What are some additional options for severe anxiety?

[Shelydon]

One of my kids has been dealing with severe anxiety for 4 years. She is 18 and will be a senior. Her anxiety is primarily manifested by separation from Mom or Dad and she will literally do nothing without a parent present. Over the past 4 years we have worked hard to make sure she continues to do activities such as summer camp by attending the camp as a counselor, etc. She sees a psychiatrist, is on medication, has had multiple different therapists, cognitive behavior therapy and EMDR. Parents are completely maxed out at this point, finances are shot from all the therapies and the anxiety is not any better. No one seems to know what to do with this kid. Any ideas where to turn to next? 

[GoVanGogh]

Yoga - either taking classes by an instructor that approaches it from a therapeutic approach or going through yoga teacher training. I had always wanted to go through yoga teacher training, not with the intention to teach, but so I would gain a deeper understanding of the practice. I had no idea going in to training that it would help with my lifelong problem with anxiety. I have drifted away from yoga over the past few months and can feel a noticeable change in my moods. I am, as of yesterday, going back to intensive yoga, daily practice and meditation. 

[PeterPan]

The times I've heard of this happening, it was in a dc (girl) on the spectrum. You want the nice answer, the technical answer, or the tough love answer? Remember, my ds is diagnosed asd2 so I live pretty hard in that world. It's precisely the reason I started traveling with him, because I was hearing stories like this. Anyways.

Technical answers.

-run genetics to look for underlying treatable issues (zinc receptor, nbpf3=b6 that requires p5p=pyrrole disorder, tph2=5htp, methylation defects, etc.). Treat all that obviously. There could be layers of chemical things making it really hard for her to get cognitively there or cognitively to use the tools she's being given. The b6/p5p issue is especially insidious and one to look into. 

-update evals to look at the autism question with someone who is an expert in girl autism.

-get an OT to work on interoception. 

Nice answers.

-How is transition to work, college, etc. going? Have you seen what your county board of developmental disabilities can do?

Tough love.

-Move her out. I've been given this advice for my ds and his anxiety is under control. I'm not saying I'm looking at that answer gleefully or that I'd do it before you do those other technical things I listed. But in reality, they're going to have to separate at some point (death happens) and putting them in a stable, consistent place that can be their stable, consistent place is a viable path forward. Or as someone put it to me, when do you want that to happen, when you die (abruptly) or sooner (with intention, planning, care).

I've seen people say in autism circles to use EMDR for this stuff and it still mystifies me. Interoception will allow her to begin to self advocate. Maybe there are some chemistry pieces you can find. And when you've done everything, I'd probably do some tough love. By a house across the street and get her a cat/dog. If she cannot work due to her anxiety, she ought to be getting qualified for services and may qualify for a group home placement. But I would do the interoception work and the genetics first to see what can improve.

Btw, if you want to talk travel, you could consider it. Get the chemistry under control first and do the interoception work. Once you have that piece, you could travel TOGETHER but use the travel (with a consistent pattern like cruising, cruising, did I mention cruising?) and use it to gradually build some separation/confidence. For us, cruising and the skills we build with it are as important as our school work honestly. It would probably be stressful at first (it was for my ds) but if you do it enough you might build up the confidence and skills. 

I know, I know, too expensive. Hurricane season has super cheap cruises, sometimes $250 a person for a week. The caribbean is overstocked with ships right now because some were repositioned from the Med due to the war. This is also driving down prices, meaning you might be able to find some deals and go a couple times on the cheap even this year. Hurricane season I'm talking September/october. That would give you time to run genetics, start some targeted supplements, and do interoception work. So she'd be in a better place with her chemistry, have some more tools in her toolbox, and then go do something that is the same pattern every time (fly, stay at a hotel, walk on the ship). Keep it low key, kwim? If there are three ports, she only goes off in one. So now she's having time without you. Let that stretch her a bit.

Well anyways, I'm sorry it's hard. I know that's not btdt, but those are the things on the forward end that have been working for us with a situation that probably would have turned that way. 

[Shelydon]

35 minutes ago, PeterPan said:

The times I've heard of this happening, it was in a dc (girl) on the spectrum. You want the nice answer, the technical answer, or the tough love answer? Remember, my ds is diagnosed asd2 so I live pretty hard in that world. It's precisely the reason I started traveling with him, because I was hearing stories like this. Anyways.

Technical answers.

-run genetics to look for underlying treatable issues (zinc receptor, nbpf3=b6 that requires p5p=pyrrole disorder, tph2=5htp, methylation defects, etc.). Treat all that obviously. There could be layers of chemical things making it really hard for her to get cognitively there or cognitively to use the tools she's being given. The b6/p5p issue is especially insidious and one to look into. 

-update evals to look at the autism question with someone who is an expert in girl autism.

-get an OT to work on interoception. 

Nice answers.

-How is transition to work, college, etc. going? Have you seen what your county board of developmental disabilities can do?

