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Shellydon

Dr. Hive, is this *just* anxiety disorder and panic attacks?

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My 13 yo dd very suddenly began having panic attacks 3 weeks ago.  5 or more each day.  Total loss of control and reasoning abilities.  She has anxiety about impossible things-- an invisible hammer is going to hit her.  The walls of the bathroom are going to collapse on her etc.  I immediately took her in to the doctor who diagnosed "the worst case of anxiety he has seen in 20 years of practice" and prescribed Zoloft and Valium.  When she is in the middle of an attack she has motor or vocal tics that are beyond her control.  DD is constantly worries about her heart-- it is beating too slow, too fast, feels funny, feels different "my heart has stopped beating" etc.   It can take up to 4 hours to get her to sleep at night,even with max doses of Valium.  Prior to this, she was occasionally mildly anxious, but able to do anything she wanted. 

 

Needless to say, this has hugely impacted her siblings in a very negative way as we have not left the house to do any activities in nearly a month. 100% of mom and dad's efforts are on the 13 year old.   We have a counseling appointment this week and a cardiologist appointment later this month to rule out heart arrhythmia .  

 

Any other ideas of what this could be? 

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Is there any possibility that she has had strep throat in the past year?  PANDAS is another thing I would rule out especially considering her age.

 

Not that I know of.  Our pediatrician has diagnosed several cases of PANDAS and doesn't feel she fits the profile but is willing to do blood work if I can get DD back into the lab for another draw. She has had two so far for a full blood panel and a complete thyroid work up.

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I was going to suggest PANS/PANDAS as well as ruling out any other type of physical issue. Neurologist maybe to check for seizures and anything else that would cause a sudden onset of such severe anxiety,

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Not that I know of.  Our pediatrician has diagnosed several cases of PANDAS and doesn't feel she fits the profile but is willing to do blood work if I can get DD back into the lab for another draw. She has had two so far for a full blood panel and a complete thyroid work up.

 

Also, pediatrician is willing to prescribe 2 weeks of Augmentin to see if that helps.  I don't want to add to DD anxieties by having her take an antibiotic if not necessary though. 

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Definitely more than just anxiety. In addition to a full medical eval, she need a psychiatric eval. This is not a small thing. 

 

Give her the antibiotics. Don't tell her why. "We want to make sure your body is as healthy as it can be." Treat it like a preventive. 

 

edit.  :grouphug: for you and your girl. I'm sure this is terrible for both of you. 

Edited by desertstrawberry5
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Call your Dr so you can get a zio patch now that way it's off for data collection by the time you go in for her heart imaging. Insisting on a zio, imo, not a holter.

 

What you describe are panic attacks, yes. Having panic attacks can cause anxiety (about panic attacks and their triggers).

 

Don't ask her questions during them. People who feel like they're actively dying say weird things.

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I have never heard of a sudden and intense onset like that and I used to work in mental health. I am concerned by the possible psychosis (invisble hammers) and the vocal/motor tics. That does not spell anxiety only to me. 

 

Definitely pursue PANDAS. Meanwhile, I would make an appt for a neurologist and a psychiatrist.  You can cancel if they find PANDAS but getting a new patient appointment can be a lot of waiting. (One trick to get in sooner is to call every day to see if there have been cancellations.)  I am actually surprised that a GP wouldn't be wanting her to see a specialist and be advocating for a quick appointment. Perhaps point out the possibly psychotic symptoms and motor/vocal tics and ask if the doc can facilitate a quick appointment. 

 

:grouphug:

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Definitely more than just anxiety. In addition to a full medical eval, she need a psychiatric eval. This is not a small thing. 

 

Give her the antibiotics. Don't tell her why. "We want to make sure your body is as healthy as it can be." Treat it like a preventive. 

 

edit.  :grouphug: for you and your girl. I'm sure this is terrible for both of you. 

 

Thank you.  It has been totally surreal.  One day we are a normal family and the next we are under siege.  We don't do any of the stuff typically associated with teen  anxiety-- no phones, no social media.  Full time homeschoolers with a good group of friends that they see regularly, no bullying etc. 

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I'm going to agree with the PANDAS/PANS possibility.  Have her checked for strep and start the augmentin.

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Thank you. It has been totally surreal. One day we are a normal family and the next we are under siege. We don't do any of the stuff typically associated with teen anxiety-- no phones, no social media. Full time homeschoolers with a good group of friends that they see regularly, no bullying etc.

Yes it's not anxiety. It's panic.

