Separation anxiety in teen

[Shelydon]

Over the course of Covid lockdown my normally outgoing 14-year-old has developed severe separation anxiety. She is simply completely unable to do anything unless I am present. We were home for 6 months then returned to homeschool co-op twice a week for masked classes. She was able to attend class, but I was in the building the entire time. Everyone in our house is now vaccinated and she would love more than anything to go hang out with friends, but she literally cannot be away from me. We consulted with a psychiatrist two months ago who gave us some tips and ideas, but did not recommend any sort of medication. Counseling was recommended as a possibility but counselors in our area are booked 9 months out. My teen is miserable because she can't go do anything fun but she has been looking forward to for over a year. I am miserable because I can't even go put gas in the car without having someone with me. I haven't been able to go to any normal appointments such as the dentist or doctor because she has to be with me. I really need to have surgery this summer but I'm not going to be able to because of her anxiety. I thought about trying genetic testing to see if there was something we could supplement her diet with that would help. We are trying things like having her walk down the block 100 ft and then come back. Any other ideas of things we could try? She's desperate to get back to normal.

Edited June 19, 2021 by Shelydon
more info

[Drama Llama]

We’ve had that with my almost 14 year old, although it’s not as severe and more focused on his brother than on me.

Meds have definitely helped, therapy has helped,  as has setting clear expectations that we will take this or that babystep, and then holding firm.  He’s doing better.

 

[Frances]

What about online counseling if local counselors are all booked?

[Terabith]

I think meds are definitely merited here.  

[freesia]

Exposure therapy. Make a list of the baby steps to the ultimate goal. You want her to do small things without panic to require her brain that it’s ok. So she does the small step and then reflects that whatever she was afraid of didn’t happen. Then she does the next step. Have a reward that she wants at the end. 

I would keep pursuing a talk therapist ( CBT preferably.)

L-theanine is a good supplement for mild anxiety. 

[kristin0713]

She is a tad old to consider PANS/PANDAS but have you looked into that?  Does she have any other symptoms that she didn't have before? (Food restriction, tics, any behavior that is different or bizarre?)  I'm mentioning it because you said it just developed during lockdown and it is extreme. 

Does she have any other symptoms of OCD?  This video  talks about OCD symptoms in teens. This one is specific to separation anxiety but is longer. 

[Ottakee]

One thing that might help is to make a list each day of one new, scary thing she did.   I did this when horseback riding.  I would list every new thing I did, no matter how small....like passing a mail truck or a plastic bag on the ground.   Over time all of those baby steps add up....and a written list can be helpful to refer to.

[Farrar]

Seconding all these things. Rule out PANDAS/PANS because separation anxiety is a huge component of that. Keep looking for a therapist, book one for months from now, and see if you can find one online. And then start in on exposure therapy and really keep at it. Every day a tiny incremental baby step.

I'm so sorry you're dealing with this.

What does she do when you leave? How bad is her reaction?

[livetoread]

Teaching her some simple relaxation techniques like slow deep breathing and focusing on relaxing places where she carries tension is a good idea before she starts the exposure therapy. That way, she can pair the breathing with the exposure which makes it go faster. Her body needs to relearn that these things are not scary, and keeping it relaxed while doing the scary things helps. There are good mindfulness/anxiety apps out there like Calm she can use to work on it. Taking the baby steps towards exposure is important because every time she avoids something because she is overwhelmed, she is reinforcing the fear. Some therapists use flooding where you basically do the scary thing all at once, but I wouldn't suggest this without professional help. Baby steps with breathing is quite doable at home though.

[Shelydon]

11 hours ago, Frances said:

What about online counseling if local counselors are all booked?

That's a good idea

[Shelydon]

5 hours ago, freesia said:

Exposure therapy. Make a list of the baby steps to the ultimate goal. You want her to do small things without panic to require her brain that it’s ok. So she does the small step and then reflects that whatever she was afraid of didn’t happen. Then she does the next step. Have a reward that she wants at the end. 

I would keep pursuing a talk therapist ( CBT preferably.)

L-theanine is a good supplement for mild anxiety. 

This is what we are doing. At the rate things are moving it will take years . 

