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Tue, Feb 26 3:41am · New to keto in Epilepsy & Seizures

Hello all, through our involvement in the 100k Genome Project, a mutation of one of our genes has been identified as the direct cause for our epilepsy. I can't describe my feelings after 55 years of believing that I was just the odd one out, then 29 years for my son; watching his condition increase in severity as time goes on. The upshot of it is that he's been advised to go onto the ketogenic diet, beginning with modified Atkins. We're still
waiting for an appointment with the dietician so are doing our best with books and the Internet. Any advice will be warmly welcomed. Thankyou

Aug 12, 2018 · Second surgery for my 28 year old son. Advice needed please. in Epilepsy & Seizures

Neither are suitable for my son. He's currently having his meds reviewed as an in-patient and is coping well with the changes so far.

Aug 11, 2018 · Second surgery for my 28 year old son. Advice needed please. in Epilepsy & Seizures

Good morning Jaje, yes, David and I both participated in the Epilepsy Society forum. I log onto that site as Wendygrunch ( a silly pseudonym). Just to update ypu all; David has been at the Epilepsy society for a week so far, having his meds overhauled under close supervision. He's actually quite content there. There are a dozen or so inpatients, mostly younger people, so David is in the rare position of being the norm, not the exception, as a young man with yet to be control seizures. There is a large day room where most of the patients spend their days together; playing pool, watching films, eating together as a community etc. His meds are being changed quite rapidly, which obviously couldn't be safely done at home. I'm taking my mother to visit him on Monday. The only drawback for me is that it is a 2 and a half hour drive, but I think that it's actually been good for David to have some relative independence.

Jul 23, 2018 · Second surgery for my 28 year old son. Advice needed please. in Epilepsy & Seizures

After a truly dreadful night of seizures, a ray of hope came by way of a phone call from David's hospital (The Epilepsy Society, UK) with a date to admit him for 2 -3 weeks to review his meds, under the watchful eye of his overall consultant; a man we trust. David will be admitted on the 5th August. For the first time in far too long, I feel as if I could actually hope.

Jul 20, 2018 · Second surgery for my 28 year old son. Advice needed please. in Epilepsy & Seizures

Good morning Jake, David is doing really well since he and I started to talk with honesty about everything with our family and with each other. Best of all, he has actually gone four whole weeks without a seizure; his longest break in over a year. Because of this, he's much more focused, without the 'hangover' fog that follows frequent seizures. He has decided to defer his decision on surgery until he feels ready; currently we're both in agreement that surgery is a very bad idea indeed for David. I'm angry that the surgeon ever presented this surgery to David as if it was a viable option. I had a good talk with David's consultant, who agreed and is keen to explore other options. VNS is not possible for David. David seems to be truly embracing life, rather than putting things off because of the impending dread of surgery. He's taken on another voluntary job and seems very much happier in himself. Doctors, Surgeons included, are not Gods, just fellow humans; we shouldn't be afraid to question their decisions. I told David that any timescales are his alone; not mine, not the NHS deadlines or targets, just his alone. Thankyou for your support.

Jul 6, 2018 · Second surgery for my 28 year old son. Advice needed please. in Epilepsy & Seizures

God bless you Jake for taking the time to reply in such detail and with such compassion. David already takes a vitamin D supplement and us having his meds looked at again, under a probable two to three week admission to the national centre of excellence girl epilepsy, so we are looking at alternatives. I also have had epilepsy since I was three years old (I'm 54) and was given a very pessimistic prognosis. However…..I am healthy, seizure free (intake my meds), I drive, I work as a full-time Probation officer and have two university degrees. I also, strongly believe, that my son can have a good life, even with his hideous seizures. Thankyou for mentioning the fact that his decision also affects his circle of support, chiefly me. Today feels like a better day; David is going to his voluntary work as a primary school teaching assistant and I'm going to work. The sun is shining too, which always helps in England!

Jul 5, 2018 · Second surgery for my 28 year old son. Advice needed please. in Epilepsy & Seizures

Thankyou. I was brave and had a candid conversation with my son, about my fears and concerns. He has agreed to meet with my sister (a family therapist) and her partner (a Doctor) on Tuesday, without me, to talk things through. He admitted that he doesn't feel fully informed so has decided to defer his decision on whether to have surgery or not, for 6-12 months, during which time he'll access counselling and we'll work together on improving his quality of life. I feel enormously relieved.

Jul 5, 2018 · Second surgery for my 28 year old son. Advice needed please. in Epilepsy & Seizures

My 28 year old son, David, has had severe epilepsy since he was 11; mainly nocturnal, tonic clonic seizures, has been in status several times. 5 years ago, he underwent intracranial eeg followed by resection of the right half of his frontal lobe. He is intelligent, sociable, a keen volunteer and still has seizures. So, he is on a waiting list ( we are in the UK) for a second surgery. This would involved him being awake, because they are going very close to his speech and motor skills areas. A 20% chance of emerging from surgery seizure free has been suggested as have a list of likely negative outcomes, including speech and mood issues, and possible loss of mobility on the right side. I do not want him to have such a highly risky surgery, but he is grasping at the chance, however slim, to be rid of seizures. He is often reminded of the high mortality rate for people with nocturnal seizures of his severity. I feel that the hospital are pushing him towards this surgery and I am utterly terrified. I'd be very grateful for any advice. Thankyou.