Well, I have had a fairly productive day and am pretty happy about it. Talked to the nurse at the pain clinic about the amitriptyline for Em. We are going to bump up the dose to 30 mgs since she is still not sleeping well and she is having no side effects during the day. They are also going to discuss starting her on another pain med since it is largely (in my opinion) the pain that is keeping her awake ’til 5 am most nights. That may take a little time to figure out but at least it is in process. We have an appointment with Dr. Goldschneider on Sept 14. Thankfully, the appt is at 1:30, so it won’t be a horrifically early day for Em.
I also finally heard from the doctors office about the info we need to submit to the study Dr. Driscoll is doing regarding externally communicating hydrocephalus and neurological symptoms in EDS patients. The office is going to have her head circumference, length and weight from birth to 15 ish months ready for us on Monday. I am anxious to, not only submit the info to the study, but to see where Em’s head measurements were and if it fits with the Driscoll Theory. I strongly suspect it will and can’t wait to know for sure. If it does, it will be one more piece of evidence to support my request to try Diamox and Zantac or Zyrtec.
This has been a relatively good day- I mean, for me anyway. Em still feels rotten and even asked me to cut her long hair last night because the weight of it was hurting her head and neck. But, every step we take with the specialists is perhaps one step closer to her feeling better, so we will take it!