my niece is having seisures every day sometimes 2 or 3 a day but cant get any help she tried to take her life a few weeks ago but dosnt seem to get any help from the medical profesion her morther is at her wits end the situation is very bad how can we get medical suport or just a bit of suport for her mum and family . im not sure what drugs she is on they change every few weeks
its heart breaking for her and all the family
Where does she live? Have you called Young Epilepsy help line? They have a nurse on hand who you can asked to be put through to and are very compassionate.
I am so sorry to hear this and hope you will ask to see a neurologist who may even suggest a psychologist as well to help with the depression. There is support out there but you may have to be very determined not to stop until you find the services you need.
Best wishes
she lives in the derby area thank you for the infomation i will pass it on to her mum
Hi, my heart truly goes out to your niece and her family. My son is 17 and has been having seizures for 4 years but was only diagnosed with epilepsy last November, this week alone he has had about 15 seizures. He has been in intensive care twice this year as well. So I fully understand what your niece and family are going through. It has taken me a very long time to finally get people to understand what it is like for us, we now have an epilepsy nurse who advised me to get a social worker so they can do an assessment of our needs. We are also waiting for a referral from the QE. As a family we are limited to what we can do he has to be supervised constantly which I'm sure your niece does too. You can also ring up your local carers support team they will send you a form to fill out and will also come and assess you if they think it is necessary. I really hope this helps you all. One thing I have learned is to just constantly keep asking for help everywhere you can all the best.
thank you so much for your help i will pass the info on to her mother , my niece was diagnosed when she was 13 shes now 24 but this week has been terible doctors change her medication nearly every week , today she has been admitied into hospital to have brain monitored as last
its bad for her at present looks like she will have to where a helmet permanaly and may have to have brain sergery
the family are going thro hell but at least there may be a light at the end of the tunnel
thank you again so much
Hi Sue, my son is 19 and has been diagnosed since 15 but with epileptic activity noticed at 11 and migraines since 7. His tonic/clinics are more often nocturnal when myoclonic activity trips into a secondary generalized. As he also has ME/CFS I can identify with your daily worry. I have not meet anyone with a son of a similar age with similar problems and as carer would find it interesting to share experiences. How has your sons problems affected his schooling? What other changes gave you noticed since the onset of epilepsy? Is medication not working? Best wishes . . .
That's ok, I just feel so much for her I really do. I only have to step out the car with my son and he can collapse. I just hope the hospital do everything they can for her and if you're not happy just say. Your niece deserves all the help she can get. If you can i would like to hear how she gets on.
