The Saga continues...to Shands we go!

Well...Well....Well....what do you know....Ayla was positive for c-diff AGAIN!
I took her to the Dr Tuesday because I have not been seeing the improvements I should. The Dr. was pleased that she hadn't lost any weight. And went on to say that he thinks that we need to re-evaluate the plan of action here. (AMEN!) We have been treating this and nothing is working. The meds they had her on apparently are very strong and should not be used for a lengthy time period. He wanted to talk to the Dr's @ Shands about this.

In the mean time we would do another stool sample..results are above.

So on Tuesday afternoon I get a call from the Dr's at Shands and they would like to see Ayla on Monday. Yes...that's 3 days before Christmas! My mom and I are going to drive down and possibly make the trip in one day.

Everyone involved thinks it's a good idea for us to get Ayla in front of these Dr's. Because she looks so good. She is not showing the normal symptoms of someone who has c-dff according to her pediatrician.

So now my mind is going a million miles a minute...doing research on what else could cause her loose, nasty, greasy stools and this belly pain. I am now forming a list of my own conclusions which could be:

1.) food allergies
2.) enzyme diagnosis
3.) over-abundance of fat in diet
4.) Lactose Intolerance

Our labs in this area are.....well...are not the most "Hi-tech" meaning when you get a stool study done for c-diff anywhere else..they test not only for the presence of the toxin...but the amount. Because in case you didn't know...you have c-diff toxin in your poop...(little nugget of information for you all). And the lab that I have had like 6 stool studies done at has been testing ONLY for the presence...NOT the amount!! Which is like....so stupid!!

So.....I am getting mentally prepared...packing my arsenal of questions...for this trip to Shands. I refuse to come home without a plan of action. Some kind of test to prove that plan will work. And something I can do for Ayla until that plans works.

Thank goodness for doctors, but thank goodness for mommies intuition. I know that I am lead to do the things I do for Ayla by god. It's a full-time job to be her mom....there's no title I'd rather have.....than...

AYLA'S-MOM
Nurse, nutritionist, mom,
cook, maid, stylist & friend...

Updates to come after visit with Shands. Please keep ayla in your prayers.

Love,

C-DIFFicult!!

For the last 3 months our daughter Ayla has been dealing with a lot of potty-problems. Because of Cystic Fibrosis a lot of the symptoms she has been experiencing can be mis-interpreted as effects of an incorrect enzyme dosage. I really have to stay on some of her Dr's because when you have a child with a chronic illness, sometimes problems aren't always explored to the fullest extent. So after a month and half of Ayla complaining of belly pain, very frequent daily diarrhea I called Shands GI (Ayla sees Dr's @Shands twice a year for Billiary Atresia). And they ordered a stool-study right away at my local lab. Low and behold that came back POSITIVE for C-diff. We went through a round of antibiotics and tested for it again and was NEGATIVE! So just to be sure we had killed the bug we did another stool-study after a week of no meds. And it cam back POSITIVE-again! So now we have her on a different antibiotic and are praying this is the last time we will have to deal with it.

The crazy thing is...most people get this from hospital stays or long periods of time using antibiotics...and Ayla was neither of those.

So please pray with us that the next stool study we have will be negative, and she will begin to feel better, and for the days of 10 BM's and whimpering from belly pain to be far behind us.