intractable epilepsy – David Fighting F.I.R.E.S.

by Desirae January 26, 2025 0

8 Years Surviving FIRES

January 26, 2025, marks eight years since David’s battle with the rare syndrome FIRES began. The anniversary brings complex emotions and PTSD, but the focus is on celebration and resilience. The family acknowledges the pain of their past while recognizing their growth and strength. Prayer offers comfort and perspective. In addition, the author is involved in research advocacy and has recorded a song dedicated to children facing similar challenges, embodying love and hope.

by Desirae January 3, 2025 0

David Fighting F.I.R.E.S.

January 2025 Update

The author discusses recent updates regarding David’s medication changes, particularly concerns about brain atrophy linked to long-term Depakote use. Although David experienced excessive drooling and behavioral issues, a reduction in Depakote dosage led to improvements. The transition from Zonisamide, which negatively affected David’s appetite, to Xcopri is noted, with no significant side effects thus far. The author expresses anxiety over medication withdrawal experiences and hopes for better support systems for families dealing with similar challenges in managing complex medical conditions.

by Desirae December 30, 2024 0

David Fighting F.I.R.E.S.

Practicing A Standard of Hope in Healthcare

The author reflects on the challenges faced during her son David’s routine ECHO procedure, highlighting how he was inaccurately labeled “uncooperative” despite his good behavior. This experience underscores the need for better understanding and support in healthcare, emphasizing the importance of giving patients like David the chance to succeed and be treated with dignity.