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I have never heard of a sudden and intense onset like that and I used to work in mental health. I am concerned by the possible psychosis (invisble hammers) and the vocal/motor tics. That does not spell anxiety only to me. 

 

Definitely pursue PANDAS. Meanwhile, I would make an appt for a neurologist and a psychiatrist.  You can cancel if they find PANDAS but getting a new patient appointment can be a lot of waiting. (One trick to get in sooner is to call every day to see if there have been cancellations.)  I am actually surprised that a GP wouldn't be wanting her to see a specialist and be advocating for a quick appointment. Perhaps point out the possibly psychotic symptoms and motor/vocal tics and ask if the doc can facilitate a quick appointment. 

 

:grouphug:

 

Her GP is giving her another week to respond to the SSRI before referring to a psychiatrist. I can ask for a neurologist referral.

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I have never heard of a sudden and intense onset like that and I used to work in mental health. I am concerned by the possible psychosis (invisble hammers) and the vocal/motor tics. That does not spell anxiety only to me.

 

Definitely pursue PANDAS. Meanwhile, I would make an appt for a neurologist and a psychiatrist. You can cancel if they find PANDAS but getting a new patient appointment can be a lot of waiting. (One trick to get in sooner is to call every day to see if there have been cancellations.) I am actually surprised that a GP wouldn't be wanting her to see a specialist and be advocating for a quick appointment. Perhaps point out the possibly psychotic symptoms and motor/vocal tics and ask if the doc can facilitate a quick appointment.

 

:grouphug:

I agree- the possible psychosis stood out to me as well. I would pursue both neurologist and psychiatrist and would have hoped your GP, given the onset and severity, would encourage you that way.

 

You are in my thoughts

 

â¤ï¸

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Sudden onset (or sudden exacerbation) of neuropsychiatric symptoms points to an infectious trigger.  For what it's worth, PANDAS is a subset of PANS; the possible triggers go far beyond just strep.

Vocal and motor tics would also point directly to PANS/PANDAS.  I would not overlook the significance of tics as a clue.

I posted some recent links here.

Edited by wapiti
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This was how the worst part of Ehlers Danlos started for my youngest. Beginning of puberty is when it really strikes hard for females because progesterone makes the connective tissue even stretchier.

 

There were physical signs from a very young age, but what started our journey to diagnosis was the panic attacks that began at 11yo.

 

http://www.huffingtonpost.co.uk/natasha-lipman/ehlers-danlos-syndrome-my-invisible-illness_b_3355576.html

 

https://www.edhs.info/symptoms (hit the page-down button three times to get to the start of the list)

Edited by AngieW in Texas
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I agree that you guys should continue ruling out any underlying physical cause. Anxiety can come on or worsen suddenly, but it's pretty extreme to go from functional to what you're describing in a 13yo that quickly.

 

The specific symptoms you're describing are consistent with OCD, though. Even the seemingly bizarre stuff. You wouldn't believe some of the ridiculous stuff I've obsessed about over the years.

 

If it turns out she's physically healthy, do you have an appointment set up with a psychiatrist? I wouldn't trust her ongoing mental health care to a GP for the long term.

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I agree that you guys should continue ruling out any underlying physical cause. Anxiety can come on or worsen suddenly, but it's pretty extreme to go from functional to what you're describing in a 13yo that quickly.

 

The specific symptoms you're describing are consistent with OCD, though. 

 

Just for the sake of completeness, for lurkers reading this thread, OCD is the primary neuropsychiatric symptom involved in PANS/PANDAS.  (The symptom list, depending on the version, usually starts with "OCD and/or tics."  Many kids have both, though some have only one or the other; e.g. my kiddo has only OCD, without tics.)

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I don't see any point in waiting for the psychiatric referral. If it turns out to be "only" anxiety/panic disorder, it's a very severe disorder and I wouldn't leave that to a pediatrician to treat.

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It's probably not this, but we have a friend who is fighting autoimmune encephalitis, but thought I'd mention it just in case because hers came on suddenly one day after school.

 

I'm sorry, and I hope you discover the cause and a solution soon.

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I know you are probably already overwhelmed so I hate to add something else to your plate but I highly, like really strongly, recommend starting a medical journal if you haven't already.  

 

Keep track of dates, times, symptoms, what she says, what she ate, what she drank, meds and when they were taken, how she slept, etc.  Create a sheet you can just check off with minimal fill in requirements for much of it so it won't be so time consuming.  This will help when you have to report things to the doctors.  It will also mean your report is more accurate than just from memory.  Since you, too, are in a bit of a crisis situation because of your poor DD memory can get really inaccurate.  You need accuracy.  This situation, whatever the underlying cause, may take time to sort out and it could be hard to remember details going back any length of time.  

