Has anyone managed to have their child assessed by Gillian Baird or neurological assessments at Great Ormond Street?

[bodenbiscuit]

I have a 13 year old dd with severe autism and epilepsy. She is extremely complex and most of the doctors she sees locally say they are stumped with her behaviours.

It has been suggested to me by a number of people that she may also have Tourettes but her doctor brushed this off. I think she definitely does fit the criteria for the condition.

I think she needs to see someone really specialised in neurological disability. We are willing to pay. Does anyone have any idea how to go about this as we live in the Midlands?

Anyone?

Thank you so much - that is very helpful indeed.

Hi Bodenbiscuit. We asked for a referral to GOSH for DS's epilepsy as we didn't feel that we were getting anywhere locally - our local consultant had to do the referral. Through GOSH DS ended up having a three day assessment at Young Epilepsy in Surrey which involved psychological and developmental assessments as well as EEG investigations. Wonder if that would be useful for your DD?

Thank you - I think a private referral is the best option. Sure, you are right that Gillian Baird no longer does private work. I think the waiting time to see her would be too long.

WillBill - thank you. We also had trouble getting dd1's epilepsy recognised. Why are they so keen to brush problems under the carpet? I actually reported her paediatrician to the PCT because he was saying she fainted when she was clearly having convulsions.

The problem we have now is the possibility she has some other neurological problems going on that are interacting with her autism, possibly Tourettes. But nobody is willing to investigate that at this point.

If you can get a referral to Gillian Baird and her team at the Evelina then in my experience it would be well worth the wait. Her neurologist took moments to diagnose my son's Tourette's (also ASD) when other local doctors including CAMHS) had been unhelpful for years. She has been a complete godsend over the years for both DS and me.