Badges (1)

Groups (1)


Member not yet following any Pages.

Posts (10)

Nov 11, 2017 · Been to an Epilepsy Monitoring Unit? What’s it like? in Epilepsy & Seizures

All the time we were at Monitoring unit , the pediatric staff was so kind and attentive to me and my family . They provide video games , tablets and toys to give him confidence and distraction … the meals were nice and the nurses and doctors really good! I can’t say that any could be done to give us , the family, some relief in those days… but the trust in the hospital , doctors and everybody that was involved in the procedure gave us confidence to continue… my heart was full of fear , but there was so much hope that we could resist it! Thank you all in Saint Mary’s hospital!

Nov 11, 2017 · Brain surgery in Epilepsy & Seizures

We have decided for Mayo Clinic after long research and we think it was the best choice for us . He had surgery with Dr Nicholas Wetjen , a great surgeon !
He also have gone to Dr Lily Wong that is so Kind , she is Neuro Clinic.
My son have weakness on his right side too … but we can do physical therapy and it could help him … after surgery it became worst for a short period and now he is doing better…but his activities as OT and speech therapy are daily. His seizures as he had before surgery doesn’t happen anymore… until now. He had some dizziness, lost his eyes control eventually, but not the classic seizure…
the only permanent problem with this surgery was that he lost his side vision on the right…
But we are happy and trying to get over it!
Really hope I am helping you! Be sure I am right here for you and your daughter! You can answer me any questions and doubts. With love ❤️

Nov 11, 2017 · Been to an Epilepsy Monitoring Unit? What’s it like? in Epilepsy & Seizures

My son is 6 years old and I was there in January with him for 3 days…it’s a horrible experience …. you have to wait patiently to the seizures, without sleeping… and the anxiety and fear all over the days and minutes are terrible. In the third night he had a seizure that lasted 45 minutes and I thought he would not resist… My family were at the hotel while it happened, but the staff was nice and friendly, they helped me … It was not easy at all , but extremely necessary to his treatment and surgery… so I was thankful we have done that in Mayo Clinic.

Nov 10, 2017 · Brain surgery in Epilepsy & Seizures

Hi@colleenyoug !
My son is fine nowadays, his dizziness and weakness is giving him a break… it’s happening once a week for while….we are hopeful and trusting in a better future! In February we are going to Mayo Clinic for an appointment and new tests. Thank you for your attention!

Nov 9, 2017 · Brain surgery in Epilepsy & Seizures

Hi Anna! We choose the surgery when the doctors had told us he would have a brain damage because of his seizures… we so tried to keep him safe… it was not an easy decision… but I hope we have done the right thing for his future!
We really hope your daughter will be fine and healthy! Best wishes!

Sep 27, 2017 · Brain surgery

Hi! I am Patricia and my 7 years old son had epilepsy surgery at Mayo Clinic in February 2017. He had left hemispherotomy and he was doing great until May.
Then we discovered from a MRI that he was having a brain hemorrhage and he was feeling dizzy and weak.
We are from Brazil, so we returned to United States to try to fix that.
Fortunately it stopped bleeding and he didn’t need another surgery.
Now his dizziness is happening daily in some weeks, and he loses his eyes control, and although he is aware , the doctors said us it maybe seizure again.
I am so scared ! I really expected that with this surgery he would be seizures free forever.
Do anybody have this surgery and is doing good ?
Sorry about my poor English!
With best wishes

Apr 1, 2017 · Post-Intensive Care Syndrome (PICS) - Let's talk in Just Want to Talk

Thank you ! He is doing great now !
We wish you the best! God bless your family!

Mar 31, 2017 · Post-Intensive Care Syndrome (PICS) - Let's talk in Just Want to Talk

When my son was transferred out of ICU , I realized how lucky we were… How thankful we must be… How great were the Mayo doctors and the staff … How my dreams were coming true.