BK is in ICU

[Dmmetler]

BK21, who had a “stroke-type event” a bit over 2 years ago as a senior in high school, just had another at work today. She is in ICU now. They did TPA, and she has had a lot of improvement, which indicates that it probably was a stroke, and are testing for COVID, since it can affect clotting. The reaction was very different than 2 years ago, where the general reaction was “what drugs is she taking”, and that it couldn’t possibly be a stroke in a teenager. 
 

Her mom can’t get into see her, so I definitely can’t. We’re all really scared. 

[73349]

(((dmmetler))) May she receive excellent care and recover swiftly.

[Terabith]

Oh no!  Definitely praying.  

[cintinative]

Praying.

[prairiewindmomma]

Praying!

[Innisfree]

Holding you all in my thoughts

[Guest]

How stressful! Many healing vibes coming to your BK. 

[kbutton]

I am so sorry to hear this. Praying.

Does she have a clotting disorder or antiphospholipid syndrome? It's overlooked, tends to affect women, and is a risk factor for strokes on people under 45. Antibodies can be transient vs. elevated all the time.

[Pen]

Scary.   I hope she will be okay.

[Guest]

11 minutes ago, kbutton said:

I am so sorry to hear this. Praying.

Does she have a clotting disorder or antiphospholipid syndrome? It's overlooked, tends to affect women, and is a risk factor for strokes on people under 45. Antibodies can be transient vs. elevated all the time.

Supposedly not. She was tested for a ton of stuff 2 years ago, including at the Mayo Clinic. At the time, they pretty much decided that it was a conversion disorder, as opposed to anything organic, because all the tests came out negative. She does have a prior blood clot that was probably prenatal and likely accounts for some of her learning issues, but was eventually ruled to have nothing to do with her symptoms.  She does have POTS and migraines. 
 

We’ve been worried about her going back to work-she can’t mask at the pool, And it is an partially indoor pool, so an enclosed space (and because she’s a redhead and burns easily, she is usually assigned an indoor post vs an outside one), although she is usually up on the stand, so not particularly close to other people, and they have been restricting numbers. They have had summer camps though, so that increased the numbers recently.  She’s been careful-I haven’t seen her in person since February, and I don’t think she’s seen her mother or siblings much, either. Her boyfriend is still working from home. 
 

 

[Pen]

 

27 minutes ago, dmmetler said:

-she can’t mask at the pool,

 

Why not? 

 

 

[Kareni]

Sending good thoughts to BK21. How very frightening, @dmmetler.

Regards,

Kareni

[Guest]

26 minutes ago, Pen said:

 

Why not? 

 

 

It would be about like trying to mask in a sauna, if she’s on the indoor deck (outdoor is less humid). 

[2squared]

57 minutes ago, Pen said:

 

 

Why not? 

 

 

My lifeguards don’t mask because they can’t blow their whistle and jump in the water with a mask on. They are trained to jump in with whatever is on their body - seconds count when saving lives. 

[J-rap]

I'm so sorry...  It sounds like she was whisked in quickly though, and the TPA is helping.  It sounds very likely that she'll make a good recovery!

I hope they can get to the bottom of it.  My dh had chronic migraines that evolved into a stroke one day.  Doctors never like to link the two officially (not enough conclusive research), but unofficially they admit there's probably some kind of a connection.

My mother had several strokes that were finally was discovered to be from a small hole in her heart, something that wasn't too unusual even.  

Most likely your doctors have looked into all of this...  Just wanted to share our experience in case it's at all helpful.

Thinking of you and praying she gets back to where she was, soon!

 

[mumto2]

Praying

[Pen]

44 minutes ago, 2squared said:

My lifeguards don’t mask because they can’t blow their whistle and jump in the water with a mask on. They are trained to jump in with whatever is on their body - seconds count when saving lives. 

 

1 hour ago, dmmetler said:

It would be about like trying to mask in a sauna, if she’s on the indoor deck (outdoor is less humid). 

 

I’m trying to think back to my own lifeguard days.  I guess it wasn’t summer. I recall feeling cold, not hot.

 

My guess is that jumping in water and whistle could be worked out if there were a will to do so.  

A coast guard squeeze horn in place of a whistle for example.  And a mask that would easily come off in emergency.  

