As I mentioned in an earlier post, Sophia has continued to struggle with eating and drinking. She has always been a kiddo who took in well below the low end of the "typical" range of fluid. Recently, (in the last 3-4 weeks), she had decreased her daily fluid intake to a substantial low, only taking in 7-9 oz. a day, which includes the Pedialyte that we've been feeding her by syringe. There are obvious concerns of dehydration and we are at our wits end. She has also been gagging excessively throughout her meals and projectile vomiting after meals. The gagging happens frequently at all meals, but the vomiting usually only once a day. However, it has become a daily thing and she is vomiting large amounts (sorry to be crass). Due to concerns for her growth and weight and because it's a "new" behavior for her, she was referred to a pediatric gastroenterologist. This appointment followed her feeding evaluation at Blank. Here is what we learned:
Monday, October 24 ~
At her feeding evaluation, the therapist observed her eating a variety of foods of all different textures, preferred and nonpreferred. She observed drink (or rather not drink) from a bottle, several sippy cups, open cup, and syringe. Overall, she feels that Sophia is moving her food well, chewing and swallowing appropriately. All of these things historically can be difficult for children with cerebral palsy or other neurological conditions. She does feel that Sophia could possibly have some "strength" issues and so some feeding therapy could be beneficial, but overall, her feeling was that there is something else going on. She wanted to have Sophia seen by the GI doctor before we proceeded with a plan for therapy.
Thursday, October 27 ~
Sophia was seen by Dr. Manini, a pediatric gastroenterologist at Blank Children's Hospital. He was very well read on Sophia's case history and had spoken to the feeding therapist that saw Sophia earlier in the week so we were thankful that he seemed to know quite a bit about her before we had to dialog through everything. After further discussion and an examination of Sophia, he presented us with two likely diagnoses: severe reflux or a disease called eosinophilic esophagitis (EE). Both can be treated, but the measures to treat can be pretty involved. Reflux in children with cerebral pasly is very common so this is likely the culprit. This would also explain why she has never liked taking her bottles and has always struggled with fluid intake. Unfortunately, it is unlike "typical" reflux in that it doesn't disappear around 6-9 months of age. In fact, it could be present throughout her life. It is possible that the reflux was "silent" up until this point, meaning that she was experiencing the pain and discomfort of reflux but it wasn't coming all of the way up until recently. She will go through several more tests in the coming week and will be hospitalized overnight for one of the tests. She will have the following performed: a swallow study, upper GI, and an upper endoscopy and PH probe study. It is the latter that she will be hospitalized for as they have to use general anesthesia for the procedure and she will have an ng (nasogastric) tube in for a 24 hour period. (This is a tube that goes from her nose to her stomach.) We will know by Monday when all of the tests will be scheduled for sure, but they will begin next week. Dr. Manini discussed different treatment options if it is reflux or EE, those of which include, medication, therapy, and as a last resort, a surgery that would prevent her stomach contents from moving back up into her esophagus . The surgery would be a very last resort and is often accompanied by a lot of unpleasant side effects, especially in children with neurological disorders and so, for obvious reasons, we pray that it doesn't come to that. The other thing he discussed as a likely possibility is putting in a g-tube (gastrostomy) which is inserted through the abdominal wall and into the stomach to help supplement Sophia's fluid intake. This may have to be done if her fluid intake does not increase soon. While we do not wish for this to happen, we are desperate and it is difficult to be in constant fear that your child is going to become dehydrated.
Thank you for your ongoing support, prayers and kindness. It means more than you can know. Our prayer requests at this time would be that Sophia begins to tolerate her solid food again without gagging and becoming sick and that she begins to take in more fluids. We also pray that she will get through these tests like the warrior she has proven to be. We love her so much and hate to see her going through all of this. We hope to finally have some answers so that she can continue to grow and make great strides in all areas.
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