[Shelydon]

2 hours ago, Ottakee said:

One thing that might help is to make a list each day of one new, scary thing she did.   I did this when horseback riding.  I would list every new thing I did, no matter how small....like passing a mail truck or a plastic bag on the ground.   Over time all of those baby steps add up....and a written list can be helpful to refer to.

That's a good idea!

[Drama Llama]

I want to come back and offer some of the thing that I think worked here.  I say "think" because we had a lot of things going on.  My kid has been on meds, and therapy.  Also, since grief is clearly the trigger for my kid, just getting some more distance from the loss helped.  So, I can't say "this worked" or "this didn't work".  I can only say "these are things we did" and "something worked".  For context, this morning my anxious kid managed to play a game of baseball, while his younger brother was swimming in a swim meet a half hour away.  So, we've seen a lot of progress.  I'll also note that while that's huge progress, we've still got the structure of a very familiar activity (baseball), adults here who he trusts, and lots of checking in. 

I think of my son as a lot like a young toddler who sort of toddles away, and then come back to home base.  He had some separation anxiety when he was little, and it was developmentally more appropriate, and he did a ton of that exploring, and then checking in.  He was also a toddler who loved the swing, would spend forever on the swing, and several people commented to me that it's that same cycle of you move away, you come back to mom, repeated over and over.  

So, when it became clear that this was a struggle, we looked at ways to recreate that separating and coming back feeling.  One thing we did was that every morning, I'd go for a walk with my boys, and they bring either their bikes or rollerblades.  They ride or skate ahead, and then come back to me and then ride behind, and then come back to me.  At first they were checking in constantly, but the distances got longer over time.  Also, I'd start to see him "racing" his younger brother, and moving further ahead from him.   Similarly, we worked on walking the dog, with him going a little further away.  So, maybe we'd go to the park, and he'd walk around the perimeter while his brother played basketball, and the distance would get longer.

The second thing that we did, that we didn't do for this reason, but might have helped, was that we did a lot of virtual communication inside the house.  I'm a teacher, and I've been virtual all year, and the rule is that if I'm in my office teaching, no one is coming in or out.  It's just too distracting.  Often, when I was teaching, I'd have my younger kid (keep in mind that my kid has more anxiety about being separated from his brother than from me) sitting next to me, while my older kid (the one with separation anxiety) was in the kitchen.  They'd message back and forth, and turn on their cameras, and interact, and it was good practice for that sense of "I can still reach him when I need him".  So, if she's willing to do things like read in the family room while you cook in the kitchen, having her text you or face time you, rather than coming to you, when her anxiety starts rising or if she needs something concrete, might help.

Finally, we worked hard on expanding the circle of people.  He didn't love being apart from his brother, but if he was with a handful of close family members, it was better.  So, practicing waiting in the car with Dad while you run a quick errand (maybe walking to the mailbox at first, and then into a store like 7 11 that has a glass front) could help.  

 

[Drama Llama]

23 minutes ago, Shelydon said:

This is what we are doing. At the rate things are moving it will take years . 

Medication might speed things up.  

[freesia]

36 minutes ago, BaseballandHockey said:

Medication might speed things up.  

I agree. 

Another thing is to examine yourself when it’s going on. Are you a non-anxious presence or is your dc triggering your own anxiety bc you are worried about the situation. Managing your own anxiety and presenting a calm can do attitude can help. 

Baseball’s examples are excellent. 

[Drama Llama]

9 minutes ago, freesia said:

Managing your own anxiety and presenting a calm can do attitude can help. 

This is so true.  My anxious kid is constantly looking at me for clues about whether something is anxiety provoking, and since I also have anxiety about being separated from my kids,  it's really easy for me to accidentally reinforce that.  

 

[katilac]

5 minutes ago, BaseballandHockey said:

Medication might speed things up.  

Yes.

OP, I would touch base with the psychiatrist - he gave you initial recommendations, you tried them, they are not working. He needs an update. If he doesn't hear from you, he can't advise next steps.

If unable to get in with they psych, I'd just bring her to her regular doctor. Explain that she has been struggling for months, has seen a psych but still needs help, and counseling is not available for a long time. Medical doctors routinely prescribe the most common and safe antidepressants and anxiety medication, it's not out of their wheelhouse. They will want to know what has already been tried (I'd bring notes just in case they want details). 

