We arrived back from the States two days ago and what a difference a year makes. This time last year the doctors told us that Zane couldn't eat at all and we struggled on insanely restrictive food trials with formula being his sole source of nutrition. This time last year I returned from the States utterly depressed. All you had to do was ask me about Zane and I would fall to pieces and fill up with tears.
And now? Zane is eating. I can't believe it myself but it appears that the polmicort may be working. We haven't officially gotten the final results from Zane's biopsy taken on August 10th yet but it does appear to be working this time. It was so strange when the doctor said so nonchalantly, "Have you tried feeding him ice cream?" I said, "No. Why?" She was like, "Why not?" As if I was beligerently withholding food from my deprived son for no reason.
She explained to me that we have to see what happens to Zane while he is on a full diet while taking the polmicort. Mind you, this does not mean that Zane can eat anything in sight. He still does have EE. He is not cured by any measure of the imagination. Maybe I shouldn't ask for a cure anymore. Maybe I should just be happy with him eating. Although he is taking the polimicort he is still symptomatic. He gets the stomach pains, leg cramps and joint pains. Sometimes the stomach aches are pretty bad. Sometimes they aren't. The doctor told me that Zane may have to learn to deal with "pain management," which for some kids with EE (especially those on feeding tubes) pain can be really horribly bad.
Zane is still not permitted to eat any food that he has an IgE mediated allergy to. For those not familiar with "EE speak" that means he can't have any food that he gets the traditional allergic reactions from which would include: rashes, vomiting, itchey mouth and / or throat, stomach aches, diarhea, etc. Zane reacts differently to different foods but his traditional IgE mediated allergies are eggs, nuts, fish, shellfish, lentils, certain exoctic fruits and smarties candies (not the chocolates but those chalky like circular small candies). Smarties candies used to be a "free food" for him because they aren't more than sugar and food coloring but he suddenly reacted to them one day while we were in New York City so he's since stopped eating those.
Zane was over the moon with joy when he heard the doctor say that he can have ice cream. He immediately started screaming, "Mommy, I want ice cream. I want ice cream." A part of me was bursting with excitement myself to have the go ahead from the doctor. I couldn't wait to get outside and find some ice cream to feed him. Then there is another part of me that is terrified of this "food experiment." It is simply another trial and if the next biopsy shows something bad then food will be taken away from Zane. It was easier putting Zane on a formula only (or elemental) diet last year because he was barely exposed to food. Since all he was doing was vomiting and reacting to most of what I fed him he has never really had food before August 10th, 2009. But, taking food away from a kid who is used to eating is a whole different type of struggle. The polmicort gives him a false sense of security in a way. He no longer vomits the second he eats food. The drug helps to suppress many of his reactions to foods. So, he sometimes thinks that he is no longer "sick" himself. He does still vomit occassionally and we have to go to the emergency room to get it under control but he is no longer vomiting everyday all day and night long. That, thankfully, has stopped. But, my big fear remains: What if we have to take the food away again? Can Zane (and us) manage this time around without food?
The other rationale the doctor had for allowing Zane to eat was because Zane was developing an eating disorder. By that I mean that he was sneaking foods to eat. I was very good about locking up my fridge and not putting food out. We would keep Zane locked up upstairs where there is never any food around and we would never eat around him. So, if we were out and about and Zane found food on the street (literally) he would pick it up and eat it. He didn't hesitate to go through the trash. Sometimes he would go up to complete and total strangers and either take their food away from them for beg them for food (which was often worse). I've seen my son attempt to wrestle another little boy to the ground for some of his popcorn at the park. On the bus in NYC Zane found a bad of half eaten chips and put one of those in his mouth and ate it. And then there is even worse than garbage picking and begging . . . Kids with EE will often eat anything - even if it isn't food - simply to satisfy the human desire for oral consumption of food. Zane has eaten bird feathers, cigarette butts, leaves, paper, sand (repeatedly since we live in the desert and it is so abundant here), wax and playdough to name a few. He has done this in public which leaves people staring at me like I'm crazy because my son does these things. What can I do? How do you stop something like that in a child forbidden to eat?
