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Daughter having seizures, doctors don't believe us!

Mon, 01/29/2018 - 03:04
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

Thank you so much mereloaded.

Submitted by arevalo_voorhees@sbcglobal.net on Sun, 2018-02-11 - 00:01
Thank you so much mereloaded. I appreciate the reply and you sharing your experience with me. I feel like the new team that is going to investigate this is asking the right questions and listening. I am hopeful that they will be able to catch a big 'event' when they monitor her next week. I noticed that her 'events' follow the menstrual cycle, so they are going to monitor her on the 20th. January 22nd she had 10 nocturnal 'events' and couldn't talk in the morning, so that is concerning. I agree with your comments about seizures not being a huge concern for the ER people. My daughter had a 22 minute seizure in July, so that led us to the ER, but it was psychogenic (due to trauma from the actual nocturnal seizure earlier in July). Psych folks say that's over now, and she hasn't had any since early August (diurnal). I guess they were huge panic attacks (according to one prominent psychiatrist she saw). I get that the doctors don't want to diagnose epilepsy unless they have to, but it's also not ok to leave kids suffering for so long. It would scare the you-know-what out of me to have seizures at night, to know they are coming, and to not be able to do anything to stop it. So yeah, I will listen, but I will also continue to push these complacent folks into action because it is not ok to leave a child suffering and tell them 'it's all in your head', when clearly it isn't. Part of the oath of being a doctor is to push beyond the 'this is expected' situations and keep investigating; leave no stone left unturned. That's what I want for my daughter, and what I feel she deserves. I think we all feel that way about our kids that we love so much. Take care and thank you again for the insights :)

Thanks Michael. I have read

Submitted by arevalo_voorhees@sbcglobal.net on Sun, 2018-02-11 - 00:01
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 :)

Thank you so much mereloaded.

Submitted by arevalo_voorhees@sbcglobal.net on Sun, 2018-02-11 - 00:08
Thank you so much mereloaded. I appreciate the reply and you sharing your experience with me. I feel like the new team that is going to investigate this is asking the right questions and listening. I am hopeful that they will be able to catch a big 'event' when they monitor her next week. I noticed that her 'events' follow the menstrual cycle, so they are going to monitor her on the 20th. January 22nd she had 10 nocturnal 'events' and couldn't talk in the morning, so that is concerning. I agree with your comments about seizures not being a huge concern for the ER people. My daughter had a 22 minute seizure in July, so that led us to the ER, but it was psychogenic (due to trauma from the actual nocturnal seizure earlier in July). Psych folks say that's over now, and she hasn't had any since early August (diurnal). I guess they were huge panic attacks (according to one prominent psychiatrist she saw). I get that the doctors don't want to diagnose epilepsy unless they have to, but it's also not ok to leave kids suffering for so long. It would scare the you-know-what out of me to have seizures at night, to know they are coming, and to not be able to do anything to stop it. So yeah, I will listen, but I will also continue to push these complacent folks into action because it is not ok to leave a child suffering and tell them 'it's all in your head', when clearly it isn't. Part of the oath of being a doctor is to push beyond the 'this is expected' situations and keep investigating; leave no stone left unturned. That's what I want for my daughter, and what I feel she deserves. I think we all feel that way about our kids that we love so much. Take care and thank you again for the insights :)

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