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Posts (12)

1 day ago · Psychiatric Problems Associated With Epilepsy in Epilepsy & Seizures

My son did see a psychologist for a few months to work on his anxiety & fears. He is in high school and a competitive swimmer. That helped a lot to get him out of the house & live life again. Lucky for him, his seizures happened at home. His friends know, but others at school don't. Teachers have been very supportive. I believe his therapist really helped. We started that early on with his journey. My advice, go talk about it with a professional. It's too much to sort out on your own. Best- Jennifer

Fri, Jan 3 9:19am · Has anyone been seen at one of the Mayo Epilepsy clinics? in Epilepsy & Seizures

So he had 4 seizures in 4 months. His are focal, gets an aura before occuring. He had more auras than seizures before medication. His eeg's were all normal. He spent 3 days in hospital to be video taped & extended eeg – nothing. The first mri showed the back of his brain was older than his actual age. That is what Mayo checked again last month with the more detailed mri to make sure his brain was not changing & looked at blood flow.

Fri, Jan 3 7:02am · Has anyone been seen at one of the Mayo Epilepsy clinics? in Epilepsy & Seizures

Good Morning,
Yes, we took my son for a second opinion at Mayo Rochester Mn. All previous testing, hospital stays, etc was sent to them before our appointment that we completed over four month span before epilepsy diagnosis in Twin Cities. We brought all medications/supplements with us for them to review what he was taking. On the day of the appointment, they started with an EEG and then we met with a few doctors to really detail out what his episodes looked like. Questions like-Does his head go one way or the other during a seizure? What do his eyes look like? What is the color of his skin? How is he breathing? What do things look like after the seizure? We really needed to think about those things because it happens fast, but dramatic you also can't forget. He at the time was taking Keppra and the side effects were bad for him, so we started transition to Trileptal. That was a miracle itself because we had our son back. They recommended neuro-psyc testing and a more detailed MRI in 6 months. They take A lot of time talking to you about their thoughts, opinions as well as your questions-so have some prepared. Our son was only 17yrs, so we had a lot of questions about school, sports, alone time, driving, etc. We are now with a clinic in the Twin Cities and feel better equipped to handle things as advocates for our son, but Mayo will always be our back up plan if we don't feel right about a situation. We do not regret the time and money for getting the second opinion and review. Even our clinic in the Twin Cities was happy we were going there for the MRI as they are so good and detailed, better than in the Twin Cities. Does that help? I am sure there is more I can say, but not sure what you may want or need. Best of luck to your husband, I hope you get answers and a plan.

Dec 24, 2019 · Would you recommend Rochester best Mayo Facility for Epilepsy? in Epilepsy & Seizures

Great question! Rochester Mayo was our 2nd opinion for my son and we were extremely pleased. But, we live in MN so it was easier for us. They are very thorough and we felt it was worth it.

Dec 9, 2019 · Any experience with the medication Trileptal? in Mental Health

I can only speak through my son, but he takes it with no issues. Maybe a little weight gain. He is also very sensitive as well to medication & once a vaccination. He takes for seizures.

Nov 22, 2019 · Keppra in Epilepsy & Seizures

So my son was on it as well, same dose & awful side effects. After 2 months, we switched to trileptal and it was a god send. He has focal seizures, so not sure about you. It is not a way to live, talk to your neurologist about options or get 2nd opinion.

Nov 12, 2019 · Any experience w/ med: Oxcarbazepine (Oxtellar XR, Trileptal)? in Epilepsy & Seizures

I am going to speak through the experience of my son, diagnosis at 17 yrs. He started with keppra and had bad side effects with that drug. We transition to trileptal and it was great. It is so different for each person. It improved his mood and only down side was a bit of weight gain. He works out to keep it in check. He takes 900mg twice a day for focal seizures.