Wednesday, July 1, 2009

Well, Actually...

We had our little visit with the ENT today to discuss the whole Nolan-doesn't-eat-anything issue. Since this has put us quite on edge (the total consumed today was 2 teaspoonfuls of yogurt in addition to some milk), we wrote down every issue that we've come across in the past six months (our "worry list"):

  • Head lag (that's always been there)
  • Problems eating
  • Problems gaining weight
  • Random "fevers" (99-100 degrees)
  • Elevated AST and ALP (liver enzymes)
  • Clutching his neck while eating or drinking
  • Posterior urethral valves (that have been taken care of, thank God)

Our perplexed ENT did note there was head lag, and observed him pull at his throat while drinking.

Nolan pulling at his neck while drinking

I told her I didn't know what to make of all of this. That he wasn't eating, and if it was behavioral then we needed some help. Because he's getting worse, and not better with the current course of action. Then she asked what made me think it was behavioral. I told her that the scintiscan was negative. Her response was:

"Well, actually...."

Nothing good starts out with that qualifier. It turns out the scintiscan was negative for reflux. Yippee! It was also positive for delayed gastric emptying (DGE for short, or gastroparesis). It is borderline, because there are currently two standards used for DGE. One standard says that if only 25% of the stomach contents are emptied after one hour, then it is DGE. The other says that if only 30% of the stomach contents are emptied after one hour, then it is DGE. Nolan was at 27%, smack in the middle of those categories. By one, he has gastroparesis. By the other, he is borderline. She did diagnose him with gastroparesis, as he has symptoms consistent with the disorder and the test results indicate an issue with gastric emptying.

The next decision was whether we should be sent to neurology or to gastroenterology first. Since the head lag has always been there, we were lobbying for the gastro consult. The not-eating thing has our stress levels sky high.

She checked his weight (22 pounds, 12 ounces at 22 months of age) and agreed that we should see the GI doc. She also ordered a repeat of the liver function tests to see if those had normalized and an upper GI to be completed before we see the GI specialist. We had the liver panel redrawn today, so hopefully those numbers will come out as normal. It would be nice to wipe those off the "worry list."

Off we go to the GI specialist to find out what is going on with the little guy, and to get him eating again.

9 comments:

Julia said...

So stressful. And how come you weren't told about the DGE diagnosis until now -- when you'd already been told that the scintiscan was neg for reflux? Well, I hope they figure it all out and start fixing the problem, whatever it is. Good luck.

Herding Grasshoppers said...

Leah,

It seems like you never get a break. I admire you for the attention and effort and LOVE you pour into your kids and doing what is needed to get them what they need. (How's that for a run-on sentence?!)

Keep up the good work, and may you see progress soon!

Julie

MB said...

UGH. Sorry you have to go through all this!

leah said...

The office person called and said the scintiscan was "negative," so I took that to mean "normal." I've since learned to follow up with the doc no matter what, because the office personnel phoning in the results don't know what they're talking about. Lesson learned on that one! Scintiscans are usually done to ID reflux, and since it was negative for that, the office person said it was normal. The whole DGE thing is a little harder to read, I suppose.

Pattie said...

I am glad you have a real answer from a real doc about the scan. I hate when "office help" thinks they are docs! Grrrr!

Big hug to Nolan and Mama. WHen do you see the GI doc?

leah said...

On the 20th of July. We have the upper GI done on the 9th, so we should have some answers soon.

CAUSE ME TO HEAR said...

Leah,
Hang in there. Even though there's more testing ahead, it looks like you're at least heading in the right direction and possibly getting somewhere. That's got to be some relief anyway.
We'll keep praying...

melissa said...

Hello!! Sorry to hear about the issues that Nolan's having! Hope you get answers and them all solved soon!! Hey, pop by my blog when you have time.

www.melissascochlearimplant.blogspot.com

Kristen@nosmallthing said...

Praying for you all and fingers crossed that things start looking up.

My heart goes out to Nolan and to his Mom. I can't even imagine how frustrated you all must be, and worried, and stressed.