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, or....it 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....

Processing...Formula, NG tubes, and G tubes- oh my!

This term is a term that I have used a lot on this journey.   A fellow FPIES mom used it in the support groups in response to someone's post about a full doctors appointment one day.   There is so much to learn with an unknown diagnosis like FPIES, and then add in to that that it will manifest itself differently in your child and that your doctors may not be as familiar as others, and the decisions that you need to make for your own child and their health, well being, safety and quality of life.   So there is a lot of processing.   

Processing research and medical journal articles, processing the symptoms in your child, processing the differences between "normal" baby/toddler characteristics and what may be a reaction/allergy symptom with this delayed allergy, processing recommendations, extra processing of recommendations from doctors not familiar with FPIES, processing next steps, processing what is best for your child within those recommendations, processing, processing,...

This weekend, I began truly processing the need for our Little Man to have a feeding tube, a G tube.  He has a type of feeding tube right now, an NG (nasogastric) tube, to feed him the Alimentum he refuses to drink.  It is an infant formula, and smells horrible.  He has always been picky about his formula since switching from other commercial formula's to Hemp milk formula I make for him.   He notices small changes in that formula, so it has been difficult to add anything to it, to even be able to "trial" new ingredients to add to it.    Add to that that we have searched high and low for ingredients to supplement to this formula that do not contain corn.   He was missing some B vitamins and Vit.C mainly, but also a handful or so of other micronutrients.   The biggest problem was not necessarily the other nutrients but finding a vitamin that did not use corn as it's source of Vit.C.   And then there was always the constant, why not give him a food with these nutrients vs. a supplement.   His corn trigger has made this extra challenging.   

And then this is where my processing gets thick...My head knows better, the dietetics part of my brain knows better- that if a feeding tube is what he needs to get proper nutrition for growth and development right now, then it is the best thing for him.  it isn't forever, and hopefully neither is his FPIES, but it is what he needs right now.   It will have other benefits for him and his FPIES specific needs as well, benefits that outweigh the risks.   

He will not only get the nutrients he lacks in his hemp milk formula, we could test and build his tolerance to foods via a formula through the tube...utilizing his Alimentum as a base and adding a teaspoon at a time of (pureed) foods to it to trial and potentially build his tolerance.  Once a food is found to be safe, we can safely introduce it into his diet....thus encouraging him to eat foods that we know will not later cause symptoms or vomiting, and also- not have to take away a food (this has been a challenge for him, and confusing to have foods one day and then lose that food the next).  As we add safe foods that he still won't eat, we will be able to add them to his Alimentum formula via the tube; and thus decrease the amount of Alimentum he needs (very high volumes right now to get him all the nutrients he needs since it is an infant formula).  There is also the "convenience" of assuring his nutrition needs will be met everyday (via the tube) in a child who does not have a healthy relationship with food.  The stress level this reduces for us as parents, and in our house and for him to just be a kid, without the extra focus on revolving everything around his caloric intakes for the day is a part of the considerations when you look at quality of life factors. 

So, what is there to struggle about?  What is holding these lingering feelings if this is the right choice for our little man?  Is it because it makes me feel like I've failed him by consenting to a surgery to put in a feeding tube? Or worried he won't tolerate the tube or surgery?  A constant teeter totter- risk vs. benefit, risk vs. benefit....it seems too many times we are stuck on this same wheel.  

For months, he was on breastmilk and struggling to tolerate it, his pain and symptoms were increasing rapidly around 6mo. of age.  By 7.5mo., we went cold turkey to an elemental formula, having NO idea he would struggle with corn- and be so sensitized to it that he would react to corn syrups, oils and starches.  Things that were supposed to be getting better were just continuing to get worse.  We kept him on the elemental formula for 5mo., suspecting for many months that he was reacting to the corn but too afraid to move away from it with no other options.   Then we found hemp milk and formulated a plan to build him a formula. This proved to be a challenge right from the start when he reacted to the tapioca starch and we landed in the hospital because of the dumping diarrhea causing metabolic acidosis.   He was a sick little boy.  At that hospitalization, we met with the fear doctors have of a child with a restrictive diet not on a formula.   We had taken months to move past that fear as well, so I tried to stay empathetic to where their experience was coming from but struggled because no one was truly hearing us as his parents when we tried to tell them how poorly he was doing on this very formula, how poor his quality of life was, how many hours of the day he spent in pain, and how often he was vomiting.   We were begging for help to supplement his hemp milk but the only advice we were given was to keep him on the elemental formula's that he was not thriving on.   We knew if we were going to move him away from it, we would have to do it on our own...as scary as that would be.  But with reaffirmations that the formula was causing him more problems than it was helping:  the pain, eczema, stomach cramping, vomiting all stopped once we moved away from the corn syrup in the formula.  The endoscopy that he had at that time confirmed that his insides matched what we were seeing on the outside.   And we were faced with one of the first ever-challenging rock and a hard place this allergy puts us in:   remove his allergen from his diet to decrease not only his symptoms but the damage it was doing to his intestines- what effects would this damage have on him long term?  With Inflammatory Bowel Disease in our family history, we knew because of his FPIES- his intestines would not heal if he continued to be exposed to his allergens.  Our choice was to remove the allergen to heal his intestines....even knowing this meant he would still need more foods to complete his nutrition.  Our trek began, in a quest to find him foods his body would accept to fill in his gaps in nutrients.   We knew we were making the right decision for him as he continued to become a happier and calm little boy that slept and played better and never vomited.  He went on to "pass" peaches and millet, we were on the right path.   Moving away from the formula took diligence, patience and persistence but it was helping him control his allergy.   But how do we get him his nutrition?   We discussed a feeding tube at this time, following his first PICC line placement for TPN (following a soy challenge resulting in villi atrophy damage to his small intestines).   We decided it wasn't right for him since there was not a safe formula to put in the tube, the risk did not outweigh the benefit and so we continued to try and find foods that would fill in his nutrition, while keeping his allergy controlled so that his intestines could continue to heal.  Not an easy feat when an FPIES allergic reaction induces inflammation and damage to his gut....

Now, we seem to have that formula to put in the feeding tube.  The feeding tube would give him nutrition and take off stress about his nutrition; but it is still a medical device, and a surgery, and lots of diligent cares, and...but it would assure him nutrition.....It should be an easy decision....my head knows it is best for him, why won't my heart follow?