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."
Wednesday, November 24, 2010
Little man and his Mudpies
Little man may need an alternative form of nutrition if we can't get him over this hump we've been stuck in for months. Moving away from the amino acid formula's stopped corn from assaulting his system and took away his daily pain and random vomiting. He has been eating better (going from 20-30oz.Neocate to 50-60oz Hemp milk formula) and we have been able to give him a few safe foods (millet puffs and peaches) to practice his oral motor skills and give him a "snack" while we are eating, so he feels included, and we can enjoy mealtimes as a family a little more again. We only give him his millet puffs and peaches in very small amounts, we have had to build up to even these very small amounts. We are wanting to push forward with more food trials to build him a tiny menu....but we keep hitting roadblocks. The biggest roadblock right now has been that he needs more nutrition to round out his current formula -- micronutrients. For now, we have checked all his blood/serum levels of these mirconutrients and his body is holding. However, the upper endoscopy biopsy results from last week show that he now has villous atrophy, along with continued/re-flared patchy inflammation in his intestines. Inflammation will lead to poor absorption/utilization of nutrients but villous atrophy will lead to zero absorption of nutrients. Despite these findings, Little man has been doing well since his release from the hospital 12 days ago. He has had a few nights of some minor sleep disruption and a 3 mornings of some fussiness (he is cutting more new teeth), but otherwise he is maintaining a better baseline than we have seen in months!! He amazes and mystifies the doctors all the time. He is sick looking and acting, and his labs do not match; then his biopsy says he is sick and his demeanor doesn't match. He is a puzzle.
With villous atrophy findings, there is even more urgency to be assured he is getting all his nutrients -- not only getting them but absorbing them. Yesterday, his weight was up a gram. This is good....he's not losing. His demeanor is good, he plays actively, sleeps ok, eats well.....but he needs a turn around point. If soy was the culprit to the inflammation and atrophy; we have removed that 16days ago and he is healing. If the atrophy is from something else -- a slow effect of a trace protein (natural flavors ingredient in hemp milk? VitE derived from sunflower oil in protein powder? millet puffs?). Villous atrophy is most common in Celiac Disease. Celiac disease is a severe gluten intolerance where one crumb of gluten protein will cause this atrophy to begin. FPIES sensitivity is the same as Celiac- where a crumb or a trace amount will set off inflammation; although atrophy is new to Little Man. Atrophy could provide another clue to why little man's FPIES is so complex- it may indicate a protein enteropathy that is co-existing with his FPIES....because of his very sensitive and immature gut. Villous atrophy also can come from malnutrition. His labs have all looked good- indicating he currently is getting adequate nutrition (although we know ideally we need to improve it). Malnutrition does not mean what that it comes from what is taken in, but also from what the gut is doing to the body (malabsorption of nutrients taken in, despite the diet being adequate). We may never fully know what has caused this and the main goal right now is to stop it. Only time will tell. If his gut heals (he gains weight and labs continue to look good) - we can hopefully assume his atrophy has healed, although he may have to have another scope to verify before going to next steps. If he does not have good weight gains over the next week, we will have to consider alternative nutrition (parental nutrition, feeding through a vein). TPN is appealing in that it would finally provide my little man with every nutrient his body needs -- nothing would please a mothers soul more than to know her child is being nourished...it is the basic need of a mom. TPN would mean gut rest.....a wipe-the-slate-clean sort of thing. His gut could rest, heal, and his body would be nourished. However, it runs it's risks....infection at the site being the biggest risk, having to re-teach him to take his bottle after a minimum of 2weeks not being able to (except for water) and then ending up with a G-tube if he does not is a very real risk. With these risks in front of us, and with Little man playing and happy beside us -- we elected to give him just a little more time. He appears to be healing.
We have always let him guide us for his best treatments through this and I have done my best to be his voice.
So, coming home from the appointment was a good thing and his big brother knew that- he greeted him home from school yesterday afternoon with a big hug. They all played together all evening and now this morning....they appreciate having him home. Little man enjoys being home. We strive to maintain a quality of life for Little man, and his brothers, mudpies.
With the holidays approaching, I typically do a lot of baking. My boys enjoy baking with me and it is an activity for me to share with them. Every year we do a Christmas village, with graham cracker built houses and candy filled streets....each year I let them pick out the candy that will create this village. It has become a tradition they love and look forward to (they have asked if they can do a 4th of July village too so they have a summer one too!). This village sits on the table for a few weeks during the Christmas season, as a decoration and a snack! It is filled with food.....food that Little man can not have....food that would be poison in his body.....what do we do this year? How do we make this compromise so his brothers do not feel left out from their traditions while we keep Little man safe? I have been thinking about it for weeks, trying to come up with a fun idea. We discussed it last night at dinner. Little man's big brother (mudpie #2) came up with a great idea! A Lego village! A non-food, safe, but still very fun alternative!! I was so happy and relieved, but also so proud. It didn't even phase them that they would make this sacrifice and compromise for their little brother. We're in this together....