5 hours ago, kristin0713 said:

She is a tad old to consider PANS/PANDAS but have you looked into that?  Does she have any other symptoms that she didn't have before? (Food restriction, tics, any behavior that is different or bizarre?)  I'm mentioning it because you said it just developed during lockdown and it is extreme. 

Does she have any other symptoms of OCD?  This video  talks about OCD symptoms in teens. This one is specific to separation anxiety but is longer. 

Plus it wasn't sudden; it sounds like it developed over six months of lockdown in a global pandemic, and that pandemic is not over yet. A general physical, including bloodwork, is always a good idea, though. 

If the OP thinks OCS, a specific type of anxiety, is a possibility, that can be taken into account if they try meds, even without a dx. They can choose to start with an anti-depressant that's more likely to help with OCD, like Prozac. 

1 hour ago, Shelydon said:

This is what we are doing. At the rate things are moving it will take years . 

This is when I think it's a good idea to consider medicine. Clinical anxiety is not regular anxiety, and you cannot 'reason' yourself out of many of the accompanying fears and anxieties. I'm all about therapy and changing behaviors, but I'm not about spending years with something significantly affecting qualify of life when there's medication that might help. 

Best of luck!

[katilac]

1 hour ago, freesia said:

Another thing is to examine yourself when it’s going on. Are you a non-anxious presence or is your dc triggering your own anxiety bc you are worried about the situation. Managing your own anxiety and presenting a calm can do attitude can help.  

Y'all, I had a very long, thoughtful, and brilliant reply, and the board ate it. 

The short version: yes, and also no. Try not to feed into their anxieties,  but also make sure you aren't trying so hard that they think anxiety is something that should always be hidden. Don't be so successful that they think it's wrong of them to worry or have anxiety. Recognizing and vocalizing our own anxieties can actually be a very powerful thing for children to see. All the more so if you or they or everyone in the room has actual clinical anxiety. 

I was helped a lot in young-ish adulthood by a pop psychology book (I know, I know), Feel the Fear and Do It Anyway, by Susan Jeffers. It's been decades since I read it, and I'm not so sure it was any of her specific techniques that helped me so much as the mere idea that it was okay to be afraid of something, okay to acknowledge it, okay to try something in spite of of it. When you're afraid to show fear, you will find yourself purposefully not doing things for that reason. When you are willing and able to acknowledge and vocalize your fear, you actually do a lot more, because you don't have to worry that someone will notice that you are afraid, because you have already acknowledged it. 

So, for me, coming from a mental place where putting on a good front translated into avoiding things I had anxiety about, I always lean toward acknowledging and vocalizing. Particularly for tweens and teens, who already know that certain fears aren't 'reasonable' and who are often feeling quite stupid about that fact. They need a lot of space to kind of acknowledge the existence and okay-ness of their unreasonable fears and anxieties before they can do the work of managing them (vs just suppressing them), and seeing others model that can be very empowering. 

OP, has she vocalized this anxiety to anyone other than you, maybe a peer? Would she be willing to do so? Texting can be a very low-key way to do this, "omg been in lockup so long idk if i remember how to be in a group" and maybe the convo gets a bit deeper and maybe it does not, maybe the other person agrees or maybe they can't wait to be in class, but there's still a certain amount of power in putting it out there. 

Edited June 19, 2021 by katilac

[itsheresomewhere]

Honestly, medication along with some vitamins that we know were a little off but still considered in the normal range have helped tremendously. 

[Shelydon]

7 hours ago, katilac said:

Yes.

OP, I would touch base with the psychiatrist - he gave you initial recommendations, you tried them, they are not working. He needs an update. If he doesn't hear from you, he can't advise next steps.

If unable to get in with they psych, I'd just bring her to her regular doctor. Explain that she has been struggling for months, has seen a psych but still needs help, and counseling is not available for a long time. Medical doctors routinely prescribe the most common and safe antidepressants and anxiety medication, it's not out of their wheelhouse. They will want to know what has already been tried (I'd bring notes just in case they want details). 

