I want to post some of Dahlias symptoms... I figured throw them all out there and see if anyone with similar experiences has any input. While all seemingly unrelated, thats how her diagnosis came later rather than sooner. Her lack of exhibiting severity of symptoms also played a role in late diagnosis, as well as several of the emergencies that came about from lack of early detection. I am also well aware that everything can be explained away individually, I am not freaking out, and an er visit cannot determine much. I know because shes been to the er enough times that I feel confident in what they can and cant do, and CT scans without sedation are not possible, even with restraints. Severe fingertip pain several times per day (I assume peripheral neuropathy) Mid back pain (this is new, Im worried about kidneys as she had bad counts last visit) Neck pain Hiccups nightly (I do know there is a type of seizure identified by hiccups, but dont think thats it) Continued leg cramping throughout the day and night (I thought this would subside and growth would slow after hormone implant in November) Decreased appetite, increased fatigue (Does decrease in estrogen decrease appetite or increase fatigue?) She has also complained of pain where her shunts drain down her neck from her head into her stomach Dropping things out of her left hand (her partial paralysis is on her right side) Her vision issues seem to have subsided although her balance is sometimes off, and while that scares me for obvious reasons, I dont think its prevalent enough to be taken into serious consideration. Other than that, she is flourishing. She is saying full sentences, energetic in between sleep, excitable, developing cognitively at a rapid pace, and generally happy. I completed weaning her off Keppra several weeks ago. I have emailed St. Jude twice over the past week, and her nurse is just charting symptoms for now. Since many of the children who pass post-chemo have organ failure and heart failure, my paranoia may never go away. But, like I said, Im not freaking out... just wondering if anyone looks at this list of symptoms and has any other ideas based on previous experience. Thank you!
Posted on: Sun, 04 Jan 2015 01:28:53 +0000