CarVan 14: The Abeka Boxes Have Started to Arrive

[rebeccawriter01]

37 minutes ago, gobucks said:

I cannot imagine the hospital policy would let 2 grown adults stay with a grown adult for 5 days. Kelly was probably just visiting. Evan might have stayed. 

I am going to assume Evan stayed because Carlin tends to be co-dependent. When I had my multi-day EEG they didn't allow overnight visitors. It was a very controlled environment in terms of screen time, sleep, food and drink, etc. so they could isolate triggers to what was happening to me. For example one day coffee was allowed and another day it wasn't. If they limited her screen time, she might not survive the test.

My main memory was me going off on the doctor for a situation he misinterpreted. I was sleepy and fatigued from not being allowed to sleep at that point in the test. The machines picked up on slow/long wave patterns. He came in all angry and said, "I thought we told you no sleep and clearly you went to sleep." I had not gone to sleep. But I do remember feeling very far away from my body for a moment. I told him that and he insisted I had been sleeping. I asked him to pull the video and see. Sure enough, I had not closed my eyes or slept. At the exact moment there was an abnormality I was doing a crossword puzzle, sitting up, and paused. Apparently I was having absence seizures and nobody picked up on it until then. I just remember being so angry with him because he didn't want to believe I wasn't sleeping. 

[Keys]

In our hospital, visitors aren’t allowed to stay beyond visiting hours for stable adult patients. Exceptions of course if someone is actively dying, a child or baby, or another very specific situation that would necessitate the caregiver being there with them overnight. So I’m really surprised Evan would be allowed to stay overnight.

[CarrotCake]

Looks like their friend Caitlin took care of the kids.

[llucie]

She didnt have an episode while on the test despite the doctors trying to induce it with lights and sleep deprivation. Her doctor has told them that it pretty much means she doesnt have epilepsy. Since that has been ruled out they will exploring other conditions now (she said something about sugar i think).

She said she felt relieved that she doesnt have it and will not need to take medication for life so i asume that means she will stop the medication now. Its weird because it aparently was working, she was doing so much better on the meds, you have to wonder if it was just placebo effect. I wonder what will happen if she stops it.

She did say she still cant drive until its 6 months without passing out.

[gobucks]

You absolutely can have epilepsy and never catch one on an EEG. 

[WatchingTheTireFireBurn]

Caveat that it's totally armchair diagnosing with imperfect information. But a lot of people in various corners of the internet have talked about how her symptoms and the videos did not show typical epilepsy type seizures. I don't remember all the details now but when this first started and Evan put so many videos online people noted the various ways her body moved, how the  shaking happened, her reaction after, which parts and side were having the shaking/clenching, etc. etc. were not consistent with epilepsy. I went deep down the differential diagnosis myself (because I like that sort of thing) and there are several options that do match much better with her situation as far as we know from Evan's rather detailed videos and synopses.  Evan has always rather conveniently never gone into much detail about what options the doctors were looking at. So I doubt we'll ever know (Although my person opinion is they don't like the options presented). Which is fine if you want your medical situation to be private, but it's disingenuous when you're using her health as a money maker.

[gobucks]

My personal opinion is that her first epidural with Layla was botched. She ended up back in the hospital with "meningitis" during her postpartum recovery time. It seemed to get worse after the epidural with Zade. Some kind of spinal fluid issue. I have zero background in medicine but I would be interested in what Mayo or Cleveland Clinic had to say when you really start with this postpartum meningitis and go through her symptoms. 

 

Would the cardiologist appointments she had and treadmill tests clear her for POTS?

Edited October 7, 2023 by gobucks

[marmalade]

Heart issues were ruled out several months ago. 

[WatchingTheTireFireBurn]

They consulted with Mayo, who advised them to complete this in hospital test....some time ago.

[gobucks]

2 hours ago, WatchingTheTireFireBurn said:

They consulted with Mayo, who advised them to complete this in hospital test....some time ago.

Yes, exactly. Now I want to know what they would think now that the test didn't show anything.

[rebeccawriter01]

1 minute ago, gobucks said:

Yes, exactly. Now I want to know what they would think now that the test didn't show anything.

