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


nelliebelle1197
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4 hours ago, JermajestyDuggar said:

You are much more patient than me. Our cat has to stay in the basement all night because he wakes us all up with his need for snuggles, 3am zoomies, and loud meows. Our kitty is such an attention whore. We really should have named him Lawson. 

I see your kitty and up the ante to 2 Golden Retrievers and a sleep apnea machine.

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5 hours ago, JermajestyDuggar said:

You are much more patient than me. Our cat has to stay in the basement all night because he wakes us all up with his need for snuggles, 3am zoomies, and loud meows. Our kitty is such an attention whore. We really should have named him Lawson. 

I start every night with 3 felines on my bed. Panther, my son's enormous mutant cat will not move from wherever he has stretched out. I have to go around him. Luke will lay in one spot until I lay down, then he's got to be right next to me (sometimes he misses and I get a face full of cat) and Leia will usually find a way to lay ON me. They sort themselves out during the night but I usually wake up with at least one of them staring at me. I think they hate my alarm more than I do. Right now, Luke is curled into a ball on my bed, Leia is probably under my bed and Panther is complaining that I won't let him outside. 

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We sleep regularly with a dog and cat on our bed. Our older cat will sneak in after we fall asleep, and sneak out before we wake up. However, if we wake up in the middle of the night, he’s there too 😂

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I must be behind. Their latest YouTube, Evan introduced his family. His mom and dad, who look pretty good and have an interesting "how-we-met" story. 4 sisters and one brother. 2 sisters are single, 2 are married, the oldest niece appears to be a teenager. His brother got married I think last year, or maybe 2 years ago. It was after Carlin and Evan got Covid, and they weren't social distancing between them anymore. 5 nieces and 2 nephews. Does anyone know if the single sisters still live at home, or if they get to live on their own?

   Anyway, fun video, and Carlin seems to do well in that setting. Still no solid answers.

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Sometimes I just can't with these people, or maybe kids is the more accurate term. Who frickin thinks it's cute to post a video of their kid pooping in their diaper under the coffee table?? WTAF Carlin, really WTF??  Poor Layla, I feel so bad for how some of the grandkids are being used on Instagram.🤨👎🏽 Asking people for suggestions on potty training is one thing, but come on, grrrr.....

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New video today 

1/2 Layla being absolutely adorable.

1/2 was a veeerrrrryyyyy long drawn out health update with no real new info.

She's on a new 2nd medication that's made it so she feels the episodes coming on. So it's "safer" since she won't just fall over anymore.

Mayo clinic consult over phone. Mayo says to do some more tests there's no sense in moving to do tests that can be done in TN.

Sounds like the test wanted is the in hospital 5 day test previously mentioned. 

Carlin said Dr. Was interested to hear about her meningitis from after layla's birth (but that would have been in records Dr sent to Mayo. So doubt it was new info to Mayo dr.)

 

Evan said since the "epilepsy medicine" is working therefore it must be a neurological issue.

Which made me guffaw heartily.

Carlin said maybe it's not the medicine but she's  healing on her own.

Carlin seems very vested in the idea this will magically go away on its own.

 

 

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13 minutes ago, WatchingTheTireFireBurn said:

Evan said since the "epilepsy medicine" is working therefore it must be a neurological issue.

Which made me guffaw heartily.

Carlin said maybe it's not the medicine but she's  healing on her own.

Carlin seems very vested in the idea this will magically go away on its own.

Is this like me saying I don’t have life-altering anxiety…leaving off the fact that I’m on a med for anxiety so I can get off my anxiety meds because my anxiety’s getting better?? I can’t with these people!

Edited by Giraffe
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14 minutes ago, JermajestyDuggar said:

These people are raised to believe god is their magic genie who will grant their every prayer. 

That was mentioned as well.

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It was a very weird meningitis she had, it would be interesting if it turns out it was an early sign of her current dissorder. Both times after she gave birth too. They said it could be some type of migraines.

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26 minutes ago, llucie said:

It was a very weird meningitis she had, it would be interesting if it turns out it was an early sign of her current dissorder. Both times after she gave birth too. They said it could be some type of migraines.

I really have wondered this entire time if it had something to do with that weird meningitis diagnosis. It was like her first epidural started this whole thing for her. I am hoping someone can get to the bottom of it for her. She really seems to lean into the whole "God can heal me at any time" thing. I was glad Evan said he didn't think it was a coincidence with the timing of the medicine when she said that. 

