Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if
you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from our readers and the question was
My Girlfriend is Critically Ill in ICU with Seizures. What Makes it Unpredictable for Her to Wake Up From An Induced Coma?
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer questions from one of my clients Larry, as part of my 1:1 consulting and advocacy
service! Larry’s girlfriend is with seizures and has a tracheostomy in place. Larry is asking why is it important for his girlfriend to be mobilized?
My Girlfriend is with Seizures and has a Tracheostomy in Place. Why is it Important for Her to Be Mobilized?
Patrik: Yeah. Good. So what I’ll do, Larry, give me about an hour, and I will send you some questions in order for you to find out. And once you’ve got some answers to those questions, please get back to me, and then we can spend another half an hour. And I will also send you a link to a case study so you can have a bit of a read there, and actually a long case study. I think we worked with this guy for a long time. It was broken down probably
into 15 case studies, but I’ll send you all of the links. So it was fairly long. But it’s also a good one for people to understand what needs to happen, how can you help as family or a partner.
Whatever the case may be, there’s some good information in there.
Larry: Okay. All right. Thank you.
Patrik: You’re very welcome. As I say, give me about an hour. I’m just a bit busy at the moment. I will email you some information. And then you let me know when you want to get on the phone again. You’ve got at least another half an hour.
Larry: All right. Thank you.
Patrik: Okay. Thank you. All the best for now. Stay positive.
Larry: Take care.
Patrik: Thank you. Bye bye. Take care. Bye.
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Larry: Hello?
Patrik: Hi, Larry. It’s Patrik here from Intensive Care Hotline. How are you?
Larry: Pretty good. How are you doing?
Patrik: Very good. Thank you. Sorry that I couldn’t talk to you a minute ago. Now, I’ve got some time.
Larry: Okay. That’s fine.
Patrik: I do remember, I just quickly looked through my records, we spoke on the 4th of January.
Larry: Yeah.
Patrik: Your 35-year-old girlfriend was in ICU at the time with cardiac arrest and seizure. Is that
correct?
Larry: Yes.
Patrik: Right. And she had a tracheostomy at the time?
Larry: Yes. She was taken out of ICU and she’s on a regular floor.
Patrik: Okay.
Larry: The only thing that… you know, the doctor was negative, and that she’d probably stay in this state for a long time or forever. So, she opened her eyes.
She’ll kick her feet, swing her arms, but nothing controlled like she’s actually doing it on purpose, and she’s not really recognizing anyone.
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Patrik: Right.
Larry: Yeah. So, I wanted to run by what she was on, and if that may affect it.
She’s on Vimpat, Keppra and Dilantin.
Patrik: Okay. They’re all anti-seizure medications. Before I can answer your question, I probably would need to know a few more things. Is she still having seizures on those medications?
Larry: No, she’s not. She hasn’t had any.
Patrik: Okay. When was the last time she had a seizure?
Larry: Oh, man. It could have been a month ago, like back when she was in ICU.
Patrik: Okay. How long ago has she been out of ICU?
Larry: About one month and one week.
Patrik: Okay. Have you heard of the term “Glasgow Coma Scale”?
Larry: What was that again?
Patrik: Have you heard of the term “Glasgow Coma Scale”?
Larry: No, I haven’t.
Patrik: That’s okay. I’ll give you a quick rundown. I’m not trying to avoid answering your question, but I need more information.
Larry: Okay.
Patrik: The reason this is important. There’s an assessment scale in the medical world where a level of consciousness can be assessed and that’s the Glasgow Coma Scale. So, you and I talking, we are both Glasgow Coma Scale of 15, 1-5.
Okay?
Larry: Okay.
Patrik: That’s the maximum score. That’s basically we are fully alert, we can talk, our speech makes sense, we can walk. I assume you can walk, we can talk. We can do anything that a normal healthy person can do, and that’s a Glasgow Coma Scale of 15.
Larry: Okay.
Patrik: The lowest score is a Glasgow Coma Scale of 3. Okay? That’s the lowest score. So, your girlfriend still has a tracheostomy?
Larry: Yes.
Patrik: Okay. Is she still on the ventilator?
Larry: They are saying that when she came out of ICU she was cleared to breathe on her own, but they use the tracheostomy just to spray a mist on her lungs.
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Patrik: To do what?
Larry: Spraying some mist on her lungs.
Patrik: Yeah, okay. But she’s not on the ventilator anymore?
Larry: No.
Patrik: Okay, good. She’s opening her eyes? You said that?
Larry: Yes. She opened her eyes. The doctors did say she had a sleep-wake cycle, so she opens them and then she slept.
Patrik: Okay. If you were to take her hand and you ask her to squeeze your hand, would she be able to do that?