This is reading between the lines. Mayo was consulted but it wasn't as though she received any testing or treatment through them. I don't believe they even traveled to Mayo but did a phone/video consult where they basically were told that the neurologist was doing the right things and to follow up with the testing he was suggesting. That's not a horrible thing, but she wasn't ever getting diagnosed by them.

If the doctor does not believe it to be epilepsy, there are a few different ways it could go. 1. They may take a look at her diet. She could be told to do an elimination diet. Each week to two weeks she would cut out something to see if that made a difference. I learned that artificial caramel sauce was a trigger for me. 2. If she hasn't already, she could be referred to vascular. Some people have convulsive syncope that can be caused by an abnormality in the artery in your neck (or other things). This can also be called carotid sinus syncope. 3. She could be evaluated by psych for what is called situational syncope. This is normally brought on by intense emotional stress, dehydration, fear, pain, anxiety, etc. 4. They may consider that it is Postural orthostatic tachycardia syndrome (POTS). 5. Or her doctor(s) may call it a day and say that her syncope/shaking are idiopathic in nature and do not pose a threat.  

I don't think that the doctor is going to go with sending her file to Mayo again. 

[marmalade]

19 minutes ago, gobucks said:

Yes, exactly. Now I want to know what they would think now that the test didn't show anything.

According to someone who watched the video, Carlin is relieved that she won't have to take the meds for the rest of her life. It can be inferred that she's quitting them now. Still can't drive until it's 6 months after her last episode.

eta: It sounds like they're going to try the elimination diet. She mentioned sugar, but I don't know the context for certain.

Edited October 8, 2023 by marmalade

[llucie]

7 hours ago, marmalade said:

According to someone who watched the video, Carlin is relieved that she won't have to take the meds for the rest of her life. It can be inferred that she's quitting them now. Still can't drive until it's 6 months after her last episode.

eta: It sounds like they're going to try the elimination diet. She mentioned sugar, but I don't know the context for certain.

They were extremely vague about that and what are the diagnosis currently on the table. But she was pretty clear that the doctor dont think its epylepsy. I guess if they stop the medication and she starts getting worse again they would re-think that though.

13 hours ago, gobucks said:

My personal opinion is that her first epidural with Layla was botched. She ended up back in the hospital with "meningitis" during her postpartum recovery time. It seemed to get worse after the epidural with Zade. Some kind of spinal fluid issue. I have zero background in medicine but I would be interested in what Mayo or Cleveland Clinic had to say when you really start with this postpartum meningitis and go through her symptoms. 

 

Would the cardiologist appointments she had and treadmill tests clear her for POTS?

And wasnt the meningitis diagnosis already kinda weird? like she kept getting negative tests for it but they still diagnosed her with it?

About POTS Katie aparently was diagnosed with that during pregnancy, so i would be surprised if Carlin has not looked into that as a possibility.

[Coconut Flan]

8 hours ago, rebeccawriter01 said:

They may consider that it is Postural orthostatic tachycardia syndrome (POTS).

Do we know how many times she's had COVID?  That's one of the potential after effects.  Does anyone know if POTS can improve with time?

I'm leaning toward some imbalance after childbirth/COVID plus poor diet and possible dehydration and an emotional component such as easily stressed or exaggerating the symtoms.  I think she had some issue and then saw how much attention it got her so kept going on about it even as it improved.

[Keys]

3 hours ago, llucie said:

They were extremely vague about that and what are the diagnosis currently on the table. But she was pretty clear that the doctor dont think its epylepsy. I guess if they stop the medication and she starts getting worse again they would re-think that though.

And wasnt the meningitis diagnosis already kinda weird? like she kept getting negative tests for it but they still diagnosed her with it?

About POTS Katie aparently was diagnosed with that during pregnancy, so i would be surprised if Carlin has not looked into that as a possibility.

She was diagnosed with aseptic meningitis, IIRC. Which means that when they did the lumbar puncture, there was no bacteria found in the sample of cerebrospinal fluid. But often this is because the patient was already started on antibiotics prior to the lumbar puncture. There are other signs that we look for in the fluid to make the diagnosis apart from just bacteria being present. So I wouldn’t classify it as a negative test per se, if that makes sense. 
 

