Been a while since I posted – and there have been a few important developments to mention.
I have been totally out of it for a week and a half due to a nasty kidney stone. Apparently that 7 1/2 mm stone that I have been fighting for 5 months decided to rear its ugly little head and needed an attitude adjustment. I ended up in the ER, had a shockwave procedure (where they use ultrasound to break up the stone) and then had a stent placed. Both procedures were minor surgical procedures and I was under general anaethesia for both. Spent a few days in the hospital and have been pretty well out of it since I came home. Not fun at all. The only good things about this adventure is that my mom was able to come and stay with the kids (and me) and that Em has improved so much with the mast cell treatment that I didn’t have to worry much about her. I am slowly recovering and hopefully this ordeal will be over soon.
So, on to the updates…
First, the mast cell treatment (zyrtec and zantac) has been more successful that I ever dreamed. Em is eating without pain and is up and around through out the day. She went to our homeschool Co-op classes yesterday without her wheelchair (!!!) and I attribute that to the mast cell treatment.
Second, and also very important, the amitriptyline has finally started working well. We had to bump up her dose since we only had a few 10 mgs and a new script of 25 mgs. The 45 mgs seemed to be working pretty well. In fact, she has been falling asleep before midnight and waking up, on her own, by 11 am. She finally told me that, on this dose, she was falling asleep quickly, sleeping well and waking up rested. RESTED!!! – she hasn’t had restful sleep for months and least and maybe not for years. We are bumping up the dose to 50 mg, just for simplicity in dosing and if she tolerates it well, we will stick with it. The pain relief aspect from the ami is still in question – but she may be getting a little benefit from it. Hard to tell since she has been way overdoing while I have been ill.
Third, an update on the diamox saga. My husband had to take Em to her appointment with the pain doc at Cinci without me. I didn’t really think this doc would agree to prescribe the diamox but I thought he would at least listen. He sort of listened , a bit dismissively, and refused to help. That was expected but still discouraging. He wants to wait 2 weeks to see how she tolerates the 50 mgs of ami before he prescribes nuerotin for her pain. That is frustrating but I understand. All in all, it wasn’t a great visit and I really wish I could have been there. Probably wouldn’t have changed anything but I would have been able to explain the mast cell and Driscoll theories perhaps better than my husband. Although, I think he did a great job – most likely nothing would have changed even if I was there. There were a number of concerning things about that appointment but maybe I will write a separate post to detail them all. Would take too much space here… Suffice it to say, we are getting more and more annoyed with doctors in general!
We still have our plan d for getting diamox – an appointment on Tuesday with the local neurologist for a second opinion. Praying hard that it is a good visit and we are listened to. I still believe that if I can get a doc to listen to me for 5 minutes with an open mind, we will leave with a script for diamox in hand.
So, a lot has happened in the past couple weeks and we are still trying to move forward. Can’t wait to feel better so I can get on with taking care of Em and focus on her health instead of mine!