Last week Ashten had an outpatient surgery, called an endoscopy, to allow his GI to take a look at his insides and to see what's going on in his tiny little body that's making him so sick. During this procedure, the patient is put to sleep under anesthesia and the doctor inserts a little tube with a camera at the end, to take pictures. They also take several tissue samples to send out for further testing and biopsies. Ashten's surgery last week went alright--although they did say that next time they will take him to Children's because his oxygen levels weren't very satisfactory when he went under--and judging by the pictures, everything looked pretty normal. Even his small intestines looked great despite his constant bouts with diarrhea. The doctor sent us home and had us follow up with him to discuss the results of the tests and to do another weight check....that follow up visit was today.
So, the good news! Ashten gained a whopping 1 pound 6 ounces in just 21 days! That's an average of 30 grams per day--the doctor said the average 10 month old gains about 10 grams per day, so he gained triple the expected weight. We're now weighing in at exactly 15 pounds of pure fun and smiles!!! I'm one. happy. mama!!!
Now, on to the bittersweet news...Since this whole thing started, I have just wanted an answer so we can move forward and fix whatever is causing Ashten so much trouble and so that I can finally say, Yes, we know what's wrong with him! On the other hand, I was starting to get kind of comfortable in my little bubble. That little bubble that lives in La La Land and thinks that Hey, maybe NOTHING is wrong with him, maybe it's just a fluke that he's not gaining weight. LOL it sounds silly but our whole family has been through such an emotional roller coaster of ups and downs so we kind of enjoyed not knowing, even if we knew answers were looming around the corner just waiting to POP! our little Bubble World. So today, when Dr. Marcus came in and began discussing Ashten's weight gain triumph and then moved on to a more serious demeanor, I could tell my time in La La Land was coming to a close...I'm bittersweet because I DO want answers, but I'm not very happy with having to face the reality of what that answer may entail. So here goes!
Dr. Marcus began explaining how Ashten's biopsies of his small intestines, colon, stomach, and rectum were all fine. Then he began to focus on his esophagus, explaining that Ashten's Allergenic White Blood Cells were extremely high. He mentioned that while he had not gone in with the camera looking for this, his findings lead him to believe that Ashten may have a disease called Eosinophilic Esophagitis, which is an allergic condition much like asthma or eczema, where foods trigger allergic reactions in the esophagus. Common symptoms include poor weight gain, vomiting, food aversions, and difficulty swallowing....all of which Ashten has had. While this is still a preliminary diagnosis, he sounds pretty certain that this is Ashten's main problem. "EoE" is a chronic, life long disease that does not go away with age, but it is treatable and symptoms are manageable. Patients with EoE often complain of stomach pains, chest pains, and the symptoms mentioned above, but may also experience times in their life when no symptoms present. Most patients are treated with food therapy--meaning, pretty much, you eat what doesn't trigger an allergic reaction and avoid what does.
We are scheduled to go in for another endoscopy in 2 months to solidify these results and to formally get Ashten's diagnosis, and if diagnosed, Ashten will have to be followed by his GI for the rest of his life. While I know this is no cancer, this is no sickle cell, or CF, or anything super crazy scary like that, I'm still so sad for my boy. To think he's had stomach and chest pains this whole time--but he couldn't tell me. To think he's known pain his whole life and maybe doesn't know it's not normal--all of these things really bother me as a Mom. My poor baby! I wonder if he'll ever get to eat like normal kids do, or how this will affect him long term. So there's my bubble--popped to pieces! I'm happy we're finding answers, but not happy to embrace the answers...yet.
Whew! What a day! I know in the past when I first started posting about Ashten on my fan page, there were some moms who messaged me and mentioned EoE. PLEASE if that was you, can you message me again? I'd just like to hear Mom-to-Mom what it's really like. What should I expect? Is this super scary or just another thing you've learned to deal with? Even though only 1 out of 2000 people is diagnosed with EoE, I know there are at least a handful of you out there who have been through this. I'd love to hear from you!!
Thank you everyone for praying for Ashten! I say this all the time, and I won't ever stop saying it! It means so much to us all. Please don't stop! We appreciate it so much more than I can express to you all right now!!!!
To learn more about EoE, visit these websites:
Now, on to the bittersweet news...Since this whole thing started, I have just wanted an answer so we can move forward and fix whatever is causing Ashten so much trouble and so that I can finally say, Yes, we know what's wrong with him! On the other hand, I was starting to get kind of comfortable in my little bubble. That little bubble that lives in La La Land and thinks that Hey, maybe NOTHING is wrong with him, maybe it's just a fluke that he's not gaining weight. LOL it sounds silly but our whole family has been through such an emotional roller coaster of ups and downs so we kind of enjoyed not knowing, even if we knew answers were looming around the corner just waiting to POP! our little Bubble World. So today, when Dr. Marcus came in and began discussing Ashten's weight gain triumph and then moved on to a more serious demeanor, I could tell my time in La La Land was coming to a close...I'm bittersweet because I DO want answers, but I'm not very happy with having to face the reality of what that answer may entail. So here goes!
Dr. Marcus began explaining how Ashten's biopsies of his small intestines, colon, stomach, and rectum were all fine. Then he began to focus on his esophagus, explaining that Ashten's Allergenic White Blood Cells were extremely high. He mentioned that while he had not gone in with the camera looking for this, his findings lead him to believe that Ashten may have a disease called Eosinophilic Esophagitis, which is an allergic condition much like asthma or eczema, where foods trigger allergic reactions in the esophagus. Common symptoms include poor weight gain, vomiting, food aversions, and difficulty swallowing....all of which Ashten has had. While this is still a preliminary diagnosis, he sounds pretty certain that this is Ashten's main problem. "EoE" is a chronic, life long disease that does not go away with age, but it is treatable and symptoms are manageable. Patients with EoE often complain of stomach pains, chest pains, and the symptoms mentioned above, but may also experience times in their life when no symptoms present. Most patients are treated with food therapy--meaning, pretty much, you eat what doesn't trigger an allergic reaction and avoid what does.
We are scheduled to go in for another endoscopy in 2 months to solidify these results and to formally get Ashten's diagnosis, and if diagnosed, Ashten will have to be followed by his GI for the rest of his life. While I know this is no cancer, this is no sickle cell, or CF, or anything super crazy scary like that, I'm still so sad for my boy. To think he's had stomach and chest pains this whole time--but he couldn't tell me. To think he's known pain his whole life and maybe doesn't know it's not normal--all of these things really bother me as a Mom. My poor baby! I wonder if he'll ever get to eat like normal kids do, or how this will affect him long term. So there's my bubble--popped to pieces! I'm happy we're finding answers, but not happy to embrace the answers...yet.
Whew! What a day! I know in the past when I first started posting about Ashten on my fan page, there were some moms who messaged me and mentioned EoE. PLEASE if that was you, can you message me again? I'd just like to hear Mom-to-Mom what it's really like. What should I expect? Is this super scary or just another thing you've learned to deal with? Even though only 1 out of 2000 people is diagnosed with EoE, I know there are at least a handful of you out there who have been through this. I'd love to hear from you!!
Thank you everyone for praying for Ashten! I say this all the time, and I won't ever stop saying it! It means so much to us all. Please don't stop! We appreciate it so much more than I can express to you all right now!!!!
To learn more about EoE, visit these websites:
We'll continue to update you all on Ashten's progress! I swear cried a little when that scale said 15 pounds!!! I am so proud of him for gaining so well, and I can't wait to bring more good news--I know my Ashten is in God's hands and that's what matters!! :)
XOXOXO
Sam (& Baby Ashten!)