Larry: I don’t think so. She has squeezed it, but she hasn’t followed any commands.
Patrik: She hasn’t followed commands?
Larry: No.
Patrik: Okay. I’ve just emailed you the Glasgow Coma Scale because I think it’s important for you going forward to get a feel for that. It’s not difficult to work it out.
As I said, I’ve just emailed you a picture there. You can have a look later.
Yes, the medication she’s getting is most likely contributing to her not waking up.
The reason for that is, it’s often a fine line between controlling the seizures and not having a sedative effect. It’s a very fine line.
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Larry: Okay.
Patrik: Right?
Larry: Yeah.
Patrik: Do you know the doses? Do you know how much Keppra she’s on? Do you know how much Vimpat she’s on? Do you know how much Dilantin she’s on?
Larry: No, I don’t know the doses, but some of them are two and three times a day. She only told me all the drugs that she was on.
Patrik: Okay. Then, it also depends, for example, the weight of your girlfriend.
Let’s just say, for argument’s sake, somebody is getting 750 milligrams of Keppra twice a day. If somebody weighs 50 kilograms as opposed to 150 kilograms, there’s a big difference in effect.
Larry: Okay.
Patrik: Right? So, even though you might tell me, you might find her dosages, it also depends on your girlfriend’s weight.
Larry: Okay.
Patrik: They would have to adjust the dosage according to the weight but also according to responsiveness. Again, you might start with a low dose of Keppra and Dilantin, and your girlfriend is still having seizures, so they know it’s not enough.
So, then they increase the doses until the seizures stop, but then you might have the side effect of being too sedated.
Larry: Yes.
Patrik: That’s your concern and you’re probably on the right track there, that your concern is valid.
Larry: Yeah.
Patrik: I tell you what often happens, in sort of low-grade seizures, Keppra and Vimpat, or Dilantin and Vimpat, should be sufficient. Given that there are three anti-seizure medications in the mix is probably a sign that they have issues controlling the seizures.
Larry: Yeah. The staff, the thing is that they were not sure if they were seizures when she was in ICU, so she didn’t have the type of seizures she had when she was home where it would throw her body to the ground.
Patrik: Yeah.
Larry: She weighs about 120 pounds.
Patrik: Yeah.
Larry: She’s on three medications, and they added a fourth one, which is the Klonopin. They told me they had her on a high amount of seizure meds when she was in ICU and they never told me if they ever took it down. So, those three or four medications she’s on at the moment.
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Patrik: Yeah.
Larry: Klonopin, Dilantin and Keppra, and she’s never been on that many seizure meds in her life. She would always take one and that would be Keppra.
Patrik: Yeah, and that would make sense. Did you… hang on. When we started the conversation, I thought you said Vimpat, Keppra and phenytoin. Or did I misunderstand that? Did you say now Klonopin as well?
Larry: No, I didn’t. I just said Keppra. Well, I wasn’t sure, but I know she only took Keppra before the seizures.
Patrik: But currently, she’s on Vimpat, Keppra and phenytoin?
Larry: Not fentanyl. Klonopin.
Patrik: Dilantin is phenytoin. Sorry. Dilantin is phenytoin.
Larry: Oh, I’m sorry.
Patrik: No, no. My mistake. Dilantin. Yeah, Dilantin is phenytoin, but not fentanyl.
But did you say… you mentioned another medication with C.
Larry: Klonopin.
Patrik: Okay. There is Klonopin. It could be Clobazam as well. They’re all anti-seizure.
Larry: Yeah. The nurse told me Klonopin, so I don’t know which one or…
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Patrik: Yeah.
Larry: But she said Klonopin.
Patrik: Okay. A very high chance it’s Klonopin.
Larry: Okay.
Patrik: And Klonopin would have a sedative effect.
Larry: Okay.
Patrik: It would have a sedative effect. There is also a chance that your girlfriend might be on benzodiazepines. Do you know what I mean by that?
Larry: Yes.
Patrik: Right. Stuff like Valium or diazepam. Do you know whether she’s getting that as well?
Larry: Well, when I asked her what medication she was on, she only told me those. But I probably just specified seizure meds and she probably didn’t mention any other meds. But I asked what medication she was on for seizures and she told me all of those.
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Patrik: Right.
Larry: She never told me anything else.
Patrik: Right. I’ll tell you what most likely is happening. She may not have the benzodiazepines regularly but she would have them as a PRN order. A PRN order means basically as required. Let’s just say, God forbid, your girlfriend has a seizure and they obviously can’t control it, she would be getting a benzodiazepine in an emergency or semi-emergency, like diazepam, potentially midazolam. They’re all benzodiazepines and they usually stop
seizures fairly quickly. The Vimpat, the Keppra and the Dilantin are more long-term anti-seizure meds.
