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CarVan12: Health Scare Continues ... and Worsens :(


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2 hours ago, rebeccawriter01 said:

In the weekly video on Youtube that Evan just posted, he said that the cardiologist told them they had run all the tests related to her heart that they could and found no problems. He said they were going to focus on the neurologist now and get the multi-day eeg at the hospital but that things were pretty booked and scheduling far out. He said that they were thinking to discuss places like Mayo Clinic with the doctor and see if that might be an option.

I find them both very annoying but I have sympathy for them about this. I've been going through testing for a few years now about some troubling and painful symptoms. Each test is both painful and terrifying. Then I am told that they don't find anything wrong and they can't explain my symptoms.

I have a lot of sympathy for them too because I am four years into a medical journey with countless tests and the only answer I have is "we are sure it is autoimmune but we are not sure what exactly it is". 

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I am very glad the Stewarts have stopped talking and posting about Carlin’s undiagnosed medical issues. I hope the neurology team can titrate Carlin’s meds so that she is no longer having breakthrough seizures, and can function the best as she can. At this point, further testing just seems like a huge time suck. Yes, unfortunately, sometimes there’s no easy answers and life must go on. I hope they are using some highly effective form of BC as a pregancnay would be a disaster at this point. She is lucky that her neither she nor her husband is beholden to an 8-5 job every day and that they seemingly have decent HCI-

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Unless they can confirm the seizures are treated and done, I agree with Evan about the driving.  I have a friend with epilepsy and she can't drive for 6 months after a seizure, but she keeps having them.  She'll be excited to get the okay to drive again and then have another seizure.  It really is only a matter of time before she has one while driving some day and that puts both her and anyone else on the road with her at risk.  I had a family I was friends with killed (3 out of 4) when they were driving together because someone oncoming had a seizure and crossed into their lane.

It's a tough thing to have to live with, but if they can accommodate her to have a driver I'm sure the family would infinitely prefer not to risk her.

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On 9/23/2022 at 1:49 AM, Satan'sFortress said:

 

I'll give them a pass on having Dad there. They are both still quite young and this is a really scary situation. Maybe having another person listening to the medical people isn't such a bad idea. I think if I were in Carlin's situation, I might like having my mom or dad with me at a medical appointment. 

It’s helpful to have a third person there to catch everything said. Also to ask different questions. Gil is her father, he is pretty useless but he loves his kids. 

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4 hours ago, SassyPants said:

I am very glad the Stewarts have stopped talking and posting about Carlin’s undiagnosed medical issues. I hope the neurology team can titrate Carlin’s meds so that she is no longer having breakthrough seizures, and can function the best as she can. At this point, further testing just seems like a huge time suck. Yes, unfortunately, sometimes there’s no easy answers and life must go on. I hope they are using some highly effective form of BC as a pregancnay would be a disaster at this point. She is lucky that her neither she nor her husband is beholden to an 8-5 job every day and that they seemingly have decent HCI-

The thing is not having answers or a diagnosis can be very limiting. You can't access supports without a diagnosis. In terms of Carlin's driving, without answers, then she is just indefinitely unable to drive. And not knowing is a whole mental stress. Especially when you know you are sick but you can't "prove it" because you have no answers and no diagnosis. 

I have a friend who spent 6 years trying to get a diagnosis. Finally got answers that it was a rare disease that one doctor early on thoguht she might have but no one else decided to follow up on. This disease is incurable and requires medication to keep it under control and prolong her life. She lost 6 years but at least now she is on the proper treatment a . 

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1 hour ago, CanadianMamam said:

The thing is not having answers or a diagnosis can be very limiting. You can't access supports without a diagnosis. In terms of Carlin's driving, without answers, then she is just indefinitely unable to drive. And not knowing is a whole mental stress. Especially when you know you are sick but you can't "prove it" because you have no answers and no diagnosis. 

