Carlin & Evan 11: Scary Health Situation

[CanadianMamam]

37 minutes ago, BeccaGrim said:

Is this normal to go so long without an episode and then have them again? 

Yep. From WebMD: "Overall, the likelihood of a seizure during the first 2 years after stopping medication is about 2 to 3 times greater than what it is for people who stay on their treatment. After that, there's not really a difference.

If seizures return, there's a better than 90% chance that they can again be controlled with medication. But you may not see results right away. For some people, it could take up to 2 years."

Seizures are not predicatable and the medication takes time to get out of the blood stream, etc. 

[llucie]

She seems to be having episodes very frecuently again, probably why she is barely posting at the moment. In Alyssas vlog they said she had another scary episode that lasted 20 minutes and she passed out in the street. Alyssa seemed really concerned for her and Carlin was on the berge of tears when Alyssa was talking about it.

[Smash!]

Maybe I‘m too harsh but I don’t get why she isn’t taking her medication. She could injure herself during one of her seizures or - god forbid - carry her baby when she passes out. I guess there are different meds and maybe she needs to try different ones.

[llucie]

13 minutes ago, Smash! said:

Maybe I‘m too harsh but I don’t get why she isn’t taking her medication. She could injure herself during one of her seizures or - god forbid - carry her baby when she passes out. I guess there are different meds and maybe she needs to try different ones.

She is back on her meds already, Evan has posted stories from her instagram to give an update a couple days ago. She was in bed aparently feeling really bad and nauseous because of the medication. He said he is taking care of the children. Hopefully she can adapt to the medication or they can find something else that doesnt left her bedridden.

Maybe i am getting the timeline wrong but for what i understood after she was told to get back on the medication she just waited 1 day or maybe a couple days, it is not like she is refusing to take it or anything like that.

Edited July 15, 2022 by llucie
spelling

[CanadianMamam]

18 minutes ago, Smash! said:

Maybe I‘m too harsh but I don’t get why she isn’t taking her medication. She could injure herself during one of her seizures or - god forbid - carry her baby when she passes out. I guess there are different meds and maybe she needs to try different ones.

She is back on the medication. It takes time to work. She wasn't told immediately to go back on and when she was told, she chose to wait a day or two so she could attend the cash and carry at the boutique since the medicine makes her feel like garbage for days. 

She has not been carrying her babies at all. When Katie visited, she was wearing Zade. Michaela wore Zade the entire time they were in SC. Evan was carrying him on vacation (and they had Ellie and Addee there as well). 

[marmalade]

FWIW, she HAS been carrying her kids. In their latest vlog, Carlin is filmed carrying Layla in the surf while in Florida. Not on meds. So who knows what she did when the camera wasn't on her? 

So no, they were NOT taking every precaution in the time period when she went off her meds. 

[Italiangirl]

I don't get all these positive attitudes around Carlin and how she acts regarding her meds, frankly, first she says she knows she has to go back on meds because they are the only thing helping her and she has weaned off of them only to do the test and then after she had a couple of scary episodes she decided to go back on them claiming she and they didn't know she was supposed to take them as soon as the exam was complete. I may be too harsh I may have missed something but if someone I love is so sick and refuse to go back on meds just because wants to keep living life like before I would have a serious convo with her/him about the pro and cons of taking meds not just say ok whatever 

[llucie]

37 minutes ago, marmalade said:

FWIW, she HAS been carrying her kids. In their latest vlog, Carlin is filmed carrying Layla in the surf while in Florida. Not on meds. So who knows what she did when the camera wasn't on her? 

So no, they were NOT taking every precaution in the time period when she went off her meds. 

They are behind on the youtube videos, at the time of the vacation she was having no episodes.

[llucie]

17 minutes ago, Italiangirl said:

I don't get all these positive attitudes around Carlin and how she acts regarding her meds, frankly, first she says she knows she has to go back on meds because they are the only thing helping her and she has weaned off of them only to do the test and then after she had a couple of scary episodes she decided to go back on them claiming she and they didn't know she was supposed to take them as soon as the exam was complete. I may be too harsh I may have missed something but if someone I love is so sick and refuse to go back on meds just because wants to keep living life like before I would have a serious convo with her/him about the pro and cons of taking meds not just say ok whatever 

Honestly i just dont get the negative attitudes. They have been going to the doctor every time she had an episode, they have consulted diferent doctors and gotten second opinions. She took the medicine when she had it prescribed to her. They did said it was a temporary thing. After the test was done and they were not having episodes it is kinda understandable for them to think she didnt need it anymore, specially when doctors have been telling them it may be a fluke thing related to pregnancy and it may go away at any time.

It is dificult to navigate a health condition when you dont have a diagnosis and sometimes it even seems like people are almost blaming Carlin for her health issues. If she leaves the house it must be her fault that it triggered because she is not resting enough. If she goes on vacation and doesnt have episodes there then thats suspicious too and she must be faking it.

