Amanda & Penelope’s DOOSE diagnosis

  • November 9, 2020
  • 4
In this article

Family life

For the last 15 years, our little family - me, Derek, and Penelope - have lived in the San Francisco bay area, this is our home. Every day usually involves working and caring for Penelope. I’m a social worker by profession and Derek works in pop-up restaurants. I’m currently on leave to take care of Penelope. 

Epilepsy - Penelope’s diagnosis and the journey so far for the family

At 2 months old, I had noticed some movements that I was a little concerned about. Everyone told me “don’t be worried”, but I just knew something wasn’t right. 3 months on, it was increasing.  I noticed strange and involuntary movements, I would cry because I felt like no one was listening to me. It was a very stressful and difficult time.

Penelope was 6 months old when the pediatrician got her an EEG. Her neurologist thinks it’s Myoclonic Atonic Epilepsy (or DOOSE), but this doesn’t make sense to me as she doesn’t match all of the symptoms.

She was prescribed Keppra, and we were pretty nervous about it as we’d heard some nasty stuff about the side effects. Her seizures increased for the coming month, even in one incidence she experienced a tonic-clonic seizure. Months on, she now rarely appears to have any seizures at all. 

The next steps are to see how the medication goes over the next 2 years and continue to rely on the EEG. It’s hard, and upsetting, but we’re a strong family unit and we’ll get through it.

Learn more about EEG's and how they work here.

Epsy & tracking Penelope’s condition

I downloaded Epsy to track Penelope’s seizure activity. It did everything I needed; I was able to track her seizures and get medication reminders. It’s a new routine, and Epsy really helped with the change. It was really important for me to track her seizures and to understand how the medication was working. As she’s unable to remember these things herself or vocalize how she’s feeling, tracking was crucial. The content also made me feel like I was part of a community.

Reading stories such as Kelsey’s made me realize that people can live well with epilepsy, you’re able to live a normal life - this inspired me and helped me with my journey.  

Dealing with the diagnosis.

The first 2 weeks were so hard - I was thinking “what could happen?”, “you’re my little baby, are you going to be ok? I’ll always be here for you no matter what”. It was denial, then a process of acceptance, everything feels OK now. I needed to come to the reality myself and ask ‘what am I projecting onto her?’ rather than what she needs. I’m so thankful that happened.

To help me deal with the diagnosis, I reached out to the people closest to me, and lots of them recommended that I needed to find a community who knew what I was experiencing, and weren’t they right! I browsed online and found supportive Facebook groups. In your inner circle, it can be hard to find people who have the same shared experience as you because it’s so rare. Secondly, the Epsy user stories really helped me too. 

To look after myself I try to write, I started to focus on my own projects after the diagnosis. I’ve written a children’s book, and I’m also building my own online community! I’m working to take care of myself too.

Amanda’s message to other caregivers.

“This too shall pass” - it sounds a little cliché, but it’s just so true. This moment will change. It’s not that it will become instantly easier or harder, but it will change. Although it feels it, it’s not the end of the world. Be very compassionate and kind to yourself - it’s OK to feel the ways you are feeling! 

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