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8 hours ago, WatchingTheTireFireBurn said:

New video today 

1/2 Layla being absolutely adorable.

1/2 was a veeerrrrryyyyy long drawn out health update with no real new info.

She's on a new 2nd medication that's made it so she feels the episodes coming on. So it's "safer" since she won't just fall over anymore.

Mayo clinic consult over phone. Mayo says to do some more tests there's no sense in moving to do tests that can be done in TN.

Sounds like the test wanted is the in hospital 5 day test previously mentioned. 

Carlin said Dr. Was interested to hear about her meningitis from after layla's birth (but that would have been in records Dr sent to Mayo. So doubt it was new info to Mayo dr.)

 

Evan said since the "epilepsy medicine" is working therefore it must be a neurological issue.

Which made me guffaw heartily.

Carlin said maybe it's not the medicine but she's  healing on her own.

Carlin seems very vested in the idea this will magically go away on its own.

 

 

Definitely not trying to WK Carlin, but I had meningitis after a pregnancy, which is  documented in my health records, and I still to this day (almost 15 years later) have doctors fan girl over it. Is meningitis rare? I obviously survived it, but at the time the hospital just sent me on my merry way after I recovered. Figured it was no big deal, except for other doctors finding it fascinating during checkups. So while it was most likely documented in her health history, I also believe Mayo was interested to hear about it. 

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1 hour ago, Bazinga said:

Definitely not trying to WK Carlin, but I had meningitis after a pregnancy, which is  documented in my health records, and I still to this day (almost 15 years later) have doctors fan girl over it. Is meningitis rare? I obviously survived it, but at the time the hospital just sent me on my merry way after I recovered. Figured it was no big deal, except for other doctors finding it fascinating during checkups. So while it was most likely documented in her health history, I also believe Mayo was interested to hear about it. 

It IS rare, yes. Like not totally uncommon, but not something we see very often. And much more common in babes and young kids, or immunocompromised adults, compared to young healthy adults. A huge reason we don’t see it as often anymore is thanks to vaccines - here, vaccination for the most common strains of bacteria that cause meningitis is part of our routine vaccination schedule. Meningitis can also be viral, which is less common, and many of the bugs that cause viral meningitis are not ones we have vaccines for yet. I believe Carlin had aseptic meningitis (meaning no bacteria was cultured from her samples - this usually means it’s likely viral). 
 

Edited to add that I’m not sure how soon after birth Carlin developed meningitis, but there is a very small risk of meningitis from having an epidural (thankfully almost unheard of with sterility standards in developed countries, and most cases are bacterial when it does happen). And of course, it could also have been totally unrelated. 

Edited by Keys
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30 minutes ago, Keys said:

It IS rare, yes. Like not totally uncommon, but not something we see very often. And much more common in babes and young kids, or immunocompromised adults, compared to young healthy adults. A huge reason we don’t see it as often anymore is thanks to vaccines - here, vaccination for the most common strains of bacteria that cause meningitis is part of our routine vaccination schedule. Meningitis can also be viral, which is less common, and many of the bugs that cause viral meningitis are not ones we have vaccines for yet. I believe Carlin had aseptic meningitis (meaning no bacteria was cultured from her samples - this usually means it’s likely viral). 
 

Edited to add that I’m not sure how soon after birth Carlin developed meningitis, but there is a very small risk of meningitis from having an epidural (thankfully almost unheard of with sterility standards in developed countries, and most cases are bacterial when it does happen). And of course, it could also have been totally unrelated. 

They said it was either 2 or 3 weeks after her birth.

I think they said she had a viral meningitis which is less severe vs bacterial.

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8 minutes ago, WatchingTheTireFireBurn said:

They said it was either 2 or 3 weeks after her birth.

I think they said she had a viral meningitis which is less severe vs bacterial.

Ooh ok, I’m not an anesthesia expert but I presume that might be too far out to have been associated with the epidural, then. And yes, the treatment for viral meningitis is what we call “supportive”, aka just treating symptoms until it runs its course. Bacterial usually progresses much faster and tends to be more severe for sure (thankful for our vaccines!). 

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I've been off reading about migraines and seizures because I didn't know there were connections. Very interesting. Seems migraines can be associated with all sorts of types of mini seizures that only affect a smaller area of the body (connected to where the electrical activity in brain went wrong, rather like how a stroke can affect just certain parts based on where it is)

But the articles consistently led me off to other descriptions of seizures more like the video we've seen of Carlin. Under the headings of other reasons you might have seizures /pnes. Which also mentioned that the definitive test once everything else was ruled out was the in hospital video eeg. 

