Dr.Diana—we got the results of the MRI and it says normal. One thing however that keeps standing out to me is one line—-“somewhat low-lying cerebellar tonsils is a normal variation” Could this low lying be an issue with all of my daughter’s headaches,vomiting and restless legs etc…
HI Mommieandme, It is not clear to me if your daughter had the strange reaction to Benadryl or Zyrtec or BOTH. Did you try them one at a time? Does she have hyperadrenergic POTS (are her norepi levels very high when vertical?). High norepi and mast cell degranulation have both given me the feeling of needing to jump out of the window. Seriously. I told my husband that I felt like I was being eaten alive from the inside out. I couldn’t escape my body. You’ll want to discuss these things carefully with her doctor, of course. If she is reacting to everything, would you and your doctors consider a month or two of Cromolyn Sodium or Ketotifen just to calm down her system so she can handle the meds? With hyperadrenergic POTS, some of us need a benzo like Xanax in order to stop the feeling of needing to escape our bodies. It worked like a charm for me, I stopped it cold turkey once my other medications were working (which is unheard of!) and only recently needed to add it back in after an injury. Has she tried Diamox? It can make those “low hanging tonsils” an issue if she has some mild hydrocephalus — very common with us. My son and I avoided surgery by taking that 8 cent pill!!! Now, we took it for two YEARS before we were “draining” again, but I assumed we’d need it for a lifetime, so that was good news. Any symptoms of hydrocephalus, I’d discuss Diamox with your doctors (lots of videos on this on the website). Diamox also stopped my constant nausea. Ugh. Will you check on those things? All low risk, fairly easy… Cool? Let us know? 🙂 Diana