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.

How has it been so long??

The blog has definitely fallen to the back burner.  There just aren't enough hours in the day.

I've been trying to create a spreadsheet of the races I've done so I've been going back through my blog.  It's getting harder and harder to remember just how many races I've done now so its time to start keeping a list!  I'm not even going to attempt to try to figure out all the shorter distance races from 10 years ago but I'm at least trying to fill in the half and full marathons.  Full marathons was easy to fill in since there have only been 4 but the half marathons is proving to be a little tricky.  I know I've done 15 half marathons now based on going back through old blog posts, etc.  But I'm missing one or two.  I know I did them because I'm pretty sure my count is acurate, I just can't figure out which races I'm missing on my list.  They were the early ones, so I'm trying to recall back to 2005-2006.  Just a few life events have happened since then....

Anyways, I'm trying to catch up on some race blogs posts so I have some record of the races. Especially the races that I ran as someone else.  Not that I've gone that a couple times...but if I had, it would make it very hard to look up race results.  Sigh.  So I'm hoping to get a few posts up show that I haven't completely disappeared.

Adams County Run with the Amish

Better late than never??

I ran the Adams County Run with the Amish 1/2 Marathon on September 24, 2016.  It was 1/2 marathon #14. I was really looking forward to traveling with my friends (about 2 hours southwest of Columbus) and getting a 24 hour "vacation" from real life.  Something doesn't quite sound right about that when I consider running a 1/2 marathon a vacation.  But when you have a 3 year old at home who never stops talking, getting to spend time with grown ups is amazing, no matter what we may be doing during that time!

I knew this race was going to be a challenge just based on the location.  Southwestern Ohio has hills. Lots of hills.  Especially when you consider just how flat Central Ohio is.  It's hard to get much hill work in during training in Columbus.  Having said that though, I had a plan to train on the available hills.  But that plan just didn't work out how I had hoped.  So while I went into this race with adequate distance training, I knew I wasn't fully prepared for the hills.

Testing out the Amish furniture
That ended up being an understatement.  This was by far the most difficult race course I had ever done.  The 1/2 I ran while pregnant might have been slightly more difficult since I had the first trimester fatigue to content with, this one kicked my butt just as much.  I realized quickly that I couldn't run down hardly any of the hills.  There were too steep and it hurt my knee with each steps.  So I ended up running as much as I could but then walking down every hill.  Not the best strategy but that's what I had to do to keep going.

The night before the race, we all met up at a local Amish bakery/furniture store where the Amish had the most amazing pasta dinner I've ever had.  We ate in a barn and it was bare bones but it was by far the best pasta I've ever had in my life (probably not hard to beat store bought.  I doubt I've ever had homemade pasta before and this was obviously homemade).  I was just enjoying being in the company of my friends and none of them made me cut up their food and they didn't throw noodles at me.  After dinner we made our way to a state park about 30 minutes away.  We ended up renting several cabins for the night.  Normally I would be in bed early the night before the race but we ended up staying up way too late but had a blast.  Have I mentioned how excited I was to have grown up time??

The next morning we were up early to carpool back to the race start.  I loved how basic everything was.  When you've done as many races as we have, you don't always need fireworks and a a live band at the start.  So we were impressed with the hand drawn course map and the horses hanging out in the pasture across from the race start.  It is a beautiful part of our state, that's for sure!

Three of us started together but by about mile 6 or so, we all had split up.  My friend Kim was race walking and was easily out walking me on the downhills.  Given how small the race was, I had a feeling she could place in the race walk division if she stopped waiting for me so I told her to leave me behind.  I knew I would finish.  I felt fine, the course was just hard.  Plus there was also a full marathon so that meant I had plenty of time to finish the half.
Hills for days
The race was fully supported by the Amish Community in the area so they organized all of the water stops.  The water stops were great and there were plenty of them, which surprised me because it was such a small race (fewer than 500 people to my knowledge).  There wasn't the yelling and cheering I'm used to at the big city races but it was a nice change of pace (no pun intended).  I really enjoyed the first 1/2 of the race.  The hills were a challenge but manageable.  It was right about the rime I was thinking "this isn't so bad" that we hit an uphill that I was convinced was 3 miles long.  In reality it was probably less than a mile but it was so long and so steep/  I had to take a break when I finally got to the top...

The second 1/2 of the course really felt like one hill after another.  I still felt ok other than being tired (spending time with friends was still worth the extra late bed time, no matter how tired I was!).  At one point during the race, we saw some friends driving the course.  They either weren't racing due to injury or did the 5k so they came out to check on the rest of us.  It was a little strange to be in the middle of farm country and then a mini van full of friends comes driving around the bend honking the horn and yelling out the windows.  It was perfect though!  Towards the end, there is a short out and back section of the course which was nice because I got to see some of my friends that were ahead of me.  Seeing familiar faces goes a long way when you really want to be finished!

Even more friends were lined up in the last mile and by that point, I was walking more than running. Everything hurt.  Seeing them was another welcome sight.  They got me up one last hill and my friend Sarah crossed the finish line with me.  It felt like I had been out there for 3 days but I somehow managed to finish under 3 hours.  2:56:50 was my final time.  Not my worst!  Haha.

The finish line is at the same Amish Bakery that the pasta party was and when you have a bunch of hungry marathoners finishing a race, you load up on baked goods.  Oops.  I probably didn't burn that many calories. b The race "medal" was realy unique also.  It was a wooden "basket" made by a local Amish person. Their name was on the back even!

It was such a fun trip!  Unfortunately they aren't hosting the race again next year.  I'm not sure if I would do it again but I'm sure if all my friends were in, I'd go along with it.  It wasn't THAT terrible.  Ha!