I have a friend who spent 6 years trying to get a diagnosis. Finally got answers that it was a rare disease that one doctor early on thoguht she might have but no one else decided to follow up on. This disease is incurable and requires medication to keep it under control and prolong her life. She lost 6 years but at least now she is on the proper treatment a . 

Unfortunately, life isn’t always fair or equitable, and many times a solid diagnosis (meeting all guidelines established ) can not be given. I think Carlin is in a better position than most people facing similar circumstances. She has a large, loving  family, secure resources including what appears to be plenty of financial wells to pull from. For a person in her predicament, she has lots of tools in her toolbox. She’ll be Ok. It seems the major and most devastating illnesses have already been ruled out. 

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Carlin is lucky they live in the age of Uber. They seem to have the money for it too. 

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I think taking dad along can be very comforting no matter how useless he is the rest of the time. 

That they seemed to think that Gil would somehow force the doctor to do more/tell them more...eye roll!

Out of curiosity I read up on that not-epilepsy seizure that's related to possible trauma. I had never heard of that before. 

If that was what she has, I wonder how they would deal with it since the treatment is therapy. And I wonder if they would even accept such a diagnosis.

 

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14 minutes ago, WatchingTheTireFireBurn said:

I think taking dad along can be very comforting no matter how useless he is the rest of the time. 

That they seemed to think that Gil would somehow force the doctor to do more/tell them more...eye roll!

Out of curiosity I read up on that not-epilepsy seizure that's related to possible trauma. I had never heard of that before. 

If that was what she has, I wonder how they would deal with it since the treatment is therapy. And I wonder if they would even accept such a diagnosis.

 

Yes to the bolded part - that was what rubbed me the wrong way, too. But I’m glad he at least went to support her. I think it doesn’t matter how old you are, sometimes you just need the comfort of having one of your parents there. I’m a healthcare professional and went to the hospital on my own at the end of my pregnancy when things started going awry. But when the poop quickly started hitting the fan and my husband was also incapacitated due to medical issues and unable to be with me, boy did I appreciate having my mom there in the days leading up to the delivery and on the day of the delivery (and I never would have thought I’d be comfortable with her in the delivery room). 

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1 hour ago, WatchingTheTireFireBurn said:

I think taking dad along can be very comforting no matter how useless he is the rest of the time. 

That they seemed to think that Gil would somehow force the doctor to do more/tell them more...eye roll!

Out of curiosity I read up on that not-epilepsy seizure that's related to possible trauma. I had never heard of that before. 

If that was what she has, I wonder how they would deal with it since the treatment is therapy. And I wonder if they would even accept such a diagnosis.

 

Doctors do often react differently with men/older people than they do young women. It could be that Carlin felt her voice wasn't being heard and that her father might be able to help, especially if he is closer in age to the doctor. Should that be the case? No. But my experience is that doctor's are more inclined to listen to my husband than me. Yes, Carlin has Evan, but he is also fairly young. 

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On 9/21/2022 at 8:35 PM, Keys said:

I interpreted that kind of weird… like, he thought by him going, it was going to pressure the doctors to give them more answers? I guess at least he showed up to help them?

I think it’s smart. It may suck, but we all live in a patriarchal society. Men are listened to and respected more. Carlin is a pretty young woman. She is -unfortunately- going to get less respect than a man.  She has a husband who seems extremely loving and competent - but he’s very young. He will get half the respect bringing in a 50 something year old man will. Middle aged, middle class (and bonus points for being  white) man is top of the heap when it comes to getting respect from medical professionals and mechanics. Should it be that way? No, of course not. But it IS that way, most of the time. 

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Yeah I get the patriarchy.

But at the same time there's probably a set of standard tests the cardiologists go through step by step to rule things out. The Stewart's are consistently reporting  her tests are coming out normal.

The implication- that the cardiologist/any of these Dr's is not running necessary routine tests unless Gil tells them too? That's a major eyeroll from me.

I work in an allied health field. Some people seem to think there's like secret info or that their health issue is particularly unique.