Plus it wasn't sudden; it sounds like it developed over six months of lockdown in a global pandemic, and that pandemic is not over yet. A general physical, including bloodwork, is always a good idea, though. 

If the OP thinks OCS, a specific type of anxiety, is a possibility, that can be taken into account if they try meds, even without a dx. They can choose to start with an anti-depressant that's more likely to help with OCD, like Prozac. 

This is when I think it's a good idea to consider medicine. Clinical anxiety is not regular anxiety, and you cannot 'reason' yourself out of many of the accompanying fears and anxieties. I'm all about therapy and changing behaviors, but I'm not about spending years with something significantly affecting qualify of life when there's medication that might help. 

Best of luck!

She has had a full physical with bloodwork, a full cardiac work up and seen the psychiatrist. Both pediatrician and psychiatrist strongly agree that medication is not a good fit for her issues.  She only has separation anxiety, zero symptoms of anything else.

[Shelydon]

7 hours ago, freesia said:

I agree. 

Another thing is to examine yourself when it’s going on. Are you a non-anxious presence or is your dc triggering your own anxiety bc you are worried about the situation. Managing your own anxiety and presenting a calm can do attitude can help. 

Baseball’s examples are excellent. 

I am a non-anxious person.  I am getting concerned about the fact that I need to have surgery in the next 4 weeks or I have to wait a year, but my DD doesn't know about that issue. 

[mommyoffive]

Sending so many hugs to her and to you.  This has been so hard on all of us in different ways.  

Having her get a therapist would be great. 

Is she ok with any other person besides you?  With your partner? A sibling? A neighbor? A family member? 

[Pen]

How about working through a CBT program with her while waiting for in person therapy?

 

CBT Toolbox for Children and Adolescents Bundle: Workbook & Printed Online Access Code https://www.amazon.com/dp/1683732626/ref=cm_sw_r_cp_api_glt_fabc_0PDK3EZTQB4Q1QJZ9DV8

 

[freesia]

6 minutes ago, Shelydon said:

I am a non-anxious person.  I am getting concerned about the fact that I need to have surgery in the next 4 weeks or I have to wait a year, but my DD doesn't know about that issue. 

That’s good. I struggle with anxiety myself and one of my dc’s anxiety triggers me and it’s better when I can keep it under control when they are struggling. I get anxious that dc is anxious and that does not help at all. 

[freesia]

There is a book called Freeing Your Child from anxiety that I found helpful. 

[Shelydon]

6 hours ago, katilac said:

Y'all, I had a very long, thoughtful, and brilliant reply, and the board ate it. 

The short version: yes, and also no. Try not to feed into their anxieties,  but also make sure you aren't trying so hard that they think anxiety is something that should always be hidden. Don't be so successful that they think it's wrong of them to worry or have anxiety. Recognizing and vocalizing our own anxieties can actually be a very powerful thing for children to see. All the more so if you or they or everyone in the room has actual clinical anxiety. 

I was helped a lot in young-ish adulthood by a pop psychology book (I know, I know), Feel the Fear and Do It Anyway, by Susan Jeffers. It's been decades since I read it, and I'm not so sure it was any of her specific techniques that helped me so much as the mere idea that it was okay to be afraid of something, okay to acknowledge it, okay to try something in spite of of it. When you're afraid to show fear, you will find yourself purposefully not doing things for that reason. When you are willing and able to acknowledge and vocalize your fear, you actually do a lot more, because you don't have to worry that someone will notice that you are afraid, because you have already acknowledged it. 

So, for me, coming from a mental place where putting on a good front translated into avoiding things I had anxiety about, I always lean toward acknowledging and vocalizing. Particularly for tweens and teens, who already know that certain fears aren't 'reasonable' and who are often feeling quite stupid about that fact. They need a lot of space to kind of acknowledge the existence and okay-ness of their unreasonable fears and anxieties before they can do the work of managing them (vs just suppressing them), and seeing others model that can be very empowering. 

OP, has she vocalized this anxiety to anyone other than you, maybe a peer? Would she be willing to do so? Texting can be a very low-key way to do this, "omg been in lockup so long idk if i remember how to be in a group" and maybe the convo gets a bit deeper and maybe it does not, maybe the other person agrees or maybe they can't wait to be in class, but there's still a certain amount of power in putting it out there. 

