It sounds like and exotic place, maybe a nice name for a Disney Fairy Land.
But no it is not the place Giselle from Enchanted is from, that is Andalasia.
Well, then what is it?
It is a our diagnoses for Anton.
We have been intensely working with Children's National Hospital in DC for the past 10 months to come to some answers and understanding. Before this year, I would question doctors to his being so small, under weight. The last doctor we spoke with shrugged us off and told us he was fine, that we were just comparing him to all the "fat" kids around him. Well, we left that doctor's office.
It was in January Anton was finally able to give me something to work off. He said he felt he had to chew his food so much or it would not go down; that it felt like when he swallowed it had to get pass a wall or he would choke. He would drink 2 - 4 glasses of liquid with his meals. He sometimes choked or regurgitate his food for no real reason, like not sick. He would get headaches or migraines from not eating enough. Meals were painfully slow with Karl and I swinging from one end to the other on how to handle the issue. Oh the questions! Was this an example of passive aggressive? Is he just being stubborn about certain foods? Why do we have problems with some foods and not others? Are we aggravating or helping the problem? Is this a discipline or biological problem? Is there an undiagnosed food allergy causing the problem? It went on and on. And if ourselves were not enough, how about everyone else asking us these same questions or the like.
Dr. Wolfe got to work with a battery of tests and evaluations. When we first got assigned to Dr. Wolfe, I was so excited because I had seen a video from Children's National Hospital where she is explaining to pediatricians how to look for undiagnosed food allergies and digestive issues that need to be treated in a specialized field. The markers she listed were dead on to what I listed above as the problems we were facing. We began traveling all over the DC, Virginia, and Maryland hospitals to have certain specialized tests or procedures ran. For some it was easier or had to be done outside of the main hospital, like a full battery of allergist testing, blood work ups, and specialized x-rays. You can follow the link here if you want to know more detail on those hoops we jumped through to narrow down to his diagnoses.
http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Cat_ID=83F0F583-EF5A-4A24-A2AF-0392A3900F1D&GDL_Disease_ID=0E11DE8C-7FB7-47AE-BC76-766AC830F7BA
After the results of Anton's endoscopy came through, Dr. Wolfe thought is was time to bring in Dr. Darbari. She had mentioned to me that we might need to see him after one of Anton's X-rays came back abnormal, he had the barium picture of the "bird's beak". It is in the information from the link above, but it means the esophagus is wide at the top and pinched and the bottom when it reaches the stomach. We got our appointment with Dr. Darbari, he specializes in dysphagia (difficulties in swallowing) and peristalsis (inability of smooth muscles to get food to the stomach). He actually created the website information pages I have listed here in links for you. Dr. Darbari was located as John Hopkins but Children's recently acquired him to their staff as he became more focused on children, most of his patients are 12 - 15 years of age with the occasional infant/toddler.
Anton endured the dreaded manometry test and it was what we needed to finalize the diagnoses. Karl and I met with Dr. Darbari earlier this week to discuss the findings and what it meant. Basically, we have to do something. If we do nothing, it will get worse. He showed us the graphs from Anton's test, showed us the pressure readings for normal and where Anton's results measured up. It was not good! Apparently only 1/2 of the time he swallows food or liquids the muscles and nerves push it down like it is suppose to do. The other 1/2 of the time it either pushes it back up or the muscles just stop and it just drops down. Then when the food or liquid comes to the lower esophageal sphincter, it is suppose to relax and let food into the stomach. Anton's gets tighter to prevent food from entering. In other words, once enough pressure gets built up, the food gets pushed into the stomach similar to a syringe forcing medicine through the needle. As the food/liquid mixture builds up in his esophagus, it causes stretching of the esophagus, which causes the muscles to push the food down work even less.
So what are our options?
Dr. Darbari walked us through the options and the pros and cons of each. We have medication, two types of endoscopy procedures or surgery. Click on the link if you want to know these is greater detail.
http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Cat_ID=AF793A59-B736-42CB-9E1F-E79D2B9FC358&GDL_Disease_ID=0E11DE8C-7FB7-47AE-BC76-766AC830F7BARight now Karl, Anton, and I are reeling from all the information and weighing each of our options. Dr. Darbari told us to not make the decision right away but spend time coming to the best choice for us. He definitely had his preferences and helped us eliminate two of the options. Anton has been working through his feelings about it all too. He is struggling and thinking about what all of this means. He has hope that he can "be normal". Now that he has hit his tweens, he is starting to worry about being "different" in a bad way. He asked me one day, "Am I weird? Like strange or bizarre?" Finally he has some answers to those questions. And last night as he tossed up his dinner from two hours before, undigested, into the toilet, he told me, "those potatoes really were good." Oh poor kid, he was concerned about me thinking his throwing up was because the dinner was bad. It just breaks your heart.
So we are asking for prayers to know the right decision and take the right steps to help Anton.