 

It's a fascinating road of "new things that might go wrong" to travel down.

 

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I think migraines and seizures are so individual that it can be hard to identify them. We have a pediatric neurologist in our town who is very good. With various children I sent to him for further diagnosis I learned so much about seizures. And I have migraines myself. They changed a lot over the last 20 years. Now there are times when I only get the side effects without the aura or the massive headache or the warning pre-symptoms. Which means that I sometimes only realize that I have/had a migraine when I come home and my husband realizes I am weird. Which sucks. A couple of years ago, after a phase of 8 years without any migraine, I went to the doctor because I thought I had carpal tunnel syndrome because my left hand tickeled nearly daily. Nope, my migraine sneaked back in through the back door and hid herself very effective. I was glad my neurologist ruled everything else out, like brain tumor, ms or a stroke. But I felt kind of stupid. 

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Anybody know this:

Insurance? If you decide you want to go to Mayo clinic....does insurance pay for that? I'm sure that there's different types and all.

I'm trying to figure out how they got a mayo phone consult. Because they didn't finish all tests with local doctor (5 day in hosp eeg)

And mayo said yep you need to get that done before we go further and you can do it locally.

So why did mayo even take them as a consult???

I feel like my insurance wouldn't pay for mayo period. But even if they did they'd require me to fully exhaust all options and complete all testing locally before that step would be considered. 

I wonder if Evan was just Gung ho and demanded a mayo consult with pay out of pocket.

Evan said the mayo doctor gave him (Evan) his (dr) personal phone number to ask questions.

I feel like that's a "oh you paid a lotta money for this consult so yes you can have this # to call me direct" type situation.

But I don't know. I avoid doctors.  Do any of you know how this might have come about? 

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1 hour ago, WatchingTheTireFireBurn said:

Anybody know this:

Insurance? If you decide you want to go to Mayo clinic....does insurance pay for that? I'm sure that there's different types and all.

I'm trying to figure out how they got a mayo phone consult. Because they didn't finish all tests with local doctor (5 day in hosp eeg)

And mayo said yep you need to get that done before we go further and you can do it locally.

So why did mayo even take them as a consult???

I feel like my insurance wouldn't pay for mayo period. But even if they did they'd require me to fully exhaust all options and complete all testing locally before that step would be considered. 

I wonder if Evan was just Gung ho and demanded a mayo consult with pay out of pocket.

Evan said the mayo doctor gave him (Evan) his (dr) personal phone number to ask questions.

I feel like that's a "oh you paid a lotta money for this consult so yes you can have this # to call me direct" type situation.

But I don't know. I avoid doctors.  Do any of you know how this might have come about? 

Yes to different insurances allowing different things. My insurance allows me to self refer, even out of network (though it would be quite expensive to go out of network and would be a last resort). While most doctors in my area haven't had an issue with me self referring, I have heard of specialists still wanting referrals (whether that is true or not I'm not sure as I haven't been in that situation yet). I'm surprised Mayo was just cool with it, given how in demand they are, but I've been surprised before.

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3 minutes ago, Bazinga said:

Yes to different insurances allowing different things. My insurance allows me to self refer, even out of network (though it would be quite expensive to go out of network and would be a last resort). While most doctors in my area haven't had an issue with me self referring, I have heard of specialists still wanting referrals (whether that is true or not I'm not sure as I haven't been in that situation yet). I'm surprised Mayo was just cool with it, given how in demand they are, but I've been surprised before.

That’s so interesting… in Canada, there’s no such thing as self-referral to specialists (except for pay-out-of-pocket things like cosmetic procedures from a dermatologist or plastic surgeon). You need to have a referral from another physician, usually your family doctor. Family doctors can do a work-up and try to treat an issue before referring to a specialist, which is reserved for more complex cases and things that are outside the scope of a family physician (surgeries etc). Prevents people from going to a specialist for something that is easily treated by a family physician, or going to the wrong specialist (for example, something like abdominal pain has a wide differential diagnosis and is not always GI-related; might be more gynaecologic, urologic, vascular, psych, even cardiac). 

