Has anyone had a major epilepsy study done as an admitted patient to hospital for 3-6 days to test/induce seizures for epilepsy diagnosis?
Any at Mayo Clinic or another Level 4 Center? Thank you.
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My son (17) was just released from the epilepsy monitoring unit at Mayo yesterday. He was in for 5 days; it was extremely beneficial for us. He had sudden onset in July and was having 1-2 tonic-clonic a week. Keppra was not working for him. They were able to confirm diagnosis and get him to a therapeutic dosage of depakote before sending him home. Our son hated it, but we’ve never slept better than when he was there. The staff were amazing. He had 2 seizures while he was there, one while he was in the bathroom.
My son was around 14.
My son around 14 when his throat starting closing for around 20 seconds during sleep. When he graduated high school at 17, the throat closing started occuring anytime of day. Ultimately, he ended up in full blown seizure: not sure if its tonic-clonic or gran mal seizure. Doctors here in Atlanta thought he had laryngospasms NOT epilepsy. Finally, We went to Mayo Clinic for 5 day observation in Epilepsy Center. My son experience throat closings during sleep- but it never escalated to a full blown seizure. Mayo Clinic gave him several epilepsy medications included Depakote but nothing stopped the throat closing. I had done extensive research on the NIH website and other sites. I found documentation on a child who's experience was similar to my son. The child in the experiment was given an old medication called "Carbamazepine" I took the info with me to Mayo; the doctor did not use the research until we were being dismissed; he sent us home with Carbamazepine. Long story short – my child took 100 mg of Carbamazepine; he experienced uninterrupted sleep for the first time in 2.5 years. Emory in Atlanta did an epilepsy work-up on him. No clean straight-forward diagnosis of Epilepsy seen in the brain however the medication works and they added Vimpat.
Good Morning @mrlndcurtis
I can imagine how difficult and distressing moments you have been through with your son. Thankfully, he is doing better and his throat closing has stopped.
My situation was far less distressful than yours, I have temporal lobe epilepsy with a lesion on my hippocampus on the left side (my epilepsy is refractory). Getting knowledge and researching in situations of chronic diseases such as epilepsy was fundamental. If I had not done it, I do not think I would be sitting and answering you. I see today how studying epilepsy and my type of epilepsy especially was important to my recovery and well-being. If I had only followed what the different doctors I have seen (around 10) had told me, I would most probably be lying in my bed and would have done the brain surgery (LITT) staying with very little memory. Thankfully, I went to see a second opinion from a neurosurgeon, who was totally against this surgery, as it would bring me more harm than benefits. This neurosurgeon has recommended me an epileptologist with whom I am still today (almost 3 years).
My advice is do not leave all in the doctors' hands. Do your own research and be a partner of your doctor. Still today, I continue doing my research and do bring lots of information to my epileptologist and ask him questions. Though he is a doctor of conventional medicine, he is very open.
The Epilepsy Foundation has great material and has been my major source of information and research, especially at the beginning. Recently, I have been following Dr. David Perlmutter, a neurologist and neuroscientist with an integrative and functional medicine approach (he has a nice newsletter). He has written an article about how gluten can trigger seizures. This confirms my experience, I have been gluten-free since 2022 and this has reduced more than 60% of my seizures. I see that there are other solutions to control our seizures than just AEDs, devices such as VNS, RNS, and surgery.
My best wishes to you and your son, that you and your family can live moments of peace and joy.
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