Thursday, September 11, 2014
I know- it's been forever since I have written. Life has finally evened out, but for a little while it was so odd and difficult that I didn't really know what to say. We kept having more problems with no reasons, and I just simply didn't feel positive enough to post. Emily was really doing poorly, and I didn't really have any good answers. I knew that there had to be something that was being overlooked. The problem with having so many specialists is that they are just that- specialists. ENT doesn't know much about gastroenterology; endocrinology doesn't either. To get everyone on the same page can be a real challenge that requires quite a bit of persistence.
I'm sure some of you were thinking, "what the heck is she doing?" Or, "does she want the kids to have more doctors?" Totally not. It almost drove me crazy. What we did do is take a chance. And it seems to be working.
We got ENT involved. We had to subject her to another sinus culture, which she actually wanted. She wanted that crap sucked out. What we found is that she did not have a year-long sinus infection; it was all due to reflux. The ENT suggested we use a hyper-tonic saline, & follow-up with GI. So we got with her gastroenterologist. They scoped her. They think she may have EoE, eosonphilic esophagitis, but while she is still on steroids we won't have an accurate scope. They suggested we change her Prilosec to twice a day, which I had wanted anyway. She is now doing so much better!!! She hasn't really been "sick" in a while, and she can eat. Hooray!
The other thing that y'all may have thought I was crazy about- growth hormones. While I hate having to give her a shot nightly, this has been such a blessing. She never agrees with me when I say this but she seems to be so much better. She seems to feel less pain, which is a big reason we wanted to start her on the GH. It also doesn't hurt that she is finally growing, after years of little to no growth. It has truly been a Godsend. I had to be pushed into it, and I am so grateful to those that pushed and helped me to research it so I knew what to look for to get the ball rolling. Next step is a gym membership so they can get a good daily workout, hopefully with other kids.
Emily had an amazing time at camp! We are so grateful to her camp and the Arthritis Foundation. She really loved her cabin mates this time. It is such a huge blessing to see her happy and shining.
Zach is doing better than most, but he was warm and slightly swollen all over at his last appointment 2 weeks ago. All of his pertinent labs looked good, so now we are just watching him. Overall we can't complain. He's been on Enbrel since February 2011 (I think), and holding steady. The weekly methotrexate really seems to help. He's one of the lucky kids that has no side effects.
Tomorrow we see a new opthamologist. Our rheumies want both kids checked for Sjogren's symptoms. Emily's labs are positive for it, and both kids have had dry eyes. Hopefully that will be good. Overall, things are good! I love quiet and boring, but it certainly doesn't lead to a productive blog. We have simply been enjoying it. :). I'll post as things happen, but for now we are enjoying the quiet. <3