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


nelliebelle1197
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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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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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