Since we've gotten back from Boston, I haven't had a chance to update everyone on the latest. I sent the following email to the Ebbie's principal, nurse, and teacher. Because I'm tired I am just copying and pasting that email so keep in mind it is geared toward the school and some of it might be repetitive.
We ask for continued prayers!!!
P.S. Mass General for Children is Amazing
This picture is Ebbie getting a little special treatment before her scope.
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I wanted to send an update on Ebbie and hopefully get us all on the same page for the upcoming school year.
As a brief background, Ebbie has a disease called Eosinophillic Esophagitis. In short, she has allergies that cause a build up of eosinophils (white blood cells) in her esophagus. It is believed to be primarily food allergies but as they learn more about the disease they are seeing that it could also be environmental allergies. In children the disease causes stomach pain and vomiting. The only way to confirm diagnosis is through biopsies of the esophagus - over the past year and 1/2 she has had 6 endoscopies with biopsies.
Ebbie has a "significant case" of EoE (15 cells per high power field is normal, 40 is when it is diagnosed, Ebbie has 115). We have gone through a year of cycling through eliminating food and having scopes. We went to an expert in Boston at Mass General for Children in June and had additional allergy testing done. While we assumed the next step in treatment for her would be an elemental diet (all liquid that would remove any proteins from her food) they recommended she try one more elimination diet along with an antacid.
We had our follow-up this past week at Mass General. While there, she had her 6th scope and it was confirmed that this elimination diet didnt work as she still had a high number of eosinophils . We also learned that EoE is causing motility problems with her intestines which is the largest source of her stomach pain.
So....the doctors gave us a choice of starting the elemental diet or taking a break and trying to just treat her symptoms. It has been an agonizing decision but after so long of eliminating different foods, we are all mentally drained and have decided to try to treat her symptoms for the next 9 months or so. Also, we really didn't want to start 3rd grade on an all liquid diet that may or may not require a feeding tube.
So, even though that wasn't as brief as I thought, I do have a few things I would like for y'all to know.
1. Ebbie may not always look sick - but she is.
2. I really try to talk to Ebbie about being present at school even though she may not feel 100%. Last year we really struggled to find a balance in when to come home bc the pain was really bad and when to stick it out. And of course, I may sometimes need help from the one who is spending 7 hours a day with her.
3. I do not know what this year will look like. In my dreams we rock along and get the symptoms under control and have no issues. If that doesn't happen we may change things but as of now, she is eating pretty much what she wants. Meaning, I will monitor her diet and send her lunch on most days but there will be no need for her to bring special cookies to school to have when everyone else is having birthday celebrations.
4. The HARDEST thing by far once school starts back are the potty issues. As you are all well aware, going to the bathroom at school is uncomfortable and kids can be mean. Some things were said to Ebbie last year - some she told me about immediately and some that she did not tell me about until this summer. I have begged Ebbie to talk to me about anything that makes her uncomfortable and hopefully she will. Ultimately, Ebbie is resilient and handles most of this in stride but it does get hard sometimes.
5. And lastly! I don't want Ebbie to fall behind in her school work. I know Ms. Holland is a wonderful, experienced, and caring teacher and I just ask that if you notice even the slightest thing we should work extra on that you let us know.
Thank you all so much for spending the time to read about what's been going on and learning more about Ebbie's disease. I appreciate all you do to provide a caring environment for my kiddos!
Deidre Barbour
