Monday, April 28, 2008

Test Results

Results came in today. First of all Abby's blood work came out normal! Yeah! It doesn't look like she has any sort of infection (CRP level) and her hypothalamus is "probably" not the cause of her wacky temps. I suppose we can chock her low grade fevers into the "Fever of Unknown Origin" box and leave them there. Honestly we haven't been paying too much attention to her temps lately because other issues have taken precedence. Yesterday it was 99.8, which 'technically' isn't considered a fever. Hopefully this issue will eventually resolve itself... but in the meanwhile, we will turn our energy towards other things.


The GI office called with her Gastroscopy and pH study results. Despite efforts to prevent/decrease Abby's reflux over the past 6 months (increased Nexium, and J-feedings), her esophageal biopsies showed reflux. Although this is discouraging, we aren't surprised.

Official report: "The pH probe study didn't show a lot of reflux but what did come up is very irritating to her tissue".

This report didn't seem very quantifiable or comprehensive, so I pushed for more details. Unfortunately the doc doesn't make these calls himself, so the nurse who is just reading from a brief summary can't usually answer our questions. As I tried very hard to be patient and friendly I still wanted more info. She was able to tell me that the test showed a total of 17 episodes in the 24 hr period. This didn't sound too bad to me initially, remembering that Abby's first pH probe (6 months old and 5 lbs) showed over 500 episodes! But then realizing that she is not getting any feedings into her stomach and is only secreting gastric juices that are still backing out of the stomach into her esophagus seems concerning. She wasn't able to tell me how long the episodes lasted and if they correlated with the diary we kept during the test.

The doc ordered an increase in her Nexium to 3 times a day, and encouraged us to try Carafate (a liquid coating). This should be interesting as Abby will have to swallow 2.5cc of liquid. Might not seem like much but you'd be surprised what a challenge this can be in kids with dysphagia and oral motor dysfunction... not to mention a kid who just plain Hates to swallow! We'll see how this goes. We are supposed to give it 2 weeks before we consider more aggressive measures.

I'm guessing we will go back in to speak face to face with the doc about the results and obtain more detailed information and hopefully form some type of plan.

Abby had feeding therapy today. Her OT has noticed a sharp decline in her oral skills and swallowing since last fall. Abby no longer tolerates the hour long session like she did before. There are no signs of swallowing at all, rather big sloppy messes in the bib. We still plug along trying to give her a fun oral experience with hopes of feeding improvements to come.

Josiah has started potty training! Yikes. I don't know how committed he is to his new potty chair yet, but I guarantee he will have plenty of opportunity to become very familiar with it. We bought him some super cute Big Boy "undies"! He likes wearing them.

Useful Potty Training tips are welcome!