one of my coping mechanisms is to accept that this does change our life- not for the worse but just different than I had planned, so I have learned to "go with it" more and not put extra stresses on myself- thus making it easier to deal with the stresses that are there (because of the unknowns of FPIES). If you search my tags- and look for "coping"- I have quite a few posts on this subject! Blogging is coping for me too! :)