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Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
Hello! My name isPatricia and I live in Brazil with my loved family. We were at Mayo Clinic in January to have some tests in my younger son , 6 years old that had terrible seizures . In February 6 th he had hemispherectomy surgery and he is doing great! I would like to share our history and help who are in the same situation.
Thanks
Sincerely
Patrícia
Replies to "Hello! My name isPatricia and I live in Brazil with my loved family. We were at..."
I am so glad for your answer! Thank you very much@colleenyoung.
First of all I have to apologize about my English... I will try to do my best...
My little son was premature, and he had a brain hemorrhage that caused him leukomalacia and hemiparesis. Since he was 6 months he is having lots of medications for epilepsy and the crisis, were worst every time...
His seizures were not so frequently, but really hard, it usually lasts about 20 minutes and he always becomes purple. So we heard about a surgery that could helps him , and we went to Rochester with our hearts full of hope .
We first met the wonderful Dr Wong , so kind and generous that asked us for a monitoring EEG.
They took all his medication and we stand at the hospital waiting for the seizures... It was terrible for all of us... We were scared, tired... It happened in the third night and lasts 45 Minutes.
So they introduced us Dr Wetjen that explained us about the surgery, left craniotomy... Hemispherectomy. He said he would definitely lose his side vision and maybe his right hand would be worst (it was weaker because of the hemiparesis.) And he also explained us that seizures like those would certainly damaged his brain in a irreversible way.
So we decided for the surgery, for his life, for his future...
The surgery was on February 6th , he stayed for 2 nights in the intensive care and then more 4 days in the regular room at the hospital. On the first days he had much pain and fever ...But soon they were gone. On Saturday Feb 11th we were discharged and we came to Brazil some few days later.
It was not easy for all of us... It was hard , we had some much fears , so many doubts... How could a person survive with just one hemisphere?!
But here we are, happy and relieved! He is having therapies since the hospital, and he is walking, talking, thinking as he always did... A beautiful and happy Kid... And from now on with a better future waiting for him !
He is taking Vimpat and Trileptal , and he will take it for more 2 years, and so hopefully as the doctors believe , he will be seizures free.
I would like to say that the doctors at Mayo Clinic were great and they give my son a new life!
Sincerely
With love and grateful
Patricia
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Welcome to Connect, Patricia.
So exciting to hear that your son is doing well after hemispherectomy surgery at Mayo. I'd like to introduce you to other parents who have children living with seizures. Please meet @clairesmom, @mmas, @ketomom, @hermsenk, @inkdfrog, @krd94 and @blath2000. You may also be interested in reading more about them in these discussions in the Epilepsy group.
- #AsktheMayoMom about Pediatric Epilepsy http://mayocl.in/2mzpuVY
- Ketogenic diet for children http://mayocl.in/2j4h7zQ
Patricia (@patrassi), can you tell us a bit more about the hemispherectomy surgery? What was the recovery like for your son? What was it like for you?