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."

Friday, February 10, 2012

Why Alimentum Ready to Feed, Why now?

Alimentum Ready to Feed (Ali RTF) is a casein hydrolysate (pre-digested/broken down) based formula that is NOT in a corn syrup base.    In fact, it is completely corn free!  It is in a tapioca based syrup.

Hydrolysate formula's are considered hypoallergenic because they are a broken down proteins, broken down enough so that many (most) allergic people can tolerate them (dependent on the severity of the allergy) they are typically the first stop before proceeding to an elemental formula when allergies are presenting in an infant.

So, why haven't we used it before?   Little man's dairy allergy was severe and sensitive, and he reacted to Nutramagin tried two separate times.   Once we discovered he had a corn allergy, we wondered if he had reacted to the corn in the formula or the dairy (casein hydrolsate) but after speaking to the allergist who diagnosed him, he felt his symptoms with dairy and soy- through breastmilk and other formula's indicated he had both Milk/Soy FPIES and solid food (grains) FPIES and we needed to avoid dairy for the time being.  There was no weighted need to risk making him sick when we knew small exposures of dairy resulted in vomiting and diarrhea.   Once we had him on elemental formula only for 5mo. with no improvement (and worsening) of symptoms, our suspicions of the corn allergy were confirmed and I began to come up with a homemade formula.   I used tapioca starch as the carbohydrate/syrup base and this resulted in a myriad of symptoms which ended in dumping diarrhea that dehydrated him and landed him in the hospital for metabolic acidosis.  Alimentum RTF was not an option for more reason than one.

So, I began making him a homemade formula, with hemp milk and hemp protein as the base and safflower oil for added fats and arrowroot starch for just enough carbohydrate source.  But it was lacking in adequate B vitamins (being a plant based protein, although a rich protein itself), a few other micronutrients and the biggest missing nutrient was Vit.C.  Our first trial was peaches, for the Vit.C.   Before we took away food at 7mo., peaches were something he enjoyed.   Thankfully he passed peaches but he wasn't always eating enough of them for his growing needs.   We spend the next year trying to find foods or vitamins that he could tolerate to fill in the gaps that the homemade formula had.   He continued to grow and gain weight and develop well; but with repeated reactions and intestinal damage (from us having to push through food trials to find him more nutrients);  often malabsorbing following a reaction, he struggled to maintain above the line.   We challenged soy at 18mo. in hopes to give him a formula (Ross Carbohydrate Free - RCF- is a non-corn syrup base formula) but that was a terrible fail resulting in villi damage to his intestines such that he lost weight and protein stores quickly, an endoscopy revealed the villous atrophy and TPN (IV nutrition) was promptly started.   That was over a year ago.   He stayed on TPN for 5weeks and healed his intestines.   We challenged a vitamin, probiotics, more varied foods, and he continued to have symptoms that would not allow us to continue giving him the foods - how do you keep giving a child with severe anemia foods that cause blood in the stool?   How do you keep giving a child a food he refuses to eat because it is causing so much pain and disruption to his quality of life?   How do you give a child a food that makes him vomit?  We don't, we can't....symptoms like these are too hard to push through with his fragile system.   But surely there is more foods his body will accept?   Something must be out there?

In the spring, a cross contamination reaction while we are out of town scares him from eating his peaches and within 4mo. he develops full scurvy, which seemed to come on very suddenly in conjunction with a trial of a new probiotic strains.   That was this past summer.   That was when it was decided to stop searching for foods to fill in his nutrients and to give his gut a rest, his body a time to catch up on growth, and a PICC line was again inserted for more TPN (IV nutrition).  

Now, 6months after TPN was started, and after catch up growth and gut rest- his risk of line infection/sepsis remains high, as well as the risk of the damage to his kidney's and liver, and his gut is not healed- repeated follow up endoscopies reveal continued villi damage, and even though he had adequate weight gain, he has stopped gaining weight, again.   The discussion is that TPN is no longer worth the risks and not meeting his needs.   We must do something different.

So, we decide on Alimentum RTF and we decide now is the time.


  1. Joy, I really hope it goes well. Sending some prayers for your and your little man.

  2. I hope it works.

  3. I've been thinking about you guys a lot lately. I really hope Ali RTF is a pass

  4. I found your blog through the BabyCentre website (started looking at the MSPI and FPIES boards due to my son's allergies) and have been reading your blog for a couple of months now. How did the RTF trial go? Its worrisome because you have not posted in so long. Hope everything is okay!

  5. It has been a full few weeks. Sam is ok, and my blog calls me everyday with all the updates I need to do- I hope to get to it soon! When there is a lot of "mud", it gets hard to have the proper perspective for my posts. We're treading water...

  6. I'm glad everyone is "okay" and that you just have a lot going on. Your blog was invaluable to me before/while I was figuring out what was going on with my son. It really made me consider sources of allergens that I did not previously consider. Your story also gave me the strength to "hang in there." Not that we really have a choice, but everyday was such a battle. Thanks for everything and while it may sound trite, I really do hope your son gets better soon.