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6 year old with Epilespy - advice needed please


Janie101

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Hi all

 

We moved to Central Coast, NSW in February this year. Our 6 year old son has diagnosed epilepsy and I brought 4 months supply of his medication with us. Before moving here, he was having about 3 seizures a week but since we have been here, he's had none (touch wood) :-)

 

Anyway, I visited our local medical centre and got a referral to a consultant in Gosford. When I called (still think that's weird sorry after paying $60 to have to ring myself - but hey). Anyway, when I called, the consultant wasn't taking anymore patients because he was retiring but I could have an appointment with another one but would need another referral from doctor?

 

So, I gave up on this one and went to Erina Medical Centre (didn't pay for this as he is only 6) - got a referral to another consultant in Gosford. Rang them and they don't take children !!!!! They could have done MRI scan, EEG tests etc but I don't need these. We have a diagnosis (bought all stuff over with me from UK). I am just looking for a consultant to manage his condition, ie: when to increase medication (as he gets older and heavier), when to consider taking him off medication if he is seizure free for x number of years and where to go if seizure start again and change?

 

I have a couple of phone numbers of other consultants given to me from a friend of a friend. Not sure what I'm asking anymore really? I think I just want to understand the system a bit better, know what I will have to pay, whether it's worth getting medical cover for him and if anyone else is in same situation or can recommend a consultant or help me understand all the different hospitals in Gosford??

 

Thanks

Jane

:confused:

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Under the age of 15 a pediatrician usually manages their conditions. My daughter has type 1 diabetes and she was 12 when diagnosed and had a pediatrician until she was 15. Then she moved to a hospital adolescent clinic.

 

Its usual for us to phone specialists for appointments and you will have to pay a fee and probably will not get the full amount back from medicare.

 

If you were to get treatment for your son as an outpatient at public hospital then you would not have to pay.

 

Good luck

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First of all - that's fab news about his seizures reducing :)

 

I can't help in NSW, but I used to work at the Royal Children's in Melbourne and they have a fabulous Epilepsy program. It's mostly aimed at difficult to manage cases, but they may well have some contacts for you in NSW. Cancel that - I'm sure they'll have contacts in NSW! Or even just someone helpful on the phone to give advice :) Simon Harvey is amazing - as is the rest of the team.

 

epilepsy.program@rch.org.au

 

http://www.rch.org.au/cep/contact/index.cfm?doc_id=2090

 

Fingers crossed they can help :)

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