I'll order the book!  This is something we've been talking about, that she has to get used to the idea that she is going to feel scared/uncomfortable a lot before this gets better.  No, she won't talk to anyone else, she is very afraid of having a melt down in public.

[Shelydon]

25 minutes ago, Pen said:

How about working through a CBT program with her while waiting for in person therapy?

 

CBT Toolbox for Children and Adolescents Bundle: Workbook & Printed Online Access Code https://www.amazon.com/dp/1683732626/ref=cm_sw_r_cp_api_glt_fabc_0PDK3EZTQB4Q1QJZ9DV8

 

Just popped that into my Amazon cart, thanks!

[Shelydon]

27 minutes ago, mommyoffive said:

Sending so many hugs to her and to you.  This has been so hard on all of us in different ways.  

Having her get a therapist would be great. 

Is she ok with any other person besides you?  With your partner? A sibling? A neighbor? A family member? 

She is okay with DH.  I tried to talk her into staying with grandparents, but she won't.  She has been going to run neighborhood errands with her 18 yo sister to practice getting away from me. They are gone about 10 minutes at a time.

[Shelydon]

8 hours ago, BaseballandHockey said:

Medication might speed things up.  

If meds were recommended, I'd do it in a heartbeat

[Shelydon]

8 hours ago, BaseballandHockey said:

I want to come back and offer some of the thing that I think worked here.  I say "think" because we had a lot of things going on.  My kid has been on meds, and therapy.  Also, since grief is clearly the trigger for my kid, just getting some more distance from the loss helped.  So, I can't say "this worked" or "this didn't work".  I can only say "these are things we did" and "something worked".  For context, this morning my anxious kid managed to play a game of baseball, while his younger brother was swimming in a swim meet a half hour away.  So, we've seen a lot of progress.  I'll also note that while that's huge progress, we've still got the structure of a very familiar activity (baseball), adults here who he trusts, and lots of checking in. 

I think of my son as a lot like a young toddler who sort of toddles away, and then come back to home base.  He had some separation anxiety when he was little, and it was developmentally more appropriate, and he did a ton of that exploring, and then checking in.  He was also a toddler who loved the swing, would spend forever on the swing, and several people commented to me that it's that same cycle of you move away, you come back to mom, repeated over and over.  

So, when it became clear that this was a struggle, we looked at ways to recreate that separating and coming back feeling.  One thing we did was that every morning, I'd go for a walk with my boys, and they bring either their bikes or rollerblades.  They ride or skate ahead, and then come back to me and then ride behind, and then come back to me.  At first they were checking in constantly, but the distances got longer over time.  Also, I'd start to see him "racing" his younger brother, and moving further ahead from him.   Similarly, we worked on walking the dog, with him going a little further away.  So, maybe we'd go to the park, and he'd walk around the perimeter while his brother played basketball, and the distance would get longer.

The second thing that we did, that we didn't do for this reason, but might have helped, was that we did a lot of virtual communication inside the house.  I'm a teacher, and I've been virtual all year, and the rule is that if I'm in my office teaching, no one is coming in or out.  It's just too distracting.  Often, when I was teaching, I'd have my younger kid (keep in mind that my kid has more anxiety about being separated from his brother than from me) sitting next to me, while my older kid (the one with separation anxiety) was in the kitchen.  They'd message back and forth, and turn on their cameras, and interact, and it was good practice for that sense of "I can still reach him when I need him".  So, if she's willing to do things like read in the family room while you cook in the kitchen, having her text you or face time you, rather than coming to you, when her anxiety starts rising or if she needs something concrete, might help.

Finally, we worked hard on expanding the circle of people.  He didn't love being apart from his brother, but if he was with a handful of close family members, it was better.  So, practicing waiting in the car with Dad while you run a quick errand (maybe walking to the mailbox at first, and then into a store like 7 11 that has a glass front) could help.  

 

These are the kinds of things we are trying to do.  Pre-covid, this was my most outgoing kid.  Always spending the night with friends.  She is very extroverted and outgoing. 