Tough love.

-Move her out. I've been given this advice for my ds and his anxiety is under control. I'm not saying I'm looking at that answer gleefully or that I'd do it before you do those other technical things I listed. But in reality, they're going to have to separate at some point (death happens) and putting them in a stable, consistent place that can be their stable, consistent place is a viable path forward. Or as someone put it to me, when do you want that to happen, when you die (abruptly) or sooner (with intention, planning, care).

I've seen people say in autism circles to use EMDR for this stuff and it still mystifies me. Interoception will allow her to begin to self advocate. Maybe there are some chemistry pieces you can find. And when you've done everything, I'd probably do some tough love. By a house across the street and get her a cat/dog. If she cannot work due to her anxiety, she ought to be getting qualified for services and may qualify for a group home placement. But I would do the interoception work and the genetics first to see what can improve.

Btw, if you want to talk travel, you could consider it. Get the chemistry under control first and do the interoception work. Once you have that piece, you could travel TOGETHER but use the travel (with a consistent pattern like cruising, cruising, did I mention cruising?) and use it to gradually build some separation/confidence. For us, cruising and the skills we build with it are as important as our school work honestly. It would probably be stressful at first (it was for my ds) but if you do it enough you might build up the confidence and skills. 

I know, I know, too expensive. Hurricane season has super cheap cruises, sometimes $250 a person for a week. The caribbean is overstocked with ships right now because some were repositioned from the Med due to the war. This is also driving down prices, meaning you might be able to find some deals and go a couple times on the cheap even this year. Hurricane season I'm talking September/october. That would give you time to run genetics, start some targeted supplements, and do interoception work. So she'd be in a better place with her chemistry, have some more tools in her toolbox, and then go do something that is the same pattern every time (fly, stay at a hotel, walk on the ship). Keep it low key, kwim? If there are three ports, she only goes off in one. So now she's having time without you. Let that stretch her a bit.

Well anyways, I'm sorry it's hard. I know that's not btdt, but those are the things on the forward end that have been working for us with a situation that probably would have turned that way. 

I've had genetic testing done and everything is normal, no issues at all. 

She will travel anywhere and do anything as long as a parent is with her, so actual going places is not a problem, it's separating from parents that causes the extreme anxiety and panic attacks. 

In my state, all services are tied to schools and she is a homeschooled student so there aren't any services available for her at all. 

She desperately wants to do all of the things, she has great GPA, and excellent test scores and is being heavily recruited by colleges across the nation, but there's no way she's going to be able to go to college because I can't go with her. Right now she can't even stay at home without a parent there, much less leave the house without a parent and go somewhere. 

Definitely can't afford to drop a million dollars on the house across the street. 😳😄 We've been in our home for 30 years and housing prices have gone up tinfold in that time. 

She definitely does not have autism, she's had full psychological and psychiatric evaluations and has been evaluated by a pediatrician who is also an expert in autism. 

If Mom and Dad are around, she's the most normal outgoing teen on the planet. 

I haven't heard of the OT angle off to look. 

 

[Ottakee]

Was there a trauma situation that led to the extreme anxiety?

Have you consulted a different psychiatrist and/or tried different classes of medications?  If the current plan is not helping then I would be looking at other med options.

yoga/breathing techniques can be helpful.

have you tried counseling either with her or for the parents?  Learning techniques to make sure you are not unintentionally feeding the anxiety.  
 

To be blunt, as an educator for students 17-26 with special needs, we can often identify how parents are unintentionally feeding the problem.   We are pretty tough love about it.  We start very small and build on successes.  We talk students through problem solving a situation, etc.  we have many students with severe anxiety that we see great growth in over the year.   From a student that broke out in profuse sweating at the mere thought of riding the public bus with a group to a few months later riding it all over town on his own.

[freesia]

Just now, Ottakee said:

Was there a trauma situation that led to the extreme anxiety?

Have you consulted a different psychiatrist and/or tried different classes of medications?  If the current plan is not helping then I would be looking at other med options.

yoga/breathing techniques can be helpful.

have you tried counseling either with her or for the parents?  Learning techniques to make sure you are not unintentionally feeding the anxiety.  
 

To be blunt, as an educator for students 17-26 with special needs, we can often identify how parents are unintentionally feeding the problem.   We are pretty tough love about it.  We start very small and build on successes.  We talk students through problem solving a situation, etc.  we have many students with severe anxiety that we see great growth in over the year.   From a student that broke out in profuse sweating at the mere thought of riding the public bus with a group to a few months later riding it all over town on his own.

Yes. Has the counseling worked on slowly building up her tolerance for separation? Never separating just feeds the anxiety. The goal is to challenge below the level of panic and rebuild the brain connections by having her reflect on how it was okay. I love the book Freeing Your Child From Anxiety for understanding this. 