 

Also, go back and try to nail down exactly when the symptoms seemed to escalate and write down the date.  

 

Hugs and good luck.

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I know you are probably already overwhelmed so I hate to add something else to your plate but I highly, like really strongly, recommend starting a medical journal if you haven't already.  

 

Keep track of dates, times, symptoms, what she says, what she ate, what she drank, meds and when they were taken, how she slept, etc.  Create a sheet you can just check off with minimal fill in requirements for much of it so it won't be so time consuming.  This will help when you have to report things to the doctors.  It will also mean your report is more accurate than just from memory.  Since you, too, are in a bit of a crisis situation because of your poor DD memory can get really inaccurate.  You need accuracy.  This situation, whatever the underlying cause, may take time to sort out and it could be hard to remember details going back any length of time.  

 

Also, go back and try to nail down exactly when the symptoms seemed to escalate and write down the date.  

 

Hugs and good luck.

 

This is a good idea, thanks!

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You need a psychiatrist ASAP. 

 

The only person I knew who had something happen that swiftly was a friend who had a psychotic episode in high school. She was later diagnosed with bipolar. (and is now happy and doing well.) NOT saying that is what is going on here, but saying a psychiatrist is needed, now. This is beyond the scope of a primary care doctor. 

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It's probably not this, but we have a friend who is fighting autoimmune encephalitis, but thought I'd mention it just in case because hers came on suddenly one day after school.

 

I'm sorry, and I hope you discover the cause and a solution soon.

 

I think this is a useful thought.  Some of the symptoms that OP describes go well beyond typical PANS (though the leading docs are now trying to describe PANS as a different sort of autoimmune encephalitis).  I'm thinking of the hallucination symptoms.  If any of you have read "Brain on Fire," that is a type of AE, though there are others.  Finding expertise for some sort of AE can be even more challenging than for garden variety pans/pandas.  When I think of things that can be done at home to provide more clues, in the middle of a symptom flare I would ask her to draw a clock.

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My 13 yo dd very suddenly began having panic attacks 3 weeks ago.  5 or more each day.  Total loss of control and reasoning abilities.  She has anxiety about impossible things-- an invisible hammer is going to hit her.  The walls of the bathroom are going to collapse on her etc.  I immediately took her in to the doctor who diagnosed "the worst case of anxiety he has seen in 20 years of practice" and prescribed Zoloft and Valium.  When she is in the middle of an attack she has motor or vocal tics that are beyond her control.  DD is constantly worries about her heart-- it is beating too slow, too fast, feels funny, feels different "my heart has stopped beating" etc.   It can take up to 4 hours to get her to sleep at night,even with max doses of Valium.  Prior to this, she was occasionally mildly anxious, but able to do anything she wanted. 

 

Needless to say, this has hugely impacted her siblings in a very negative way as we have not left the house to do any activities in nearly a month. 100% of mom and dad's efforts are on the 13 year old.   We have a counseling appointment this week and a cardiologist appointment later this month to rule out heart arrhythmia .  

 

Any other ideas of what this could be? 

 

My first thought with anxiety and abnormal heart rhythm symptoms is mitral valve prolapse. It can cause anxiety. I think you are on the right track with a cardiology appointment! Can you see if you can get in sooner perhaps?

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My first thought with anxiety and abnormal heart rhythm symptoms is mitral valve prolapse. It can cause anxiety. I think you are on the right track with a cardiology appointment! Can you see if you can get in sooner perhaps?

 

I agree with this!  My DH's side of the family has mitral valve prolapse, so that was my initial reason for getting her heart checked.   She has a Holter Monitor on now.. it will take a week to read once we turn it in on Monday.

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I have no ideas, but wanted to tell you you're doing a great job at trying to track down the cause, and I hope it's sorted soon. I know this is a very stressful time for all of you; take some time each day to put it out of your brain and just breathe and do something for yourself, for your own sanity's sake. Your own life vest and all of that. :grouphug:.

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I will continue to update here just in case anyone else ever does a search for a similar issue.  The Holter monitor gets turned in Monday and takes at least 7 days to get read and have a report run.  Her anxiety is somewhat less, but the motor tics have increased.  :(

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I will continue to update here just in case anyone else ever does a search for a similar issue.  The Holter monitor gets turned in Monday and takes at least 7 days to get read and have a report run.  Her anxiety is somewhat less, but the motor tics have increased.  :(

 

Do you have a neurologist appt? Have they done any testing for neurological problems? CT scan? EEG?

