Making the Most of Your Telemedecine Appointments
In the last few weeks, we have adapted to so many changes — from working at home to schooling our kids to strategic planning of grocery store trips. Many of us have also experienced the evolving frontier of telemedicine appointments. Telemedicine may open some new doors for patients with rare medical conditions to access specialists that geographically may have been impossible to see through traditional in-person appointments. That would be an exciting development to come of this current crisis.
COVID-19 Preparedness for Caregivers of Brain Tumor Patients with Neuroendocrine Conditions
If you are a parent/caregiver of a child with neuroendocrine side effects of a brain tumor, the concern over the coronavirus (COVID-19) doesn’t just include worries that he or she may contract the virus. There could potentially be a shortage of medications and concerns over management of the chronic conditions that sometimes require emergency department visits in a normal health climate.
Denied? How to Deal with a Health Insurance Denial.
It’s that feeling of dread every time I open the letters from our health insurer. Is it going to be a denial? No matter how many times a denial happens, I go into panic mode. Instantly, I am calculating how many phone calls will be made, how many letters to write, how long will it take. These inevitably come on a Saturday so my panic gets to settle in all the way until Monday.
Thank You DC Dancing Stars Gala!
Meet Connor Donahue, Latest Beneficiary
Connor, now 17 years old, was born with a rare type of brain tumor called hypothalamic hamartoma (HH) . Connor experienced gelastic seizures (a symptom of HH) from birth. Gelastic seizures are rare and involve episodes of nervous laughter with no apparent trigger. The seizures were never diagnosed until he began having complex partial seizures.
A Webinar on Hypothalamic Obesity with Marci Serota, RDN
Lillian, 7, Battles Back From Recent Brain Tumor Treatment and Receives Handheld Blood Analyzer
Lillian Knowlton, from Chesapeake, Virginia, was diagnosed earlier this year with a craniopharyngioma brain tumor. We met Lillian’s parents at the Pituitary Brain Tumor Day at Children’s Hospital of Philadelphia this past March while she was inpatient and post-op from a tumor resection. Recently, Jennifer, Lillian’s mother, reach out to us because of the struggle of getting her sodium under control. She said Lillian was basically confined to the house because of the constant monitoring.
Meet Isaac, Our Latest Recipient
Isaac, age 7, from Eugene, OR, was diagnosed with a craniopharyngioma brain tumor just this past December. The after effects of tumor treatment included difficult-to-manage diabetes insipidus with fluctuating sodium levels and an unreliable thirst mechanism due to hypothalamic damage.
Pituitary Brain Tumor Day – A Retrospective
For those out there that have followed our story since Alex’s diagnosis, you might have heard me say over and over again that there are blessings in this journey. Sometimes, on the hard days, it is a reminder to myself to get through that day, like an affirmation, and sometimes, when I say it, it’s a a joyful expression. Yesterday, there were many moments of joy.
Meet 13-Year-Old Micah, Our 9th Recipient
In the fall of 2013, he was 8 years old and had just finished his first season of tackle football; he loved sports of all kinds, loved building with Legos, loved history and science. He was what you might refer to as an “old soul.”