When Zane first became symptomatic it was difficult getting doctors and others to believe that there was actually something seriously wrong. He appeared healthy and had this surprisingly unyielding energy level. And although he was frequently vomiting and struggling with food he was always this happy-go-lucky kid with an extroverted disposition. Doctors assured me that his behavior was not of a sick child. I knew differently though. Eight endoscopies, three surgeries, four hospital stays and countless visits to the emergency room later have revealed little about this new and emerging disorder.
The picture above is of Zane immediately after his last endoscopy in August. You can see the band-aids from where the blood was drawn and his finger pricked. His endoscopy revealed some furrowing in his esophagus since we put him back on his polmicort slurry of only .50 mg /day (.25mg in the morning and evening). I knew that there would be eosinophils when the doctor said that she saw the furrows. He was vomiting occassionally as well which is another indication that not all is well. The morning of the endoscopy he woke up at 5 a.m. complaining of leg and joint pain. More than a year ago his leg and joint pain was so bad that Zane was often unable to walk or walked with a severe limp. Several specialists told me that it was nothing. They told me that I was exaggerating things or that Zane was probably faking it to get attention. There is nothing worse than a doctor who explains away his/her own ignorance by blaming some pathetic psychological need for attention by the patient. When I mentioned it to Dr. Chehade at Mt. Sinai last year she denied that the bone and joint pain were related to the disorder. One year later, she is realizing otherwise. She now acknowledges that many EE patients suffer with similar symptoms that are medically unexplainable at this point.
Zane's biopsy revealed that he had about 18 - 20 eosinophils per high power field. There was also some strange irritation in the stomach and intestines. She suggested that we go back to the 1 mg / day of polmicort (.50 mg in the morning and evening) and restart 30 mg / day of prevacid just in case the stomach and intestinal irritation is from acid reflux. She mentioned as an aside that she hopes the disease isn't spreading to other parts of his gastro-intestinal system. I hope so as well. It is one of my biggest fears. Or worse - that the eosinophils could spread to his blood. So, we will try the new regimine and do another biopsy in October / November in Switzerland and see how things go for Zane. Fingers crossed that we get a clean biopsy on the next go ahead.
For the first time as well I took Selma to see a GI specialist. Before I explain why I should tell you that I found out that I was pregnant with Selma one week before Zane was diagnosed with EE. When I went to see the doctorfor Zane's diagnosis she immediately began to go into how if my first child is born with this disease that every child I have thereafter is at high risk for it as well. The GI specialist as well as the allergist threw out numbers and statistics at me but I was in a daze and don't recall them. It was quite high though. And I know many EE families with multiple children suffering from the disorder. Girls are less likely to get it because for some reason 80% of cases are in boys. So, she is at a reduced risk as a result of her gender but is still at risk nonetheless.
Since birth she has had some minor feeding issues, goes through periods of vomiting and diahrea and her stomach is constantly distended. She also has battles with eczema. She has never tested positive for allergies. But, the distended stomach is definitely becoming and issue for her and bothers her quite frequently. So, just as Zane was, she was tested for celiac disease and we are awaiting the results of that test. There is something wrong with her though. I don't know if it rises to the level of severity as an EGID but there is something wrong. Hopefully it is something minor in her diet that is bothering her that we can eliminate and just move on with our lives.
When I sat there in the hospital waiting for her blood to be drawn I was nervous as I was with Zane. I remember thinking, "Haven't I been here before?" It's frustrating but a bit more difficult this time because Selma's symptoms are far more subtle than Zane's violent vomiting. But, because her symptoms are so subtle many doctors also are ignoring the need for further investigation. Dr. Chehade understands that she is at risk because Zane has the disease so she agreed to see Selma for that reason I am sure. But doctors before Dr. Chehade have suggested to me that perhaps because of Zane that I a bit too sensitive and should relax. One woman told me that I'm in "fight or flight" mode because of my son's illness and that I should just let my kids be kids.
How do I just relax? If I'm investigating every symptom then I'm hyper-sensitive. If I don't then I'm neglectful - especially in light of our context. I know that I'm over anxious about things because of Zane being sick but how do you "just relax" when you deal with it every single day? How do you prevent that from influencing how you parent or advocate on your other child's behalf? I don't think that I can.
Hopefully it is just nothing. I am not as worried as I was when Zane was symptomatic but it is still something that is frequently in the back of my mind. It's still something that needs to be dealt with. Not knowing is the worst part of all.
