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An Additional Diagnosis with Updated Treatment Plan

In September, Torin was referred to a Pediatric Endochrinologist in order to receive endochrinology clearance prior to his surgery in Chicago. After discussing the ongoing management and the stability of his Hypothyroidism diagnosis (a very commonly-seen hormonal disorder in individuals with Down syndrome), we debated whether to schedule an ACTH (Adrenocorticotropic Hormone) Stimulation Test at the Pediatric Daycare Unit at Victoria General Hospital to check Torin's adrenal response to stress.

About a week after the stim test, we received a call from Torin's Endochrinologist. Much to their surprise, Torin's cortisol levels barely changed AT ALL following ACTH administration. He was diagnosed with Adrenal Insufficiency, also knows as Cortisol Dependency.

So where are we at now?

It's a HUGE relief that this condition was caught prior to Torin's liver surgery. We quickly begin daily oral Predinisone treatments to help manage his cortisol levels, and we have a modified emergency plan in place that involves immediate intramuscular injection of steroid hormone in the case of a medical illness or emergency. Such an emergency could be a severe head bump, a fever with vomiting, a broken bone or a car accident. The injectable steroid will help Torin's body cope with the stress associated with a traumatic event, keeping his blood pressure and blood sugar levels stable. It could absolutely save his life in the case of a severe trauma.

We also have a modified plan in place for the surgery to fix his Portosystemic Liver Shunt in Chicago at Lurie Children's Hospital this November. He will receive an increased "stress dose" or oral Prednisone (steroid) in advance of his surgery and prior to invasive tests or general anesthetics. Throughout his procedures and surgeries, his cortisol levels will be closely managed and he will receive IV doses of steroids while unconscious.

We are so relieved to be armed with this new diagnosis and with better knowledge of how to help keep Torin safe and healthy: both during his day-to-day activities, and throughout his upcoming international medical treatments. As always, we are extremely grateful to have access to such exemplary healthcare in our city, as well as amazing medical specialists to help manage Torin's health and wellness.

A Rare Diagnosis and Out of Country Medical Treatment 

We are sharing our son Torin's medical diagnosis and treatment plan, in the hopes of garnering awareness for our small business and our family as we navigate this complex medical journey. Torin's path ahead is challenging, but his family, friends and community are working hard to rally around him and ensure that we are able to support, care for, and reassure him every step of the way.

Thank you to everyone who has reached out over this past year to offer words of concern and deep caring for our special boy, Torin. Thank you for the phone calls, home visits, meals, offers of childcare help, texts, reassuring hugs and smiles, DMs, and heartfelt chats at the shop counter. Thank you for choosing to make a purchase at our family business when you are able, for referring a friend or family member that's expecting, and for sharing a positive experience on social media or leaving a Google Review to help others discover Momease Baby Boutique - your continued kindness and ongoing support is truly heartwarming.