Sometimes life doesn't go according to plan. Sometimes you find yourself on a road you never imagined you'd travel. Sometimes it can scare the pants off you. This is the story of how our little family came to be, continues to grow and how we (attempt to) manage the chaos.
Thursday, August 18, 2011
Another specialist.....why not? A couple of weeks back Marissa had a repeat swallow study and an upper GI to try and get to the bottom of her constant self-gagging, intermittent vomiting and decreased appetite. The upper GI showed significant reflux -and we're not talking "oh we all have some acid reflux" kind of reflux. We're ta
lking an esophageal-gastric sphincter muscle that just doesn't do it's job and stomach contents that have a nasty habit of travelling back up into the esophagus pretty regularly. Of course, the acid can do a lot of damage to the lining of the esophagus if it's not controlled. She's been on a medication to control the acid for 18 months. The hands down the throat trick is probably her way of either trying to "push" things back down or get relief by forcing herself to vomit. In any case - it is constant and just plain hideous!
Our meet and greet with her new GI doc yesterday went well. I really liked him and am soooo pleased to have yet another phenomenal specialist to add to our list. There is not one doc she has that I am not thrilled with - there's a lot to be said for that! We've got one phenomenal hospital and one phenomenal physician group! He explained in no uncertain terms that surgical repair for her was not without risk and he would absolutely not consider it unless this became a life-threatening issue; i.e., chronic aspirations caused by the reflux, severe erosion of her esophagus risking bleeding and rupture, etc. He also explained that kiddos like Marissa who are significantly delayed and have a multitude of medical diagnoses, especially CP and neurological impairments are more affected by reflux, BUT CAN improve over time on their own as long as we control the acid production, manage their diet and follow other "rules of reflux."
So, the plan is to completely eliminate dairy from her diet in an effort to allow any possible allergens time to leave her system, do an EGD in a few weeks and take biopsies of her esophagus and gastric lining. Depending on what all of that shows, surgery in the form of a Nissen may or may not be discussed, but I'm thinking not. She may need some tweaking of her medication and diet yet, or it could turn out that this is all just Marissa's self-stimulatory behavior of choice.