[Shelydon]

4 minutes ago, Ottakee said:

Was there a trauma situation that led to the extreme anxiety?

Have you consulted a different psychiatrist and/or tried different classes of medications?  If the current plan is not helping then I would be looking at other med options.

yoga/breathing techniques can be helpful.

have you tried counseling either with her or for the parents?  Learning techniques to make sure you are not unintentionally feeding the anxiety.  
 

To be blunt, as an educator for students 17-26 with special needs, we can often identify how parents are unintentionally feeding the problem.   We are pretty tough love about it.  We start very small and build on successes.  We talk students through problem solving a situation, etc.  we have many students with severe anxiety that we see great growth in over the year.   From a student that broke out in profuse sweating at the mere thought of riding the public bus with a group to a few months later riding it all over town on his own.

No trauma --. That's one of the reasons she's had extensive medical testing because our doctor assumed it was something physiological like Lyme disease initially. 

She has been through four psychologists and two psychiatrists is on three different medications

[Ottakee]

1 minute ago, Shelydon said:

No trauma --. That's one of the reasons she's had extensive medical testing because our doctor assumed it was something physiological like Lyme disease initially. 

She has been through four psychologists and two psychiatrists is on three different medications

Have they checked for PANDAS?  Could the anxiety be a form of OCD?

Have you tried different classes of meds such as mood stabilizers and not just anti anxiety meds?

[Shelydon]

2 minutes ago, freesia said:

Yes. Has the counseling worked on slowly building up her tolerance for separation? Never separating just feeds the anxiety. The goal is to challenge below the level of panic and rebuild the brain connections by having her reflect on how it was okay. I love the book Freeing Your Child From Anxiety for understanding this. 

Yes, but it does not work. If there is a small success, two days later she's back in ground zero.

She has learned all of the techniques, can logically explain all the things, can tell you the steps in the methods, but cannot stop full blown aggressive panic attacks. 

At this point she's threatening to harm/kill herself if she has another panic attack to stop the anxiety. 

[Shelydon]

2 minutes ago, Ottakee said:

Have they checked for PANDAS?  Could the anxiety be a form of OCD?

Have you tried different classes of meds such as mood stabilizers and not just anti anxiety meds?

We have only tried SSRIs. Her psychiatrist is hesitant to move to other things because they are impossible to discontinue once you start them and she is young.  Pandas has been ruled out

[PeterPan]

Just now, Shelydon said:

At this point she's threatening to harm/kill herself if she has another panic attack to stop the anxiety. 

Retained reflexes can cause extreme reactions. So look for an OT who is trained in integrating retained reflexes (I like MNRI, but there are several systems) and also an OT (who might not be the same person) trained in Interoception. It would be interesting to see what the testing for retained reflexes show up. Some of them could be exacerbating this.

[PeterPan]

1 minute ago, Shelydon said:

We have only tried SSRIs. Her psychiatrist is hesitant to move to other things because they are impossible to discontinue once you start them and she is young. 

Do you have the raw and data and was it extensive testing or was it targeted testing like in a hospital? Hospitals tend to look for syndromes and specific things. If you have more extensive data, you can run it through an engine to look for things that got missed. Often the mood stabilizers will have genetic studies to show probability of success, so you could correlate the gene and the med to feel more confident it's a good choice.

And I don't know how 18 and suicidal is young. I put my ds on a really strong med last year that other psychs had refused to give him. It has been AMAZING. I don't CARE that he won't get off, because it was life altering for good.

Sometimes psychs are really slow to do stuff. I was told they get burnt by negative reactions. When they don't use any common sense or actual chemistry and genetics to guide them, they get really wrong options that have horrible consequences. That's why they get hesitant to do stuff. But if you KNOW it's the right med and you have the data to prove it, then it's the right med, which means you need a new pdoc. That's what we had to do. Then when she left the practice and we were without a while, we ended up with another who was like oh what about counseling and aba because that med is horrible... We finally found our previous pdoc and moved to the new practice. There definitely are pdocs who are just plain hesitant to do the hard stuff. 

[Ottakee]

4 minutes ago, Shelydon said:

We have only tried SSRIs. Her psychiatrist is hesitant to move to other things because they are impossible to discontinue once you start them and she is young.  Pandas has been ruled out

That is untrue.  My own children have been on other meds and started and stopped them.  Yes, you might have to taper them slowly, etc but it can and is done.

A med like Lamictal is known to help anxiety but is a different class of meds.  Or an SNRI might help.

if she is honestly suicidal then more might be needed….like inpatient.

[PeterPan]

8 minutes ago, Shelydon said:

She has learned all of the techniques, can logically explain all the things, can tell you the steps in the methods, but cannot stop full blown aggressive panic attacks. 

We talk about the Zones of Regulation, but the idea is the person is probably getting clues BEFORE this happens. That panic attack and melt down is red zone, game over, complete loss of regulation. But she was in yellow zone before that (where odds are she lives a lot of the time) and didn't get WARNING before her body went red zone.

