Friday, November 16, 2012

Greys Anatomy:Cyclical Vomiting Syndrome (CVS)

My take after just watching Greys Anatomy: I'm CRUSHED and trying not to beat myself up over this. I'm going to try to make this into a lesson for others.... Ryder started throwing up May 3rd--continuously everyday a dozen times. May 2nd he had his first lumbar puncture. I thought it was associated to that. He would hold his head and I tried telling EVERY doctor he was having a headache. It continued for months until he passed away and he continued to hold his head. My baby was having migranes just as I suspected, but NO DOCTOR believed me or followed through!! It could have been a different outcome if he had meds to control his migranes. Dr. N suggested caffine the 1st time in the hospital and it worked---but that was only 1 dose and nothing was done after that :( Lessons Mito Mamas--1. TRUST & FOLLOW YOUR INSTINCTS`ALWAYS-you have nothing to lose by trusting your gut! 2. DO NOT have invasive procedures done--avoid them at all cost!! Don't put your kids under anesthesia if possible. It really affects the kids. Whole Genome sequencing will be available to ALL very soon (a blood test or swab!) Contact TGEN or read about it please!!