Medication management issues for my daughter - suggestions?

Posted by loonieyvonne @loonieyvonne, Dec 29, 2024

My 10-year-old has General epilepsy along with Jeavons Syndrome with eyelid myoclonia.

For the first few years, there were only myoclonic eye flutters and absent seizures. Over the last 2 years, clonic tonic seizures. In Sept they were every morning like clockwork, for over a month. Finally, her neurologist had us drive to Westchester children's hospital. They were not great unfortunately but did lower 2 meds and added a new one. The new med seems to have really kept the clonic tonic seizures at bay, with only 2 so far due to lack of sleep.

My question is, they have her on so many meds and due to the Westchester doctor being booked until February, her meds are just stationary. I know they are supposed to be upping the new one and reducing the old ones. But her old neurologist refuses to help! Does this make sense to anyone??

Keppra - was 3x a day at 7ml (125mg/ml) - reduced in September to 4ml x2 a day
Clobazam - was 2x a day at 7ml (2.5mg/ml)
Eprontia - 2ml (25mg per ml) x2 day
Clonadine - 0.2mg at bed for sleep

Eprontia seems to have worked above anything, but I read it was supposed to be increased weekly! Her eyes myoclonias are coming back and she has had 2 more seizures recently. I feel like they are neglecting her and I'm so lost. I have no family or friends to help, and I'm constantly crying as I am ready to fly to Mexico for help at this point! The good dr at Westchester is great, but won't change her meds until she's seen, even though he is the one that put her on it and admitted her to the children's hospital in September.

Any one heard of this large amount of meds without decreasing the keppra, clobazam or increasing the Eprontia???

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I appreciate all your good information, experience and concern regarding this issue. Unfortunately, there are none in my area, and I would have to travel far away yo find one. I was seeing a epileptologist, over 3 years ago, but he only saw me one time and then pawned me off to a PA. The PA was not knowledgeable or had any fellowship in the field and nearly killed me by prescribing things that only made my condition worse, I nearly died from negligence and malpractice. It was awful. I went a year waiting for someone to take the case that was more qualified, however, I dont feel like he understands, or hears my concerns. There is a shortage of neurologists in the area where I live and, it can take over a year and a half to get in somewhere. It is a very bad situation, and I am disabled because of it, so insurance will not allow me to ho out of state. What do you do when you can’t find somebody that is an absolute professional and knowledgeable in the field, and there’s nobody here to be able to fill that void. There are so many people waiting to see somebody and they cannot even get in. I will not stop taking the medication on my own, but I want a better life, and I feel like this medication has made my medical situation even worse with new symptoms that I never had before, and then a doctor saying that absolutely can’t happen, which we both know can. I have read in multiple areas that AEDs can cause issues with the heart. I even spoke with Albert Jung of Langone, getting his input and he verified what my concerns were. He said get another opinion. It makes it very difficult because there is no one else here. Where do you go when you don’t have the doctors to go to?

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@closetmonster93

I appreciate all your good information, experience and concern regarding this issue. Unfortunately, there are none in my area, and I would have to travel far away yo find one. I was seeing a epileptologist, over 3 years ago, but he only saw me one time and then pawned me off to a PA. The PA was not knowledgeable or had any fellowship in the field and nearly killed me by prescribing things that only made my condition worse, I nearly died from negligence and malpractice. It was awful. I went a year waiting for someone to take the case that was more qualified, however, I dont feel like he understands, or hears my concerns. There is a shortage of neurologists in the area where I live and, it can take over a year and a half to get in somewhere. It is a very bad situation, and I am disabled because of it, so insurance will not allow me to ho out of state. What do you do when you can’t find somebody that is an absolute professional and knowledgeable in the field, and there’s nobody here to be able to fill that void. There are so many people waiting to see somebody and they cannot even get in. I will not stop taking the medication on my own, but I want a better life, and I feel like this medication has made my medical situation even worse with new symptoms that I never had before, and then a doctor saying that absolutely can’t happen, which we both know can. I have read in multiple areas that AEDs can cause issues with the heart. I even spoke with Albert Jung of Langone, getting his input and he verified what my concerns were. He said get another opinion. It makes it very difficult because there is no one else here. Where do you go when you don’t have the doctors to go to?