Larry: Yeah.
Patrik: That’s what’s probably happening. Where is she at the moment? She’s out of ICU?
Larry: Yes. She’s on the fifth floor of this hospital. Down the hall I think it was a stroke centre or a stroke unit.
Patrik: Right. Are they mobilising your girlfriend?
Larry: Like walking her around? I’m not sure. I have a friend that comes in and will massage her legs, but I doubt that they’re… I don’t think they’re doing any of that.
Patrik: Okay. So, what I mean by that is are they sitting her out of bed?
Larry: No.
Patrik: Okay. Why do you think they’re not doing that?
Larry: I’m not sure.
Patrik: Okay. I can tell you that recovery will only happen with stimulation. You see, one of the risks of mobilizing your girlfriend might be that they think, “If we stimulate her too much she might have seizures again,” right? That could be some of their thinking. But I argue if they haven’t even tried, they wouldn’t know.
Larry: Okay. Exactly.
Patrik: You’ve got to think along the line, you’ve got to think around the issue, or if they’re not mobilizing her… she’s contracting, probably? She’s having contractions?
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Larry: Yeah.
Patrik: So, it’s going to be really important that they start mobilising her.
Larry: Okay.
Patrik: Okay. I’ll give you another example. Just last week, I published an interview on our blog, and the interview is around a client who had their family member in ICU last year, a similar situation. Cardiac arrest , had a seizure, and had a hypoxic brain injury. They had issues controlling the seizures and now the lady, who is in her 60s, is recovering, is talking. Next week, I’ll be publishing another interview,
similar situation. Different family, but very similar situation. They all recovered. It was at least a six-month journey, okay?
Larry: Okay.
Patrik: But a lot of it, where it came down to, is mobilization, stimulation, all of that, and that’s going to be really important. I can’t stress that enough. I can’t stress that enough.
Larry: Okay.
Patrik: If they’re not mobilising her, there’s no excuse for that.
Larry: They are writing her off basically saying she won’t get any better.
Patrik: Yeah.
Larry: Like that’s the narrative. Every time I come to see her it’s negative, and I had… I mean it just made sense that it was medication. She would kick her feet, kick the blankets off her feet, off her legs, and I mean she can kick pretty high.
She’ll put her feet over the edge of the bed and she’ll constantly move her feet.
She’ll constantly move her arms but yet they’re not any controlled movements, but I just felt like… I don’t know. I just felt like there was something that could have been done.
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Patrik: Yeah. Look, Larry, it’s so important to mobilize the patient; it’s so important, and your girlfriend is 35. I would be telling you the same if she was 65, 75, or even 85. I would be telling you the very same. Right?
Larry: Okay.
Patrik: It’s not age dependent at all. Your girlfriend is 35. Well, if they’re not trying, she won’t improve for sure, but you’ve got to give it a go.
Larry: Okay.
Patrik: Right? What I’ll do is I will email you or text you a link to the interview from last week, and there’s another one coming out this Thursday. They’re different clients, but the story is very similar, right?
Larry: Okay.
Patrik: And it’s very similar to what you’re going through at the moment. Very similar.
Larry: Okay.
Patrik: They were writing their family members off, and they said, “No, we need to keep pushing forward,” and now six months later they are improving. They’re talking. One of the clients had their tracheostomy removed; the other one still has a tracheostomy, but that’s okay, and they can still talk
now. They were saying to family the very same thing. They were saying, “Look, your loved one will never talk, never walk.”
Larry: Yeah.
Patrik: It’s all happening now.
Larry: Okay. Yeah.
Patrik: I tell you what excuse they might make and it’s important for you to be prepared for that. They might feel like if they mobilised your girlfriend, they might think it’s too risky. It may be triggering a seizure but again then it’s a matter of looking at the medications, what do they need to do in order to achieve safe mobilisation.
Larry: Yes.
Patrik: Right?
Larry: Yeah.
Patrik: Is she in a specialty area? Is she on a neurology?
Larry: No. No, she’s not.
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Patrik: That needs to happen. She needs to go into a specialist area. What area is it?
Larry: It’s with all types of patients that might have had a stroke, something like that, but it’s not specific. I was wondering, could she get transferred to another hospital by request or is that something that would be hard?
Patrik: If there are stroke patients in this area, there’s a good chance she is in a neurology ward. You probably have to find out.
Larry: Okay.
Patrik: Okay? If there are stroke patients in this ward, there’s a very high chance she is in a neurology ward. But the next step really is she needs to be simulated and she needs to go onto a rehabilitation ward.
Larry: Okay.
Patrik: Right?
Larry: All right.
The 1:1 consulting session will continue in next week’s episode.
Kind Regards
