Name: Caeden Shaughnessy

Sex: male

Date of birth: May 10, 2007

Now lives in: Little Elm, TX, USA


Epilepsy info

Diagnose:
Dravetís Syndrome October 27, 2008-DNA test completed 10/6/08

type(s) of seizures:
Partial, Absence, Tonic Clonic

frequency of seizures:
The tonic clonic seizures happen about once a month and the absence seizures happen frequently throughout the day.

Medications used

Current:
Keppra, Depakeene



Previous:
Phenobarbital, Zarontin


Alternative Treatments



Personal Notes

Caeden had his first seizure when he was 7 months old. It was an absence seizure so we werenít really sure if it would happen again. At age 9 months he had his first tonic clonic seizure and there was no denying what was happening. He went to the hospital and had a catscan, an EEG, an MRI and a spinal tap. Everything looked normal so we were sent home. He began having partial seizures weekly after that which usually occurred with a temperature change. With each seizure, the Drís would increase the dose of his medication. My husband and I were getting very frustrated because it didnít seem like anything was working to completely stop them and we didnít agree with the Drís. We knew there was something bigger going on with our baby. We were admitted into the ICU in late October 2008 for a tonic clonic seizure that no one could stop. Iím actually not sure how much Adavant he received, but I know it was a lot. He was very sick and had a high fever as well. During our 10 day ICU stay, we received the results from a genetic test we had done the beginning of October. He has Dravetís syndrome.
The Drís kept saying that the diagnosis was not good and after researching on the internet, we could understand why. However, we were also told that ďhis story hasnít been written yetĒ which I just love. We are still having a hard time accepting everything as he is such a happy and intelligent baby.
We are getting him into OT, PT and speech now and like all Dravetís parents are going to fight for him continuously.


Contact

otter21@mac.com, Jennifer Shaughnessy


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