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5 days ago · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Hi!
My name isPatricia and I have a little son that has intractable seizures. As you, I feel daily that I am not able to help him. He had surgery at Mayo in February 2017, but his spells didn’t end. Now he is taking Keppra and trileptal and the seizures are happening almost everyday. He needs another surgery… we are planning to go… but we are from Brazil and we don’t have any insurance, so it’s all paid by ourselves. We will have to go soon … and I am really afraid of this new procedure.
He is not going to school, or playing anymore… everything is triggering the spells.
I hope your daughter be cured as my son.
With love
Patricia

Fri, Feb 1 2:48pm · Seizures and surgery in Epilepsy & Seizures

Thank you for your attention and advices. I will never approve another procedure in my son without absolute certainty… I don’t know if I would approve at all …
we are waiting for his tests results.

Thu, Jan 31 3:46am · Seizures and surgery in Epilepsy & Seizures

Dear @colleenyoung , sorry for not answering at time, it was really difficult the last days. My son had his video EEG done and some MRI and Spect.
The Mayo doctors told us he will need another surgery… but it is a really unique procedure , that was never done at Mayo Hospital.
So, in February, they are going to discuss his tests in a neurosurgeon meeting in Rochester and then , at the end of the month they will call us …
I don’t know if I would have courage to submit him another procedure…
They increased his medication a lot.
We are waiting …

Tue, Jan 1 10:17am · Seizures and surgery in Epilepsy & Seizures

Hi! My son also had surgery at Mayo in February 2017 and today we are here at Rochester Saint Mary’s Hospital and he is having another video eeg monitoring. It’s not easy at all, but we have to decide what is going to be his next step, although he continues having spells. Maybe another surgery will be necessary. We are really afraid!
But we will continue hoping he will be fine…

Nov 1, 2018 · Insula Surgery for Epilespy – What can I expect? in Epilepsy & Seizures

Hi Lisa!
Thank you for your attention! My son is better this week, he restarted Keppra and the seizures have stopped for some days and we hope it lasts.
We will return to see his doctors in Rochester in January and we are really concerned about it.
First he is going to have some tests done at Mayo Clinic. Those tests have already been done here in Brazil, but they would like to have it done in their hospital.
Dr Wong , his brilliant neurologist, called us last month and said we will have to go , and maybe another surgery at insula would happen , according to his results.
I am scared ! We are providing money and courage to return.
We don’t know what to do.
With best wishes
Patrícia

Oct 16, 2018 · Seizures and surgery in Epilepsy & Seizures

It is really sorry that your granddaughter isn’t better.
My son had a surgery at Mayo Clinic in February 2017, hemispheretomy .He has now just a half of his brain and he is the same child he used to be before surgery . He has a normal development to his age (8 years) , right hemiparesis and he lost his size views . His seizures don’t stop, but it has changed… he is taking medicines daily ( Keppra and Oxcarbazepine), and we have to return to Mayo Clinic for another surgery… it’s very scary. We thought he would be seizures free after all , but it doesn’t happen.
We are afraid that another surgery would be dangerous and I really understand your feelings, but you have to decide about her life and if this surgery will be necessary to bring her back … maybe it’s her chance.
It was not easy for us to decide it, But we were so scared about losing him …
I am sure you will do the best for her !
With best wishes
Patrícia

Sep 25, 2018 · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

I am so sorry to hear that your granddaughter is still in coma. Try to contact Mayo appointment office to request an online service.
The number is 507 5383270

Sep 4, 2018 · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Mary , I really hope this could help your family, call the appointment office 507 2849974 to ask for a video appointment. Maybe they could give you some ideas for her treatment.