Seizures

CDC funded page

Not a CDC funded Page

My daughter (6)was at school on Sept 19th and started getting confused and said she had the scardies. She not anyone in the family has history of seizures she went into 2 focal seizure that lasted over 20 minutes the ambulance came. We live in a small town so everything takes a bit longer. In the ambulance she came out for a minute said her age went back into a focal. Then she started going into grand Mal seizures in the er that were lasting over 20 min. She had numerous seizures. The doctors were pumping her full of medicine but She never came completely coherent. They did an CT scan to see if there was a brain bleed which there wasn't so they decided to fly her to the children hospital, where they're more advanced. They sedated her for the plane ride. We got there and it was a wait for them to do a MRI because they were so backed up and she was finally stable and quit having seizures after the sedation. They did a 20 min Eeg while sedated which showed lagging on the right side of the Brain then they finally did an MRI 14hrs later and finally took her out of sedation, the MRI was Normal and the two days we were in the hospital she had no incidents. She complained of a few headaches but that's it. The neurologist decided to send her home with no meds. She wasn't having any problems except headache and then she said she had the scardies again I called the nerologist. She decided to put her on keppra while on keppra she got extremely angry and had attitude problem and she continues to have numerous headaches thru the day. Her teacher and I keep a detailed diary of her day but the Dr was too busy to look at it. But she decided since she was having headache and behavior problems we will switch her medicine czonisamide witch she's been on for 2 months now with still continue headaches. That are like quick lightning bolts she gets 6 or more a day. Plus she gets stomach aches that happen in a flash. I've emailed her Dr all of this and she calls them spells and sees no problem in it. I bought her an embrace watch which showed she had 33 seizures in a week period I also told her Dr this she said it must be in accurate. I demanded they did an EEG which u could tell would be calm then go crazy but she said since I forgotten to hit the mark button it was Normal. My daughter goes through extremely mood changes after a seizure.

Comments

Sounds like the two of you

Submitted by Patriotrehab on Wed, 2019-11-20 - 23:09

Sounds like the two of you have been through a lot and it doesn’t help when you don’t feel like the doctor understands what it is that you and your daughter are experiencing. I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. It might help to see a pediatric epilepsy specialist at an epilepsy center and to get an extended video EEG monitoring so that they can try to capture several of her events. They will probably have to take her off her medications for the testing and may even revise the treatment plan such as changing the medication and or dosage based on the results, but it sounds like a second opinion may be needed. Someone from the epilepsy foundation will probably be responding to you with some more information over the next few days.

Hi, Thank you for posting.

Submitted by Anonymous on Thu, 2019-11-21 - 09:21

Hi, Thank you for posting. Like Gianna mentioned in her comment, we understand this must be very upsetting and frustrating for you all to experience, especially if you feel like her doctor is not listening to your concerns. Treatment and how her body will react to certain medications for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. To learn more about medications she takes, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsIt's important that you all are continuing to following- up with her healthcare team, (that you’re comfortable with) to determine what individual treatment plan is best for her and if she continues to experience any changes side effects,symptoms, seizure types/ frequency and behaviors. It can be challenging to find a healthcare team that you're comfortable with. If you feel you cannot talk openly with her healthcare team, or that you aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions, or assistance finding an epileptologist (epilepsy specialist) near you, please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistOr contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helplineWe are glad to hear that you are her teachers are keeping a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for identifying & tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other personal experiences, that may affect seizures and wellness, which can be shared with her healthcare team.

Hi, Thank you for posting. Like Gianna mentioned in her comment, we understand this must be very upsetting and frustrating for you all to experience, especially if you feel like her doctor is not listening to your concerns. Treatment and how her body will react to certain medications for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. To learn more about medications she takes, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsIt's important that you all are continuing to following- up with her healthcare team, (that you’re comfortable with) to determine what individual treatment plan is best for her and if she continues to experience any changes side effects,symptoms, seizure types/ frequency and behaviors. It can be challenging to find a healthcare team that you're comfortable with. If you feel you cannot talk openly with her healthcare team, or that you aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions, or assistance finding an epileptologist (epilepsy specialist) near you, please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistOr contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helplineWe are glad to hear that you are her teachers are keeping a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for identifying & tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other personal experiences, that may affect seizures and wellness, which can be shared with her healthcare team.  

Hi, Thank you for posting. Like Gianna mentioned in her comment, we understand this must be very upsetting and frustrating for you all to experience, especially if you feel like her doctor is not listening to your concerns. Treatment and how her body will react to certain medications for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. To learn more about medications she takes, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsIt's important that you all are continuing to following- up with her healthcare team, (that you’re comfortable with) to determine what individual treatment plan is best for her and if she continues to experience any changes side effects,symptoms, seizure types/ frequency and behaviors. It can be challenging to find a healthcare team that you're comfortable with. If you feel you cannot talk openly with her healthcare team, or that you aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions, or assistance finding an epileptologist (epilepsy specialist) near you, please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistOr contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helplineWe are glad to hear that you are her teachers are keeping a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for identifying & tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other personal experiences, that may affect seizures and wellness, which can be shared with her healthcare team.