It is unique to them but I see the exact same things over and overy and over. I do my standard rota of tests and get not surprising to me results 95% of the time.  

I think the Stewart's are doing a good job of getting around to specialists and working the process.. Unfortunately the process can be long....and I increasingly think they're not going to like the answer... which I suspect is going to lead to more doctors and more specialists looking for the one that will give them an answer they like better.  

but we'll see what they do. I'm shamlessly nosey about it because they put it out there!

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2 hours ago, WatchingTheTireFireBurn said:

Yeah I get the patriarchy.

But at the same time there's probably a set of standard tests the cardiologists go through step by step to rule things out. The Stewart's are consistently reporting  her tests are coming out normal.

The implication- that the cardiologist/any of these Dr's is not running necessary routine tests unless Gil tells them too? That's a major eyeroll from me.

I work in an allied health field. Some people seem to think there's like secret info or that their health issue is particularly unique.

It is unique to them but I see the exact same things over and overy and over. I do my standard rota of tests and get not surprising to me results 95% of the time.  

I think the Stewart's are doing a good job of getting around to specialists and working the process.. Unfortunately the process can be long....and I increasingly think they're not going to like the answer... which I suspect is going to lead to more doctors and more specialists looking for the one that will give them an answer they like better.  

but we'll see what they do. I'm shamlessly nosey about it because they put it out there!

  This is all likely true, but if they ultimately get an answer they don’t like, then having included Gil in some of the appointments will turn out to be helpful.  People will say, “These two kids got flimflammed by the doctors. Medical people just want to go the easy route and tell her she needs to see an undoubtedly atheist psychiatrist. Bet there are more tests they can run.” Some people will say this anyway, but if Gil is involved, they will at least not blame the situation on Carlin and her husband mishandling things.

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5 hours ago, WatchingTheTireFireBurn said:

Yeah I get the patriarchy.

But at the same time there's probably a set of standard tests the cardiologists go through step by step to rule things out. The Stewart's are consistently reporting  her tests are coming out normal.

The implication- that the cardiologist/any of these Dr's is not running necessary routine tests unless Gil tells them too? That's a major eyeroll from me.

I work in an allied health field. Some people seem to think there's like secret info or that their health issue is particularly unique.

It is unique to them but I see the exact same things over and overy and over. I do my standard rota of tests and get not surprising to me results 95% of the time.  

I think the Stewart's are doing a good job of getting around to specialists and working the process.. Unfortunately the process can be long....and I increasingly think they're not going to like the answer... which I suspect is going to lead to more doctors and more specialists looking for the one that will give them an answer they like better.  

but we'll see what they do. I'm shamlessly nosey about it because they put it out there!

I have seen this happen. When I had leukemia, my first doctor did not run an arguably standard test (just a blood test, CBC), because I was female, they did not believe my self-reporting of symptoms and (I quote) “well, you must be under a lot of stress. Come back after your dissertation.” Ideally, it would not be necessary, but I have seen the difference it makes when I bring my (admittedly big and confident-looking) male partner to appointments. Even mentioning that he told me to come in makes a difference in how seriously I am being taken. 

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Some doctors are just asses too. I had one tell me my severe obvious bronchitis that had developed over the past 1-2 weeks was actually a long term dog allergy and had absolutely nothing to say when I asked how it was I had dogs all my life but had only developed these severe "dog allergies" after getting sick.

It's always good to have an advocate with you.

But anyway...

 

I hope they don't suddenly clam up if it turns out to be the psychiatric seizure one. I really want to know how they would handle it if so. Will they pray it away? Will they follow doctor advice? Very curious.

I hate hearing Carlin saying over and over if she doesn't have an episode for 2 days she thinks it's suddenly stopped. Such denial. 

I have to think at least one of the Drs has suggested the possible psychological cause. But they've never mentioned it despite blogging every dull minute of their lives. 

