Hugs. Neve rhave, but I'd guess it's time for significant neurological and psychiatric evaluation and re-evaluation and re-re-evaluation? Supportive hugs.

No, Oz, but it sounds like Leo's right. I see both a neurologist and a psychiatrist regularly myself, so just from my own experience, I'd start with the neurologist first to rule that out first. Sending you support.

Wow. No. I had a seizure under ten years, I realized after talking to my Therapist and my Neurologist was Concerns that it was recently. I had a friend who was in a coma due to seizure and missed out on her childhood because of it. But she has her PhD now. Sending you Support also

Never heard of that before either. Sounds really scary. Is there a way to reason her out of thinking she's 9? Look how big you are? When you were really nine we lived in.... now we live.......? Something like the grounding exercises used for flashbacks? It doesn't sound like the kind of medication side effect I'm used to hearing about, but did it start near a medication change?

So glad she has you to help her. Totally agree to get her evaluated by the experts. I hope it's something simple, and simply treatable.

Thoughts and prayers that the evaluation will make the cause obvious and for better days..

Thanks for taking time to reply. She has had numerous tests as far as whether the seizures are epilepsy. We are 98% certain that the seizures are due to extreme stress this year and related to years of childhood abuse.

It is her coming to as a 9yo. All I can do is speak calmly to her to try and gain her trust. It is pure and raw fear when she is 9 and it is an extreme form of flashbacks as far as I can tell. The seizures are completely out of her control. When she is 9, I and a friend of hers are the only people allowed to touch her. This is her best friend, and the first time it happened with her best friend driving her home she had no idea who this person was. She is developing a relationship with her friend, but as her 9yo self.

You can't reason with her, just reassure her that she is safe and wait for the next seizure to bring her back as her 20 year old self.

Totally bizarre. No doctor has been able to replace it. I think it is quite rare, though this form of seizures is not.

Correction to last para. No doctor has been able to explain it.

Has she ever been checked for Transient Epileptic Amnesia? This is a rare form of epilepsy where there is a long term memory loss and flashbacks. Often it can’t be captures\d on MRI. A person can lose short term and long term memory. Here is some information:

https://www.medlink.com/article/transient_epileptic_amnesia

Hi Secouya

Thanks for the link which I have looked at plus another article. This form of epilepsy does not fit with what our daughter experiences. She is already on the one medication mentioned in the link, but as a mood stabiliser. All her eegs have been normal. Will keep trying to find something that fits. There is one condition I have found, which is ocdd I think. It is similar to DID except the person does not develop alters.

All so complex.

Condition I think it could be is OSDD-1a.

Ozmum, yep, the brain and its way of handling traumas gets surreal at best. I hate to say this, but when she is Nine-Her, can she talk about what caused her problems, or are they all in the future? Is she
rebuilding her life, I take it, from that point, to skip bad things? B/c it may be she'll only heal if the trauma stuff heals ---- something her adult self cannot yet cope with ---- so the best I can recommend is that you continue doing your best, and let her know she is safe *here and now*. I wish there was more to say or do, but from what I know of these things? Who she was from ages 9-20 has to feel safe, and since that can't happen without a time machine, her brain "made" one. Where does that leave you? A worried mother. But the normal EEGs are encouraging, b/c that indicates no underlying actual epilepsy (which I have, and it's annoying at best). Have they tried a functional MRI (fMRI)? Located what triggers the "seizure" that "flips" her? I discovered my PTSD can be triggered by a *word* of all things ---- and it's a common one, FFS.

So, going off that meager bit of my own life, I can only send healing hopes and puma power.

Leo, thanks for your insight and encouragement. This dd is triggered by a very common word too. Also, any male touching her or even being close to her can trigger a seizure, and many nurses and doctors are male which makes life complicated when she needs medical treatment. She revealed the other week that when she was nine was the first time a particular form of abuse happened. There is absolutely no memory of her life beyond nine when she is her nine year old self.

As a result of how much the seizures are impacting her life her depression is deepening. She said to her neurologist that she wishes it was epilepsy because then medication would be an option rather than a long haul of intensive psychological therapy which may or may not help.

The mri has shown up a small area of abnormality where the left front temporal lobe joins the amygdala and hippocampus, but the neurologist is uncertain whether this is impacting her seizures or not. She does have a referral to a neurologist in Sydney who can do more detailed tests and scans.

All the best with your healing journey.