Busy day today. We saw gi and cardiology. Addysons been having dizzy, hot flash spells. Cardiology said she has Neurally Mediated Syncope and hypotension. We are working between cardiology and gi to develop a better hydration plan. They want 3 liters a day which is just unrealistic by mouth for her. We discussed feeding help due to the fact that without a tube we are loosing 12 hrs at night while she sleeps.
Neurally mediated syncope is a disorder of the autonomic regulation of postural tone, which results in hypotension, bradycardia, and loss of consciousness. A wide variety of stimuli can trigger this reflex, the most common stimulus being orthostatic stress. Typically, a patient with neurally mediated syncope experiences nausea, lightheadedness, a feeling of warmth, before abruptly losing consciousness. The diagnosis of neurally mediated syncope can be confirmed by a head-up tilt-table test. Treatment options include behavioral modification and several pharmacologic therapies. For severe recurrent syncope unresponsive to conventional treatment, a pacemaker can be implanted.
We will need to adjust her 504 to better accommodate this.
Also now that we have had more time to process this we know all the issues are stemming from the nervous system and the miscommunication between the brain and the rest of the body. The nervous system controls so much. We are just now realizing all is the issues she has going on.
She also got to meet Scott Hamilton today. (Olympic figure skater). He was so good with her.
She had a blast getting to see him and talk to him
Beaming with hope 