It's a girl!

[Jeff V]

Now, before you congratulate my ancient little swimmers for scoring yet again, it's not that kind of post.

Last Saturday, I was on my way home from fetching our dog from my nephews when my wife called to tell me her friend was taken to the hospital with seizures. We had to go pick up her now 5 year old daughter (odometer clicked today) and my wife spent several hours at he hospital watching her pretty much go completely out of her mind. Then she worked 3 shifts in 48 hours and I was left to care for the bonus kid. Between the girl and my two kids they have the ability to bring out the absolute worst in each other and she has a meltdown every evening at bed time.

The mom was transferred to Rush University (from a satellite hospital) and placed into an induced coma. Almost 6 days later, there is still no diagnosis and doctors are just throwing out blind treatments that haven't been effective. Currently, the suspect is a auto-immune induced encephalitis. The symptoms match, but what we've found so far indicates recovery to be anywhere from 3 months to never. This is just the most recent theory though, still no official diagnosis.

Her sister-in-law started a gofundme. She did not work (just recently became a citizen) and he is a contractor working for the government (Fermilab) and likely doesn't have the best of healthcare plans. Any help will be gratefully appreciated.

And if anyone cares to help me personally deal with my kids +1, come on over anytime and bring beer.

[Daehawk]

Bad enough when you know whats going on and even worse when you dont. Like when my wife was in there before her death. They had no idea why or how she had a stroke and couldn't tell me if it would happen again. Of course she passed from something I still have no idea why. Medicine seems so primitive. Best of luck to her and all.

[Kraken]

I saw your FB post and send my tots and pears. That's all I can send because my unemployed, questionably insured BIL is in his third week of hospital-rehab-hospital and it's still a highly uncertain situation. Wife is in the early stages of establishing a WeFundHim. Seriously, I hope that Maricel's friend beats the odds.

[em2nought]

Taking care of someone else's kid would scare the crap out of me as a male. I'd be ordering a body camera for sure if I was a good enough man to do the job.

[Zarathud]

I never pictured a “Leave Your Kids With JeffV” thread. We are in the STRANGEST timeline.

I hope never to be reading a “Leave Your Kids with em2” thread, because that would confirm the DARKEST timeline.

[Daehawk]

[Jeff V]

I never pictured a “Leave Your Kids With JeffV” thread. We are in the STRANGEST timeline.

It's happened before. Right after Al Gore invented the internet, I was attending a luau in New Jersey with about 3 dozen other online acquaintances, many meeting each other for the first time. The host fetched me from the airport and promptly left me in charge of 13 kids (6 lived there). 5 of them belonged to the only one of the parents I even met before, and that was in a bar where lots of booze was consumed. I took the kids for ice cream, only those 5 had no money and I had to buy for them.

Given the blank look I get when I yell at this kid for doing something wrong (like the other night when she decided smashing beer bottles and coffee cups on the patio was a fun thing to do) I suspect she doesn't get much discipline.

[Zarathud]

(like the other night when she decided smashing beer bottles and coffee cups on the patio was a fun thing to do)

Are you sure your life hasn’t become a sitcom? I LOLed at that mental picture, Jeff:

“No! Only adults get to smash beer bottles!! And you never mess with a coffee cup, kid!”

[Unagi]

Some day she'll understand that empty coffee cups are used to treat empty beer bottles.

[Blackhawk]

At that age, discipline problems can crop up in any kid when they're going through something traumatic - like being separated suddenly from a parent. They'll do things that they know are wrong in order to force parenting and the comfort that brings, only to discover that it still isn't the 'right' parent. Then that fact can cause them to act up more. They can act the way they do due to a wave of emotions they have no idea how to handle, including sudden loneliness, fear, and resentment. It doesn't help that all of their comfort things (their home, the smells, the parent, even the view out their window) are gone, and their routines, which kids thrive on, have been disrupted. Different smells, different people, different food, different shows on TV. Nothing feels right.

The point being that kids in that situation act differently from other kids, and usually aren't entirely in control of it. It's a tough thing to substitute-parent through.

[Drazzil]

Some day she'll understand that empty coffee cups are used to treat empty beer bottles.

/pam

Right?

/pam

[Jeff V]

The point being that kids in that situation act differently from other kids, and usually aren't entirely in control of it. It's a tough thing to substitute-parent through.