But biggest infection risk might likely be up close face to face or at least closer than 6’ with a swimmer needing rescue — worse than sitting on a lifeguard stand.  Though many hours breathing steamy perhaps pathogen laden air might not be so great. 

[Junie]

Praying for your Bonus Kid.

[sassenach]

3 hours ago, Pen said:

 

 

Why not? 

 

 

Not the time. 

[sassenach]

1 hour ago, Pen said:

 

 

I’m trying to think back to my own lifeguard days.  I guess it wasn’t summer. I recall feeling cold, not hot.

 

My guess is that jumping in water and whistle could be worked out if there were a will to do so.  

A coast guard squeeze horn in place of a whistle for example.  And a mask that would easily come off in emergency.  

But biggest infection risk might likely be up close face to face or at least closer than 6’ with a swimmer needing rescue — worse than sitting on a lifeguard stand.  Though many hours breathing steamy perhaps pathogen laden air might not be so great. 

I think that this is not the time or thread for this discussion. Though I appreciate reading your input on other threads, not everything is a Covid debate. 

[sassenach]

6 hours ago, dmmetler said:

BK21, who had a “stroke-type event” a bit over 2 years ago as a senior in high school, just had another at work today. She is in ICU now. They did TPA, and she has had a lot of improvement, which indicates that it probably was a stroke, and are testing for COVID, since it can affect clotting. The reaction was very different than 2 years ago, where the general reaction was “what drugs is she taking”, and that it couldn’t possibly be a stroke in a teenager. 
 

Her mom can’t get into see her, so I definitely can’t. We’re all really scared. 

Praying for her. 

[Ausmumof3]

Hoping it turns out not to be anything too scary and she gets better and can come home!  

[frogger]

I'm so sorry. Praying for her now.

[ashfern]

Prayers

[Guest]

As of this morning, she is conscious, and has not had any further stroke symptoms. She is able to talk, although her speech is affected, and she has noticable weakness in the right half of her body, it is reduced from when she came in. Her MRI looks clear so they are d9ing a cardiology workup next. Rapid COVID was negative, but apparently COVID related strokes often happen after the active phase of the illness. And the PCR and antibody tests aren't back yet. At this point, I don't know how much it matters. She is still in ICU. 

 

[sassenach]

Praying for continual improvement!

[Katy]

I keep checking for updates.  Praying for her and her entire family.

[TravelingChris]

yES, THIS,.   If not Covid, makke sure they do complete clotting testing which was 29 tests back in 2010 and most likely, even more now.  But the most common genetic reason is Factor V Leiden and that is reported on 23 and me health tests, if you have had those.  What 23andme says though, is having a gene from one parent v both, is low risk.  I had my first PE at 27, my first undiagnosed DVT at age 34, and many other clots and who knows how may mini strokes between 34 and 47 and with a huge clot going from my ankle to the end of my thigh, 

18 hours ago, dmmetler said:

Supposedly not. She was tested for a ton of stuff 2 years ago, including at the Mayo Clinic. At the time, they pretty much decided that it was a conversion disorder, as opposed to anything organic, because all the tests came out negative. She does have a prior blood clot that was probably prenatal and likely accounts for some of her learning issues, but was eventually ruled to have nothing to do with her symptoms.  She does have POTS and migraines. 
 

We’ve been worried about her going back to work-she can’t mask at the pool, And it is an partially indoor pool, so an enclosed space (and because she’s a redhead and burns easily, she is usually assigned an indoor post vs an outside one), although she is usually up on the stand, so not particularly close to other people, and they have been restricting numbers. They have had summer camps though, so that increased the numbers recently.  She’s been careful-I haven’t seen her in person since February, and I don’t think she’s seen her mother or siblings much, either. Her boyfriend is still working from home. 
 

 

I was really not impressed with Mayo's handing of my daughter where they claimed conversion symptom too when she was having actual abnormal test results, etc. 

You need to check the records and see if they actually tested for all the blood clotting issue.  The fact that she has had a prior blood clot means she DOES have some sort of blood clotting issue.  No doubt about that.  They dismiss women in general and young women in particular with psychological issues, or weight issues, or you are too young to have an issue.

