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."

Sunday, October 17, 2010

How is Little Man?

I wish I could answer this and know the answer I gave was accurate.  But I do not know.   His anemia is keeping him laying low most days.  We will likely get his levels checked again sometime this week to check on it.   I'm not sure if this is what is causing all his random off baseline things we have been seeing, or if it is from food trials - although we see this even if he hasn't had food that day as we are taking it super-super slow with the food trials.   We stopped millet- it was looking non-FPIES but may have had some digestion issues but seemed better with the cooked porridge but then he didn't want to eat it.   So we stopped, took a few days off and then started his plum trial.  Plums are more questionable than millet was!  But he likes them better!   I want to be able to call them both a pass -so I can put the plums in the millet and flavor it, giving him something fun and tasty to eat that is also adding to his nutrition!  I am trying to be patient.  Patience is what I hear from the other moms, slow but sure and watching closely.   Also "met" a mom with a 5yr.old little boy with FPIES online this weekend; she has great wisdom to share....sharing that using the most liquid/puree form of the food and then working the way up as tolerated -- and slowly!  And if there is a digestion issue, than stop the food.   FPIES or not, if he can not tolerate it, he can't tolerate it.  I agree- no child should have to have so much pain just from eating such small amounts of food.    The question is: is it from the food trials?   Is it from teething?  Is it from the iron?  Is it from the anemia?  I believe the disturbed sleep is from the iron or the anemia;  I think the decreased appetite is from the anemia - he takes an average of 700cal/day- at least 300 less than what he needs to gain weight!  Although he expends a lot less energy. We are frequently carrying him around, he plays well on his own but he doesn't run as much as he did a month or so ago.  I imagine he is just tired.  I don't like seeing him like this but the benefit still does not outweigh the risk for a transfusion, but I will be glad when he beats this and he can feel better and run and play more.    We took him in for a weight check, as we do this often throughout his illness.  It has been one way to monitor his reactions and how long it takes for him to heal, and if he is eating enough- calorically, or absorbing enough nutrients.   The good news is he hasn't lost!  Even with 2weeks of eating 300 less calories than his needs;  he hasn't gained much but has a tiny bit....and he hasn't lost!
Today, he woke up stuffy and with a low grade fever, remained "clingy" all day and then threw up this afternoon.   We have no idea what caused it.  It wasn't violent so whatever it was it was only "mild".  He felt better after his nap.    What is causing all this?   How do we proceed when we are barely moving and we are getting all these mysterious signs/symptoms.   Can we attribute it all to his anemia?   What if he is slowly building towards a reaction?  What if he is having blood in stools again?   His last positive stool samples, we couldn't even visually see the blood- it was microscopic.  
We see GI on Tuesday, an Allergist (this will make #4 for Allergists, #1-no FPIES, #2, absolutely no doubt FPIES, #3- confirms FPIES, #4 - ?).  We need this 4th Allergist because he is the one actually in the clinic where the rest of his team is.  We only ask that he be open minded, and willing to learn so he can help Little Man. 
We will proceed with food trials tomorrow, I think....

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