Today we met with Dr. Zalinski, the neurologist we saw last time Jayden was inpatient at Primary's. I liked him then, and I like him even more after today!
First of all, we didn't realize our appointment was at the Riverton hospital. We drove up to the main campus like we always do and I didn't think twice. We got to the clinic and then they told us that our appointment was at Riverton....oops! They called down to the Riverton clinic to say we were on our way. We got to our appointment about 15 minutes late and Dr. Zalinski came in almost immediately. What I love about him is that he LISTENS to everything I say. With Dr. Sakonju I felt like she had made up her mind about what the problem was long before we even got into the room. Dr. Zalinski listened, and pondered, and asked a few more questions, and listened some more.
We didn't come out with any miraculous answers but I just felt as if he actually heard what we were saying and agreed with us that it wasn't just Jayden being "crazy". He made recommendations but ultimately left the decision up to us and our doctor.
For now....we are going off the trileptal. He said he has never seen success with trileptal for neuropathy. (Nerve problems.) He said there are far better drugs for what we need. He suggested taking lots of time to really research and understand what each drug's effect is on Jayden. He suggested writing down how she is feeling each day (which I pretty much already do.) If after a few weeks there is no change, he suggests putting her back on the amnitriplyne. This drug should help Jaydee in a few different ways. First, it works well for neuropathy, second it works well for gastroparesis, third, it can help with her headache prevention, and last it will make her sleepy for bed. We tried this drug before but always with the combination of multiple other drugs.
If after a few weeks the amnitryptline isn't working enough, he suggested putting her on pregabalin as well. This has the same effect as the gabapentin without the side effects she had before.
He felt like the next step for us is to see a rheumatologist. I have felt that for some time but was told that without a postive test result that indicated this was rheumatology based that the doctor would not see us. Dr. Zalinski assured us that was not the case, and if our doc wouldn't give the referral that he would.
He also told us that the headaches Jaydee has been having he does not believe are migraines but are part of whatever she has. By giving her migraine meds with out the common migraine (and most likely she is having complex migraines) we are putting her at a strong risk for a stroke. That was news to me!! Needless to say,I will not be giving her any maxalt any time soon.
Like I said, nothing fantastic happened today but for once I felt like we were trying something new and that someone was listening to me. I haven't felt that for a few months so it was nice to feel like someone was willing to take another chance on her!
