Thursday, June 30, 2011

New News!

7/13/13:  I've edited this blog post as we've learned more about this disease.  We were given a lot of bad information at the start, and although I want to have a clear record of exactly what we knew (or thought we knew) at the time, I didn't want someone to find this blog post through an internet search and think that the information was reliable.  The edited parts are in red.

So, after our ER visit on Sunday, I called the GI doc and she said it was time to start an elemental formula (a formula in which the proteins are broken down so they are easy to digest and there is no way a child could have an allergic reaction to it--it's brand name is Elecare) and use an NG tube (a feeding tube that goes in through the nose and into the stomach, and gets taped to the face to be held in place) because the formula tastes nasty and Caleb won't drink it. Seriously, he won't even take a sip. While he's on the formula he can't have anything else, because we need to get all of the allergens out of his diet.

What an NG tube looks like:


I knew she was going to say that, and that's what I wanted her to say because I knew it was the only way for Caleb to get better, but it made me very sad. It changes a lot of things. We can't eat in front of Caleb any more, because he'll want to eat whatever we're eating, and he's not allowed to. And NG tubes are traumatizing for babies and toddlers. It's terrible to be pinned down while someone puts a tube down your nose. And I thought that Monday would be his last day of ever eating a chocolate chip cookie or a piece of pizza, because he's sure to be allergic to either eggs, gluten, or dairy. I think I cried more than I have ever cried in a day.

Caleb's last chocolate chip cookie (for breakfast, while watching Mickey Mouse Clubhouse):


Caleb's last supper--Panda Express noodles:


So, Monday night Caleb got an NG tube and we discontinued all foods other than his formula. Tuesday morning he had pulled his tube out, so I put it back in. I brought him to WalMart so I could confine him to the shopping cart long enough for his feeding pump to pump in all of his lunch. And I bought myself a sandwich and ate it in the parking lot in the front seat of the truck while Caleb was in the back seat. Pregnant women gotta eat, too! Tuesday afternoon he pulled the tube out again, so I put it back in. It was miserable for us both. I'd say it was probably the third worst day of my life.

Wednesday wasn't so bad.

On Thursday we visited with the GI doc. We talked about a lot of things, and we got a lot of good news! Here is what we talked about/what is going on now:
  • Along with his Elecare formula, Caleb can have green or clear gatorade, tuna, chicken, white potatoes, sweet potatoes, grapes, apples, and rice. The only thing we can add to any of these foods to flavor them is salt.  This is an arbitrary list and I have no idea how the GI doctor decided that these foods were ok.  Plenty of people react to these foods, so we're lucky that Caleb didn't react.
  • Give him less formula at breakfast because he's more likely to throw it up, and give him 10+ ounces over the course of about 4 hours while he sleeps at night. Give him a total of 28 ounces or more in 24 hours.
  • Keep him on the special low-allergen diet until he gains enough weight to be in the 5th percentile for his adjusted age. She said that he'd have to gain eight pounds at least. I don't know what chart she's looking at, because it seems normal/pretty good for a 17-month-old to weigh 26 lbs. At any rate, it'll take him a while to gain eight pounds (like...at least a year, I'm thinkin') and by then he'll still be small for his age. Either way, once he gains lots of weight we will add back one normal food every 3-4 days and see how he reacts. If he doesn't react well, we will see an allergist.  I don't know how the GI doctor decided this...two years later, at 3 years 8 months, Caleb still weighs just less than 26 pounds. We started adding foods back into his diet one at a time after he had a scope that was free of eosinophils.  His weight had nothing to do with it.
  • Caleb will need a g-tube (a surgically-placed feeding tube that goes through the side of the tummy and straight into the stomach). It will be much less traumatizing for him and for me to have a surgery and one night in the hospital than for him to have a tube constantly down his throat and taped to his face. I was surprised how happy I was to hear that he would need a g-tube. I thought I would be scared, or feel like a failure. I mean, everything we have done ever since Caleb was 2 months old was with the goal of keeping him healthy without a feeding tube. He went a whole year without an NG tube. It's almost like we're back where we started, but really we're making huge strides! So, next week we have a pre-op appointment and the week after that is the surgery. Yay!
  • Eosinophilic Enteritis is NOT hereditary!  Not true.  It is hereditary.  What a horrible lie to tell a patient.  I love our doctor for many reasons, but I've learned not to trust her.  That's sad, isn't it?  We just, once again, defied the odds and ended up with a major medical problem! (Did you know that there is a less than one percent chance of delivering a baby before 28 weeks? Yep. I think the odds of getting this type of EE are even slimmer.) Other types of eosinophilic disorders are hereditary (and more common), but not when they are in the small bowel. It's likely that he had a trauma to his small bowel at some point that irritated the lining of the bowel and it was never able to fully heal, making it vulnerable to the eosinophils, which are allergen-triggered. I'm willing to bet that the trauma occurred when he was about three weeks old and the NICU doctors wanted to add fortifier to his breast milk feedings. He couldn't digest it yet (he was too young and small) and he got filled with so much gas that his intestines got pushed up to the level of his nipples. Very sad. He cried a bit (which was weird for him) and he spit up. He almost perforated a bowel! They had to take him off of all feeds and put a tube into his stomach to suck out all of the air and food from his intestines. It was very serious, and very sad.  It's possible that this trauma was the "trigger" event that caused this autoimmune disease to start, but no one knows exactly what causes EGIDs, so it's just a theory.  Either way, trauma trigger or not, EGIDs are hereditary.
  • Caleb's type of EE is NOT PERMANENT! YAHOO!  Lies again.  This doctor needs to read up on this disease.  This false information caused a lot of heartbreak.  This was the best news of all! Our GI doc gets about eight patients a year with Eosinophilic Enteritis, and she has had a 100 percent cure rate! Most patients get cured easier than Caleb, it seems, but she's still confident that he'll get over it with time and with the right nutrients. So, he WILL get to have chocolate chip cookies and pizza again some day! Yay!
So, there is a very detailed and somewhat long-winded explanation of where we are at now (and where we will be for a while).

Playing in the dirt while getting an afternoon "snack" through the tube:
He can carry his feeding pump and his formula on his back in this handy backpack (as long as there isn't a lot of formula in there to make it too heavy for him):

4 comments:

*Alice Anne* said...

This sounds so much better and more do-able! I don't know how you could ever, ever think you were a failure at anything! You are an amazingly awesome mommy. :)

Katie B said...

I remember reading someone's blog who's child had to get a g-tube and her doctor said that 90% of parents who's child gets one wishes they had done so sooner. I'm sure it's going to help him a lot.

And NOT PERMANENT?! That's fantastic! A 100% cure rate is pretty promising, wouldn't you say?

How interesting- wasn't that what you were telling me about with the fortifiers in the milk being deemed not okay for preemies? I'm glad that's been figured out because it's sure been giving Caleb a lifetime (so far) of trouble!

Megan said...

Wow that is a lot to take in but it sounds so much more promising than before. I am so glad he won't have to struggle with this for his entire life!

I am with you about the weight gain though. Dayt is 17 months and 24 pounds. He has always been healthy and the lowest percentage he has ever been in is 50th. Hopefully she will allow you to introduce more foods before he gains that much weight but I am glad he can eat some foods and that it's not solely reliant on the formula! Please let me know if I can do anything. I'm only here for a few more months but would love to help!

Patrick, Adrienne, & Bella said...

I'm so glad to read such a happy blog entry! :)

and by the way, bella weighed about 24 lbs at 18 months and only barely weighs 30 now. caleb is probably taller than her, though. anyway, good luck! and you are so positive! :) it's always nice to see the blessings start to pour in after trials.