I think her being an only child has something to do with it as well, she's more accustomed to always getting her way or doing what she wants. At 5 years old, she is the same size and same mentality as my almost-3 year old. Now, if my daughter understood the concept of "best friend," this girl would undoubtedly be it...often when bringing them to my wife's job for morning hand-off, she'd say "momma will call Jackie (sick mom) so I can talk to Ashlyn!" The other day, when the girl went home with her dad for a night, she came downstairs in the morning and said "oh no, where's my Ashlyn?"

Leave them together for 10 minutes though, and you're likely to see my daughter choking her ala Homer and Bart. They don't share well, and while my daughter is better socialized, she's also proving to have alpha tendencies and imposes her will upon other kids, even if they are older than her.

[em2nought]

I never pictured a “Leave Your Kids With JeffV” thread. We are in the STRANGEST timeline.

I hope never to be reading a “Leave Your Kid with em2” thread

So you don't wish to hear anything about "Project Thai Eliza" then?

[Jeff V]

So after more than a week with no diagnosis, my wife decided to put her investigative skills to work and discovered something called anti-NMDA receptor encephalitis, aka "Brain on Fire" and the subject of a book and movie about a reporter in NY who suffered from this. It was first diagnosed in 2007, and the Mayo Clinic is the only lab currently able to diagnose it. The doctors actually listened to the suggestion, sent samples to the Mayo and it came back positive for this condition! While not cancerous in itself, chemotherapy is the best treatment for it. Recovery, if there's been no permanent damage, can take months.

We're still taking in the daughter to help out when we can, but last week she started twice-a-week preschool and this week this husband needs to spend some time in the office so he's not spending as much time at the hospital.

[Paingod]

And yet doctors will still tut at you when you say you read about something on Google that sounds like what you've got, and mutter about medical degrees. I guess Google MD only works when they're all standing there scratching their heads.

I'm honestly a little disappointed in Isgrimnur that your wife had to Google the answer for us.

[Isgrimnur]

I've been sick since Friday.

[Kraken]

And yet doctors will still tut at you when you say you read about something on Google that sounds like what you've got, and mutter about medical degrees. I guess Google MD only works when they're all standing there scratching their heads.

I'm honestly a little disappointed in Isgrimnur that your wife had to Google the answer for us.

Well, she IS a medical professional. So there's that.

Glad she has a diagnosis -- that's the critical first step in successful treatment.

[AWS260]

So after more than a week with no diagnosis, my wife decided to put her investigative skills to work and discovered something called anti-NMDA receptor encephalitis, aka "Brain on Fire" and the subject of a book and movie about a reporter in NY who suffered from this. It was first diagnosed in 2007, and the Mayo Clinic is the only lab currently able to diagnose it. The doctors actually listened to the suggestion, sent samples to the Mayo and it came back positive for this condition!

Your wife is remarkable, Jeff. First she puts up with you, now this...

[coopasonic]

I've been sick since Friday.

May want to send a sample (don't want to know what kind of sample) to the Mayo clinic.

[Isgrimnur]

I've been sick since Friday.

May want to send a sample (don't want to know what kind of sample) to the Mayo clinic.

Slimelung.

[Jeff V]

So after more than a week with no diagnosis, my wife decided to put her investigative skills to work and discovered something called anti-NMDA receptor encephalitis, aka "Brain on Fire" and the subject of a book and movie about a reporter in NY who suffered from this. It was first diagnosed in 2007, and the Mayo Clinic is the only lab currently able to diagnose it. The doctors actually listened to the suggestion, sent samples to the Mayo and it came back positive for this condition!

Your wife is remarkable, Jeff. First she puts up with you, now this...

She's already applied for sainthood. I understand the only complication is the "must be dead" requirement.

[Jeff V]

Not good news today:


Wife: I just spoke to Jackie's nurse
Sounds like she is declining badly

Me: what happened?

Wife: They stop giving her medication for coma now shes not responding
Like before
She use to be aggressive and combative when out of medication

Me: she is not waking?

Wife: Eyes were open but not responding to stimuli
Looking st the ceiling only
Cant move hands and legs

She went on to say the doctor wants to talk to the husband in person. He's supposed to be dropping off their daughter shortly.

[Kelric]

Definitely the worst timeline.

[Kraken]

Yeah, lots of not-good in that last update without much hope of a good next update.

