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, May 2, 2012

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, 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....


  1. Good for you for catching the lubricant!! There is very little that modern medicine will have available for your son that doesn't involve at least one corn derivative.....steroid creams, benedryl (are you compounding meds?), lubricants, pain meds, maybe even the tube itself is corny. We've become quite adept at making our own herbal medicine and pure organic coconut oil based salves and balms. I would like to suggest that you trial coconut as there is a wonderful company making lotions, lip balms, soaps and such from pure, organic virgin coconut oil. Tropical Traditions gold label coconut oil is a very important part of our household and I highly recommend it. Also, if he could tolerate coconut oil, there is a vitamin D drop that might work for him.

    I know you are struggling to get enough vitamins into him....have you considered rosehips tea for vitamin C or yellow dock root for iron? I buy all my herbs and teas from Mountain Rose Herbs since purity is a big concern for us. I also make calendula ointment and tea tree oil (steam distilled only!) salves to combat infection - both are in the pure coconut oil base. Coconut oil is so perfect because it is already antifungal and antibacterial and it melts at 76 degrees.

  2. Yes, I suspect the tube itself is an issue. This 2nd one he has in now is causing much less irritation but realistically, I think it has to be removed for him to heal.
    I haven't had success with coconut yet...everytime I try, he has I'm taking it slowly.