[Shelydon]

I ordered all of the books everyone recommended.  She really wants to help with VBS this month, so I will be driving her to church in the early morning and sitting close by so she can participate. She is able to do all of her normal stuff as long as I am nearby, so I am trying to get her to quite a few things.  She was invited to parties, swimming and sleep overs 8 times last week alone, but I couldn't go and stay with her for those, so she didn't get to go. 

 

[EKS]

Cognitive behavioral therapy. 

Also, I wouldn't cave to her anxiety.  If things like your surgery need to be done, do them.  The more experience she has with anxiety producing things actually turning out ok, the better.

[Drama Llama]

19 minutes ago, Shelydon said:

If meds were recommended, I'd do it in a heartbeat

But have you seen anyone in the past few months?  Maybe I misread. 

[Shelydon]

20 minutes ago, BaseballandHockey said:

But have you seen anyone in the past few months?  Maybe I misread. 

We last saw the psych end of May and pediatrician beginning of June. Cardiologist was in April

[Shelydon]

24 minutes ago, EKS said:

Cognitive behavioral therapy. 

Also, I wouldn't cave to her anxiety.  If things like your surgery need to be done, do them.  The more experience she has with anxiety producing things actually turning out ok, the better.

I lean a bit this way.  I am a no nonsense kind of person generally, I am just afraid of making things worse.

[mommyoffive]

41 minutes ago, Shelydon said:

I ordered all of the books everyone recommended.  She really wants to help with VBS this month, so I will be driving her to church in the early morning and sitting close by so she can participate. She is able to do all of her normal stuff as long as I am nearby, so I am trying to get her to quite a few things.  She was invited to parties, swimming and sleep overs 8 times last week alone, but I couldn't go and stay with her for those, so she didn't get to go. 

 

That is great that you are doing that.  I think every little step is going to be helpful.  Can you move a bit father away each time.  The building. Then wait in the car.  Then at a coffee shop?   Does she have a way to contact you (a phone)?  Does that help things at all? 

[MercyA]

Would it help her to have something tangible of yours with her? A bracelet, a ring, a scrunchie that belongs to you? Some sort of little stuffed something (a keychain?) from you that she could hold in her hand?

Edited June 20, 2021 by MercyA

[Ausmumof3]

2 hours ago, Shelydon said:

I ordered all of the books everyone recommended.  She really wants to help with VBS this month, so I will be driving her to church in the early morning and sitting close by so she can participate. She is able to do all of her normal stuff as long as I am nearby, so I am trying to get her to quite a few things.  She was invited to parties, swimming and sleep overs 8 times last week alone, but I couldn't go and stay with her for those, so she didn't get to go. 

 

I think this will be the key.  A couple of months of situations where you can be present but leave for a short time period.  Once she’s comfy with that building up to longer time periods/distances.

[katilac]

3 hours ago, Shelydon said:

She has had a full physical with bloodwork, a full cardiac work up and seen the psychiatrist. Both pediatrician and psychiatrist strongly agree that medication is not a good fit for her issues.  She only has separation anxiety, zero symptoms of anything else.

Ah, okay, your post only said the psych didn't recommend any sort of medication, which I interpreted as 'didn't address medication at the time' vs not thinking it was a good fit. Depending on how long this goes on and how much progress she makes, I would definitely consider going back and saying that you need more tools for the toolbox (which does not have to mean medication, but the psych in particular needs to know if she is not moving forward with the current tools). 

It is excellent that the physical has already been addressed. 

2 hours ago, Shelydon said:

I'll order the book!  This is something we've been talking about, that she has to get used to the idea that she is going to feel scared/uncomfortable a lot before this gets better.  No, she won't talk to anyone else, she is very afraid of having a melt down in public.

I know my library has the new edition. It's in the pop psychology/self-help genre, but sometimes that resonates when other things don't. Definitely check it out yourself first - I don't remember anything that would be the slightest bit controversial, but it has literally been decades since I read it! 

3 hours ago, Pen said:

How about working through a CBT program with her while waiting for in person therapy?

This is a good idea. Her psych might even have one they recommend (you can probably just call the front office and ask). 

You're doing all the things. It's hard work!  

[kristin0713]

Disclaimer: I am not trying to diagnose your child. I just want to share information that might be helpful.  

I agree with not jumping to meds right away, primarily because you don't know the reason behind her separation anxiety.  

