hello everyone

Well harry, myself and his dad had our first appointment with the consultant regarding getting harry onto this trial.

We have to wait for the doctor to view his previous MRI scans to see if his SEGA's are growing and if they are at the required size.

Hopefully we'll find out soon whether he can go to have another MRI to confirm if he can be accepted on to this trial. I'm so nervous that he won't be accepted. We've been waiting for this for 4 years now.

At the end of the day I'm just so pleased that there seems to be great strides with treatment of TSC.

I'll keep everyone updated

caroline

Hi Caroline

We really look forward to your updates on this. Maybe you could post ever 2 weeks with progress reports? If anyone else is on the trial maybe they could do the same? I am sure we are not the only ones that hope this drug is successfull and it would be great to get feedback.

Kind regards
Adrian

WISHING YOU all the best for Harry, Caroline, please keep us updated.

Kind regards
Jacqui

Hi all

Well we have an appointment for the 13th August for Harry to have his MRI and a 24hr eeg.

The consultant has requested his previous MRI scans and i believe they are still waiting to receive these. Sounds terrible but i've got my fingers crossed they've grown enough.

Will definately try my best to update every 2 weeks if he gets onto it.

Caroline

Just had a call from the consultant about his MRI scans. He has a SEGA of the appropriate size so we're through to the initial screening stage. So far so good.

Caroline