I had my first PE (that I know of) at 27, then when they diagnosed me with antiphospholipid antibodies, I had a high risk pregnancy without blood thinners (cause no one tested me for the most common reason for clots- Factor V Leiden), and had a blood clot in my left leg that they did a doppler but missed and I was 34.  Had a lot of blood clots and everyone was missing them- including nurses seeing them in hospitals- hey it is normal to get a blood clot with an IV---NO, IT ISN"t,  Then when I was 47, I broke a leg but had a walking cast so should have been okay- no, I got a huge DVT from my ankle to the top of my thigh and they stopped looking how much further it went.  Most of the kind of tests they need to do with blood clotting won't be able to be done now.  But if you can check which ones were already done- like Factor V Leiden is a genetic test and even 23andme reports on it if you do the health thing too.  Now they say having a gene from one parent only is low risk--THEY LIE.  I only have a one gene not too.

Also, many auto immune diseases are very hard to diagnose, especially early in the disease.  One reason is that your body feels the affects of overactive immune system way before you actually have identifiable results on testing.

And another warning-   any other testing that may be done should not be done using LabCorp,

 

I will be praying for her and for you and your family.

[chiguirre]

@dmmetler I recently read an autobiography that traces the author's battle with various severe symptoms that were not taken seriously by her medical professionals. She also had a horrible experience at the AZ Mayo clinic, so that's three cases along with @TravelingChris's.

The book is 

The Lady's Handbook for her Mysterious Illness by Sarah Ramey

I think this might be a good resource for you right now and for your BK when she's feeling better. If nothing else, it's good to know she's not alone when doctors tell her it's all in her head.

Hugs to both of you!

[Pen]

5 hours ago, dmmetler said:

As of this morning, she is conscious, and has not had any further stroke symptoms. She is able to talk, although her speech is affected, and she has noticable weakness in the right half of her body, it is reduced from when she came in. Her MRI looks clear so they are d9ing a cardiology workup next. Rapid COVID was negative, but apparently COVID related strokes often happen after the active phase of the illness. And the PCR and antibody tests aren't back yet. At this point, I don't know how much it matters. She is still in ICU. 

 

 

I hope she will continue to improve!

 

(If you want a reply to the cv19 part please say so, other wise I will go with sassenach that it is not the right time, and just send best wishes for all of you.) 

[Guest]

After cardiology did some tests yesterday, they think she has a small Atrial septic defect that has gone unnoticed, but might be triggering these symptoms. She has been moved out of ICU but cardiology is keeping her for more tests. I am glad they finally are treating this as real. 

[Pen]

 

I’m glad she’s out of ICU and that what is wrong is being figured out!

 

[mominco]

(((hugs)))

[Guest]

The plan is to monitor and do some PT and tests over the weekend, and do an endoscopic look at the heart to figure out how best to proceed, whether to correct surgically, or to handle with medication, at least until the hospitals are more back to normal levels. 
 

It seems strange to say, but in some ways, I am glad this happened now, when she is still on her stepfather’s insurance, and when the first thought for a young person with stroke symptoms is that it is a stroke, not a drug reaction. It may have saved her life.

[TravelingChris]

I am very happy she is out of ICU but still in the hospital and that it looks like they found an answer.   

[Ausmumof3]

I’m glad you are getting some answers.  Hopefully they settle on a good solution for you all soon.

[KungFuPanda]

Thinking of you today.   I hope she continues to improve and get great care.

 

[ktgrok]

Between this kid, and the poster on here who's child was horrendously anemic and told their exhaustion was "anxiety", I just hate doctors sometimes. 

Might as well just call women "hysterical". 

[mommyoffive]

I am so sorry.  I am sending lots of good thoughts to her, for a smooth recovery.    I am glad there are some answers and now the doctors can have a plan to help her.

[Guest]

No real updates as of this morning, but in some ways, I think this has been a good experience for her. Both because she is having to advocate for herself-I can't be there, her mom can't be there, her boyfriend can't be there, so she's having to explain that, for example, she had major chest pain most of the day before this attack (which is one reason why they looked at cardiology). She's also expressed interest and asked questions about some of the professionals, and, after two years of being scared to go to college, because she had been told that she had basically convinced herself she had a stroke (and lasting stroke symptoms) due to pushing herself too hard and being under too much stress, is now looking at the idea of becoming a radiology or ultrasound technician. She's always been interested in medical fields, but with her LD issues, had felt that the math requirements were too hard. She had been considering becoming a paramedic or EMT until 2 years ago. Now, she's getting a chance to discuss this with people in the field, and is also getting reassurance that, yes, there is something physically wrong, but we think we know what it is, and we're not going to let you go until we know it's safe to do so and have a plan to control it-so you can start planning your future life, which you put on hold two years ago. She is actually sounding more confident than I've heard her in awhile. 

