Name: Charlotte (“Lotti”) Bitsch

Sex: female

Date of birth: 08/04/1999

Now lives in: Cologne, Germany


Epilepsy info

Diagnose:
Dravet's Syndrome, September 2004

type(s) of seizures:
Tonic-clonic, myoclonic, partial seizures (blurred vision, bizarre feelings)

frequency of seizures:
Myoclonic seizures daily (getting much better over the years, actually 5 to 50 a day), tonic-clonic seizures about one per week, partial seizures frequently

Medications used

Current:
Topiramate, Valproate both in a minimal dosage (higher doses didn’t work any better), Clobazam on bad days (max. during 4 days), Diazepam to interrupt Status


Previous:
Lamictal (general aggravation), Sultiam (a complete desaster), Keppra (three months without tonic-clonic seizures, then gradual loss of effiency, last trial: aggravation)


Alternative Treatments

Homeopathy (very good results, e.g. much less infections, myoclonic seizures nearly disappeared and seizure control is as efficient as before with much less medicaments)






Personal Notes

Charlotte’s first seizure occurred when she was 9 months old during a baby swimming course. She suddenly didn’t react any more and everybody thought she had been swallowing water. I was convinced my child was dying and I was even sort of relieved when after a couple of minutes she started shaking. Later in hospital the exams didn’t show anything unusual, so we went home believing that this had been a singular event. Some weeks later the next tonic-clonic seizures occurred when she had a bad cold with high fever. Diagnosis this time: Febrile convulsions, so we started following her around with a thermometer and paracetamol suppositories…

But tonic-clonic seizures (at the time mostly limited to one side of the body) started to come up more frequently and without any sign of infection or fever and we went to see a specialist. Again exams and again no abnormal results, Charlotte was still developing very well. We tried Lamictal first, which made things worse – after the first take she had her first status, which could fortunately be interrupted after 45 minutes. In July 2000 – she was 15 months by then – myoclonic seizures occurred and we changed to Topiramate, which stabilised the seizure frequency at one tonic-clonic every fortnight. As we went up with the dose, we got the second status, relatively short (35 minutes) but still shocking enough. After a while it went worse again so we added Valproate which is our actual medication after different unsuccessful trials with other pills. In the meantime the EEG shows that there is something wrong, but her MRT-pictures are still those of a “perfect young lady’s brain” (as our doctor puts it).

And that’s in fact what she is: A beautiful, charming, intelligent little girl riding her bike, speaking German and French, starting to read and to write and coping incredibly well with the many, many cuts in the thread of her life (though speaking very well she has difficulties with the vocabulary that describes the continuity of time: she still mixes up yesterday, today, tomorrow, next week …) It hurts to see how much she is handicapped in times of “high voltage” as we call her bad periods - and it makes me proud to see how she fights against it: Shaken with myoclonic seizures, bothered by troubles of vision and bizarre feelings in her mouth she struggles to talk and act normally (and she smiles).

Her good development is in fact untypical for a Dravet child. That’s why our (really excellent) doctors in Bonn never really wanted to believe that she is one. As Lotti’s daddy is French he got in touch with Prof. Dravet in Marseille, who is a charming and very powerful lady in her sixties. She agreed to see our daughter in September 2004 and confirmed the diagnosis of Dravet’s syndrome. She told us that one reason for her good development is certainly the careful medication, especially refraining from the permanent use of Clobazam (or other benzodiazepines). Fortunately our doctors had told us early about the risks of developmental retardation and addiction due to Clobazam or others, which makes it then impossible to use them for interruption of status. (But we were also happy not to desperately need them). Another good news we got in Marseille: Very recent studies give good evidence that the seizures of Dravet children often get much better or even disappear when the children grow older – that would be like paradise.

In the meantime we just try to get along the best we can, not to be overwhelmed by the frequent seizures, the sadness and anger - and to give us a good time as often as we can.




Contact

Mum: Petra (quenel@ginko.de)


© Copyright 2004. All rights reserved.