So interoception work helps them catch into their body clues, the signals, so they can get more regulated. It took a lot of interoception work for my ds to realize what he needed to do to be GREEN zone. Once he was green zone and knew how to be there, he could then feel when we was going YELLOW zone and head off the RED zone. But your dd's body is going there, taking her along for the ride like some kind of tsunami. You need the process that slows that down, and it's her self awareness of what makes her feel good.

I'd probably start with the OT eval. You may need two OTs and I would open yourself up to that. You can go on the interoception FB group and get someone to do telehealth for the interoception work. You can get a local OT for the retained reflexes because that will be easier to find. You can do them concurrently. It takes about 40 days straight of work to integrate retained reflexes and that two months is about what it will take to get through the jist of the interoception curriculum.

[PeterPan]

4 minutes ago, Ottakee said:

That is untrue.  

Bingo. You have to question EVERYTHING. We've had so many incorrect answers over the years from so many professionals, I trust no one anymore. 

[KSera]

11 minutes ago, Shelydon said:

She has learned all of the techniques, can logically explain all the things, can tell you the steps in the methods, but cannot stop full blown aggressive panic attacks. 

At this point she's threatening to harm/kill herself if she has another panic attack to stop the anxiety. 

I’m sorry she’s in such a state. That’s so hard 😥. I’m wondering if any therapist has treated the panic attacks as not an urgent thing to avoid at all costs. I know the psychiatrists will usually treat it that way, but there is nothing as effective for panic disorders as taking the power out of them by full, radical acceptance of the feeling. I know that’s so, so hard for someone going through it because it feels so awful and unbearable, but it’s that very fear of the feeling that fuels it. The best thing I know for panic attacks is  Claire Weekes audio series “Pass Over Panic”. She is so logical and explains it so well and all in a soothing, friendly voice. I highly recommend. 
 

For something completely different, with how distressed your dd is, I would consider something like ketamine assisted psychotherapy. That would be expensive, but is an avenue to explore. It’s more known for treatment resistant depression, but can be used for anxiety sometimes as well. 

[pinball]

21 minutes ago, Shelydon said:

No trauma --. That's one of the reasons she's had extensive medical testing because our doctor assumed it was something physiological like Lyme disease initially. 

She has been through four psychologists and two psychiatrists is on three different medications

It sounds like it started during Covid, based on her age and length of time.

Has that been explored? 

[PeterPan]

Benzos I can understand being slow on and some docs seem pretty unimaginative, just slapping them on anyone without digging. So if the pdoc was considering benzos and that's what he likes after SSRIs, then I can see why he's hesitant. However there are MORE OPTIONS. You may need a new pdoc. 

 

[PeterPan]

Just now, pinball said:

It sounds like it started during Covid, based on her age and length of time.

That's an interesting connection, so we should back up and ask that question. Are these symptoms she's had her whole life or are they recent, just from the last few years?

[Shelydon]

4 minutes ago, KSera said:

I’m sorry she’s in such a state. That’s so hard 😥. I’m wondering if any therapist has treated the panic attacks as not an urgent thing to avoid at all costs. I know the psychiatrists will usually treat it that way, but there is nothing as effective for panic disorders as taking the power out of them by full, radical acceptance of the feeling. I know that’s so, so hard for someone going through it because it feels so awful and unbearable, but it’s that very fear of the feeling that fuels it. The best thing I know for panic attacks is  Claire Weekes audio series “Pass Over Panic”. She is so logical and explains it so well and all in a soothing, friendly voice. I highly recommend. 
 

For something completely different, with how distressed your dd is, I would consider something like ketamine assisted psychotherapy. That would be expensive, but is an avenue to explore. It’s more known for treatment resistant depression, but can be used for anxiety sometimes as well. 

That is what we have been trying with a therapist the past couple of months, just accepting the fact that panic happens. I will take a look at the series, it sounds promising. 

Edited June 11 by Shelydon

[PeterPan]

3 minutes ago, KSera said:

I’m wondering if any therapist has treated the panic attacks as not an urgent thing to avoid at all costs. I know the psychiatrists will usually treat it that way, but there is nothing as effective for panic disorders as taking the power out of them by full, radical acceptance of the feeling. I know that’s so, so hard for someone going through it because it feels so awful and unbearable, but it’s that very fear of the feeling that fuels it. The best thing I know for panic attacks is  Claire Weekes audio series “Pass Over Panic”. She is so logical and explains it so well and all in a soothing, friendly voice. I highly recommend. 

I was just googling to see if there are any studies connecting interoception and panic attacks. I just wanted to clarify that the hits I'm seeing, like "interoceptive exposure" are NOT what I was talking about. I was talking about Kelly Mahler's work on interoception, which is much more in the vein of what @KSera is referring to. Mahler and the interoception work she has developed say that ALL emotions are ok and we are trying to become more aware, without judgment, and make choices that make us feel good.