 

I'm both praising God for the blessing...and extremely angry that the medical team two years ago didn't look more fully and actually figure out what was wrong, instead of choosing to dismiss it all as in her mind, and seeing each test that came back negative as support for that theory. 

[Pen]

 

Wow!  

Have her symptoms resolved? 

 

ECG technician could also be interesting. 

[Guest]

Not entirely-she still needs a walker and is struggling to control her right side, and her speech is slightly slurred, but on the whole, she has improved a lot. What is interesting is that she hasn't had full sensation in her legs since the last event, and she actually now has MORE sensation than she used to, so somehow, the TPA seems to have actually reversed past damage as well.  They are fairly optimistic that given her youth, she'll regain her motor skills. 

 

One good thing-my state has a 2 year automatic grant for returning students (or for graduating seniors, but at this point, she would qualify for the returning student one since she's been out of school the last two years) that she could use for a 2 year certification in many of the medical careers area-that's the primary focus of the community college DD attends. She also is likely to qualify for some vocational rehab assistance. Apparently that was something that the social worker at the hospital told her about-that not only does this not mean that she can't continue her life and will be disabled forever, but vocational rehab can help-and that even if she needs to use a wheelchair for longer distances due to fatigue, or needs help with someone to take notes for her in classes, or whatever, they can help her get the assistance she need. 

[kbutton]

5 hours ago, dmmetler said:

She also is likely to qualify for some vocational rehab assistance. Apparently that was something that the social worker at the hospital told her about-that not only does this not mean that she can't continue her life and will be disabled forever, but vocational rehab can help-and that even if she needs to use a wheelchair for longer distances due to fatigue, or needs help with someone to take notes for her in classes, or whatever, they can help her get the assistance she need. 

I didn't realize they paid for college-related things too!!! Vocational rehab is wonderful. I have a relative with MS that wouldn't be able to work without their help. I am so happy this is turning into a big, open door so far!

[Guest]

Vocational rehab often works closely with student services at colleges and universities. For example, when I was in grad school, VR helped me get the updated assessments that qualified me for services, as well as provided me with bus passes and paratransit, since I couldn't drive due to medical issues at the time. 

I'm glad they're discussing that kind of stuff with BK-she needs hope.

[Guest]

She is home from the hospital. She definitely has an ASD and arterial regurgitation, which caused this stroke (and also validated that the prior event was a stroke). She has a follow up tomorrow with her new cardiologist to decide on a treatment plan. 

[mommyoffive]

I am so  glad she is home and they found out the cause.  I hope the appointment goes well to find a treatment plan that works for.

Edited August 11, 2020 by mommyoffive

[mominco]

I am happy and relieved for you.The unknown is always the most worrisome.

[Guest]

It's very validating to hear that, yes, something is physically wrong. Right now, the plan is to monitor, do PT, and she is on aspirin therapy to help prevent blood clots. They don't want to do surgery right now due to the COVID situation, but that may be coming up. 

[TravelingChris]

Just now, dmmetler said:

It's very validating to hear that, yes, something is physically wrong. Right now, the plan is to monitor, do PT, and she is on aspirin therapy to help prevent blood clots. They don't want to do surgery right now due to the COVID situation, but that may be coming up. 

I am surprised that it is just aspirin.  I thought most people with either genetic issues or actual physical issues needing blood thinning are put on blood thinners.  I guess the thought is that she doesn't need such a strong thinner?  Or is it more aspirin then they usually recommend for people to prevent heart attacks?

[Guest]

23 minutes ago, TravelingChris said:

I am surprised that it is just aspirin.  I thought most people with either genetic issues or actual physical issues needing blood thinning are put on blood thinners.  I guess the thought is that she doesn't need such a strong thinner?  Or is it more aspirin then they usually recommend for people to prevent heart attacks?

I think they're being conservative right now. Maybe too much so.