We heard from Dr. Manini today and received the results from the endoscopy and ph study that were done while Sophia was in the hospital last week. The tests revealed a lot and he feels certain at this time that we now know what is happening with our little peanut. The biopsies from the endoscopy showed that the tissue in her esophagus and small bowel looked healthy and was without inflammation. :) This also revealed that she does NOT have EE (the disease of the esophagus that was mentioned in earlier posts). :) There was some minor irritation seen in her stomach, but he was not concerned about this. He also does not believe that there is any indication of severe allergies that would be causing the vomiting. Sophia's score on the ph study was a "23". A normal score for children of her age and weight is score a 12 or less. So, while she is definitely experiencing reflux, Dr. Manini explained that they are not typical episodes of reflux. I'll save you all the confusing details and give you our final understanding...
She has been prescribed reflux medication in hopes of reducing the vomiting, however, he believes the vomiting is the result of the gagging and coughing she does while eating which ultimately stems from a neurological response. Children with neurological conditions, such as cerebral palsy, can have sensory issues (i.e. difficulty with textures, etc.). He believes this to be the case with Sophia. The reflux she is experiencing does not justify the surgery that had been discussed (fundoplication). We are very thankful for this. The issue of fluid intake is still of great concern and he wants to further discuss the possibility of a g-tube when he sees Sophia again in 4 weeks. From now until that time, we are trying everything in our power to get her to take in more fluids. We continue to syringe feed her several oz a day, however, we are also working diligently on teaching her to drink from an open cup as this was a suggestion from several of the professionals we are working with. It was also suggested that we begin transitioning her to Pediasure and so we have slowly begun introducing that. The goal is to have her off of Alimentum and completely on Pediasure in the next month. We pray that she is over her milk protein allergy and so far, all is looking good. If she does still have the protein allergy, there are other formulas that will need to be considered.
We continue to pray that our independent (and stubborn) little miss will help us turn things around and that she will start taking in more fluids... more willingly would be a nice benefit too! ;) Thanks to each of you for your continued prayers.
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