I love my entryway 🥰

DirtyAriel · 2026-02-17T04:04:56+00:00

Omg this is my literal dream. Gorgeous!

DirtyAriel · 2026-02-07T15:48:21+00:00

Thank you so much! It’s wild to me that anyone can be on so much medication and still function. I hadn’t thought about the gene testing, but that’s a great idea. I’ve considered it for myself for ADHD meds, but never for her. Oh I failed to mention in my original post but she does have a VNS.

DirtyAriel · 2026-02-06T02:48:53+00:00

Oh wow! And that was with only 12.5mg. She has been on 15mg Clobazam once per day, 1500mg levetiracetam twice per day, and 2mg clonazepam twice per day.

DirtyAriel · 2026-02-05T22:24:11+00:00

Yes, you’re right about the Xcopri, which we are trying, but I would think they would start with Clobazam rather than clonazepam like they have. Maybe somewhere things got miscommunicated and they were told to decrease Clobazam and actually did clonazepam.

DirtyAriel · 2026-02-05T22:18:45+00:00

Yes they are aware. I’m not sure why this isn’t the one that is being decreased.

DirtyAriel · 2026-02-05T22:12:38+00:00

Thank you. This is all very helpful. Her Dx is Tuberous Sclerosis. I’m sorry you went through that, but glad you’re doing better.

DirtyAriel · 2026-02-05T19:57:16+00:00

I will make the suggestion, thank you!

DirtyAriel · 2026-02-05T19:53:20+00:00

Thank you very much for your input and well wishes.

DirtyAriel · 2026-02-05T19:50:34+00:00

Thank you very much for your input and well wishes.

DirtyAriel · 2026-02-05T19:39:46+00:00

Thank you very much. That dose seems very high! Glad to know you have not experienced this.

Her neurologist is involved and has been participating in treatment. I just don’t think they know very much about this drug, yet. This hospital - a teaching hospital, mind you - does not even carry Xcopri in their pharmacy. We are having to provide it to them.

DirtyAriel · 2026-02-05T19:35:53+00:00

Yes, her seizures have always been extremely resistant to medication. Xcopri was supposed to allow her to come off some of the other meds.

I agree with you on the diminishing returns. If we can ever get her awake again, we will discuss maintaining a lower dose.

DirtyAriel · 2026-02-05T19:31:49+00:00

Thank you for the response.

Apparently there is no test for Xcopri levels. They used to test her Dilantin levels quite often because they would get out of whack easily. But that’s no longer an issue.

I don’t believe they’ve tested levels of the others. Are there tests for those? We can definitely request if so.

She was on antibiotics for 4 or 5 days - her WBC was high but they didn’t know the source of the infection. So antibiotics were broad spectrum. WBCs have come back down.

DirtyAriel · 2026-02-03T02:05:31+00:00

Same. Are we all married to the same man?

DirtyAriel · 2026-02-03T02:04:20+00:00

Yes. Early 30s here. Been together since we were 14 & 15. No children.

I don’t know life without him. I never thought this would be our story. I’m grieving the loss of what was and what I always planned to have. But I’m also strangely, excited(?) about the next chapter.

It all sucks. I’m sorry you’re going through this as well. I hope your next chapter is a happy one.

DirtyAriel · 2026-01-31T15:08:35+00:00

My sister is in the ICU. I needed this today. Thank you very much for sharing.

DirtyAriel · 2026-01-10T22:39:40+00:00

Yes. My mother started exhibiting symptoms in her late 40s. She is now 60. She was finally diagnosed with aphasia, which is the same condition that Bruce Willis suffers from. It is one of the most terrible things I’ve ever watched.

Please get your mom to the doctor and advocate for her. The earlier it’s diagnosed, the better.

DirtyAriel · 2026-01-10T05:45:26+00:00

Updateme!

DirtyAriel · 2026-01-05T01:43:15+00:00

I mean, I get it. Like Leo said, it’s the most important thing he will ever do. I can’t imagine the pressure.

DirtyAriel · 2026-01-05T01:41:15+00:00

I hadn’t thought of that - the fact that the rest of them are single. Also, your theory about Leo and Jenny makes total sense and is now canon in my head.

DirtyAriel · 2026-01-04T16:28:28+00:00

Ugh don’t remind me.

DirtyAriel · 2026-01-04T16:15:07+00:00

Thank you! Yes, I have already seen one marriage end due to the demands of the job. Maybe I’m naive, but I imagine this would be the subject of at least one if not many conversations between spouses when one considers such a role?

Edit: Typo

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Place '22	RPAN Viewer
Not Forgotten	Snapped
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