[Jeff V]

Here's what the husband shared on FB today:

"Update 8-31-2019. So, Jackie is out of the induced coma but still unresponsive. The Mayo clinic finally sent back tests results and Jackie tested positive for anti-NMDA receptor encephalitis. Its nickname is “Brain on Fire” disease. It is pretty rare and hard to diagnose because it mimics symptoms of bipolar disorder and schizophrenia. Many people get misdiagnosed and sent to mental hospitals and the disease progresses unknowingly. It was only discovered in 2007. We were lucky to be sent to Rush University where the doctors quickly began treatments even though they couldn’t identify it right away. It is a very complicated disease, but the basic explanation is that something in the body starts sending antibodies to the brain to attack healthy brain cells. That is why the person starts having headaches, seizures, hallucinations, memory loss, etc. All of which Jackie experienced. The doctors discovered a small ovarian cyst and removed it yesterday. It is the suspected cause. They also started treatments of high dose steroids and will begin an antibody drug called Rituxan. Unfortunately, there is still a long road ahead for us. They are performing a surgery today for a tracheal tube and stomach tube for her recovery. The doctors were honest with me and said that Jackie may not come back right away. It will take time. It could be several weeks. It could be several months. It could be over a year. All the previous patients they’ve treated all responded differently in recovery. Since the disease is relatively new, there isn’t a direct line of treatment and recovery. It won’t be easy, but your continued support and prayers will continue to help us. Below are some links about the disease.

Again, I cannot express how much I appreciate all the love, prayers, and support for us. I’m struggling, Ashlynn is struggling, but your continued support and encouragement keeps us going. To all those who have donated, even anonymously, I can’t thank you enough for your kindness and generosity. You all are truly angels. To all those who have visited Jackie, thank you for talking to her and encouraging her to fight on. I wish her family from the Philippines was able to visit her, but you are her family here and your love for her is greatly appreciated. To all those who have helped and offered to help me and Ashlynn, I have so much gratitude for you and owe you all so much. I will not forget it."

[Kraken]

Glad to see that recovery is possible, even if it takes a year. She has youth on her side.

[Jeff V]

There is that.

[Kraken]

Just wondering if you still have an extra kid. I have a lot of work to do around here and might be able to use her if she can lift heavy objects.

[Jeff V]

Just wondering if you still have an extra kid. I have a lot of work to do around here and might be able to use her if she can lift heavy objects.

She's only 5 and can't even lift our little shitzu, preferring instead to drag her around by the tail and risk getting her face bit off.

In the past week she hasn't stayed with us all that much. We had a party for the kids birthdays on Sunday and she was over for that while her dad snuck off to the hospital to visit his wife.

I just finished reading the book Brain on Fire (I guess there's a movie on it, too). This is an account of a journalist who contracted this illness in 2009, a time when diagnosis of this condition numbered in the hundreds. When she wrote the book several years later, diagnosis were in the several thousand range but still considered extremely under-diagnosed. At the time of her writing, mortality rate was 4%, with a 25% chance of either death or permanent disability. 20% of those "cured" would have a relapse, although the chance of relapse was lower among those treated for ovarian cysts (the most common trigger...40% of cases including hers had no identified trigger). The cost of her treatment in 2009 was $1 million. Our friend has already been catatonic much longer than the author of this book. If and when she does come out of it, it could take months or more than a year to relearn everything she ought to know and for her personality to re-establish itself - if it ever does.

[Isgrimnur]

Bookbub just sent me a thing for audiobooks called Chirp that has Brain on Fire for $0.99.

[Kraken]

Just wondering if you still have an extra kid. I have a lot of work to do around here and might be able to use her if she can lift heavy objects.

She's only 5 and can't even lift our little shitzu, preferring instead to drag her around by the tail and risk getting her face bit off.

Disappointing. Work on the strength training. I have many heavy things that need carrying.

I'm at a point in my life where someone making a full recovery in a year would be excellent news, but I understand how that sucks for someone so young.

[Jeff V]

So this morning my wife announces we're all going to go see Jackie -- she was moved to a specialty hospital for long-term care, somewhat more convenient than downtown Chicago. For the first 2 hours there, she was unresponsive, and finally the kids were out of patience so I took them outside for a bit. When I came back in, she was awake and somewhat responsive to my wife, moving her fingers when directed, making eye contact with her and the kids and even smiling and laughing a bit. Hard to tell how much of her is rising to the surface though, but it seemed to be a positive sign as far as we're concerned.

Her husband came after we left, reported no such advance.