I can't remember the last time I posted about Annie's GI issues so if I repeat myself bear with me.... Soo all of Annie's biopsy's came back perfectly normal, even the duodenal modules. Needless to say I was in tears. I just wanted to find something so that we could fix it already and take Annie's pain away. The GI doc and I spent some time on the phone trying to decide what to do next, we went through a couple scenario's and decided that before going any further we should rule out the possibility of the pain being a side effect of one of the many GI meds she is on (prevacid has a side effect of extreme stomach pain although it is very rare). Sooo we pulled her off all her GI meds with the understanding that our doc was on call on weekend and would be reachable if we needed him. Low and behold we found our culprit! It looks as though her prevacid (reflux med) was the cause of the pain. We are thrilled that we found the problem and even more excited that we have now dropped 3 meds (we had added meds to stop the stomach pain which clearly weren't working). At some point we will probably have to start a reflux med but at this point Annie has been feeling so good now that the pain is gone that she doesn't seem to be bothered at all by the reflux.
Sweet Annie also had her 6-month cardiologist apt. and ECG. What we are looking for is the possibility of Annie developing prolonged QT wave. Annie's beautiful heart is health and strong, her QT is in normal limits and the cardiologist wasn't even able to hear her murmur!
Dealing with Rett is such a rollercoaster of emotions. Today I am so thankful and so full of joy that my Annie is feeling better. Her smile keeps me going, I feel like I can breath again!