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I'm glad they are checking for autoimmune, I was going to suggest checking that too.  There are a couple autoimmune conditions that can cause psychosis (temporary if caught and treated quickly, permanent if not caught).

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Do you have a neurologist appt? Have they done any testing for neurological problems? CT scan? EEG?

SaveSave

 

Not yet.  I'll call on Monday to get that one in motion.

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Not yet.  I'll call on Monday to get that one in motion.

Good. Motor tics is a big red flag to get neurologists on board. 

 

Honestly, with what you are describing I'd be heading to a big children's hospital and asking to be admitted, so that a the various specialities could figure it out in one place. 

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:grouphug: :grouphug:   How frightening this must be for you. I don't have anything to add but my hopes that you are able to help your daughter quickly and she gets back to her normal self soon.

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Just bumping for more views and hopefully some helpful ideas from others. Hoping things are improving and you're getting good help. Praying for a good update soon.

Edited by FriedClams

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Just bumping for more views and hopefully some helpful ideas from others. Hoping things are improving and you're getting good help. Praying for a good update soon.

 

Thanks.  Last night was rough as she could not stop the tics long enough to fall asleep.  Overall, the panic has decreased.  She has been on Zoloft for 2.5 weeks, so hopefully things will continue to improve.  Blood tests are still out for a few things as well as the heart monitor.  I am so worried we are going to miss some sort of biological cause for all of this and it will not get treated. 

 

 

 

I really appreciate all of the insight and help from everyone!  It is extremely helpful to have other people offer ideas.

Edited by Shellydon

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Thanks.  Last night was rough as she could not stop the tics long enough to fall asleep.  Overall, the panic has decreased.  She has been on Zoloft for 2.5 weeks, so hopefully things will continue to improve.  Blood tests are still out for a few things as well as the heart monitor.  I am so worried we are going to miss some sort of biological cause for all of this and it will not get treated. 

 

 

 

I really appreciate all of the insight and help from everyone!  It is extremely helpful to have other people offer ideas.

 

Can you, with her permission, video the tics? I would be concerned these were seizures and not tics, and they don't always show up in the doctor's office. Showing a video can be helpful in diagnosis (which would obviously include an EEG).

 

I think I've read something on sertraline inducing tics. Were they present before she started Zoloft?

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Just another random piece of info as a PSA or just to stash in the back of your mind, there is a certain portion of PANS kids whose symptoms get worse on regular dose SSRIs. The usual advice is to start at a small fraction. (Glad the strep titers were negative though checking for PANS can be way more complicated, as many will not produce a titer rise or be responding to an entirely different issue; long story.)

 

Good luck getting to the bottom of things. Are the tics worse or the same?

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Thank you. The tics are about the same. They are definitely related to anxiety. On her anxiety goes up, the tics increase. Her biggest complaint is that the medication makes her feel foggy and she cannot think well.

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Update-- finally got to the cardiologist today.  The electrocardiogram was normal, she does not have mitral valve prolapse.  The zoloft does not help at all, so I am gradually reducing the dose and weaning her off.  2.5 mg. of Valium twice a day keeps enough of the anxiety at bay to make her functional.  She says she is short of breath all the time, more so when laying down.  The cardiologist said she has orthostatic issues causing her fluttery heart and dizziness. He recommended drinking 100 oz or more of water each day, core strengthening exercises and 30 minutes of aerobic exercise 5 times a week.    Psychiatric appointment is a week from today. 

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Good update! Glad her heart has been ruled out. 

 

Just another thought....has she had a chest X-ray to make sure there is nothing physically pressing on her chest making her short of breath when she's flat? It is very rare, but I did have a teen patient with the same symptoms (minus the tics) and a simple chest X-ray lead to her diagnosis. It would be an easy and noninvasive way to just be sure. 

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Update-- finally got to the cardiologist today.  The electrocardiogram was normal, she does not have mitral valve prolapse.  The zoloft does not help at all, so I am gradually reducing the dose and weaning her off.  2.5 mg. of Valium twice a day keeps enough of the anxiety at bay to make her functional.  She says she is short of breath all the time, more so when laying down.  The cardiologist said she has orthostatic issues causing her fluttery heart and dizziness. He recommended drinking 100 oz or more of water each day, core strengthening exercises and 30 minutes of aerobic exercise 5 times a week.    Psychiatric appointment is a week from today. 

 

Has anyone considered dysautonomia or POTS?

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