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."

Saturday, April 21, 2012

Potatoes and Good Days!

Ok, NOW we get to the good days!!   Despite all the granulation tissue and tube issues this week...we are having a good week because Little man is tolerating potato!!!    
It started last Sunday when we had decided we would discuss adding the beet root compounded VIt.C (it would be a trial) to his Alimentum feeds- even if we could only get one Ali feed in per day, we could use that feed to get him all his Vit.C (the biggest missing nutrient from his hemp milk formula and the amount of peaches he eats isn't enough to fill in the gaps when he is low).   We went to an evening church Mass and after church, we have potluck and it was right at dinnertime and someone made some really yummy smelling dishes- everyone was hungry!  Including Little man!  He took his place in the buffet line and grabbed a plate and fork and asked for food.   

Many meals at home are hard for him too, the smell of the food (natural instincts), the gathering of the family,...he wants to be included too.  And we WANT him to be included too- and for it to remain a positive experience for him, not one where he feels left out or deprived.   So, we've found safe ways to include him, but somedays (even at home) we miss the mark and either nothing is distracting enough from everyone eating and him not, or I don't have anything to offer him.    Today, at this potluck, was a combination of both.   People were gathering, I was there alone with the boys (hubby working) so no one to take him out to distract him + yummy smelling food + a desire to be included (kids his size and age grabbing plates)+ dinner time= hungry....but I did not have anything for him!!   I, of course, brought his bottles so I offered him that to which he said "yes" he wanted his bottle.   He claimed his spot at the table, fork in hand, with his empty plate.   I got him his warmed bottle and he looked around and declared he did not want his bottle.   I ran to the van to see if I had some millet puffs stashed away- he hasn't had them in a long time but maybe he would be distracted by this safe snack.  But, no puffs.  Shoot!   I went back in and scanned the buffet line, a clean fresh garden salad- lettuce, cucumbers, peppers.  He hasn't reacted to any of these foods, they aren't UNsafe, so I put some on a plate and hand them to him- he is excited at first but then not as distracted as I had hoped.  I decided, on a-still-don't-know-what-made-me-do-it-whim to give him some mashed potatoes!  I knew they weren't boxed potatoes, but that they likely did have milk and butter in them.   But I am still encouraged that him not having any acute reactions to Alimentum (a broken down milk protein he had previously reacted to as an infant) means that he is outgrowing/outgrown of his milk allergy (and the only way to know is to have him try it).   We aren't in any rush to try dairy because of fear that it would sensitize him to the broken down dairy in his formula but he hasn't had an acute reaction to it....I made the quick decision to take the chance - on potato and on dairy, and let him have a tablespoon or two.   On the back burner in my mind is his growing POSITIVE relationship with food- to be included, to try new foods, to learn to eat and thrive on eating.  FPIES doesn't get easier as they get older, the challenges just change.

I put a tablespoon on a small plate and he devoured it!!  Well, nibble by nibble in the way he devours food!   I nervously sat and watched, immediate reactions of hives or anaphylaxis aren't our concern but this could be a long evening and a set back....was this a weak moment or a good decision??   He asks for MORE, he ate another 1tbsp or so.   I decide I better find out exactly how she made them, and what ingredients were included.    Real potatoes, milk and butter....but she usually also adds sour cream and cream cheese (they are REALLY good and popular and she makes them every potluck!), today she did not.   She even comments on THIS being the reason why....everything happens for a reason.   

We got home and he was overtired, and had a few tantrums and I was getting really nervous that this was the beginning of a reaction....mixed emotions were setting in- guilt, anger, fear....I finally got him to settle down and he fell into a deep sleep.   Huge sigh of relief as I watched the clock.   It was 5:15pm when he ate the potatoes, typically it takes 6-9hrs (sometimes longer although he is NOT the norm because it is usually 2-6hrs) when we see a reaction.  11:30pm came and went, 12:30, 2:30, dawn, he woke up happy and ready for the day!  What??!?!!  NO vomit??!   No middle of the night choking on green vomit fest??!   

Ok, dairy ingestion aside (cross that bridge another day) but this is a GREAT sign for potato!!   We have done potato a few times in the past few months and some days it went ok and other days he had symptomes.   We had started with baked potato.   One  day, an unplanned trial (kinda like the one above) began when I had gone to Wendy's for dinner for the boys - I decided to include Sam and get a baked potato (plain of course), dinner "on the go" just like his brothers (they get the baked potatoes too)- he was THRILLED and ate a few bites.   That night, NO reaction symptoms and the boys started to think of ways to add potato to his diet.    The timing wasn't good and we decided to not proceed with a full trial since we couldn't risk a reaction at that time.    We came back to potato during Dec/Jan trials we were doing.   Baked potato worked once or twice but he lost interest quickly, so I found some potato chips NOT made with corn or vegetable oil (the oil used was sunflower or safflower; he is safe on safflower but sunflower hasn't ever been fully trialed.  We got vomit - FPIES bile vomit- from these chips, changed brands (still same oils), also vomit.  Was it potato or the oils?   The oils won't always cause a reaction in FPIES kids, but little man has had reactions to oils (corn) so we can't be sure.    

Tolerating the mashed potatoes is REALLY encouraging!    Monday morning, his brother asked for a snack and so little man did too- this isn't new....he often asks for a snack when his brother does, everyday hopeful that he will one day get to eat what his brothers eat.   Monday, I decided it was time to pull down the bag of CheeCha Puff snacks!!  They are potato starch, potato flour and salt.   They are puffs shaped like wheels, a company from Canada and you can only buy them online (Amazon).  I got 3 sample bags from the MN Food Allergy Support Group Fair this past fall from The FPIES Foundation samples CheeCha puffs donated to give out (cases of full size bags!).   Since you can only order them online, and by the case, I took advantage of the samples to have enough to do a trial before we buy the case. 

He ate half the bag the first day!!!!  He finished 2 bags by Thursday!!  He LOVES them, and has been eating them constantly!!  We SHOULD be able to call potato a pass, with such large amounts consumed with NO symptoms of concern....but I'm nervous to say "pass" just yet.   But, he's getting them as if he had....he couldn't be happier!!!   

So, there is our good days!   So many other things going on but he is tolerating a NEW food, a 6th food to his safe food list, something he can have in a convenient snack too! Something that he can eat in large quantities without causing issues with this carbohydrate intolerance (they are puffs of air), something thatmakes him feel included and BE included.  


  1. I would like to suggest that you stick to loose potatoes when buying them. The ones in the bags are usually gassed with ethylene (corn-derived) to prevent sprouting. If you find a safe potato, stick with it and make sure the produce manager or farmers market vendor does not ever refill the loose potato bin with bagged potatoes. We also have much better luck with new potatoes from the farmers market in season rather than baking potatoes from the grocery store.

    Here is a list of corn-free foods: Please remember that brand name is important because of hidden corn concerns (ethylene gassing, cornstarch in packaging, etc.).

  2. I just recently read about the gassing of potatoes...thanks for sharing that. I will be more careful, loose potatoes- good point.