On Wednesday, I called Charlotte's GI to ask about a disorder someone brought to my attention (after I researched it) called Eosinophilic Esophagitis (EE). http://www.apfed.org/ or http://www.chop.edu/consumer/jsp/division/generic.jsp?id=83825 (It was actually a friend of my mother's from work). When the Dr. and I talked about this, she said she had been considering this disorder already, as Charlotte has all of the symptoms, and 10% of kids that have refulx have EE. The way to diagnose EE is by endoscopy, where they put a tiny camera down Charlotte's esophagus and stomach to look at it and also take a biopsy of the tissue. (I encourage you to browse the web sites I provided for more information about the disease, you may just be able to help someone else in our situation just by educating yourself).
So, naturally we were going to try to get the endoscopy done at the same time as her surgery to prevent double exposure to anesthesia. But, it was impossible, the day before surgery, to get all of that coordinated. (I am sure you can feel my frustration, as I feel if this was considered by our Dr. sooner, that maybe everything could have been coordinated, and once again, it wasn't until I said something that any action was taken). So now, Charlotte's surgery is put off, and for another, possibly week, she will struggle to eat, and fight us each day. We had "prepared" ourselves as best as we could, only to have to do it again, and do other procedures in the mean time.
So, Charlotte will have the endoscopy tomorrow AM at St. Lukes. They had offered to do both procedures next week together, however, we would have to see a different GI, and explain things all over to another Dr. which to us is quite exhausting. Nothing is cut and dry with Charlotte, and we felt that the continuity of care was most important at this point. Also, with the endoscopy, they do not have to intubate her for that, so I hope it won't be as traumatic for her. We should know "characteristic" results (meaning how it looks in her esophagus) tomorrow, but won't know the results of the biopsy until probably Mon. Tentatively right now, surgery may be Wed. Thurs. or Friday, depending on when the surgeon can get OR time for Charlotte. No matter what the diagnosis is from tomorrow, the G-tube placement is inevitable.
Please, if anyone knows of anyone with this disease, or similar problems, let me know.
I conclude with some pictures from today and over the weekend. We will update everyone as soon as we can.
Charlotte went to William Heidt's 1st Birthday Party on Sunday. I love this picture of them "sharing"
Charlotte giving me some words of wisdom, I think they were "Ma ma ma"
All smiles tonight playing with Mommy & Daddy. Really, she is happy she's not having surgery tomorrow I think
Playing ball with Daddy. She's already got a pretty good throwing arm.
Her excited face...mouth wide open :)
The Hawns
The Hawns
2 comments:
http://www.cincinnatichildrens.org/about/news/release/2000/12-allergy-reflux.htm?GOSEARCH.X=11\&GOSEARCH.Y=7
See if you can check out the above website. Dr. Rothenberg has a lot of good articles on this also, this is an older one. He is at cincinnati childrens hospital. This is very hard to diagnosis, it took 8 years or so for our son to be diagnosed and he seen many GI doctors at Childrens Mercy in KC, finally he was diagnosed with Eosinophilic Esophagitis and gastrointestinal also. He also has IGA deficiency very low, have they checked her IGA and IGG levels, I think there is IGM, IGD and IGf also. I will send you some more websites when I find them. I work with your mom. (susan)
Hope everything went well last Friday! Keep us updated on what the next step is when you have time. We're thinking of you all!!
Justin, Amber & Nathaniel
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