Introduction to Delaney and Michelle
Delaney is the youngest of our three children, she has an older brother and sister. We live just outside of Orlando, Florida. Pre-coronavirus we would go to Disney every week, my mom works there - we can go every day and find something new to do, it’s great!
I’m a stay at home mom due to Delaney’s epilepsy diagnosis and my husband works full time. We’re a very busy household, the kids are in school and play lots of sports.
We live in Lake County, as a family we often go out on the boat. Our kids love being on the boat and swimming - they taught themselves. The lakes have all these restaurants and bars around them, so we hop out and enjoy.
Diagnosis and condition
It was an interesting time. She started acting differently in the summer of 2019, I noticed something wasn’t right but our pediatricians kept saying everything was fine, it's just the 'terrible 2s starting early' but I knew something was wrong.
She had a tonic-clonic seizure out of nowhere, so we were told to follow up with a neurologist. In our first appointment we went through the basics of what epilepsy is, and signed up for an EEG and MRI. Delany had her second seizure a week later, she was then prescribed medication.
Then her seizure frequency increased to once a week. The EEG and MRI showed no abnormalities, and she was kept on medication. After two months the seizures increased from once a day to multiple times a day. We tried different medications but then this became 15-20 tonic-clonic seizures a day.
She then had three seizures in a row lasting 15 minutes, we stayed in a hospital in Orlando for 57 days. It was strange, we didn't have much information and then we were admitted into hospital. We went in on March 1st for basic monitoring, things kept getting worse and Delaney was put in a medically induced coma and given so much sedatives - we were told it’s like 'restarting a computer'. She was in a coma for 2 weeks, after all that she had a few more scans and then surgery.
At this point she was experiencing 70-100 seizures a day. This was at the beginning of the pandemic, we were on lockdown and couldn't see our older children, so we were FaceTiming them from the hospital. The surgery was a posterior disconnection of her right-side. There was a hotel nearby called ‘Delaney Hotel’, my parents got a room on the day of the surgery, myself and my husband walked over there and spent the day with our kids and my parents. That day felt a mess but felt like it was all going to be ok.
Constraint-Induced Movement Therapy
From her surgery, they didn't touch her motor cortex, she has weakness on the left side of the body. Her left hand has some weakness and she forgets that it's there. The CIMT Delaney is having involves putting the cast on her good arm, to make her realize that the weak arm is there for her to use it. This is for 4 weeks, we have daily occupational therapy from Monday to Friday. The team works with her on activities that encourage left handed activities. We've seen a lot of progress in it!
Support for caregivers
It's hit or miss, epilepsy is not widely talked about. Before her diagnosis, the only seizures I'd seen were on television. When she had her first seizure I did everything wrong! We've taught our family and friends so much, they try their best but having my internet friends is so helpful, I can go to them because they understand as their kids are going through a similar experience. We started looking for support online after her surgery in April 2020, Dr Bello looked into the Brain Recovery Project, I started finding Facebook pages and searching hashtags on Instagram. Now I’m an active member of two Facebook groups and I connect with families with similar journeys on Instagram.
Read more: How to find epilepsy support groups
Experience with Epsy
I downloaded and started using the Epsy App after seeing Ansley’s posts on Instagram. It's helpful for me, I'm an organized person, so it’s great for me to have something to check off that medicine has been taken. For me, the medication reminder is the most useful feature of the app. Me and my husband share information we log for Delaney on Epsy. Every month we will send a screenshot of the monthly calendar view of the data to our epileptologist.
Message to others
Follow your gut. It was my instinct that told me something was wrong. If you aren't comfortable with what your neurologist says, it's ok to look for the opinion of a second doctor. Find someone to reach out to to talk to - it can sometimes quite feel lonely.
Delaney was seizure free for 7 months after her surgery, but now she experiences a different seizure type - focal aware seizures. After her surgery a cyst formed near her surgical site, the MRI showed that her post surgical cyst has significantly grown. There is a very high probability that this is causing the current seizures due to pressure. We are looking at draining the cyst, and praying for a simple procedure with an easy recovery!
During her seizures she remains aware, she can talk to us but she sounds like she’s intoxicated. Sometimes she'll giggle while having them or she'll twitch. She can feel it coming, so she grabs onto something or lies down. Then she gets up as if nothing has happened, so there is no bad post-ictal phase.
Experience with epileptologists
The first neurologist we saw was not great at all, if you have a basic diagnosis he's fine. But when the condition is more complicated you need an experienced epileptologist. Now we see the Head of Neurology at Arnold Palmer, it’s a level 4 epilepsy center (designated by the NAEC). He responds so quickly to emails and checks in on her religiously. Anything we need, he wants to get it done, we work well together.
It’s up in the air, which is ok. Nothing can be predicted, so we take it one day at a time. I hope we can get things under control, possibly with a less-invasive second surgery. Our hope and goal is that in a couple of years, she'll be seizure free. We believe we have been given a journey, and that this is our path to help raise awareness.
You can follow Delaney and Michelle’s epilepsy journey on Instagram, follow them on @hope.for.delaney or buy a Hope for Delaney t-shirt here. If you would like to share your own story, contact our team on firstname.lastname@example.org.