Who knows about your childs seizures?

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My son had his first seizure in November 2014 and we were eventually sent home told that it was most likely a fluke. When his seizures continued he was eventualy started on Keppra but they still do not have any idea what is causing them. All of his bloodwork, multiple EEG's & multiple MRI's have been "completley normal". They do not believe he has epilepsy as they say something would appear in the tests. We have been very blessed in that so far the Keppra has controlled the seizures, His last seizure was December 25th.

I am very specific about whom is told about his seizures and who isn't. I am not sure if that is the norm or not. It's not a secret by any means, My family all know as do my close friends but past that we are very careful about who knows. We are extremely vigilant about not letting it get on facebook or anything like that. I feel like I have multiple reasons for keeping it private starting with the obvious it's not anyones buisness but there are other reasons such as all of the unwanted advice from every Tom Dick and Harry that have never experienced them but read something about it once, The assumption that he has epilepsy as many many people think that's the only cause of seizures and another big reason for me personally is not being okay with anyone looking at him like he's broken or like something is wrong with him. I can't stand the thought of anyone feeling sorry for him and definitley not feeling sorry for or pitying his parents. I know that these feelings are due to compassion and concern but I know that they would anger me as I am so incredibly blessed and so lucky to have him that I can't imagine needing pity.

I guess I am just wondering if this is a common way to feel and if anyone has had similar feelings and if they have changed over time or if maybe you felt the opposite from day one. Anyway, Just curious. All responses will be appreciated :-)

Comments

I don't know who you've been

Submitted by Anonymous on Wed, 2015-04-22 - 02:16

I don't know who you've been seeing but EEGs/MRIs can be clear even if one has epilepsy. A lot of people never find a cause even if they have an abnormal EEG. If they've eliminated non E causes and keppra is working, you should talk to a better neurologist, epilepsy is very likely at that point. When my daughter's first EEG was clear, her neurosurgeon very clearly told me that EEGs have limits, he actually specializes in epilepsy surgery although that's not why we see him. Took 6 months to get a diagnosis after we knew she had had a few isolated seizures, turns out she was having loads of simple partials no one recognized as seizures until a neurologist really looked her.We have a health plan at the school which outlines when it is an emergency to call 911 and when it isn't (because few things are emergencies and going to the wrong hospital could cause real harm). A list of medications is also on file at school so if she does go to some hospital, they don't give her something which could cause a bad reaction. We don't put stuff out on social media but it isn't a big secret.

I guess I am just wondering

Submitted by just_joe on Fri, 2015-04-24 - 15:02

I guess I am just wondering if this is a common way to feel and if anyone has had similar feelingsAs for people knowing well I do hope there are people in the schools that know and they have the doctors names and yours. It can help if they do in the office because what would happen if they didn't and he had a seizure?Joe

All it takes for someone to

Submitted by Anonymous on Sun, 2015-04-26 - 11:18

All it takes for someone to be diagnosed with epilepsy is 2 seizures.As for tests all being normal. I had 20-25 different EEG's all came back normal. Blood tests were normal. The test back int he 960's which would be todays MRI also came back normal. The last test done in a weeks testing was another EEG. Well I fell asleep in that EEG and guess what it came back with abnormalities. By knowing where in the brain they came from then then went to that area in the MRI of the 1960's and guess what even tho it was normal when checking it the first time a closer look they found scared brain tissue. So a test can be done and it can come back normal. But it doesn't mean all other tests will. Also know that the MRI and other tests can come back normal and be just fine. But that doesn't mean there isn't something causing an electrical impulse from going off wrong. The EEG is a test showing the electrical activity comming from the brain. A persons EEG's can come back normal and it mat be right. But the EEG can read only to a certain depth in the brain. which means if the abnormality is deeper than that it will not be picked up.You may be surprised to know that there are a lot of people that have been testsed and no cause could be found and their tests came back normal. That does not mean they don't have epilepsy or don't have seizures.As zack said without really knowing your son's ageit is a bit difficult to go farther with to tell or not tell. Epilepsy will come out at some point in his life. Unless you let some people know and he has a seizure in public he may be taken to a hospital miles away. If some people know then they can help take care of him in many ways. The school nurse knew I had epilepsy and if I had one on campus she knew what needed to be done. She called Mom and let her know. She had me stay in the nurses office until I was back to normal and could talk to her and be rational. I then went to my next class. The teachers in the classes I missed knew because the nurse had them give here the homework and other information so nothing was lost or missed. You see nost of my seizures were while I was a teen and in school. I also know that kids will be kids and yes many can get wierd and yes bully some. But I also had friends that learned from me what to do or not do. In may seizures even tho they were convulsive I saw, heard and understood what was going on arround be. I heard some saying they didn't want to be arround me anymore. I also heard the person yelling for the nurse. I knew the person taking their jacket off and putting it under my head. I also found out that the best fighter in school was a friend that understood and he did talk to people who didn't want to be my friends anymore. Yes it can be looked at in many different ways. It is the stigma that epilepsy is associated with that doesn't help. Now tell me if your son had a heart ailment would you be telling people about it? Or if he had diabeties? It is a blind ailment. In other words it can't be seen like glasses or a criutch or a hearing aid. He is just like everybody else and the only difference is he has a seizure now and then. I hope this helps Joe

