Name: Jarod

Sex: male

Date of birth: 1998

Now lives in: Australia


Epilepsy info

Diagnose:
Dravet's Syndrome, We are awaiting genetic testing for the SCN1A mutation.

type(s) of seizures:
tonic, clonic- tonic, absence, myoclonic & complex partials

frequency of seizures:
November 2004: Currently tonic clonics every 6 weeks

Medications used

Current:
epilim, clonazepam and topamax: we are getting our best seizure control ever

Previous:
phenytoin: allergic Ė caused rash, termp, status seizures
clobazam: blamed this for his developmental issues at age 1, now believe it was the Dravetís
Lamotragine: great developmentally, but believe it was responsible for myoclonic status lasting all day.


Alternative Treatments

Fish oil: Heís currently learning and developing well but I canít necessarily credit the fish oil with this success as he is also having far fewer seizures. It certainly isnít hurting.


Personal Notes

Jarod had his first episode at 4 months (a status clonic seizure). He developed normally for his first 12 months to the amazement of the doctors (after having so many frequent seizures). After this he stopped progressing and in some situations regressed. His myoclonics started at about the same time as his first major seizure and heís been on medication since that age, with very minimal success until now. He is now 6, but developmentally estimated at 15months. Heís just started to make a few tentative independent steps which is promising. Speech remains difficult for him with only a few recognisable words being demonstrated, although he is otherwise very vocal and loves to be heard.


Contact

Mum: Shazza, shazzas01@hotmail.com
Shazza's Website: click here to visit this site!
                          http://members.optusnet.com.au/shazzas01
                          You just have to check Little Man's Book!!


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