It’s not uncommon for patients to encounter low awareness on the part of physicians before eventually finding effective treatment for spontaneous intracranial hypotension due to a spinal cerebrospinal fluid (CSF) leak. When Amberly’s daughter Emma became ill, they had to seek specialized care far from home in order for Emma to receive proper treatment. Here, Amberly shares about her experience being a caregiver for a child with spinal CSF leak.
On knowing your child
“I immediately began to look for a local pediatric neurologist. I didn’t know what we were going to find, but I could tell that Emma went from being a very active child to only able to exist by lying flat.”
On coping as a caregiver
“While we were seeking treatment for Emma, I was very dialed in and focused on her. It wasn’t until it was all over that I went and sought some treatment, just to talk and debrief about what had happened.”
Amberly’s advice to caregivers
“I would say to anyone that’s out there who is a caregiver to a child, don’t give up. Just keep pushing and just keep finding that healthcare professional that will be an advocate for your child.”
The team at Spinal CSF Leak Foundation extends our appreciation and thanks to the family, physicians, and staff who assisted with this feature story, and to all those working so hard to help patients and raise awareness.
Further reading/viewing:
Resources for caregivers:
Find a Therapist
via the Anxiety and Depression Society of America
The National Alliance for Caregiving
Offering resources, information, and support for caregivers.
Rare Caregiver Respite Program from NORD
This first-of-its-kind assistance program is designed for caregivers of a child or adult diagnosed with a rare disorder.
Caregiver Support from USA.gov
Offering federal, state, and local resources for caregivers.