I still wonder about PNES too. I wonder if that’s on the table/has been discussed. 

[gobucks]

12 hours ago, marmalade said:

According to someone who watched the video, Carlin is relieved that she won't have to take the meds for the rest of her life. It can be inferred that she's quitting them now. Still can't drive until it's 6 months after her last episode.

eta: It sounds like they're going to try the elimination diet. She mentioned sugar, but I don't know the context for certain.

I watched the whole video. They said that now that they have ruled out some of the big stuff such as tumors, epilepsy, etc that they will go backwards and start looking at things like blood sugar and blood pressure. The doctor also said that they can't officially rule out epilepsy on paper but they want to start looking at other things. 

Edited October 8, 2023 by gobucks

[SassyPants]

I’m betting a PG announcement will be in their near future.

[rebeccawriter01]

1 hour ago, Keys said:

I still wonder about PNES too. I wonder if that’s on the table/has been discussed. 

More than likely that is what the doctor is currently thinking. However, many doctors won't jump to that with the patient. He or she will rule out all physical things because they have to build a case with a patient like Carlin. She'd hear PNES and immediately go to the standard feelings of a doctor who doesn't believe her. I'm not saying her doctor knows her that well, only that many doctors are very careful about associating things like emotion/mental health in with physical because of how people respond. 

Most people realize or are starting to realize there is a link in emotional response, mental health, and physical symptoms. However, Carlin more than likely has no reference there and would rely on her lens being that of her parents making her go to church more and pray more when she had signs and symptoms of anxiety and depression. I think it is likely that it is something in that spectrum, but doubt that Carlin would have the mindset to address it. She would brush it off and basically say she was no longer having issues.

My guess is that the doctor will explore that more. The description of what he said via Carlin sounds a lot like something similar called cataplexy. She refers to him saying the convulsions could be her body's way of waking up her limbs. In cataplexy (frequently found with narcolepsy but not always) your body misfires and thinks you are asleep so every muscle relaxes and you fall to the floor. You can experience twitches and even full on convulsions as your body tries to figure out if you are asleep or awake. This is usually brought on by emotion (good or bad) or even sometimes by food. It is easier to rule out food things. 

24 minutes ago, SassyPants said:

I’m betting a PG announcement will be in their near future.

No doubt. If they were hesitating with her medication (they'd already asked if it was safe), this is their green light for sure.

[Keys]

1 hour ago, rebeccawriter01 said:

More than likely that is what the doctor is currently thinking. However, many doctors won't jump to that with the patient. He or she will rule out all physical things because they have to build a case with a patient like Carlin. She'd hear PNES and immediately go to the standard feelings of a doctor who doesn't believe her. I'm not saying her doctor knows her that well, only that many doctors are very careful about associating things like emotion/mental health in with physical because of how people respond. 

Most people realize or are starting to realize there is a link in emotional response, mental health, and physical symptoms. However, Carlin more than likely has no reference there and would rely on her lens being that of her parents making her go to church more and pray more when she had signs and symptoms of anxiety and depression. I think it is likely that it is something in that spectrum, but doubt that Carlin would have the mindset to address it. She would brush it off and basically say she was no longer having issues.

My guess is that the doctor will explore that more. The description of what he said via Carlin sounds a lot like something similar called cataplexy. She refers to him saying the convulsions could be her body's way of waking up her limbs. In cataplexy (frequently found with narcolepsy but not always) your body misfires and thinks you are asleep so every muscle relaxes and you fall to the floor. You can experience twitches and even full on convulsions as your body tries to figure out if you are asleep or awake. This is usually brought on by emotion (good or bad) or even sometimes by food. It is easier to rule out food things. 

No doubt. If they were hesitating with her medication (they'd already asked if it was safe), this is their green light for sure.

For sure! It’s one of those things we call a “diagnosis of exclusion”. Meaning there’s no single test for it, and we need to rule out everything else first. Another thing that falls into that category is IBS, for instance - someone could have symptoms that really sound like IBS, but we have to first make sure it’s not a cancer, a thyroid problem, a food sensitivity/allergy, an infection, etc etc first. Sometimes it’s also called a “functional” problem. Like “functional abdominal pain”. 
 

