LGS diagnosis and breakthrough seizure clusters

Posted by amonserrate @amonserrate, Jan 24 3:24pm

Hi. I am the father of a 27-year-old girl which was diagnoses with LGS over 2 years ago and started with Fy-Compa 4mg. She did well for 2 years with almost no seizures, and only occasional ones usually before coming down with an URI or UTI. In June 2024, she developed issues with gallbladders and went thru a chole-cystectomy. We noticed an increase in seizure activity after surgery and the fy-Compa was adjusted to 6mg per day. On December 2nd she was admitted to the hospital and diagnosed with Pancreatitis. Few days after she was admitted, she started to have cluster seizures for the first time. She got transferred downtown Tampa and started with Onfi 5mg twice a day and Keppra 10mg twice a day. Eventually, Onfi was increase to 5/10 daily, becoming sleepy the whole day, but was eventually released. Few weeks later on 20th December, she became non- responsive and was rushed back to the hospital where she ends up intubated because of high CO2 levels on blood and compromised vitals. After been treated for possible sepsis due to symptoms, it was determined that was not the case and it seems that mixing Onfi with Keppra and Fy-Compa was compromising the vitals. She was started on a high-level dosage of steroids to boost the cortisol, to improve her vitals, and a significant quantity of fluids via IV. But the treatment led to edema including her lungs. Other meds were used to reduce the edema and improved lung performance. It was noticed that significant jumps in sodium level might triggered more seizure events. Even after using a rescue med, clusters can last up to 2 hours. Fast forward, we are still at the hospital with no idea where this is going, as we feel the neurology team still does not have a grip on her seizures. Now she just got started with Vimpat 25mg today, plus Fy-Compa 8mg and Keppra 1000 mg twice a day but still having seizures. It was determined that Keppra was not effective and will be eventually eliminated.
We need help. I found the information about Mayo Clinic Neurology team online and requested an appointment. We got a phone call, but it did not sound too promising, looking like if we get called it would be around March 2025. At this point, we need to find a way for my daughter to be seen sooner by the Mayo Clinic team to see if they can really help turning this situation around. Any information will be truly appreciated. Thanks in advance for your response.
Dad

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Chris Gautier OR Santosha | @santosha | Feb 2 5:43am

Hi @amonserrate
Yesterday, I saw a wonderful movie on Netflix called "Lucca's World". It is based on a true story. I thought much of you and your girl and many others with huge challenges in epilepsy.
Here is the link with more information on this movie: https://about.netflix.com/en/news/luccas-world-is-coming-to-netflix-or-watch-the-trailer-now
I have not yet researched about this new treatment, but I will certainly do. This might be a new hope for all of us!
Kind Regards,
Chris (@santosha)

Lisa Lucier, Moderator | @lisalucier | Feb 4 11:10am

Hi, @amonserrate - just wanted to check in and see how your daughter is doing?

amonserrate | @amonserrate | Feb 10 8:55am

Amanda continues to have seizures. ONFI was faced out, and replaced by Vimpat, up to 100mg twice a day, with FyCompa 8mg once a day and Keppra 1000mg twice a day. Doctors are now floating the idea of alternative treatment including vague nerve stimulation or even brain surgery, which we are no entertaining at this point. Seizures continues to manifest as clusters. Sometimes they are space out every five minutes or so with short durations less than 10 seconds, but other times become more frequent with longer durations. During the events, her pulse increases rapidly up to 130s - 145s with sudden drop. Sometimes her pulse increases slightly to less than 110. Depending upon the magnitude and frequency, we have to give her the rescue medication which takes some time to stop the seizure activity and make her sleepy.
She can definitely benefit from a second opinion at Mayo Clinic as I do not believe the local neurology team have a grip over the situation.

amonserrate | @amonserrate | Feb 10 8:56am

In reply to @santosha "Hi @amonserrate Yesterday, I saw a wonderful movie on Netflix called "Lucca's World". It is based..." + (show)

Thanks for the note. I will take a look at this.

Chris Gautier OR Santosha | @santosha | Feb 11 4:46am

In reply to @amonserrate "Thanks for the note. I will take a look at this." + (show)

@amonserrate
Good Morning
Has Epidiolex made from medical cannabis been tried? It could benefit your daughter. Here is a CNN special edition on medical cannabis: https://www.youtube.com/watch?v=cY2ZzeWc3_g&list=PLjjNLpxtjihMuEy0geqIqkBGTKTkFxIr4&index=56
I send also a webinar on medical cannabis from the Cure Organizations: https://www.youtube.com/watch?v=QZ5yaaIB8fM&list=PLjjNLpxtjihMuEy0geqIqkBGTKTkFxIr4&index=55&t=360s
I myself take pure CBD and feel much better.
Hope this brings you new hope as well!
Chris (@santosha)

amonserrate | @amonserrate | 3 days ago

In reply to @santosha "@amonserrate Good Morning Has Epidiolex made from medical cannabis been tried? It could benefit your daughter...." + (show)

Amanda was using Epidiolex for only 2 weeks. During that time, she was having issues with high enzymes levels (Liver), and it was decided to suspend the medication. However, shortly after she was diagnosed with Acute Gallbladder and underwent surgery. Question pertains if the high-level enzyme was driven by the Gallbladder or something else. Therefore, we cannot rule out in the near future a second trial with Epidiolex.

amonserrate | @amonserrate | 3 days ago

On a positive note, Mayo Clinic had a clinical opening last week and a very kind doctor saw her. It was a long drive but worth it. We were very impress with the facilities, the care and compassion demonstrated by all the staff, from the Valet Parking team, the security staff at the entrance, the reception team, the nurses, doctors and even the phlebotomist that took care of Amanda. We are very grateful as they made us felt like home.
We spent quite some time with the doctor, who explained to us in details and very kind to ensure we understood everything. Very revealing the fact that Mayo Clinic's approach is to look into the root cause of these new seizure episodes, rather than attempting to patch the problem, like what our local hospital it's been doing, reacting and not been pro-active. And it was very striking to us the fact that the doctor attending Amanda was very humble and down to earth, yet very assertive and experience on the matter.
During the appointment it was discussed that Amanda was put on medications that were not necessarily the best ones for LGS. We are looking forward to returning next week for a 24-hour EEG to establish a baseline and start treatment. Also, we are looking into moving from Spring Hill to Jacksonville this year and need to find a house within 30 minutes max from Mayo Clinic. If anyone knows a good realtor, please let me know.