I still very strongly recommend considering PANS and OCD.  From what you described, this is a healthy, typical, outgoing and extroverted kid who is now suffering from extreme separation anxiety.  Unless she experienced a traumatic event or a devastating loss, this is not a normal result of the lockdown.  The pandemic has been HARD but I don't believe that alone could cause the ongoing level of distress that you describe in a healthy kid.    And I disagree with a pp that said it wasn't sudden.  This is extreme behavior that is completely out of character for this child and it developed in a matter of months.  

There is no blood test that can diagnose PANS.  Sometimes strep can be found in bloodwork that can indicate PANDAS.  PANS is the result of a viral trigger that causes ongoing inflammation in the brain.  It needs to be treated with anti-inflammatories.  Just as a side note, SSRI's can make kids with PANS worse.  They need anti-inflammatories first.  My DD was brought out of her extreme symptoms by taking ibuprofen and azithromycin. If I didn't see it with my own eyes, I would not have believed that those simple medicines could bring my daughter back to reality. 

OCD can take many forms and be extremely easy to miss if you are not aware of all the different ways that it manifests.  It is not merely contamination fears and hand washing (although it can be.)  Much of it can take place in the mind only, without any physical manifestation for you to see.  Extreme separation anxiety is very, very common among people with OCD.  

My daughter developed PANS after being sick with coxsackievirus and the primary symptom that I saw was extreme separation anxiety.  At that point in time, I could have written your post.  Several months later, she got the flu, and then I totally lost her.  She developed *every* symptom of PANS.  It was like a complete and total mental health crisis.  Her behaviors were so extreme that, if she had not been homeschooled and with me almost all of the time, I would have been convinced that something traumatic happened to her in my absence.  If she had never gotten the flu, it's possible that her PANS would not have progressed to that state and maybe I would never have figured it out.  

Did she have covid that you know of?  

8 hours ago, Shelydon said:

I lean a bit this way.  I am a no nonsense kind of person generally, I am just afraid of making things worse.

It actually makes it worse to cooperate with her.  It is feeding the cycle.  

 

[itsheresomewhere]

Did they test for Lyme disease?  If not, demand a test.  Even if they try there is no Lyme disease here crap.  Lyme disease can wreck havoc on one’s system and is so overlooked it is not funny.  Very few ever see a bullseye or even a tick. And the symptoms in each person varies greatly. Anxiety issues were a clue for a friend’s child. 

Edited June 20, 2021 by itsheresomewhere

[Drama Llama]

16 hours ago, Shelydon said:

She was invited to parties, swimming and sleep overs 8 times last week alone, but I couldn't go and stay with her for those, so she didn't get to go. 

Is there flexibility there?  Honestly, I think this is an urgent situation, both because of your surgery which doesn't sound optional, and because if she's getting less interaction in the summer than she was when she was in coop, things are likely to get worse.

Could you look at these invitations as therapy, and prioritize them the way you would other urgent medical care for a family member?  

I know that for my kid, he needed help getting back on the horse.  His first experiences separating from his brother started with doing things with his brother and another relatively safe person (e.g. me) and then fading out the brother.  

[Drama Llama]

17 hours ago, Shelydon said:

She has had a full physical with bloodwork, a full cardiac work up and seen the psychiatrist. Both pediatrician and psychiatrist strongly agree that medication is not a good fit for her issues.  She only has separation anxiety, zero symptoms of anything else.

Sorry, I missed this when I was pushing meds. 

What are you afraid will happen if you get the surgery? (e.g. are you afraid she'll self harm while you're in the hospital?) What are you afraid will happen if you don't?  (e.g. What will be the medical consequences for you?)  Have you expressed those fears to the psychiatrist?  It might help them see the degree of crisis, and suggest more robust resources whether that's calling a favor to get you to the top of a waiting list, or adding medication, or giving you a more detailed treatment plan.  

[katilac]

4 minutes ago, BaseballandHockey said:

Is there flexibility there?  Honestly, I think this is an urgent situation, both because of your surgery which doesn't sound optional, and because if she's getting less interaction in the summer than she was when she was in coop, things are likely to get worse.

