My 17 y/o daughter had her first seizure on Jan 25. We were at a concert. When the 3rd band came on, they had bright, white flashing lights as part of their show and we had 4th row seats. About 45 seconds into their set, she was on the floor convulsing with a tonic-clonic seizure. She was taken by ambulance to the hospital and was admitted. She had a few more seizures over the two days she was there but her EEG was normal.
She was transferred to Riley's Children's hospital at IU Medical Center for a 24 hr video EEG and had a grand mal seizure in the ambulance on the way to Indianapolis.
During the 24 hr EEG, which was really only about 16 hours, they were able to induce a seizure with a strobe. However, the Dr said the EEG was completely normal. We were told they must be stress related, was sent home with no meds, was told to practice deep breathing, and to see a psychiatrist. She has been in counseling for several years and her counselor says there is no way they could be stress related. He says she is his most stable patient. He's been doing then for more than a couple decades, so I would think he knows what he's talking about.
Since then the seizures haven't stopped. She was averaging one seizure about every 3 days until last Friday. Since last Friday it has been at least one each day. Wednesday she had 4 seizures back to back in the hallway of the high school and was taken to the ER by ambulance. Since she was scheduled to see a local neurologist on the 28th for a follow-up, the ER Dr gave her a prescription for Ativan to place under her tongue if she felt she may have a seizure. Not the best solution because she usually doesn't know when she may have one and she could choke on the pill.
Later that afternoon, the local neurologist's office called to cancel my daughter's appointment because Riley's diagnosed them as stress related pseudo seizures. She said it would be like someone coming to them for a broken foot.
Sunday she had 9 seizures in 5 hours. After the 4th one, I took her to the ER. When the ER Dr saw the seizures, he said they were definitely 'real seizures' and gave her 1000 mg of Dilantin and transferred her to a hospital with a neurology unit. They did another EEG that was found to be normal again. But this neurologist did prescribe Tegretol and it may be helping. She hasn't had a seizure in 45 hours and she isn't jerking like she had been since the first seizure. However, we were told to follow up with our family Dr because it wasn't necessary to see a neurologist since they are pseudo seizures.
Has anyone else had this much trouble getting someone to take them seriously because the EEGs are normal??? What should I do???
She was transferred to Riley's Children's hospital at IU Medical Center for a 24 hr video EEG and had a grand mal seizure in the ambulance on the way to Indianapolis.
During the 24 hr EEG, which was really only about 16 hours, they were able to induce a seizure with a strobe. However, the Dr said the EEG was completely normal. We were told they must be stress related, was sent home with no meds, was told to practice deep breathing, and to see a psychiatrist. She has been in counseling for several years and her counselor says there is no way they could be stress related. He says she is his most stable patient. He's been doing then for more than a couple decades, so I would think he knows what he's talking about.
Since then the seizures haven't stopped. She was averaging one seizure about every 3 days until last Friday. Since last Friday it has been at least one each day. Wednesday she had 4 seizures back to back in the hallway of the high school and was taken to the ER by ambulance. Since she was scheduled to see a local neurologist on the 28th for a follow-up, the ER Dr gave her a prescription for Ativan to place under her tongue if she felt she may have a seizure. Not the best solution because she usually doesn't know when she may have one and she could choke on the pill.
Later that afternoon, the local neurologist's office called to cancel my daughter's appointment because Riley's diagnosed them as stress related pseudo seizures. She said it would be like someone coming to them for a broken foot.
Sunday she had 9 seizures in 5 hours. After the 4th one, I took her to the ER. When the ER Dr saw the seizures, he said they were definitely 'real seizures' and gave her 1000 mg of Dilantin and transferred her to a hospital with a neurology unit. They did another EEG that was found to be normal again. But this neurologist did prescribe Tegretol and it may be helping. She hasn't had a seizure in 45 hours and she isn't jerking like she had been since the first seizure. However, we were told to follow up with our family Dr because it wasn't necessary to see a neurologist since they are pseudo seizures.
Has anyone else had this much trouble getting someone to take them seriously because the EEGs are normal??? What should I do???