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10 hours ago, Keys said:

It IS rare, yes. Like not totally uncommon, but not something we see very often. And much more common in babes and young kids, or immunocompromised adults, compared to young healthy adults. A huge reason we don’t see it as often anymore is thanks to vaccines - here, vaccination for the most common strains of bacteria that cause meningitis is part of our routine vaccination schedule. Meningitis can also be viral, which is less common, and many of the bugs that cause viral meningitis are not ones we have vaccines for yet. I believe Carlin had aseptic meningitis (meaning no bacteria was cultured from her samples - this usually means it’s likely viral). 
 

Edited to add that I’m not sure how soon after birth Carlin developed meningitis, but there is a very small risk of meningitis from having an epidural (thankfully almost unheard of with sterility standards in developed countries, and most cases are bacterial when it does happen). And of course, it could also have been totally unrelated. 

That you for explaining! Mine was viral as well. I unfortunately was pre-meningitis vaccine (at least I'm pretty sure I never saw it on my vaccine forms). Glad this isn't the case for my children.

2 minutes ago, Keys said:

That’s so interesting… in Canada, there’s no such thing as self-referral to specialists (except for pay-out-of-pocket things like cosmetic procedures from a dermatologist or plastic surgeon). You need to have a referral from another physician, usually your family doctor. Family doctors can do a work-up and try to treat an issue before referring to a specialist, which is reserved for more complex cases and things that are outside the scope of a family physician (surgeries etc). Prevents people from going to a specialist for something that is easily treated by a family physician, or going to the wrong specialist (for example, something like abdominal pain has a wide differential diagnosis and is not always GI-related; might be more gynaecologic, urologic, vascular, psych, even cardiac). 

Just so I'm not being confusing, that is definitely how many insurances in the US are too. They require a doctor referral. However, there are also insurances, like mine, who don't require it. 

I'm curious what type of insurance Carlin even has? I just assume all fundies use the medical cost sharing insurance. Her husband's job (is he even still there though?) probably offers insurance I would assume, so who knows. Would Mayo accept a self referral from a medical cost sharing insurance.....I really don't know. 

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I would have thought Mayo only takes cases that have already been run through by the local Dr's.

Unless they paid out of pocket prices? 

The more I thought about it the more odd it was that they even talked to Mayo.

The basic differential for epilepsy and pnes needs that 5 day test if everything else is inconclusive.  

They told us that cardiac issues were ruled out (the visit Gil came along to get answers).

Evan seems to think they might get the test faster through Mayo. I suppose it can be if you have money to throw at the problem. And maybe they do.

I expect they have normal insurance. Evan's family seems more on the normal continuum and they seem to follow Evan's family's lifestyle.

I've gone totally down the rabbit hole on epilepsy vs pnes. I think they're going all out to avoid a pnes dx.

I mean ok sure maybe she has a zebra disease (meaning the rare disease or very unusual presentation of a disease)....but she checks off soooooo many boxes for pnes on the differential dx charts. If I can see that connection then I'm sure the numerous medical professionals know about it. 

 

Im fascinated where this will go. How many specialists will they enlist? Will they "move to florida" to continue tests? (Why would they when you can drive to.FL fairly easily from TN and you have no set 9-5 jobs? The Drama!)

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4 hours ago, WatchingTheTireFireBurn said:

Evan said the mayo doctor gave him (Evan) his (dr) personal phone number to ask questions.

When David had his TP/AIT, I had a list of personal phone numbers for his doctors. His surgeons, his endo, the entire aftercare team. 

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8 hours ago, WatchingTheTireFireBurn said:

 

Evan said the mayo doctor gave him (Evan) his (dr) personal phone number to ask questions.

 

Just to clarify, it is the Knoxville local neurologist that Evan has their cell phone. He has mentioned several times texting the doc about specific seizures and med questions. 

6 hours ago, Bazinga said:

I'm curious what type of insurance Carlin even has?

I assumed they had insurance through Evan's union when he was an electrician. He had to leave the job after his FMLA ran out. I assume they are either on Cobra (which is INSANELY expensive!!) or moved on to some type of private insurance. I wouldn't assume the boutique has insurance for their employees. 

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Was Evan working as an independent, licensed electrician? I thought he had an apprenticeship while  completing his education. I’m unsure if passing license exams was part of that process. This conversation about Evan having a 9-5 paying job with HCB interests me. I’m not sure all of that exactly came to fruition before Zade’s birth or Carlin’s health issues necessitating Evan opting out of the trade.

I think that the Stewarts likely participate in a Christian ministry health sharing plan. 

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