I work in healthcare, and my approach to these things is delicate for sure. I often will say something like “the mind, nerves, and body are highly connected. Sometimes things misfire in the brain or the nerves and cause physical symptoms. This can be from high stress or emotion or sometimes we don’t know why. Etc”

[gobucks]

There is a really fascinating book called "Why Zebras Don't Get Ulcers" that I have been meaning to read about the mind/gut connection. It was recommended by a polyvagal specialized psychologist. I'm sure Carlin and Evan would never try to understand these types of mind body health connections. 

[WatchingTheTireFireBurn]

Health issues are no laughing matter...and yet I had a chuckle at the idea of these two doing an elimination diet.

They seem to eat out for most of their meals and eat pre made type foods when they eat at home.  Eliminating single ingredients is very very hard unless you make your own food, and even then probably still is.

Eliminating sugar is awful. I have some health issues and I eliminated sugar and did feel better but good grief. I ultimately decided it wasn't worth it to get rid of all sugar. Miserable 6 months. And as somebody who hates cooking and is vegan, it was just impossible to maintain without massive and constant pre planning.

Maybe Evan will take up cooking. He's always worried about his weight so it would make sense to expand to cooking healthy.

[Giraffe]

11 minutes ago, WatchingTheTireFireBurn said:

Health issues are no laughing matter...and yet I had a chuckle at the idea of these two doing an elimination diet.......And as somebody who hates cooking and is vegan, it was just impossible to maintain without massive and constant pre planning.

I agree there's no way they'll do a real elimination diet. I have friends with a child with an overwhelming number of food sensitivities and food allergies (of the anaphylactic version). Their lives revolve around making safe food. Everything's from scratch to the point that they need to know the specifics of the soil things are grown in and what food their meat was fed. It's been life altering and the vigilance never stops. 

Edited October 8, 2023 by Giraffe
Clarifying

[Keys]

2 hours ago, gobucks said:

There is a really fascinating book called "Why Zebras Don't Get Ulcers" that I have been meaning to read about the mind/gut connection. It was recommended by a polyvagal specialized psychologist. I'm sure Carlin and Evan would never try to understand these types of mind body health connections. 

100%. My honours degree was in psychology before I went into healthcare, and the mind body connection is really fascinating to me. There is so much we just don’t know. Most things are very multi factorial. Like two people can have the exact same exposure and only one will develop a health effect from it. Why? So many reasons. When you’re in it, you realize how profoundly limited our knowledge actually is about why diseases develop. 

Edited October 9, 2023 by Keys

[SassyPants]

44 minutes ago, Keys said:

100%. My honours degree was in psychology before I went into healthcare, and the mind body connection is really fascinating to me. There is so much we just don’t know. Most things are very multi factorial. Like two people can have the exact same exposure and only one will develop a health effect from it. Why? So many reasons. When you’re in it, you realize how profoundly limited our knowledge actually is about why diseases develop. 

I recently was telling my husband how fascinated I was in psychology and how our minds work both in terms of intellect and mood/personality. When I was going to college in the 70s, psychology was seen as a rather fluff bachelor’s degree (meaning you would need advanced studies before you could make money) although my own course work, nursing, involved many different psych courses. I was always super interested in the subject. Unfortunately, I did not have the luxury of an advanced degree. I needed to get into the workforce as quickly as possible-

[WatchingTheTireFireBurn]

2 hours ago, Giraffe said:

I agree there's no way they'll do a real elimination diet. I have friends with a child with an overwhelming number of food sensitivities and food allergies (of the anaphylactic version). Their lives revolve around making safe food. Everything's from scratch to the point that they need to know the specifics of the soil things are grown in and what food their meat was fed. It's been life altering and the vigilance never stops. 

That sounds dreadful. Tough life.  I found I was just sensitive to carbs and sugar. So I ate hardly any carbs and no sugar for 6 months. Fortunately not an allergy just worsened autoimmune disorder. But in the end, it was just too much to deal with and limited what I could eat so much and required so much mental energy, I felt like dealing with autoimmune issues was less detrimental to my life. 

I can't imagine them doing anything other than like 1 syrup pump at Starbucks instead of 2, or buying sugar free cookies for snacks at home, stuff like that.