Tuesday, November 24, 2015

Grow Megatron, Grow!

We are coming up on a year since we eliminated egg, wheat, dairy, soy, peanuts, tree nuts, fish/shellfish, oranges and bananas from Megatron's diet due to his GI issues.  It was such a huge learning curve for me to find safe food for him to eat.  He was eating the same couple foods over and over until I finally caught up and found some resources online, at the library and from other "allergy moms."  I've had a lot of fails but far more successes.  And really, anything that is healthy, not overly processed and Megatron will actually eat is a success in my opinion.  Know what else is a success?  He recently weighed in at 27 pounds.  He's still short but he grew 2 inches in 2 months over the summer.  I'm obviously doing something right.

Making allergy friendly pumpkin muffins
Something else that plays a huge factor into this?  Megatron.  He's usually drinking 20+ ounces of hypoallergenic formula each day, which the makes up for any deficiencies in his diet.  He will also try anything I put in front of him.  Seriously.  He will take at least one bite of anything on his plate.  It's rare though got him up refuse to take at least several bites of a new food.  I've learned what those things are so I just avoid them if I can.  And I think there may be an even bigger reason why he doesn't like those certain meals.  He had a reaction to an orange once so we've just avoided them all together ever since.  And now, if there is any lemon or lime juice in a recipe I've prepared, he won't eat it.  I suspect that in addition to the taste, his body knows it doesn't like citrus.  That's just my gut telling me that though.  I'm not an MD, but I have a mom degree now and that's almost the same thing, right?

Digging into that cucumber/avocado roll!
Everything else though, he chows down.  He doesn't seem to have a favorite food either.  Some days he will eat his weight in one food (recently, it was green beans.  I'm not kidding, for two days in a row I had to get him a second serving of green beans and even had to bribe him "if you eat more rice, you can have more green beans" actually came out of my mouth) and then other days he picks and chooses from his options or hardly eats more than a couple bites.  Just like any toddler from what I hear from my friends. 

A recent discovery that Megatron will eat?  Vegetable sushi.  The Pilot made some for himself while I was away (I actually went on a mini vacation by myself!!) and then we ordered it to-go from a local Japanese restaurant and Megatron dug in!  Watching him eat it is pretty entertaining too.

Feeding him has gotten easier and easier with one exception.  Eating out in a restaurant.  I have to pack his meal and take it with us.  Sometimes I've called ahead or asked the waiter when we arrive about very specific menu items (that I have scoped out in advance on the restaurant's website.) to check ingredients but more often than not, there isn't any safe food in a restaurant.  That's hard.  Sometimes if we are rushing around and getting home late, it would bee nice to just stop somewhere to pick up something. Social gatherings revolve around food and sometimes its easier to avoid those situations rather than make sure I have a cooler full of his food with me.  That's been a hurdle I've really tried hard to get over because if I avoided these situations, we'd never leave the house and Megatron would turn into an even weirder kid for sure.

One thing I've done a couple times when I'm just tired or out of ideas, is go to Giant Eagle or Whole Foods and hit up the salad bar.  This can be off limits for a lot of people with allergies but Megatron doesn't seem affected by trace amounts of his off-limits foods.  We regularly feed him food that is labeled that it is processed in a facility with wheat, nuts, etc.  Some people can't even do this.  Because of this, I can select safe foods off a salad bar: lettuce, carrots, peas, bell peppers, beans.  Everything is usually already bite sized so I can take it home, add a few other safe foods and call it a meal.  I don't do this often so it seems like a novelty to Megatron, who spends a lot of time playing with all the individual pieces but he eventually eats enough.
Whole Foods date night
I had anxiety about Halloween too.  We participated in the Teal Pumpkin Project and handed out non-food items (temporary tattoos, pens, glow bracelets, stickers) but unfortunately no one else on our street happened to participate.  It's not a huge deal yet since Megatron doesn't fully understand.  And it's not like I would have let him eat a bag of candy anyways.  There are a few safe candy options out there but in my opinion, a 2 year old doesn't need to be eating candy yet.  He doesn't know what it is, so he doesn't try to beg for it anywhere.  I'll keep it that way for a little while longer.  There's also fine line between teaching him healthy eating habits but also letting him enjoy special treats for special occasions, Halloween being one of them.  I did end up taking him to several houses up and down our street and while he has no idea what candy is, I told him to ask the neighbors for a treat and once he understood that they would give him something, he really got into it.  He walked around a lot longer than I thought he would.  But when we got home and I sorted through his treats, I realized he couldn't eat anything in his bag.  Not one piece.  Again, I wasn't really planning to give him any candy,  but I won't lie, my heart sank a little.  If the food restrictions stick around indefinitely, it makes me worry for how to handle this as he gets older.  What do we do when there is a class party at school?  Or a birthday party?  I can easily keep myself awake at night thinking about things like this.  It's a rabbit hole that I try very hard to stay out of.  But with Halloween, I had my head in the hole for sure.  I had prepared though (because that's what I do) and when we came inside, I dumped the candy out his little bag and gave him a safe cookie.  He was so happy with that cookie too.  It was past bedtime (he still goes to bed at 7 so tick or treat was still in full swing at that point) and there he was, still awake, wearing his costume, and eating a cookie.  Of course he was happy!  What kid wouldn't be?  My mom and I took one for the team and ate his Halloween candy after he was in bed. :)
My little Ewok with his bag of treats.
Having his post trick-or-treat cookie.