All it takes for someone to be diagnosed with epilepsy is 2 seizures.As for tests all being normal. I had 20-25 different EEG's all came back normal. Blood tests were normal. The test back int he 960's which would be todays MRI also came back normal. The last test done in a weeks testing was another EEG. Well I fell asleep in that EEG and guess what it came back with abnormalities. By knowing where in the brain they came from then  then went to that area in the MRI of the 1960's and guess what even tho it was normal when checking it the first time a closer look they found scared brain tissue. So a test can be done and it can come back normal. But it doesn't mean all other tests will. Also know that the MRI and other tests can come back normal and be just fine. But that doesn't mean there isn't something causing an electrical impulse from going off wrong. The EEG is a test showing the electrical activity comming from the brain. A persons EEG's can come back normal and it mat be right. But the EEG can read only to a certain depth in the brain. which means if the abnormality is deeper than that it will not be picked up.You may be surprised to know that there are a lot of people that have been testsed and no cause could be found and their tests came back normal. That does not mean they don't have epilepsy or don't have seizures.As zack said without really knowing your son's ageit is a bit difficult to go farther with to tell or not tell. Epilepsy will come out at some point in his life. Unless you let some people know and he has a seizure in public he may be taken to a hospital miles away. If some people know then they can help take care of him in many ways. The school nurse knew I had epilepsy and if I had one on campus she knew what needed to be done. She called Mom and let her know. She had me stay in the nurses office until I was back to normal and could talk to her and be rational. I then went to my next class. The teachers in the classes I missed knew because the nurse had them give here the homework and other information so nothing was lost or missed. You see nost of my seizures were while I was a teen and in school. I also know that kids will be kids and yes many can get wierd and yes bully some. But I also had friends that learned from me what to do or not do. In may seizures even tho they were convulsive I saw, heard and understood what was going on arround be. I heard some saying they didn't want to be arround me anymore. I also heard the person yelling for the nurse. I knew the person taking their jacket off and putting it under my head. I also found out that the best fighter in school was a friend that understood and he did talk to people who didn't want to be my friends anymore. Yes it can be looked at in many different ways. It is the stigma that epilepsy is associated with that doesn't help. Now tell me if your son had a heart ailment would you be telling people about it? Or if he had diabeties? It is a blind ailment. In other words it can't be seen like glasses or a criutch or a hearing aid. He is just like everybody else and the only difference is he has a seizure now and then.  I hope this helps Joe

All it takes for someone to be diagnosed with epilepsy is 2 seizures.As for tests all being normal. I had 20-25 different EEG's all came back normal. Blood tests were normal. The test back int he 960's which would be todays MRI also came back normal. The last test done in a weeks testing was another EEG. Well I fell asleep in that EEG and guess what it came back with abnormalities. By knowing where in the brain they came from then then went to that area in the MRI of the 1960's and guess what even tho it was normal when checking it the first time a closer look they found scared brain tissue. So a test can be done and it can come back normal. But it doesn't mean all other tests will. Also know that the MRI and other tests can come back normal and be just fine. But that doesn't mean there isn't something causing an electrical impulse from going off wrong. The EEG is a test showing the electrical activity comming from the brain. A persons EEG's can come back normal and it mat be right. But the EEG can read only to a certain depth in the brain. which means if the abnormality is deeper than that it will not be picked up.You may be surprised to know that there are a lot of people that have been testsed and no cause could be found and their tests came back normal. That does not mean they don't have epilepsy or don't have seizures.As zack said without really knowing your son's ageit is a bit difficult to go farther with to tell or not tell. Epilepsy will come out at some point in his life. Unless you let some people know and he has a seizure in public he may be taken to a hospital miles away. If some people know then they can help take care of him in many ways. The school nurse knew I had epilepsy and if I had one on campus she knew what needed to be done. She called Mom and let her know. She had me stay in the nurses office until I was back to normal and could talk to her and be rational. I then went to my next class. The teachers in the classes I missed knew because the nurse had them give here the homework and other information so nothing was lost or missed. You see nost of my seizures were while I was a teen and in school. I also know that kids will be kids and yes many can get wierd and yes bully some. But I also had friends that learned from me what to do or not do. In may seizures even tho they were convulsive I saw, heard and understood what was going on arround be. I heard some saying they didn't want to be arround me anymore. I also heard the person yelling for the nurse. I knew the person taking their jacket off and putting it under my head. I also found out that the best fighter in school was a friend that understood and he did talk to people who didn't want to be my friends anymore. Yes it can be looked at in many different ways. It is the stigma that epilepsy is associated with that doesn't help. Now tell me if your son had a heart ailment would you be telling people about it? Or if he had diabeties? It is a blind ailment. In other words it can't be seen like glasses or a criutch or a hearing aid. He is just like everybody else and the only difference is he has a seizure now and then. I hope this helps Joe