Then there are all the behavioural issues that arise constantly as a result of having a starving child. That formula that they drink goes through them like its nothing at all. Both Elecare and Neocate Splash and Neocate are amino acid based, which means that their bodies don't have to break it down in order to consume the nutrients in it. It simply passes through their body undigested so to speak. So, about two hours after consuming eight ounces of that repulsive tasting liquid they are left feeling like they are completely starved. However, Zane got tired of the same taste and texture and would resist the drink making even hungrier. The more hungry he got the more unruly he became. He was constantly acting out and frequently angry. I was the one withholding from him what was a basic human desire to do. And so I was often the brunt of many of his tantrums and physical outbursts.
And so what is life like now that Zane can eat? In some ways, it is actually more work. I'm not complaining though. I'm just letting you know. Now, I actually have to prepare foods. I am back to carefully scanning labels to make sure none of his IgE mediated allergens are present. I have to schedule out my day to feed Zane and reign in some previously learned bad behaviors. For examples, many parents of kids with EE try to down play meal times by allowing kids to watch TV while eating or drinking their formula. Now, we have our meals at the dinner table. Many parents of kids with EE try to eliminate eating and drinking from social engagements all together. So, I was constantly providing entertainment or stimulation for Zane while food was present. Zane would be off on his own while others would eat together - encouraging anti-social behaviour in Zane. He was used to always doing his own thing and now has to learn that sometimes we have to go with the group.
The other challenge for me is that even though Zane can eat now he has a fear of eating since all of his food related interactions have a negative association. Encouraging him to try new foods is difficult and he will often tell me, "No. That food will make me sick mommy." It is taking time but we are getting there slowly. And we are doing it with the aid of medication that is taken with tons of packets of Splenda. Hopefully that stuff doesn't become known as a carcinogenic sometime in the future because many EE kids (like Zane now) are totally dependent on it to eat.
We still feed Zane his formula for two reasons: 1) We want him to stay used to drinking it just in case and 2) because his body doesn't process and tolerate food proteins well it also doesn't absorb many of the vitamins and nutrients in foods and the formula aids us with that deficiency.
What is the best part of the polmicort? Other than the fact that it means that Zane can eat and be a part of society . . . it also means fewer doctor appointments. Or at least I am hoping it does. We (especially Zane) deserve a break from that hectic mess. We would visit doctors, specialists and hospitals about weekly and Zane was hospitalized for dehydration due to vomiting about monthly. Here is a sample of my medical schedule while I was in the States:
July 20th - pediatric laser surgeon specialist for Selma - did a phone consultation instead and cancelled appointment
July 21st - Pediatric visits for Zane and Selma
July 21st - ENT visit for Zane
July 23rd - Visit to the Allergist for Zane and Selma
July 28th - Pediatric plastic surgeon visit at the vascular birthmark foundation for Selma
July 29th - Surgery for Zane to remove his tonsils and MRI for Selma under general anesthesia at two different hospitals
July 30th - ER visit for Zane to stop vomiting
August 4th - follow up visit for Selma at Vascular Birthmark Foundation
August 4th - Zane to the dentist for teeth cleaning
August 5th - Dr. Mirna Chehada - EE specialist at Mt Sinai for Zane
August 7th - Pediatric cardiologist visit for Selma
August 10th - endoscopy appointment for Zane
August 13th - follow up appointment for Zane for ENT doctor
August 17th - Nutritionist visit for Zane at Mt. Sinai's eosinophilic gastrointestinal disorder clinic
August 18th - we leave the States
Basically, the polmicort is a bandaid on the situation until Zane either outgrows some of his allergies or we find a cure. It only works on about 50 - 60% of kids who have EE. So, I am constantly mindful of those still struggling without food and thankful for what I have. I want all kids with eos disorders to be able to eat. But, I have to tell you that it makes me the happiest person in the world to watch my son finally be able to eat and enjoy most of it. There will be other bumps in the road but we'll take those as they may come. For now, I simply want to enjoy the moment.
What was his first food when Zane woke up from general anesthesia after his endoscopy? A keebler graham cracker. The nurse just brought anything she had that didn't have eggs or nuts in it. Here is a pic of Zane enjoying his first bite.