Molly’s Procedure Part 2

2013 was the year of getting Molly better...we spent months and months working with doctors of all specialties and lots of sleepless hours trying to get to the root cause of Molly’s discomfort (all played out here). And while we did not discover anything of significance, we did rule out a lot of things...or so we thought.

We decided to meet with another GI specialist. This time it is Dr. Stathos, one of the leaders in his field and a very nice, approachable and no nonsense doctor. Molly and mom and dad love him. It was a 3 month wait for the appointment, but well worth it. He reviewed the previous results and still put his best guess that there was an allergy issue going on. What is it, we don’t know yet. So we opted for yet another Endoscopy and Colonoscopy. Not cool, never cool to put your child under for anything. But we needed to work this out. Last time, the worst part was during the procedure, they place a long pH test tube down her esophagus and out her nose connected to a device that read acid and reflux levels. It was uncomfortable for her and forced us to stay in the hospital for 24 hours. This time however, technology caught up. A small remote probe was attached to her esophagus and it transmitted data to a device she wore. No stay in the hospital, not much discomfort (the probe would detach after 48 hours and be sent out with the waste).

Procedure went very well and she woke up a lot less angry then last time. The doctor didn’t have many comments up front other than noticing some inflammation in the intestines. His best bet is still an allergy. Less likely, but still a possibility os Celiacs. Results are pending, and I will update this post shortly.

Okay so lucky for you, I can’t get these posts out fast enough and we have our results now. After all the best bets and guesses, Molly does not have allergies or Celiacs or anything like that. What she does have (and we did not see this one coming) is low disaccharide levels. With as much as I read I could go on for pages on this, but to keep it simple, she isn;t able to break-down sugars (carbs) effectively. Specifically, she has low sucrose (table sugars = candy) and maltose (breads) levels. What does this mean? Well perhaps nothing. She is thriving (and always has) so she is getting the nutrients she needs. She doesn’t have the nasty symptoms of this (like chronic diarrhea). And all in all , this condition doesn’t cause any long term damage.

But what it DOES do (or at least likely do) is cause acid reflux. And after this round of testing, she has that in spades and if it wasn’t for the prevacid she was on, she would be miserable. So our mission (which we do accept) is to put Molly on a very aggressive and quite restrictive diet. It is called the FODMAP diet and I am not going to even try to explain it. It makes no sense what is in and out except for some obvious items (all things high in sugar). Now there is every possibility that this could make little Molly super unhappy because of her love of food. But we are confident that we can make it a good experience for her. Her favorite foods are still okay, she is going to lose fruits and lots of vegetables and dessert, but I think we have alternatives. Better, if we get a positive response, she can start taking an enzyme for the sucrose levels (nothing exist for the maltose) and get back her desserts.

So that is our next 6 weeks. See if this works. Wish us luck and hope for a positive experience for Molly!

Molly once again being brave ahead of her procedure