[Shelydon]

4 minutes ago, pinball said:

It sounds like it started during Covid, based on her age and length of time.

Has that been explored? 

 

4 minutes ago, PeterPan said:

Benzos I can understand being slow on and some docs seem pretty unimaginative, just slapping them on anyone without digging. So if the pdoc was considering benzos and that's what he likes after SSRIs, then I can see why he's hesitant. However there are MORE OPTIONS. You may need a new pdoc. 

 

Yes, it started during Covid and all of her providers have made that connection.

Right now all of our local psychiatrists have a waiting list of 6 months. We use a private pay psychiatrist at $250 each time we see him which is why we are able to get in. Getting on a wait list is certainly an option, but it's not going to be quick. 

[Shelydon]

Just now, PeterPan said:

I was just googling to see if there are any studies connecting interoception and panic attacks. I just wanted to clarify that the hits I'm seeing, like "interoceptive exposure" are NOT what I was talking about. I was talking about Kelly Mahler's work on interoception, which is much more in the vein of what @KSera is referring to. Mahler and the interoception work she has developed say that ALL emotions are ok and we are trying to become more aware, without judgment, and make choices that make us feel good.

So if the choice that makes you feel good is staying within 3 ft. Of mom, then that is a choice you make?  

I look up her name and information and see if it would work for us

[KSera]

Another thought I just had is considering a beta blocker while she works on this (if she’s not already on one and doesn’t have hypotension). Beta blockers keep heart rate down, so even with some other uncomfortable panic symptoms kicking in, the heart rate won’t take off and can be more manageable for her to learn to accept the feeling when her heart isn’t racing so fast. And I can’t tell you the degree to which accepting the feeling when it starts just throws an instant bucket of water on it and it just disappears rather than ramping up. 
 

On the Covid idea, very physical anxiety is a common post Covid thing. People often say “it feels chemical” and have no specific worries associated. Your dd’s sounds a little different with the separation trigger, but perhaps it happened the first time when you were not there and then she became scared of you not being there as a secondary thing?

[PeterPan]

Just now, Shelydon said:

Yes, it started during Covid and all of her providers have made that connection.

Ok, so that's a more interesting ball of wax! So do you think she either had a reaction to the vaxes or got the disease? Are they directly correlating it to the disease or was it a larger reaction to the stress of the time with no virus?

Have you compared her meds to the lists for long covid? Some of the SSRIs make the inflammation worse.

[Shelydon]

1 minute ago, KSera said:

Another thought I just had is considering a beta blocker while she works on this (if she’s not already on one and doesn’t have hypotension). Beta blockers keep heart rate down, so even with some other uncomfortable panic symptoms kicking in, the heart rate won’t take off and can be more manageable for her to learn to accept the feeling when her heart isn’t racing so fast. And I can’t tell you the degree to which accepting the feeling when it starts just throws an instant bucket of water on it and it just disappears rather than ramping up. 
 

On the Covid idea, very physical anxiety is a common post Covid thing. People often say “it feels chemical” and have no specific worries associated. Your dd’s sounds a little different with the separation trigger, but perhaps it happened the first time when you were not there and then she became scared of you not being there as a secondary thing?

She is on a beta blocker, but the dose may not be high enough because the tiny dose makes her very tired. 

She didn't actually have covid until 2022, but they anxiety started in 2020. 

[gardenmom5]

I have one with severe anxiety, comorbid with other disorders. (some of which the providers didn't' actually tell me (re: ODD) - but came out when we had one provider review everything.)  We've been through it with testing and Rx (some made him worse), up to pediatric neurologists.  nothing. zip, zilch, nada. Tried A LOT of different things.  on top of that - he is *extremely* resistant.

one thing he wouldn't stick with - but is supposed to be very helpful for anxiety is vagus nerve stimulation.  (there have been many studies).  The vagus nerve is the largest in the body and connects everything - see Polyvagal Theory by Dr. Stephan Porges.  We have this stimulator rec'd by one of drs from vagus.net.  (ONLY use on the left ear - the right ear where the vagus nerve passes continues to the heart and you don't want that.)   There are also of videos of other ways to stimulate the vagus nerve for free.  I really should try it for sleep . . . (studies on that too.) I've been too lazy . . He has a small tragus so it was hard to make it stay - we used a cotton headband (no metal.)

FINALLY we are getting progress from Network Care. It came from chiropractic - NO joint manipulation, it's a nerve stimulation by light touch.  It sounds hokey, but it is working for him. (slowly).  We first did it a few years ago, once a week - he was calming down too fast and it freaked him out.  He was born anxious, so not being anxious - made him anxious and he quit. refused to go. threatened to get out of the car at a stoplight, refused to get in the car. This was less than three months after we started.   He was finally willing to go a year ago, and has been consistently doing 2x per week ever since (baring vacations and illnesses).  and we are seeing progress where things just . . magically improve.  hehas started doing things he wouldn't\/couldn't do before.  thins he never would have been able to do two years ago.  I'm also seeing signs of another break through coming.  we've seen progress with him being able to stick with things (he couldn't before).   

here's a great drawing done by a neuro to determine stress levels.
I can remember times that for me it was spinning.  . . 

