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Daughter recently Diagnosed - Could she outgrow it?
Epilepsy & Seizures | Last Active: Aug 31, 2025 | Replies (21)Comment receiving replies
2. She didn't...
3. How can I address treatment for PNES to be proactive if there is a blend of what is going on here? She clearly has discharges across her EEG so obviously Neuro has said she has epilepsy and will ignore PNES likely (I haven't brought it up). But if I can treat PNES while treating epilepsy then we might be better off.
4. She hasn't ignored it just said we will discuss later. She is 15 and they do not get a gyno until post 21 now so I am going to see if I can get her in now so we have it on the calendar.
5. Yes - I submitted the paperwork, they called, logged my insurance and said they would get back to me in 2 weeks.
Question - what is an epilepsy Center? I have had 2 EEGs (morning test upon first seizure at 13), 24 hour test post 3rd Seizure and I have another morning standard EEG test in Oct (that I am waiting for). What else can I do ? I will do whatever I need to just need to know what other options. In Colorado there is only 1 predominate Children Neuro center and that is Children's Hospital. There are a lot of other options for adults but not Children.
Replies to "2. She didn't... 3. How can I address treatment for PNES to be proactive if there..."
Mayo has an EMU (epilepsy monitoring unit) where they admit you for 5-7 days and they do 24/7 EEG and video monitoring. They try to bring on seizures in their patients to better diagnosis the type. I’m assuming other neurological centers do something similar.
The amazing thing for our son was they were able to safely take him off all of his meds (which weren’t working anyway) and see what was happening and we discussed what was the best treatment for him and got meds on board before he left the hospital. He hated it, they have 0 moments of privacy. Can not even go to the bathroom on his own, which is good cause one of his seizures while there was in the bathroom!
We were so thankful as we were living in fear before that time, and it gave us some hope that he would be able to live a “normal” life.
He had 6 seizures (2 events) after he left so his meds were increased each time. But next week, it will have been 18 mos since the last event.
(Sorry, long explanation of what is an epilepsy center) 😂
Tracey
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FYI - Her MRI came back with a slightly smaller hippocampus on left than right. Very small difference so tech noted to be normal as most people have this, however this slight variation can be seen in people with PTSD. She is and has for a while had an overactive flight or fight response. Very jumpy. I need to get her into the right 15 year old appropriate therapy but she is afraid of it as the thought of processing trauma makes her anxious.