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Don't they believe that psych issues can be prayed away? Maybe that's why they've never publicly addressed this possibility. 

That they never scheduled her 5 day EEG is also worrisome. They knew months ago that this had to be done and that it would be months before it could be addressed. Now they're looking at maybe November before she can get the test done. And Evan doesn't seem to realize that Cleveland or Mayo will want this test run before they see her. He acts like they can waltz right in to either facility and get answers. From what I 've heard from someone who works at Cleveland Clinic, they won't even look at her unless the preliminary tests are run. 

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On 9/22/2022 at 5:17 PM, neuroticcat said:

Right? I have to think he was going to be supportive, but the phrasing was for sure like: now that my dad's involved we'll get some answers. 

Like he is anymore intelligent than them to be able to decipher what is going on...

What can he possible contribute other than a comforting shoulder or perhaps a level head that can listen and take things in better to help explain things they heard but were to overwhelmed to comprehend at the time. Either thing is doubtful other than the comforting shoulder. 

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If only they had someone in the family with medical knowledge, who might be able to keep a more level head, ask questions, remember answers. Who is older. 
They even gave her a male name FFS! But the old penis will get better results 🤦‍♀️

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4 hours ago, marmalade said:

Don't they believe that psych issues can be prayed away? Maybe that's why they've never publicly addressed this possibility. 

Yes, they do. Before Carlin started having episodes she was experiencing what sounded like postpartum depression and anxiety. She'd post on Instagram about things like not being able to get out of bed for a day.

Her solution was always praying about it.

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On 9/25/2022 at 6:26 AM, CanadianMamam said:

Doctors do often react differently with men/older people than they do young women. It could be that Carlin felt her voice wasn't being heard and that her father might be able to help, especially if he is closer in age to the doctor. Should that be the case? No. But my experience is that doctor's are more inclined to listen to my husband than me. Yes, Carlin has Evan, but he is also fairly young. 

Exactly this. Both are young and it seems some doctors brush you away or just ignore your questions when they at least make an effort to explain why this and that is not the right way to proceed when confronted with mature men. They also sometimes explain things more in depth to them. Just his presence or him asking some of the things they wanted to know might have helped. I will say though- if a doctor acts like that you should try to get another one. Some are really really shitty and I say this as someone who is supportive of traditional medicine and doctors and all. 
Disclaimer: have just discovered my grandmothers urologist treated for an reoccurring bladder infection for a year with no real improvement. Quite the opposite and basically said she just had to live like that now- end of story she had a MASSIVE vaginitis. And yes he is no gynaecologist but please it’s not as if he hadn’t seen her with his eyes. He could have transferred her when he realised his treatment didn’t work. If you have older grandmothers from the generation where you wouldn’t see a gynaecologist regularly- please find some nice and put them in touch. She suffered for a year completely unnecessary. Thankfully she is better now. But the pain she has been in. Unbelievable.

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On 9/25/2022 at 3:53 PM, WatchingTheTireFireBurn said:

Yeah I get the patriarchy.

But at the same time there's probably a set of standard tests the cardiologists go through step by step to rule things out. The Stewart's are consistently reporting  her tests are coming out normal.

The implication- that the cardiologist/any of these Dr's is not running necessary routine tests unless Gil tells them too? That's a major eyeroll from me.

I work in an allied health field. Some people seem to think there's like secret info or that their health issue is particularly unique.

It is unique to them but I see the exact same things over and overy and over. I do my standard rota of tests and get not surprising to me results 95% of the time.  

I think the Stewart's are doing a good job of getting around to specialists and working the process.. Unfortunately the process can be long....and I increasingly think they're not going to like the answer... which I suspect is going to lead to more doctors and more specialists looking for the one that will give them an answer they like better.  

but we'll see what they do. I'm shamlessly nosey about it because they put it out there!

I think so too. I also work in health care The more negative resulta they tell us about, the more I'm guessing someone have already mentioned it to them. They obviously have some episodes/seizures on video as well, which might help enormously with the differential. 

