Lindsay Brim
Orlando, Florida
Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome?
Even though I had a complicated pregnancy with twins who were born at 33 weeks and spent 29 days in the NICU, we were completely shocked when our daughter had her first seizure at 6 months old. No one in our family has Epilepsy so we were hopeful it was just a fluke. Of course it wasn’t and the seizures continued. The first drug she was put on was trileptol. I immediately voiced concerns to the doctors that she was worse. They added keppra. That year we spent every holiday in the hospital and away from our son, her twin brother. On Christmas, we were in the PICU and the Neuro reviewed her chart thoroughly and told us that he thinks she has Dravet syndrome from her history. We were terrified. Upon hospital discharge, we had the bloodwork done and learned that she has SN1A- Epilepsy and diagnosed with Dravet Syndrome. During that year, we were in so many ambulances and hospitals and I began to suffer PTSD. Our family and friends rallied around us but the there was nothing anyone could do. We immediately sought out the best doctor and at the time, we were able to get in with Dr. Ian Miller in Miami and began treatment with him. He helped dramatically to change our lives.
What are some of the biggest challenges you’ve faced as a caregiver?
PTSD, fear, anxiety, the ability to maintain working- both my husband and I work full time. The guilt knowing how much our son has been through as well, seeing seizures, paramedics, etc. Even though we do everything possible for our daughter- there is always a fear that we aren’t doing enough, or doing the right things. Realizing that we will be her caregivers for her entire life is challenging.
How has Dravet syndrome impacted you and your family's daily life and routine?
Dravet has impacted our life in every way. I fear every morning that she won’t wake up, shes in a special class in school and we are always attached to our phones due to the frequent calls shes had a seizure. We cannot travel and vacation as a family as we always thought we would, our family is fatigued from caregiving and we have had to spend so much money on babysitters because there is no where for her to go in the summer for example and all of our care has always been people experienced with nursing, seizures, etc. Her behaviors are so so challenging every single day. We cannot attend functions with friends and family because of her behaviors or seizure concerns. Her cognitive delays are incredibly challenging to manage.
What advice would you give to a new caregiver whose loved one has just received a Dravet syndrome diagnosis?
Seek out all the specialists, get into the therapies as soon as possible and ensure your doctors listen to you when it comes to your experiences, especially with medications. We fly our daughter to CHOP from Florida now that Dr. Miller is no longer seeing patients. There is nothing we wouldn’t do to help our girl so seek all of the resources you can! Get an IEP for school.
Are there any specific resources, organizations, or individuals that have been particularly helpful to you?
Dravet Syndrome Foundation has been amazing, Children’s Hospital of Philadelphia ENGIN program
What moments or achievements have brought you hope and joy despite the challenges?
When she was younger, her balance was terrible. She could not run or jump and would fall all the time. After PT and as she has grown, she loves to run and I love to watch her run! She is so well loved at her school in her ESE class and that brings us so much joy. We try to stay up to date with research and studies so we are hopeful that there is something we can utilize in the future with her.
How do you manage the stress and emotional strain that comes with caregiving?
I have to take daily anti anxiety medication, my husband and I have both been in counseling and connecting with others whose kids have Dravet has been helpful. I have horses so anytime I can spend time with them helps my mental health.
In what ways has Dravet Syndrome Foundation (DSF) supported you and your family?
We have attended virtual conferences, I learned about Eileen Devine LCSW through DSF and her work is super helpful for families like ours. My husband also attended a conference in Sanford FL (I had the flu). He found it very helpful.
What message or piece of wisdom would you like to share with the broader Dravet syndrome community?
When your child is diagnosed with a disease like this, it feels VERY lonely and terrifying. But the reality is, we are not alone because of this community. Become super educated on this disease and do not be afraid to use your voice with physicians. Create a seizure sheet/record that outlines your Childs meds, diagnoses, the contraindicated meds for Dravet and record history of seizures. Makes hospital and ER visits so much easier to hand them a sheet of paper with all of the info. Also, heaven forbid, if your child has to go in an ambulance alone, at least they have a paper.
Can you describe a moment when you felt particularly supported by DSF and/or the Dravet syndrome community?
I have posted in the Caregiver support group before and felt supported. I love the educational opportunities that the Dravet Syndrome Foundation provides because we have to be educated to do what is best for our daughter- that is our job and duty.