[Shelydon]

Just now, gardenmom5 said:

I have one with severe anxiety, comorbid with other disorders. (some of which the providers didn't' actually tell me (re: ODD) - but came out when we had one provider review everything.)  We've been through it with testing and Rx (some made him worse), up to pediatric neurologists.  nothing. zip, zilch, nada. Tried A LOT of different things.  on top of that - he is *extremely* resistant.

one thing he wouldn't stick with - but is supposed to be very helpful for anxiety is vagus nerve stimulation.  (there have been many studies).  The vagus nerve is the largest in the body and connects everything - see Polyvagal Theory by Dr. Stephan Porges.  We have this stimulator rec'd by one of drs from vagus.net.  (ONLY use on the left ear - the right ear where the vagus nerve passes continues to the heart and you don't want that.)   There are also of videos of other ways to stimulate the vagus nerve for free.  I really should try it for sleep . . . (studies on that too.) I've been too lazy . . He has a small tragus so it was hard to make it stay - we used a cotton headband (no metal.)

FINALLY we are getting progress from Network Care. It came from chiropractic - NO joint manipulation, it's a nerve stimulation by light touch.  It sounds hokey, but it is working for him. (slowly).  We first did it a few years ago, once a week - he was calming down too fast and it freaked him out.  He was born anxious, so not being anxious - made him anxious and he quit. refused to go. threatened to get out of the car at a stoplight, refused to get in the car. This was less than three months after we started.   He was finally willing to go a year ago, and has been consistently doing 2x per week ever since (baring vacations and illnesses).  and we are seeing progress where things just . . magically improve.  hehas started doing things he wouldn't\/couldn't do before.  thins he never would have been able to do two years ago.  I'm also seeing signs of another break through coming.  we've seen progress with him being able to stick with things (he couldn't before).   

here's a great drawing done by a neuro to determine stress levels.
I can remember times that for me it was spinning.  . . 

Super interesting! Off to Google and see what I can find. All of this is something we have definitely never tried before. 

I wouldn't say she is resistant, she's actually desperate to feel better and go and do things like a normal teenager, but we just can't find anything. It makes her feel normal.

[KSera]

2 minutes ago, Shelydon said:

She is on a beta blocker, but the dose may not be high enough because the tiny dose makes her very tired. 

She didn't actually have covid until 2022, but they anxiety started in 2020. 

Darn, I was hopeful a beta blocker would be an easy thing to try. Would she be willing to increase dose over summer? Typically people adapt to the tiredness side effect and it gets less over time. That’s probably easier for someone older than a teenager though. 
 

Perhaps she had an asymptomatic infection in 2020? No way to know though, so probably somewhat irrelevant. Did the anxiety change at all after her 2022 infection?

[Terabith]

34 minutes ago, Shelydon said:

We have only tried SSRIs. Her psychiatrist is hesitant to move to other things because they are impossible to discontinue once you start them and she is young.  Pandas has been ruled out

That is, to be blunt, completely bonkers.  
 

SSRIs are not working.  The other meds are NOT inherently any harder to discontinue than SSRIs.  She is basically completely nonfunctional and debilitated by anxiety.  And they have not tried freaking buspar or tricyclic antidepressants or gabapentin or mood stabilizers or anything???  Wellbutrin?  SNRIs?  There’s a world of chemistry that can be tried and they are letting an entire family be held hostage by anxiety?  
 

Have you considered a second opinion from a different psychiatrist?  Because this is nuts that they have not tried anything other than SSRIs.  

[PeterPan]

9 minutes ago, Shelydon said:

She didn't actually have covid until 2022, but they anxiety started in 2020. 

 

4 minutes ago, KSera said:

Perhaps she had an asymptomatic infection in 2020? No way to know though, so probably somewhat irrelevant. Did the anxiety change at all after her 2022 infection?

And did she have *low level* anxiety before? 

They're using fluvoxamine for long covid so it would be another easy ask thing to try. Some of the SSRIs can make brain inflammation from covid worse. It would be good to sort out whether this is a long covid situation (inflammation). 

I'm just trying to wrap my brain around this. She had low level symptoms before that went off the charts with the stress of those years? She had no symptoms and got exposed to the virus and has LC type symptoms? Just thinking out loud.

[Terabith]

What about TMS or ketamine?  

[PeterPan]

Zinc affects gaba and can tamp down anxiety. It might be a piece to check. Crazy cheap ($4 a bottle at kroger) and you just ramp up till she gets nausea then back off. Could be interesting.