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Good Morning @closetmonster93
I was in a similar situation in 2019 and 2020. At that time I was being treated first by a psychiatrist and later by neurologists who were not caring for all the side-effects I was having with AEDs they put me on.
Desperate, I then decided to have an online appointment with an epileptologist of an epilepsy center in the US (It was COVID time and I live in Brazil), getting a recommendation of an epileptologist here in São Paulo, changing it all. Perhaps this could also be a route to you?
Chris (@santosha)

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@santosha

Good Morning @closetmonster93
I was in a similar situation in 2019 and 2020. At that time I was being treated first by a psychiatrist and later by neurologists who were not caring for all the side-effects I was having with AEDs they put me on.
Desperate, I then decided to have an online appointment with an epileptologist of an epilepsy center in the US (It was COVID time and I live in Brazil), getting a recommendation of an epileptologist here in São Paulo, changing it all. Perhaps this could also be a route to you?
Chris (@santosha)

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@santosha your situation sounds so much like mine. It’s almost Erie. I had been seizure free for 30 years. In 2016 I was severely attacked and suffered brain trauma. I didn’t start having seizures at that point in time I had severe migraines that were uncontrollable and many of the doctors over 12 of them could not fix the situation. I exhausted every possible medication and therapy known to me. In 2019, I was at work. I don’t remember driving to work, and I started to feel this very strange aura, and or like before you have a seizure. I had a tonic chronic seizure that lasted over 10 minutes, it nearly killed me. They almost didn’t get me to the hospital in time. The doctors were amazed I was still alive. The doctor I had at the time was completely a knowledgeable and ill prepared for such a thing. He was a neurologist, but that he was a mobility specialist so he was not adequately prepared for my situation or what was to unfold after. I had to fire him immediately because he refused to do anything, while I waited to see the epileptologist, who would then take my case. However, I had to wait over six months. In that time. I lost my job, I became increasingly worse, and the seizure activity was worse than it had ever been in my entire life. The epileptologist saw me one time, and then he pawned off on his PA. She did not have the fellowship. She did not have the degree. She did not have any experience whatsoever. It was probably the most difficult times of my life because I could not get the help I needed. She would prescribe drugs that I should never have been on because of other existing health conditions. She had no checks and balances as far as the medications that she was prescribing, and it was really a disaster, waiting to unfold in greater capacities, which it did. I was later told by a physician, that many of the meds she prescribed I should never have been on, and they only made the seizures worse. I fired the epileptologist, and waited to see another neurologist, there is only one epileptologist here where I live. In waiting for the new neurologist, I was threatening and verbally, abused, and sent away with no medication’s or any medical care. The hospital did nothing. I waited a year for a new neurologist, I barely had enough medication to hold me, and the pharmacy and a neurologist that had never seen me before worked with me until I could see a new neurologist take my case on. The neurologist I have today is no better than a lot of the other neurologist I’ve had. He does not listen, when I present questions and medical journals, substantiating my concerns, questions issues and experiences he mocks me. He is arrogant and doesn't listen to the concerns. I have no one else to go to in the place where I live. Nobody else in this area will take my case. He is the last neurologist that will take my case. I have pounded the pavement extensively trying to get help for my situation and have been turned away from almost every neurologist in this area, claiming my case is too complex and they do not have the capabilities or resources to be able to deal with it. I really like your idea of possibly doing what you have done, but I don’t know even where to begin. How did you manage to get a epileptologist to treat you online? I’m not sure that this is something that they would do for me here although I am not opposed to trying it. I’ve had to advocate a lot for myself because the doctors will not advocate for me, and if that means doing the research and looking elsewhere, I am will make it happen. How did you wind up finding somebody that would treat you online if you don’t mind me asking?

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@closetmonster93
Hi, Good Afternoon
I am really sorry to hear your story and all you went through. Finding a human and good doctor is quite a challenge in our days.
As I mentioned, I was unsatisfied with my epilepsy treatment, getting no good results after seeing over 10 doctors, neurologists and psychiatrists here in São Paulo, Brazil. At that time, I did not even know that epileptologists existed. So, I decided to contact an epilepsy center in the US, something we still do not have over here. My first contact was by phone, if I remember well. It was followed by e-mail. As a foreign patient, all was paid directly by me. The doctor with whom I had an appointment was an epileptologist and he knew an epileptologist here in São Paulo to whom he recommended me.
If you have any other questions, feel free to ask me.
Kind Regards,
Chris (@santosha)

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Hi @loonieyvonne - wanted to check in and see how things are going with your daughter?

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