Refusing medicine increase

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My 12 year old son was diagnosed with focal onset aware in December. They put him on Keppra and he didn't handle that well. He was switched to Trileptal and it has made a huge difference. At our last appointment, we mentioned how tired and lethargic he was to which the doctor snapped at us and said that Trileptal wouldn't cause that. I disagree. He also is depressed and unmotivated. His seizures are pretty well controlled. He has "blips" of them here and there. I don't want to increase his medicine and zombie him out. We have him seeing a psychologist for the depression and worked out a 504 with the school. Has anyone gone against the doctor and not increased their child's medication? I think the nurse was a little stunned when I told her we weren't ready to do that.

Comments

Sometimes depending on the

Submitted by Jazz101 on Fri, 2019-03-08 - 21:06

Sometimes depending on the relationship you have with your doctor the conversation can probably take on what I like to term "the overly personal road." I have never had that problem in neurology because I always keep mine updated with any changes I might be thinking of in any plan we may have spoken of. That said, I have had disagreements with doctors in other medical areas especially when I knew they weren't getting it. Sort of like the one who told me I had measles when I knew it wasn't. So you don't have to agree with, and/or take the road of a doctor if you can see they seem one-sided or that they might be getting it wrong.As a result, if increasing the Trileptal is something you guys spoke about and he was under the impression that it was being done when it wasn't, then I can understand him getting a bit uptight. After all, agree or disagree, the doctor should be told whether the increase, if intended, is something you feel we should pause, and cite the reason. Patients have a significant amount of say in what the plan by any medical specialist might be. After all, you or the person who oversees you, as is your son's case, gets a first-hand look at how the person is being affected. As a result, you do have the right to disagree on how high the meds should be depending on if you can directly link it to the meds or the level of the meds.That, and the seizures are relatively well controlled so we can ease at this level.I'll give you an example. When my neurologist had suggested Vimpat when I asked about editing the meds, neither of us knew I would react to it the way I did. In my case instead of controlling the seizures it increased the seizures. When I contacted him and made it known, we were both on the same page that we have to let go of the Vimpat and try something else. It was that easy because I kept him updated. So the relationship you have with the neurologist can sometimes determine what the interaction looks like, even if the suggestion is yours versus the neurologist. I think it's great that you are looking out for your son as long as you are doing your part of also making certain things known to the neurologist. With Epilepsy the neurologists know a ton about the brain etc. but the person who oversees the individual with the seizures can say even more about how he or she is affected. So as long as you are keeping them informed, then sure, you don't necessarily have to agree on everything the neurologist may suggest. My mom was in medicine so my relationship with doctors are based on specifics. Are they paying attention and are they practical? As a result we'll find ourselves on the same page if it all makes sense. But if something is a bit off in terms of what the doctor may be suggesting, then yes, we will disagree without it being personal. What's very important with Epilepsy and any other medical issue is that we are listening but at the same time not afraid to disagree if we have good reasons to support our decision. And with the latter, make sure you disclose it to the doctor, as you did. Medicine is an area where a significant amount of responsibility is also on doctors, at times for legal purposes. Hence it is important to feel free to make things known to them even if you may disagree. Because I have family members in the medical side, I balance being the patient and my relationship with doctors. That means I am not afraid to let them know where I disagree and why. If you are unable to maintain a good relationship with your current neurologist, then feel free to find an new one, one who specializes in Epilepsy. That way both sides know what page the other is one, which pretty much puts your son in good hands on both sides. Best Regards

Sometimes depending on the relationship you have with your doctor the conversation can probably take on what I like to term "the overly personal road." I have never had that problem in neurology because I always keep mine updated with any changes I might be thinking of in any plan we may have spoken of. That said, I have had disagreements with doctors in other medical areas especially when I knew they weren't getting it. Sort of like the one who told me I had measles when I knew it wasn't. So you don't have to agree with, and/or take the road of a doctor if you can see they seem one-sided or that they might be getting it wrong.As a result, if increasing the Trileptal is something you guys spoke about and he was under the impression that it was being done when it wasn't, then I can understand him getting a bit uptight. After all, agree or disagree, the doctor should be told whether the increase, if intended, is something you feel we should pause, and cite the reason. Patients have a significant amount of say in what the plan by any medical specialist might be. After all, you or the person who oversees you, as is your son's case, gets a first-hand look at how the person is being affected. As a result, you do have the right to disagree on how high the meds should be depending on if you can directly link it to the meds or the level of the meds.That, and the seizures are relatively well controlled so we can ease at this level.I'll give you an example. When my neurologist had suggested Vimpat when I asked about editing the meds, neither of us knew I would react to it the way I did. In my case instead of controlling the seizures it increased the seizures. When I contacted him and made it known, we were both on the same page that we have to let go of the Vimpat and try something else. It was that easy because I kept him updated. So the relationship you have with the neurologist can sometimes determine what the interaction looks like, even if the suggestion is yours versus the neurologist. I think it's great that you are looking out for your son as long as you are doing your part of also making certain things known to the neurologist. With Epilepsy the neurologists know a ton about the brain etc. but the person who oversees the individual with the seizures can say even more about how he or she is affected. So as long as you are keeping them informed, then sure, you don't necessarily have to agree on everything the neurologist may suggest. My mom was in medicine so my relationship with doctors are based on specifics. Are they paying attention and are they practical? As a result we'll find ourselves on the same page if it all makes sense. But if something is a bit off in terms of what the doctor may be suggesting, then yes, we will disagree without it being personal. What's very important with Epilepsy and any other medical issue is that we are listening but at the same time not afraid to disagree if we have good reasons to support our decision. And with the latter, make sure you disclose it to the doctor, as you did. Medicine is an area where a significant amount of responsibility is also on doctors, at times for legal purposes. Hence it is important to feel free to make things known to them even if you may disagree. Because I have family members in the medical side, I balance being the patient and my relationship with doctors. That means I am not afraid to let them know where I disagree and why. If you are unable to maintain a good relationship with your current neurologist, then feel free to find an new one, one who specializes in Epilepsy. That way both sides know what page the other is one, which pretty much puts your son in good hands on both sides. Best Regards

