I need a medical consultation from doctors at Mayo Clinic.

Posted by aceksa @aceksa, Feb 7 2:13am

I am writing to request assistance regarding the treatment of my son, Hosam Mansour Aldowess, who has been suffering from generalized epilepsy for approximately 7 years. I have attached reports regarding his condition. His condition began after he fell on the back of his head at the age of 18, resulting in recurrent seizures due to generalized electrical activity affecting his entire brain. Despite undergoing various treatments in our country, including medications such as Depakine Chrono 500 mg in the morning and 750 mg in the evening, Lamotrigine (Lamictal) 175 mg in the morning and 175 mg in the evening, Perampanel (Fycompa) 4 mg in the evening, and Propranolol (Inderal) 10 mg in the morning, his condition has not improved significantly.

My son is currently experiencing severe side effects from the medications, including hand tremors, numbness, and excessive sleep, and he continues to experience seizures. We are in urgent need of specialized medical care and effective treatment.

Therefore, I am seeking your assistance in considering the possibility of my son receiving treatment at your esteemed hospital. If there are any advanced treatments or new techniques that could help improve his condition, we would greatly appreciate your guidance and support.

I am willing to cover all costs associated with the treatment, as it will be at my own expense. I would be grateful if you could provide me with details regarding available treatment options, the associated costs, and any available dates for treatment initiation.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Laurie, Volunteer Mentor | @roch | Feb 7 8:01am

@aceksa,
Mayo Connect is a support group and most members are not medical professionals, but have personal experience with variety of medical conditions.

If interested in a appointment at one of the Mayo Clinic locations; start here: http://mayocl.in/1mtmR63

Appointment times and cost vary depending on patient and type of testing needed. The appointment coordinators can answer those questions.

Colleen Young, Connect Director | @colleenyoung | Feb 7 10:17am

@aceksa, to get answers to your questions about costs, treatment options and to request an appointment with Mayo Clinic epilespy specialists, please start here: http://mayocl.in/1mtmR63

aceksa | @aceksa | Feb 7 10:30am

im not in usa so can i email the doctor

Colleen Young, Connect Director | @colleenyoung | Feb 7 11:16am

In reply to @aceksa "im not in usa so can i email the doctor" + (show)

@aceksa, you can use the same form as an International patient (parent) http://mayocl.in/1mtmR63

Please see further information about International Patient Services https://www.mayoclinic.org/departments-centers/international

kb2014 | @kb2014 | Feb 7 10:59pm

I have a seizure risk myself from a craniotomy done in 2014. I only take lamotrigine 100 mg twice daily. I have been seizure free over ten years. I am a retired nurse was RN. Your son does need expert care. There seems to be a lot of meds here. When was the man's last eeg? Do you know the results? I had an eeg in 2015 which showed encephalopathy for one too many anti epileptic drugs. At that time they were depakote and clonazepam. The neuroligists at the time refused any dose reduction despite my request and me understanding the risks. I switched to another neurologist who agreed dose reduction was warranted. I wax switched to topirimate then later tapered off clonazepam. After that my dose of topirimsye was reduced. I can in no way diagnosis only described my experience. It sound like your son is failing anti epileptic drugs and I never did. I hope you can get to mayo. Take care.

Chris Gautier OR Santosha | @santosha | Feb 8 5:15am

Hi @aceksa
I am from São Paulo, Brazil. In 2021, I was in a difficult situation with my epilepsy and had first an online appointment with Mayo Clinic. It was Covid times, I do not know if it is still possible to schedule online appointments with the Epilepsy Center at Mayo Clinic now that Covid is over.
As @colleenyoung oriented, I scheduled this appointment through the link she shared with you.
Last weekend, I watched a movie on Netflix called Lucca's World. It is a movie based on the true story of a boy with severe brain injury, recurrent tonic-clonic seizures and a new treatment device called Cytotron. It might give you some new hope. Here is the link to the trailer: