Sunday, February 19, 2017

Megatron: Medical Update

I figured I'm long overdue for a medical update on my little munchkin also.  He's been doing really well.  He's 3.5 now and still hanging out around the 25th percentile for his height and weight.  So he's not a gentle giant, but he's certainly not an itty bitty little guy anymore either.  In fact, he's a hair over 38" tall now because he was able to ride the Seven Dwarfs Mine Train on a recent trip to Walt Disney World.  Yup, it's time to start comparing his height to the height stick at amusement parks instead of constantly at a doctor's office.

His liver had been super happy for the last year+.  His immunosuppressant level has been kept really low and his body is tolerating that well.  That means he stays pretty healthy.  He's had some colds that take him awhile to shake but he eventually got over them.  He's had some lingering skin issues that we dealt with over the summer.  It clears up and then comes back.  We starts meds, it clears up and then comes back.  It's been pretty frustrating.  Especially since he ended up with a skin infection because of all the broken skin.  He's had another flare up the last 2 weeks so we may have to make another trip to the dermatologist.  So far the culprit seems to be that he's allergic to his own bodily fluids so he licks his lips/around his mouth, the skin breaks down and then makes it a prime location for an infection to go wild.  He also has eczema all over his arms and legs.  We can't seem to figure out what's causing that in the winter.  In the summer, we assumed it was heat/sweat.  But in the winter, we aren't so sure.  I think it's another food allergy we just can't seem to pinpoint.

Speaking of food allergies, that's still ongoing as well.  He was diagnosed with eosinophilic gastroenteritis (EG) in December 2014 and we eliminated the top 8 allergens (egg, wheat, dairy, soy, tree nuts, peanuts, fish and shellfish, plus banana because it showed up on a skin test).  Over the last 2 years, we've been attempting to reintroduce the foods one at a time until we figured out what exactly he can and can't eat.  It hasn't been quite that straight forward though.  Egg was an immediate fail a little over a year ago (vomiting on the 3rd bite).  Dairy has been considered a pass because other than the occasional eczema, he hasn't had any GI symptoms since adding dairy.  My instinct wasn't convinced he passed but we've left it in his diet.  We also attempted wheat but he failed that on day 10.  The results were a little cloudy though because we also introduced soy in that 10 day window.  In hindsight, that was a mistake.  We recently tried soy again and it seems to be a pass as well.  So in 2 years, we've only added back dairy and soy.  Last month we found a new allergist to try to come up with a much more clear and concise plan for adding back foods.  The new doctor ran new blood tests on all the foods to see if anything had changed from the last allergy panel 2 years ago.

That's when we got the news we weren't expecting.  I think because Megatron has been so stable the last year, I've finally let my "PTSD liver mom" guard down a bit.  Without realizing it, I had my hopes way up for the blood test results.  I was so certain that the results would look good and we could maybe face a future with just an egg and wheat allergy.  So I took it very hard when the results came back the way they did.  His blood reactions to all the foods looked worse than they did at diagnosis, with the exception of seafood.  The one food group no one in our house eats (remember that The Pilot is 100% vegetarian and I'm still maybe 75% vegetarian but I've never liked seafood).  I held back tears as the allergist went over each food with me over the phone.

Basically, we will NOT be testing any nuts or wheat for at least another year, when they will check is lab work again.  Egg is still off the table but that was a given since we had already witnessed how quickly he reacted to eating egg.  That made me so sad.  I really thought we might be able to try peanut butter.  He ate it right after his 1st birthday but hasn't had any since.

On paper, he looks allergic to dairy.  But he's been eating dairy in small amounts and seems to be tolerating it.  The allergist felt my instinct was correct, that his body is reacting slightly, but because he doesn't drink dairy products (he still drinks a medical formula at meals), his body is somehow tolerating the small amounts of cheese he is eating.  And now that he can talk, he's been able to tell us a couple times when his throat is "itchy" after drinking chocolate milk or eating some kind of dairy heavy food so we've started to avoid things like that.  The doctor didn't feel like we needed to take dairy back out of his diet but did agree that if we "tipped the scales" and started letting him drink cow's milk, that his GI symptoms would likely return.  We have no desire to do that, especially since he's thriving on the formula.  Soy also looked elevated on his lab work but not as much as dairy so she agreed that we could keep soy in his diet for now too.

The other bummer is that she wants to see another endoscopy.  There is no way to know what is really going on with his EG without seeing his GI tract.  We won't schedule that until after viral season (we avoid the hospital during viral season as much as possible because of his compromised immune system) so I have some time to mentally prepare.  It won't be fun.  He won't be allowed to eat for 8 hours and then coming out of anesthesia was hard on him last time.  He was one angry little monkey.  It was emotionally draining.  He doesn't remember the last time, but I do.  Sigh.  Anyways, if it looks worse, we may have to take soy back out of his diet.  The last endoscopy was done after about 6 weeks on dairy and she felt if dairy was causing trouble, it would have looked worse during that scope and it didn't.  Plus he's still GI symptom-free.

That leaves banana.  I save it for last because that is the one food that Megatron requests now.  He knows he can't eat the other foods but he's said several times "mama, when I'm a big kid, I can eat banana." Talk about heart breaking.  How do you explain that to a 3.5 year old??  There is no manual for this.  During the first appointment with the new allergist, he asked her (and the nurse) if he could eat banana.  This is the first time be's been verbalizing his food desires.  His lab work was elevated from a couple years ago but wasn't as high as all the other foods.  Also, banana is more likely to cause an allergic (immediate) reaction than an eosinophilic (delayed, internal) reaction.  Because of these factors, she is willing to do further testing.  So the plan is to schedule an appointment to take Megatron to the allergy clinic and do a skin test for banana first.  If it looks ok, then he can try a piece of banana and we will wait to see what happens.  He's smart enough and observant enough to know that this is the plan.  I haven't scheduled the appointment yet (we were on vacation and then I had the flu...and I've been procrastinating on all of it because I'm afraid of the results.  You know, if I'm going to be really honest about it.).

So I'm really disappointed with all the allergy news.  I had really hoped we had already found his allergens and that we could add the other foods back and we could move on.  But that doesn't appear to be the case.  This little guy still has to face daily challenges.  Well, if I'm going to be real, I'm the one facing the challenges.  He doesn't know that he's any different yet.  I'm the one still trying to figure out how to cook safe meals for him.  We are the ones that sacrifice meals in restaurants because most places don't have safe options for him.  The challenge is on us to teach him what he can't eat, how to recognize it and say "no, thank you" when offered food he doesn't know what is in it.  We've been practicing that at home but it didn't work yet in the "real world" recently.  He managed to get a banana slice at "school."  He put it in his mouth before the teachers noticed and had him spit it back out.  He's still learning.    And with so much talk about banana lately, he probably either thought it was ok because an adult gave it to him or he didn't recognize it because it wasn't in the peel.

I've tried to keep all this in perspective. He's healthy.  He's growing.  He's not in liver failure.  It's hard to do that sometimes though because it would be nice if there wasn't always a medical challenge waiting for us around the bend with this little guy.  I do my best though.

1 comment:

  1. Happy to hear his liver is still doing great :) - he is really growing and looks so much like your husband. The Amish race looks like it was really fun...that part of the state is beautiful. I'm bummed they won't be offering the race anymore - I was thinking about trying it!