Sometimes depending on the relationship you have with your doctor the conversation can probably take on what I like to term "the overly personal road." I have never had that problem in neurology because I always keep mine updated with any changes I might be thinking of in any plan we may have spoken of. That said, I have had disagreements with doctors in other medical areas especially when I knew they weren't getting it. Sort of like the one who told me I had measles when I knew it wasn't. So you don't have to agree with, and/or take the road of a doctor if you can see they seem one-sided or that they might be getting it wrong.As a result, if increasing the Trileptal is something you guys spoke about and he was under the impression that it was being done when it wasn't, then I can understand him getting a bit uptight. After all, agree or disagree, the doctor should be told whether the increase, if intended, is something you feel we should pause, and cite the reason. Patients have a significant amount of say in what the plan by any medical specialist might be. After all, you or the person who oversees you, as is your son's case, gets a first-hand look at how the person is being affected. As a result, you do have the right to disagree on how high the meds should be depending on if you can directly link it to the meds or the level of the meds.That, and the seizures are relatively well controlled so we can ease at this level.I'll give you an example. When my neurologist had suggested Vimpat when I asked about editing the meds, neither of us knew I would react to it the way I did. In my case instead of controlling the seizures it increased the seizures. When I contacted him and made it known, we were both on the same page that we have to let go of the Vimpat and try something else. It was that easy because I kept him updated. So the relationship you have with the neurologist can sometimes determine what the interaction looks like, even if the suggestion is yours versus the neurologist. I think it's great that you are looking out for your son as long as you are doing your part of also making certain things known to the neurologist. With Epilepsy the neurologists know a ton about the brain etc. but the person who oversees the individual with the seizures can say even more about how he or she is affected. So as long as you are keeping them informed, then sure, you don't necessarily have to agree on everything the neurologist may suggest. My mom was in medicine so my relationship with doctors are based on specifics. Are they paying attention and are they practical? As a result we'll find ourselves on the same page if it all makes sense. But if something is a bit off in terms of what the doctor may be suggesting, then yes, we will disagree without it being personal. What's very important with Epilepsy and any other medical issue is that we are listening but at the same time not afraid to disagree if we have good reasons to support our decision. And with the latter, make sure you disclose it to the doctor, as you did. Medicine is an area where a significant amount of responsibility is also on doctors, at times for legal purposes. Hence it is important to feel free to make things known to them even if you may disagree. Because I have family members in the medical side, I balance being the patient and my relationship with doctors. That means I am not afraid to let them know where I disagree and why. If you are unable to maintain a good relationship with your current neurologist, then feel free to find an new one, one who specializes in Epilepsy. That way both sides know what page the other is one, which pretty much puts your son in good hands on both sides. Best Regards

By the way, in terms of

Submitted by Jazz101 on Sat, 2019-03-09 - 20:06

By the way, in terms of finding another neurologist, if need be, a great source is US News and World Report. They do a great job of rating hospitals in neurology and neurosurgery here in the United States.I'll give you both links, as in pediatrics and adults given your son is 12. I'm not sure if pediatrics still applies to him but I'll give you both links.For best hospital in pediatric neurology and neurosurgery the link is:https://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgeryFor best hospital in neurology and neurosurgery the link is :https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryWhen you contact the hospital, find out if they have what's called a "Comprehensive Epilepsy Center." After all you want a neurologist who specializes in Epilepsy. And even if they do when you contact them make sure the neurologist you choose specializes in Epilepsy. After all, neurology sometimes involves Strokes and Parkinson's. In your case you want a neurologist who specializes in Epilepsy.Best Regards

I’m sorry your Dr reacted

Submitted by Sam9285 on Sun, 2019-05-05 - 18:43

I’m sorry your Dr reacted that way. My son Sees Dr. kaddurah and he’s a great listener and not a fan of over medicating. My son is on Trileptal also and is experiencing tics. I just hate this.