 

[PeterPan]

19 minutes ago, Shelydon said:

all of our local psychiatrists have a waiting list of 6 months.

You can do pdocs within state via tele. 

[Terabith]

I agree about OT, by the way.  That was the most effective thing we did for my oldest’s anxiety.  

[Shelydon]

3 minutes ago, Terabith said:

That is, to be blunt, completely bonkers.  
 

SSRIs are not working.  The other meds are NOT inherently any harder to discontinue than SSRIs.  She is basically completely nonfunctional and debilitated by anxiety.  And they have not tried freaking buspar or tricyclic antidepressants or gabapentin or mood stabilizers or anything???  Wellbutrin?  SNRIs?  There’s a world of chemistry that can be tried and they are letting an entire family be held hostage by anxiety?  
 

Have you considered a second opinion from a different psychiatrist?  Because this is nuts that they have not tried anything other than SSRIs.  

She does take Busparone with the SSRI. 

I've read that the SNRIs are crazy hard to discontinue. She seems to be quite sensitive to medication, the first several SSRI drugs that we tried resulted in extreme depression, which makes everybody a little hesitant to try something. 

[Shelydon]

5 minutes ago, PeterPan said:

 

And did she have *low level* anxiety before? 

They're using fluvoxamine for long covid so it would be another easy ask thing to try. Some of the SSRIs can make brain inflammation from covid worse. It would be good to sort out whether this is a long covid situation (inflammation). 

I'm just trying to wrap my brain around this. She had low level symptoms before that went off the charts with the stress of those years? She had no symptoms and got exposed to the virus and has LC type symptoms? Just thinking out loud.

No symptoms at all. No low-level anxiety, and no illnesses in 2020 or 2021 because we were masking.  I'll grab some zinc

[Shelydon]

6 minutes ago, Terabith said:

What about TMS or ketamine?  

We have not tried this at all, so this would definitely be something to look at. 

[Shelydon]

3 minutes ago, PeterPan said:

You can do pdocs within state via tele. 

That's true. I had not considered it. I wonder if I can find a recommendation for a truly excellent physician somewhere

[gardenmom5]

4 minutes ago, Shelydon said:

Super interesting! Off to Google and see what I can find. All of this is something we have definitely never tried before. 

I wouldn't say she is resistant, she's actually desperate to feel better and go and do things like a normal teenager, but we just can't find anything. It makes her feel normal.

dudeling is a particularly difficult case.  Some of his drs threw up their hands in frustration while trying to work with him - one went so far as to refuse to take him as a patient because of how uncooperative he could be.  He'd refuse to answer questions - and get angry at me if I did. . . Sometimes it was a game to him, and sometimes it was a way he tried to control his anxiety.

when he was really young, he wouldn't stand on a scale - it moves and freaked him out. (my pediatrician of 25 years!!!!! from the day 1dd was born!! had a hissy fit! - last time we ever saw him. as much as I loathe search for drs, that was it.)   I found a dr who worked magic with him (not as much as he needed, but he made some great progress with her.).  she dealt with the scale thing by me holding him on it, then just me - and doing math.  eventually he'd stand on it by himself (it was still years.) and his little smile as he'd touch the wall . . . 
 
 

[Terabith]

1 minute ago, Shelydon said:

She does take Busparone with the SSRI. 

I've read that the SNRIs are crazy hard to discontinue. She seems to be quite sensitive to medication, the first several SSRI drugs that we tried resulted in extreme depression, which makes everybody a little hesitant to try something. 

Yes, given her non response to SSRIs and the issues with discontinuing SNRIs, I would try other stuff first.  But gabapentin was miraculous for my anxiety.  Mood stabilizers aren’t that hard to come off of.  Benzos could be used as a rescue med to use for therapy.  Older classes of antidepressants like tricyclics are known to be more effective, just have less of a safety profile and potential for more side effects.  This seems like a case that merits more aggressive treatment than she is getting.  

[gardenmom5]

9 minutes ago, Terabith said:

That is, to be blunt, completely bonkers.  
 

SSRIs are not working.  The other meds are NOT inherently any harder to discontinue than SSRIs.  She is basically completely nonfunctional and debilitated by anxiety.  And they have not tried freaking buspar or tricyclic antidepressants or gabapentin or mood stabilizers or anything???  Wellbutrin?  SNRIs?  There’s a world of chemistry that can be tried and they are letting an entire family be held hostage by anxiety?  
 

Have you considered a second opinion from a different psychiatrist?  Because this is nuts that they have not tried anything other than SSRIs.  

Teens and SSRIs can be a dangerous combination.  There are warnings for a reason.

when 2dd found out dudeling had been put on one - she called me (she's in another state) to express her concerns. She's a PharmD and sees the warnings come through.  he became suicidal - which is exactly what she had been afraid of.  The psychiatrist was very "oh, that's not a high enough dose to even be doing anything for the anxiety" and wanted to raise it.  The neurologist who prescribed it, wouldn't return my phone calls!  I took him off - it took a week, but the suicidal ideation that had been nearly constant, went away.

