Daughter having seizures, doctors don't believe us!

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My 15 year old daughter has been having seizures since this summer, July 2017. She has them at night. She woke up to the first one and was terrified. It traumatized her and she started having them during the daytime. We took her to Stanford ER and they admitted her. They did the EEG for a couple hours in the morning while she was awake, but they didn't listen to us about the nightime events, so they sent her home and said 'Psychogenic'. The daytime seizures stopped, but the nighttime continue. I pushed and pushed for more monitoring at night, and we got it. We had a planned hospitalization at Stanford. Insurance said she could have 3 nights max. When we arrived, they put her in a shared room on the organ transplant floor with a poor baby girl on dialysis. That baby was so sick and suffering; vomiting, crying out in pain, all night. My daughter didn't sleep well and, guess what, the EEG didn't pick anything up. The neurologist sent her home and said it isn't Epilepsy. My poor child has suffered with this since the summer and none of the doctors has offered her medication to help, nor any type of treatment. I do not believe them; I know she has Epilepsy. I have watched many videos, read the medical journals, scoured the forums, it fits the description of temporal or frontal lobe epilepsy with nocturnal seizures. Once she has the seizures, she feels like a truck hit her the next day. She gets clumsy and has a hard time putting thoughts to words. Now we are on referral at UCSF, and we have to wait until February for more video EEG. I don't know what to do anymore. I can't believe all of these doctors have ZERO sense of urgency. They just talk about the botched EEG report and don't care about all of the symptoms I share with them. I even have videos, 6 of them. I can't believe that doctors would leave a child to suffer for such a long time and not offer any help. If it is common knowledge that epileptics do not always have an abnormal EEG, why is no one doing anything to help my child? I don't know who to turn to anymore. I have tried everything I can think of. She has ear ringing, ear zapping, shaking like an earthquake goes through her body, head jerking, convulsing, and none of the doctors heard that and thought "this kid has epilepsy". How can that be? It's so clear to me; all signs point to epilepsy. She also has obstructive sleep apnea, but she can differentiate between sleep apnea events and the seizures. The sleep apnea events don't leave her so affected the next day, just tired. But the seizures... she needs several days to recover from them. Any helpful advice is welcome. My whole family is suffering because we are watching her suffer and are helpless to do anything about it. I am really disgusted with the medical system in this country that they would do this to a child. My niece in Spain has epilepsy. She told her mother, they went to the pediatrician, they got a sleep study, and the epilepsy was found. This all in the span of 2 weeks. Why can't our doctors in the US be that efficient?

Comments

I too have been through some

Submitted by birdman on Tue, 2018-01-30 - 14:26

I too have been through some experiences in the past year where doctors don't seem to listen or believe me. But I have not been through the experience you describe. I guess I am "fortunate" that I have had a couple episodes of status epilepticus as well as other seizures in front of medical staff that prove (along with my EEG) that I do have epileptic seizures.I cannot say just what kind of seizures your daughter is having. I would first encourage you to follow the advice from just_joe to explore information on Psychogenic Non-Epileptic Seizures (PNES). Also, in my frustration to communicate with doctors over the years I have read several books on how to understand and relate better with my doctor. The one I just read, How Doctors Think, by Jerome Groopman would be one that I think you would get useful advice from. Dr. Groopman writes about doctors mistakes in diagnosis and treatments. The book is written for doctors to help them understand ways to avoid these mistakes. He also wrote the book for patients to help them understand their doctors and to know ways they can help doctors avoid thinking errors. It's good to have an understanding of what influences doctors' thinking and Dr. Groopman provides very useful information on how to relate with doctorsMaybe your daughter has PNES as well as epileptic seizures. Dr. Groopman writes that a common error in medicine is that doctors become focused on one diagnosis and as a result ignore the possibility that there may be other conditions besides that contribute to a patient's suffering. I do not know how common it is for a person to have both, but after researching PNES if you still think she suffers from epileptic seizures you might ask your neurologist if is is possible to have both.

I have news for you, hav8ng

Submitted by mereloaded on Fri, 2018-02-02 - 09:16

I have news for you, hav8ng seizures is not an emergency. Before you throw rocks at me, hear me out: there is no sense of urgency because in plain terms of life and limb, in c9moarison it isn’t. I know, I know, I share your frustration when my son got first diagnosed I was frantic at the emergency room crying and screaming while the nurses shrugs their shoulders and told me to wait behind the kids with runny noses. I get it, above been there.It took me years of living in the epilepsy world, waiting in neurologist waiting rooms and talking to great doctors and going through it to understand that I’m thankful that my child is OK and it looks works than it really is. And it is that fear that makes epilepsy such a feared condition... because people freak out leading to stigma when it shouldn’t be. I remembered after several EEGs (normal) my son s neurologist diagnosed him with epilepsy (buckle up, it took a year). I remember me freaking up at the neuro office, I had several webmd print outs, research papers about obscure conditions that I waved in authoritarian mode, a list of questions with medical book references ... and the neuro looked at me very non challant , shrugged her shoulders and told me: he will be okay, he is going to live as normal life as any other and it would not be a doctor the one that limits him. He can and should live his life in whatever fashion he wishes. He is no different than any other 15 year old. When she told me that, I had an immediate relief. I will never forget that she told me that we should NOT stop living because of an epilepsy diagnosis. Yes, the journey to diagnosis is muddy and long. It stinks. It is gutting. As a mother Zi could not even see those electrode pads without breaking down in tears, then I realized that this is not about me and my son needs my strength and support, not me freaking out, watching his every move like a hawk... that is not living. It will take a while, but you will get there... and one day will totally get that having a seizure may not need an ambulance ride because they will just let the patient sleep and then discharged to “follow up with your doctor” is most cases. ER doctors can’t help you unless someone is in danger of dying or losing a limb. The only epilepsy emergencies are status epileoticus (a seizure that doesn’t stop) or injury from the fall. Yes, at one time or another you will learn yourself to treat the symptoms at home believ3 it or not, or get annoyed when people call an ambulance when it was totally NOt needed. You are not there yet, but you will some day.Get in line to a pediatric neurologist. Listen and ask questions. No one wants to give the diagnosis of a chronic incurable condition to a child unless they are sure, and sadly there is more gray area in epilepsy than black and white. Rejoice for the gray area and not the black and white because it is ugly out there... you will understand that once you see the other patients at the neuro office.Good luck

