Monday, 21 June 2010

Neurologist Appointment

This afternoon Violet had her Neurologist review.

This was the first once since changing and being weaned from Tegretol to Epilim. Since being weaned she has had 2 absence seizures. They did increase her Epilim dose after these recent seizures and at this stage he wants to keep her on the same dose until she has her next status epilepticus and then he will increase them again.

He said also told me something that I had failed to realise, all Violet's seizures have resulted in status epilepticus since she started having seizures 3 years ago :( minus the 2 absence seizures she had recently. Think I might have to get my Epilepsy Book out that I bought when Violet first started having seizures and read up about it all a bit more! Knowing this doesn't effect the management of her seizures as we always have to go to hospital for Violet anyway as she is unable to come out of her seizures on her own, her oxygen levels are compromised and in case it is shunt related.

He was very surprised to hear Violet looks like she would not be getting any funding at school next year and he is going to write a letter on Violet's behalf outlining the needs of Violet and why she needs a teachers aide. So nice to have such a great rapport with Violet's specialists and that they feel the same way as I do about her and what she needs.

She will be reviewed again in 6 months all being well.

4 comments:

April said...

Glad you have a doctor who will advocate for you! Good luck!

Laura said...

I'm glad that all is well with Violet, minus the seizure activity. It is so wonderful when you have a good, supportive working relationship with the professionals who care for your child--it makes things so much easier. I hope his letter helps Violet get the services that she needs!

Alison said...

Great to hear the neuro is on your side and will write a letter for school funding. I'm sure the paed will as well.

Samantha said...

I am so glad to hear the Neuro is going to bat for Violet :)