If it ends up being even partialy PNES, she has a long road ahead of her. Both to accept, understand and get treatment, and to get others around her to support her (that can be hard even for secular/more openminded people).

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I love to hate on the Bates, but I really feel for them in this situation. I am reading comments like "they should know about wait times at Mayo" and other stuff they "should" know. These are literal children. Yes, they are in their 20s, but they both lived extremely sheltered lives, with very little interaction with the medical field unless it was to do with their mom birthing another child. It doesn't seem like either of them have family members with any kind of chronic illness or medical issue, either. I was raised in a household that feared and distrusted the medical system and literally didn't have my first "check up" until well into my late 20s. I was told that most problems were due to my emotions, not trusting God, or diet. I'm sure there is a LOT of brushing things under the rug that happened in the Bate's household, which has lead to a hesitance with really pushing to figure out what is wrong here until these last few months. 

Personally I've been dealing with about 3-4 years of unknown origin chronic pain and other symptoms, and it is just a total shit show to get it figured out or diagnosed. I get bumped around from doctor to doctor, and it IS really hard to speak up for yourself and make sure that the doctor listens and takes your experience seriously, especially as a woman. I get steamrolled over in appointments constantly, or a Doctor will say we are out of time when I still have 5 questions left. "oh send me a message on the portal" and then it never gets answered, etc.  I would 100% want my mom or dad there to advocate for me if that was a possibility for me. Sometimes parents just think about different things to ask, or they phrase things in different ways. Sometimes doctors respect elders more, it sucks to say that but it's true in some more "traditional" societies (like the South). 

There's probably a lot of things they "should" be doing, but it gets exhausting. I frequently just give up on finding answers/specialists for 2-3 months at a time, because it's emotionally and mentally exhausting. The time spent on the phone with offices, health insurance, figuring out schedules for visits, plus the cost. Driving around the state to different specialists. Taking days off work only to sit in a doctors office for 3 hours because they are running behind, etc. Yeah, it all really sucks. I can't imagine doing it with two small kids. Thankfully they are in a privileged position with family and their work being flexible. But yeah, I hate their beliefs and lifestyle and pretty much everything else about them, but this situation isn't something I'd wish on anyone. 

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On 9/25/2022 at 3:13 PM, WatchingTheTireFireBurn said:

I have to think at least one of the Drs has suggested the possible psychological cause. But they've never mentioned it despite blogging every dull minute of their lives. 

Now I wonder if this is the reason they asked Gil to accompany them. Either that or they told her parents a dr. mentioned that possible cause of her seizures and Gil needs to go set the dr. straight.

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22 minutes ago, Bobology said:

Now I wonder if this is the reason they asked Gil to accompany them. Either that or they told her parents a dr. mentioned that possible cause of her seizures and Gil needs to go set the dr. straight.

I'm just a bystander and of course don't really know 

 

But this is what I think. They've been told that these tests are ruling out X Y Z . It seems incredibly likely to me it was asked and/or they were told the possibilities and what seemed likely. I think they told daddy "the Dr's think it's all in my head!" And here comes Gil.

 

Because seriously...Gil does not seem to have been involved up to now. When they needed help they called Evan's family-repeatedly. Obviously when it comes to trust and feeling cared for they go to Evans family. 

What's Gil's role?? Seems to me he's the authoritarian, the "don't let them push you around," "look here I've seen a thing or two buddy and I'm here to tell you...." person.

Dare I say it...the "Karen" of the family who will go complain? And demand "fair" treatment.

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Or they are sick and tired of telling him what the doctors think and want HIM to hear it straight from the source so he and Kelly finally accept it is “in her head and very much real” 

It is possible that I am projecting here, but I recently had a medical issue and I am not sure my partner would have trusted that I asked all relevant questions if he hadn’t spoken with the neurologist himself. 🤦‍♀️ 

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