[PeterPan]

Ok, I'm gonna throw this out as a patch. I'm not saying it replaces getting a new pdoc and I'm not saying it replaces double checking the genetics (which assuredly have something interesting in there if enough genes were run) and I'm NOT saying not to check her in for inpatient care if the situation warrants. 

Chamomile bumps GABA so it can be another occasional tool. We know in our heads chamomile calms people down, but it works but affecting GABA, the same stuff @Terabith is talking about. So if catch something before it gets too extreme, maybe a cup of chamomile tea could be a low key option. Not a replacement for another else, but an additional tool. 

If you do chamomile every day, it's wicked, wicked hard to get off. It also has a long hang time in the system so you should anticipate her to be tired for a significant time afterward. But it's a tool for occasional use.

 

[gardenmom5]

4 minutes ago, Terabith said:

Yes, given her non response to SSRIs and the issues with discontinuing SNRIs, I would try other stuff first.  But gabapentin was miraculous for my anxiety.  Mood stabilizers aren’t that hard to come off of.  Benzos could be used as a rescue med to use for therapy.  Older classes of antidepressants like tricyclics are known to be more effective, just have less of a safety profile and potential for more side effects.  This seems like a case that merits more aggressive treatment than she is getting.  

interesting. . .  I was given gabapentin for the pain in a joint likely caused by RA.  (just one obviously swollen and super painful joint. now, it's swollen, but doesn't feel like someone whacked it with a hammer while it was on a rock.)
EBV can cause/trigger RA . . . . joy.

[PeterPan]

Have they run her thyroid and vitamin D? And is the vitamin D going up with the supplements if she was low?

[gardenmom5]

Has she tried yoga?  yoga stimulates the parasympathetic nervous system, and that is calming.
some good youtube channels are Yoga with Adrienne, and Yoga with?by? Kassandra.

[gardenmom5]

6 minutes ago, PeterPan said:

Have they run her thyroid and vitamin D? And is the vitamin D going up with the supplements if she was low?

D3 is so underrated.  one of dd's classes, they talked about how Vitamin D has been reclassified as a hormone, how it's made, what it does . . . 
 

I second the suggestion to get it tested - it should be >50 to be considered healthy levels.

eta: if supplementing D3, use one combined with K2 as it will absorb better.

Edited June 11 by gardenmom5

[PeterPan]

42 minutes ago, Shelydon said:

So if the choice that makes you feel good is staying within 3 ft. Of mom, then that is a choice you make?  

I look up her name and information and see if it would work for us

Look, I'm not the one to ask, because my answer is going to be yes. 😉 Think about it. The stress comes from thinking she CAN'T or that she's not normal or OK if she needs that. But what happens if you defang that? What happens if you say fine, no big deal, join me, I love you, we're cool? 

My ds wet till this past year, so age 14 ½. That's a long time that I spent taking something that everyone says isn't normal, isn't ok, that people would take PRIDE in saying they FIXED in their kids with their awesome parenting techniques, and saying fine if that's where you're at and you can't change it then it's OK.

So yes, my answer is to say it's ok. BUT then you get her more tools. Fresh psych eval with an autism expert, fresh look at genetics because something got missed, new pdoc, work on retained reflexes and interoception work. You accept what you can't change. And I would go schedule for yourself something YOU WANT TO DO and go do it. I've been hanging on this list that does "cookie college" where the people bring cookies to share for a half day. It would require an overnight. And I'd tell her you're going and that she can go along or not as she chooses. And you go live your life.

And I'd go book a cruise. And I'd tell her you're going off in every port and she can go off or stay on the ship as she chooses. And go to the dance classes and the shows and whatever you want, and she can go or stay in the cabin as she chooses.

I've known some teens who were really crunchy and came to the other side. It's pretty ugly in the middle and something will work or improve (with time or treatments) that comes to the other side. The nice thing about the interoception work is giving her the tools to realize what makes her feel good and maybe give the docs data she has that could help them. Or she realizes her tools to feel better. Or something else you're trying will work. 

But yeah, what you can't change, you accept.

[freesia]

1 hour ago, Shelydon said:

Yes, but it does not work. If there is a small success, two days later she's back in ground zero.

She has learned all of the techniques, can logically explain all the things, can tell you the steps in the methods, but cannot stop full blown aggressive panic attacks. 

At this point she's threatening to harm/kill herself if she has another panic attack to stop the anxiety. 

Oh, I’m so sorry. They’ve looked at OCD, right?

[PeterPan]

Just now, freesia said:

Oh, I’m so sorry. They’ve looked at OCD, right?

They can use fluvoxamine for this, which interestingly helps with anxiety *and* covid brain inflammation. Just another example of a med the docs haven't tried...