Now that it has been a year on this restricted diet, and the fact that he's 2 (kind of a magic age for kids who have allergies they are going to outgrow), we are going to start the process of food challenges.  We recently had his blood work tested to see if there were any changes from last December.  He stills shows allergies to nuts and some other things but there was no presence of allergy to egg or dairy.  That doesn't mean he's NOT allergic but it certainly makes it less likely.  So next month we will go to the allergy clinic and he will be fed a very small piece of egg.  They will wait awhile for a reaction.  If none, they will give him a larger piece, then they wait longer.  If no reaction, he will get a "full" serving and then they wait again.  They told us to allow 4 hours for the entire process.  Doesn't that sound pleasant, with a toddler?  I'm anxious and excited and nervous for it.  I'm trying to have NO expectations but honestly, I'm expecting him to have NO reaction while in the clinic.  While I am trying to be optimistic, I'm also afraid that a week or more after the food challenge, he's going to start vomiting mass amounts and will need Zofran and Prednisone to make it stop. That's what happened the last time he ate wheat.  I have some anxiety that he won't even want to eat the egg (we are planning to not let him eat anything else all morning so he will, at minimum, be hungry).  He is a toddler after all and if they don't want to eat, you can't really make them.  I'm crossing my fingers and toes that he cooperates and that he passes the challenge.  If he passes, we will try another food three weeks later. 

I naively thought that Megatron's liver disease would be our only hurdle but as I have now lived first-hand and have seen with other post-transplant families, there are often secondary issues.  Eosinophilic gastroenteritis (EG), the reason for the food restrictions, is one of Megatron's additional hurdles.  Going hand in hand with that food issues is a sensitivity to his own bodily secretions.  His own saliva, tears, sweat, and snot all give him eczema. Guess what?  Toddlers drool and cry a lot.  They don't know how to blow their noses.  Tasty!  But, so far these have been very manageable hurdles. So what if he sometimes eats some strange concoctions.  He eats healthier than a lot of adults I know.  So what if his face and hands get all red and splotchy for two days after he's had a day full of crying tantrums or if he breaks out all over his face because of a cold.  Despite the hurdles, he's here, he's growing and thriving! I really don't think a parent can ask for more of a toddler.

When he was first diagnosed, I was so upset.  I literally sobbed the second I hung up the phone with the doctor when she told me to eliminate the top 8 allergens from his diet.  I've cried A LOT since then also.  I remember before all the vomiting started that I was thankful he didn't have food allergies because I was overwhelmed enough with taking care of his post-transplant needs. Ha! Joke was on me.  But there has been an unexpected result of Megatron's restricted diet.  I'm starting to feel more confident as a parent.  I'm finally starting to realize that my gut is hardly ever wrong when it comes to Megatron.  That's been true from the start of this journey.  I've also learned that a parent's love for their child has the potential to bring out the very best in that parent.

I'm going to toot my own horn for a minute because it's important.  I need to tell myself that I am totally nailing this special needs parenting gig.  Because there are days when I know I fail.  There are days when I think I'm failing but I'm not really, it just feels that way.  There are some days where I'm just way too hard on myself.  I need to remind myself that I have most certainly risen to the challenge of raising this kid and keeping him healthy.

You know who ordered the allergy lab work a year ago though?  It was me. Megatron had been admitted to the hospital because he was vomiting so much that he was losing weight.  We didn't know why.  We had already tried some meds as well as had multiple other tests done but still didn't know why he was vomiting.  An endoscopy was scheduled but while we were waiting for that to happen and as they started him on tube feedings to help him gain weight, I asked about food allergies.  It had come up a several times but it was always deemed unlikely because he didn't have any issues prior to his abdominal closure surgery. The attending doctor during that hospital really didn't think that's what it was either because his only symptom was vomiting. But Megatron was vomiting 6 times a day and filling an emesis basin each time.  He was IN the hospital with a feeding tube. We needed answers.  I pushed harder and asked for a blood test.  He reluctantly did it and sure enough, just as the endoscopy results were coming back (confirming the diagnosis of EG specifically), so were the blood test results.  The results were all over the place but it told his medical team a lot, led them to put him on the restricted diet and it's because I pushed for it.   

I spend, at minimum, 2 hours a week researching food for him.  Every week.  For the last year.  He not only eats a variety of foods, he eats healthy foods.  With the exception of some fake cheese and fake pizza now and again, he eats almost nothing but whole/real, mostly unprocessed foods.  I'm damn proud of that.   So when we go to see someone on his medical team and they weigh and measure him, I hold my breath until they tell us what the measurements are.  When the team is excited to see how well he's growing, I can breathe again.  When he had a baseline endoscopy several weeks weeks ago and the results showed a big improvement over what it looked like back in January, I let out a sigh of relief.  Not only is the diet working, but he's thriving too!  And it's not a fluke.  It's because I spend 2 hours a week researching.  It's because I pushed for answers.  Of course I sometimes yearn to give him some string cheese, graham crackers or a banana, and sometimes I'm sad that he might always be a little different and have to have a special treat during school parties, but then I get some reassurance from his medical team that he really is doing great. And I remind myself that that is all that matters.    
12 pounds at 7 months old....
...to 27 pounds at 28 months!

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