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."

Thursday, May 17, 2012

The Spiral

The lubricant kept Sam "off" for a full 10days, and wasn't until day 14 that we started to see his color come back again- otherwise he is a pale and pasty that has us worried.  I was so relieved when it did come back.   

In the meantime, his tolerance for the Alimentum dropped significantly.  I have never been able to really tell how he is doing on it- knowing that something isn't quite right but how off is it and how bad is it? is the question.  No vomit or diarrhea means no acute FPIES reaction but poor color, circulation (blue around his lips and eyes a lot and mottling on his skin), poor appetite (he doesn't ask for food when he has the Ali and no, it's not the calories because he takes in more calories when off it), increasingly poor sleep and mood/behavior and decreased play.  Any little wind blown in the wrong direction will set him off and he loses the ability to control his tantrums.  I know, you're thinking- what 2yr.old can control their tantrums but there is a huge difference between a "normal" 2yr.old tantrum and these possessed irrational tantrums he goes through. He has 3 stages of tantrums- 1). normal 2yr.old, 2). unreasonable and intense and 3). irrational, unrecognizable, possessed.   When he escalates to #3- we know we must stop and assess the situation because they really are not his true nature but feel it is his way of telling us he hurts.  We were getting more and more #3 tantrums with continued Alimentum.   Exhausted one day last week and busy running errands- I did not add the Alimentum to his afternoon bottles and what was becoming a typical evening meltdown fest, was much-much less and easier to control.   I really started to wonder what the Alimentum could be doing to his system?    And, even bigger question- why?   What from? What was causing this? Dissacharide deficiency (carbohydrate intolerance) or FPIES or something else?   Whatever the answer, his quality of life and ours was increasingly declining.   The stress it has on all of the family members to tip-toe around a 2yr.old's insane screaming tantrums is beyond any words I can describe here (especially since I'm still a bit sleep deprived from it all).  

So, that was Tuesday and then Wednesday we skipped Alimentum altogether and he was an angel.  So, so, so nice to see him just PLAY and BE TWO and ENJOY his brothers and his toys, and books, and to SLEEP for a normal nap and wake only 1-2times/night instead of oh-so-many-more-times.  Clearly, clearly, something is NOT right- but if it is the sugar, can we find a dose that works for him?   If it is the sugar, maybe it is worse after a reaction when he gut is inflammed so we just need to cut back after a reaction and then slowly build him back up again?   But wait, after a reaction is exactly why he needs this formula so badly to begin with.  And if he's on it at other times, he doesn't want to eat food - so then we can't trial actual FOOD....ok, if he was 6-9mo., maybe this would work better because of the nutrients it provides him- we could ride the line a bit longer but he's not 9mo., he's almost 3, he needs FOOD, and we've been riding this line for 3 mo. now and it is quickly reminiscent of his Neocate days (except on Neocate, he vomited and was much more miserable but are we simply building to that?).   What can we do?  What should we do?  

By the end of that week, he seemed to be fully over the lubricant inflammation and he seemed to be so much better with the removal of the Alimentum but we aren't ready to just throw it out yet, maybe we can find a threshold (if it is just the sugars)?  So, Thursday we gave him more Alimentum -  wanting to sort of push it so we could be sure it wasn't FPIES, so we did- adding 2oz. to each 4oz. hemp milk bottle and by the mid-afternoon he was a MESS!  He was tantruming, he was unreasonable, he was pale, he was not interested in eating, or playing, or sleeping, was a rough rough day and becoming more clear that we needed a new plan - a plan that did not involve Alimentum.  

Oh, and his tube?  STILL unable to use it!! It's been WEEKS, it causes him pain every day- I don't even know exactly how much except that it is too tender to touch....even watching him playing, he will guard it and pull away from something that may rub on it.  It oozes brown/yellow drainage all the time and the granulation tissue comes and goes and often bleeds.   

He needs a new plan, and we have a GI appointment coming up....

No comments:

Post a Comment