 

Edited July 16, 2022 by llucie
to add

[marmalade]

48 minutes ago, llucie said:

They are behind on the youtube videos, at the time of the vacation she was having no episodes.

But she was supposed to go back on her meds after the EEG (but claimed she didn't know this. Lie. She didn't WANT to go back on them.) So she played Russian Roulette. She just got lucky. 

Edited July 16, 2022 by marmalade

[llucie]

1 hour ago, marmalade said:

But she was supposed to go back on her meds after the EEG (but claimed she didn't know this. Lie. She didn't WANT to go back on them.) So she played Russian Roulette. She just got lucky. 

I just dont see the reason for her to lie about that. Nobody knew what the doctors told her except for what she said and nobody knew either if she was still on the meds or not. She even openly admited she was waiting until after the cash and carry to start the meds back again.

Maybe i am being naive, i give you that. But i can believe someone like Carlin really missunderstanding or not getting the doctors orders correctly, specially since after the test she didnt see any doctors as they are still waiting for the results to see him.

Edited July 17, 2022 by llucie

[marmalade]

Carlin didn't get as lucky as I thought. She had a serious episode while As lyssa was visiting, before the Cash and Carry. So she was still off her meds. Alyssa notes in her vlog that it was scary, questioning why they didn't go to the hospital. Carlin downplayed it, saying the doctors don't do anything. 

That was a window into her attitude about all this. She's now complaining about the meds' side effects, asking followers if her experience is normal. Hey Carlin, call your doctor or use Dr. Google. Unless you name your drug, how will people know what's normal?

[neuroticcat]

She also says the doctors think she had an underlying condition she’s had her whole life that was likely activated/triggered by pregnancy/labor trauma. 

Wonder how that’s discussed in QF circles. 
 

She says the doctors need to figure out if it’s triggered by heart or by brain but until then : meds, lots of feeling out of it, and mom guilt. She says Evan is telling her she needs to show up for herself first (good job, Evan), but she follows it up with fundie guilt…show up for myself so I can show up for anyone else. 
 

 

[Italiangirl]

9 hours ago, llucie said:

I just dont see the reason for her to lie about that. Nobody knew what the doctors told her except for what she said and nobody knew either if she was still on the meds or not. She even openly admited she was waiting until after the cash and carry to start the meds back again.

Maybe i am being naive, i give you that. But i can believe someone like Carlin really missunderstanding or not getting the doctors orders correctly, specially since after the test she didnt see any doctors as they are still waiting for the results to see him.

The lie is in that now she Is claiming that She didn't KNOW she had to go back on meds, while just a few days before she said she didn't WANT to go back on meds, the doctor have been very clear (as she said before) She had to go back on meds the day the test was over. She decided she didn't want to (ok but first ask to tour doctor so that they know you are off meds if anything happen), now after more scary episodes she Is forced (not by anyone but the situation) to go back on meds and she said she didn't know she had to. She took big risk with her health and now she is acting all cool. This Is where people have problem with her 

[Jrodseyeliner]

Am I the only one thinking what an idiot to not go back on your meds after what she is going through. 
 

[CanadianMamam]

I don't see the lie either. Before the EEG, she made it sound like the meds were temporary. Last week, she said she said she knows (now) she was supposed to go back on and she is waiting a few days until after cause and carry. Nothing says she knew a month ago that she was supposed to go back on.

This is a confusing situation, she is seeing multiple doctors. Medical information is often scary and overwhelming and conflicting. I have a chronic illnesses, I have repeatedly been prescribed medications that conflict with one another, my doctor's  haven't caught this--I have had to. 

[SassyPants]

In the past when they were dealing with Layla’s medical issues, they both seemed underinformed and confused. As an example, they didn’t know what to do when Layla stopped breathing and called Kelly vs 911. I think neither of them fully grasps these issues, which can happen with shock and a crisis. Im still in shock at all these problems these young women have encountered. Maybe they all need to place their own health first and give their bodies a break!

[Keys]

2 hours ago, SassyPants said:

In the past when they were dealing with Layla’s medical issues, they both seemed underinformed and confused. As an example, they didn’t know what to do when Layla stopped breathing and called Kelly vs 911. I think neither of them fully grasps these issues, which can happen with shock and a crisis. Im still in shock at all these problems these young women have encountered. Maybe they all need to place their own health first and give their bodies a break!

Yeah, this was my impression too. She often seems confused and unsure about medical matters and relies heavily on Evan to communicate the info in her stories (even before these episodes started). So it’s totally plausible to me that she didn’t realize she had to go back on the meds - medical info can be confusing for anyone at the best of times. 

[Smash!]

4 hours ago, SassyPants said:

In the past when they were dealing with Layla’s medical issues, they both seemed underinformed and confused. As an example, they didn’t know what to do when Layla stopped breathing and called Kelly vs 911. I think neither of them fully grasps these issues, which can happen with shock and a crisis.

I get it‘s scary and overwhelming. I get it‘s scary to take medication with massive side effects that affect the brain.