I have news for you, hav8ng seizures is not an emergency. Before you throw rocks at me, hear me out: there is no sense of urgency because in plain terms of life and limb, in c9moarison it isn’t. I know, I know, I share your frustration when my son got first diagnosed I was frantic at the emergency room crying and screaming while the nurses shrugs their shoulders and told me to wait behind the kids with runny noses. I get it, above been there.It took me years of living in the epilepsy world, waiting in neurologist waiting rooms and talking to great doctors and going through it to understand that I’m thankful that my child is OK and it looks works than it really is. And it is that fear that makes epilepsy such a feared condition... because people freak out leading to stigma when it shouldn’t be. I remembered after several EEGs (normal) my son s neurologist diagnosed him with epilepsy (buckle up, it took a year). I remember me freaking up at the neuro office, I had several webmd print outs, research papers about obscure conditions that I waved in authoritarian mode, a list of questions with medical book references ... and the neuro looked at me very non challant , shrugged her shoulders and told me: he will be okay, he is going to live as normal life as any other and it would not be a doctor the one that limits him. He can and should live his life in whatever fashion he wishes. He is no different than any other 15 year old. When she told me that, I had an immediate relief. I will never forget  that she told me that we should NOT stop living because of an epilepsy diagnosis. Yes, the journey to diagnosis is muddy and long. It stinks. It is gutting. As a mother Zi could not even see those electrode pads without breaking down in tears, then I realized that this is not about me and my son needs my strength and support, not me freaking out,  watching his every move like a hawk... that is not living. It will take a while, but you will get there... and one day will totally get that having a seizure may not need an ambulance ride because they will just let the patient sleep and then discharged to “follow up with your doctor” is most cases. ER doctors can’t help you unless someone is in danger of dying or losing a limb. The only epilepsy emergencies are status epileoticus (a seizure that doesn’t stop) or injury from the fall. Yes, at one time or another you will learn yourself to treat the symptoms at home believ3 it or not, or get annoyed when people call an ambulance when it was totally NOt needed. You are not there yet, but you will some day.Get in line to a pediatric neurologist. Listen and ask questions. No one wants to give the diagnosis of a chronic incurable condition to a child unless they are sure, and sadly there is more gray area in epilepsy than black and white. Rejoice for the gray area and not the black and white because it is ugly out there... you will understand that once you see the other patients at the neuro office.Good luck

I have news for you, hav8ng seizures is not an emergency. Before you throw rocks at me, hear me out: there is no sense of urgency because in plain terms of life and limb, in c9moarison it isn’t. I know, I know, I share your frustration when my son got first diagnosed I was frantic at the emergency room crying and screaming while the nurses shrugs their shoulders and told me to wait behind the kids with runny noses. I get it, above been there.It took me years of living in the epilepsy world, waiting in neurologist waiting rooms and talking to great doctors and going through it to understand that I’m thankful that my child is OK and it looks works than it really is. And it is that fear that makes epilepsy such a feared condition... because people freak out leading to stigma when it shouldn’t be. I remembered after several EEGs (normal) my son s neurologist diagnosed him with epilepsy (buckle up, it took a year). I remember me freaking up at the neuro office, I had several webmd print outs, research papers about obscure conditions that I waved in authoritarian mode, a list of questions with medical book references ... and the neuro looked at me very non challant , shrugged her shoulders and told me: he will be okay, he is going to live as normal life as any other and it would not be a doctor the one that limits him. He can and should live his life in whatever fashion he wishes. He is no different than any other 15 year old. When she told me that, I had an immediate relief. I will never forget that she told me that we should NOT stop living because of an epilepsy diagnosis. Yes, the journey to diagnosis is muddy and long. It stinks. It is gutting. As a mother Zi could not even see those electrode pads without breaking down in tears, then I realized that this is not about me and my son needs my strength and support, not me freaking out, watching his every move like a hawk... that is not living. It will take a while, but you will get there... and one day will totally get that having a seizure may not need an ambulance ride because they will just let the patient sleep and then discharged to “follow up with your doctor” is most cases. ER doctors can’t help you unless someone is in danger of dying or losing a limb. The only epilepsy emergencies are status epileoticus (a seizure that doesn’t stop) or injury from the fall. Yes, at one time or another you will learn yourself to treat the symptoms at home believ3 it or not, or get annoyed when people call an ambulance when it was totally NOt needed. You are not there yet, but you will some day.Get in line to a pediatric neurologist. Listen and ask questions. No one wants to give the diagnosis of a chronic incurable condition to a child unless they are sure, and sadly there is more gray area in epilepsy than black and white. Rejoice for the gray area and not the black and white because it is ugly out there... you will understand that once you see the other patients at the neuro office.Good luck

Thanks Michael. I have read

Submitted by arevalo_voorhees@sbcglobal.net on Sat, 2018-02-10 - 23:51

Thanks Michael. I have read that people can definitely have both. I have brought this up to the new neurology team who will be monitoring her in a week. I appreciate the reply! Take care :)