Maybe it‘s because I have a decent education and like to be informed but I don‘t understand why someone doesn’t know what they have and what it implies. Ask your doctor what all of this means. They seem to have access to good hospitals/specialists. Search online for reputable sites.

I don’t know if this is a case of SOTDRT. 

[llucie]

9 hours ago, Italiangirl said:

The lie is in that now she Is claiming that She didn't KNOW she had to go back on meds, while just a few days before she said she didn't WANT to go back on meds, the doctor have been very clear (as she said before) She had to go back on meds the day the test was over. She decided she didn't want to (ok but first ask to tour doctor so that they know you are off meds if anything happen), now after more scary episodes she Is forced (not by anyone but the situation) to go back on meds and she said she didn't know she had to. She took big risk with her health and now she is acting all cool. This Is where people have problem with her 

No, she didnt say one thing first and then contradicted herself. Both things she claimed at the same time. It was even the same day and in the same series of instagram stories. She said she just discovered she was supposed to go back on the meds that day after having a seizure, but she decided to wait until the cash and carry to start them back again. At that time the cash and carry was the next day.

I do think it was still really irresponsible of course to wait even 1 day to start back on the meds the moment she knew she was supposed to be taking them and she was back having seizures, but it is not as bad as purposefully stopping the meds like you are saying. 

Edited July 17, 2022 by llucie
clarify

[neuroticcat]

I do think age has something to do with it. Prefrontal cortex isn’t fully developed until, what, 25? That is not to say young adults are stupid, just that I’m not surprised two very young under equipped (and one likely chronically dissociated at some level) adults aren’t obsessively clear on a serious medical situation. I think the fear and being anxious or worried is likely there but I imagine they aren’t developmentally in a place to register the life or death necessity of being clear with medical details in practical ways. 

Maybe I’m projecting, but I remember passing out inexplicably in a restaurant at age 20 and at a different time having a severe allergic reaction.  Never thought to schedule a follow up or even worry about it. Aren’t teens/20s the least likely demographic to follow through with Epipens, etc?

Sounds like she has a complex and somewhat mysterious situation going in. Very easy in retrospect to say what she should’ve done. 

 

[browngrl]

I have a lot of snark for the Bates and their beliefs in general but I have none for Carlin's health issues. I think this is because I've seen many patients and I've been a patient myself.

Significant but not yet diagnosed medical conditions where you are seeing multiple doctors and having multiple tests are difficult journeys to negotiate. Things fall through the cracks ALL the time. It can easily get confusing for even the best educated or most experienced. On top of this it is often hard to process information when you are sick, dealing with very bad news, juggling child care and work, being post partum etc. and wishful thinking is not uncommon.

Not going back on the meds may well have been Carlin's mistake but it could also have been her health care providers or just the system that is responsible for this lapse. I don't blame her for complaining about the side effects of the seizure meds as some have some pretty rough side effects.

Overall, I don't think she and Evan are doing too badly in following medical advice and the testing they have had and doctors they have seen seem reasonable to me.

[GuineaPigCourtship]

If her doctors were not abundantly clear about restarting the medications after the testing, shame on them.  If they were and Carlin ignored it, shame on her.  But really, that is in the past and at least she is back on medication to help her now.  The most important thing in this case is to keep her as safe and healthy as possible because she has a husband and two little kids that need her.

I hope she trusts her medical team and they're able to all work together for the best outcome, and hopefully that they're able to uncover some answers soon.

[dawn9476]

On 7/16/2022 at 8:56 PM, marmalade said:

Carlin didn't get as lucky as I thought. She had a serious episode while As lyssa was visiting, before the Cash and Carry. So she was still off her meds. Alyssa notes in her vlog that it was scary, questioning why they didn't go to the hospital. Carlin downplayed it, saying the doctors don't do anything. 

That was a window into her attitude about all this. She's now complaining about the meds' side effects, asking followers if her experience is normal. Hey Carlin, call your doctor or use Dr. Google. Unless you name your drug, how will people know what's normal?

The last time she went to the hospital, she & Evan said that the doctors told her to not go to the hospital after each major episode because it was just a waste of time because they are just going to do the same thing each time. They told the best you can do is make sure that they are comfortable through an episode because there is not much more a hospital can do since they have ruled out that what is causing Carlin's seizures is most likely not life threatening since all her the major tests came back negative.

Edited July 18, 2022 by dawn9476

[Bbfamteam]

It’s not surprising they seem confused. The studies suggest patients immediately forget around half of what the physician/APP tells them at every visit. If you take into account their young ages, the stress of the situation and what is likely low medical literacy they would be high risk not to understand everything said especially if they were hit with a lot of information. I deal with the same situations daily and the more physicians involved with patient care the more likely patients are to receive conflicting or unclear instructions. I try to combat this by summarizing the instructions 1-2 times before I end the visit and if I’m concerned I give them in writing. Despite this patients are still confused sometimes by the time they get to the front to check out. I can snark on a lot of things but I’ll give them a pass on this one.