Could you look at these invitations as therapy, and prioritize them the way you would other urgent medical care for a family member?  

I know that for my kid, he needed help getting back on the horse.  His first experiences separating from his brother started with doing things with his brother and another relatively safe person (e.g. me) and then fading out the brother.  

I interpreted her post more as meaning that adults weren't invited, not that she didn't have the time. 

[Drama Llama]

2 minutes ago, katilac said:

I interpreted her post more as meaning that adults weren't invited, not that she didn't have the time. 

Ahhh, yes I can see how that could be.  

 

[PeterPan]

On 6/19/2021 at 12:35 AM, Shelydon said:

I thought about trying genetic testing to see if there was something we could supplement her diet with that would help.

I'm all over the whole genetics, take supplements thing, but personally I'd find a new doc and get her on a med IMMEDIATELY and sort out the genetics mess later. And get a good counselor. 

I'm so sorry she's struggling like this. Makes you think of Monk's brother. If you thought it would make her laugh, you could watch some of those episodes. Fwiw, he does eventually come out. 

[PeterPan]

18 hours ago, Shelydon said:

If meds were recommended, I'd do it in a heartbeat

I still think you could still beat this horse a bit. Every doctor you talk with is going to have a different answer. My doctor is very conservative, so he suggested buspar for anxiety. It's not an SSRI but an agonist. It has a very short half life and no withdrawal. So if they were thinking they didn't want to try an SSRI/SNRI for anxiety, then how about a lower key middle option like an agonist? She can literally use it just as needed, like just for the days when she's going out.

There are some rather innocuous middle of the road things you could look at with supplements. You can check her fingernails for white spots to see if she's zinc deficient. Zinc balances with B6, so if the zinc is good (no white spots), then you could try B6. But what you'd want to look into is P5P, which is the ready to go form of B6. It's not terribly expensive. I do have a genetic defect for B6 and my zinc is pretty good because it's in my multi. So for me, just taking b6 in the P5P form is enough to stop the burn and tamp down that anxiety/

Is she getting CBT or DBT or some kind of counseling? Because it's really striking that she can get there but not stay if you're there. I think you could try some inbetween things, like be there but be a *little more* distant. So you would *wean* her rather than all/nothing cold turkey. So you're there but further back. Then you're there but around the corner. Then you're there but in the car. And so on. I'm not a therapist but it seems pretty logical. We did some distance stuff like that with ds for other reasons. 

There's also 5HTP, which is what the body makes from tryptophan. You can alternately try eating foods that are higher in tryptophan. But if you want to try taking 5HTP, you could. Just start with a low dose like a 100mg time release from Natrol which you can get at Kroger. Some brands, like NOW, are junk. Natrol has been good here. 5HTP converts to serotonin and melatonin. It can also unbalance dopamine a bit. But you know try it, see how it rolls. There's a gene for a defect in converting. I take 200mg 2X a day and my ds takes 700mg 2X a day. Doses that are low, like 50 or 100mg, might give her some effect with less risk of dropping her dopamine. 

She might also consider learning to body scan. You can google for links. Basically, she just works through her body, paying attention to each part and naming how it feels. Doing this for even just a few minutes will give her a 30% bump in EF (executive function) in the brain and is an evidence based practice for anxiety. Won't replace the need for a med, but it might help.

She can also explore strategies that make her feel better when she feels anxious. She might like to have a soft thing to pet in her pocket or get dab some lavender oil on a wrist or behind her ears to focus on. Walmart sells a little oil called MotionEaze that might work. https://www.walmart.com/ip/Motioneaze-Motion-Sickness-Relief-Topical-Oil-08-fl-Oz-20-application/12346124

Edited June 20, 2021 by PeterPan

[PeterPan]

https://www.amazon.com/Dialectical-Behavior-Therapy-Skills-Workbook/dp/1684034582/ref=sr_1_16?dchild=1&keywords=anxiety+workbook&qid=1624219757&sr=8-16  Your library might have this workbook on DBT.

https://www.amazon.com/Worry-Workbook-Kids-Children-Uncertainty/dp/1626259631/ref=sr_1_33?dchild=1&keywords=anxiety+workbook&qid=1624219757&sr=8-33  I think our library had this too.

https://www.amazon.com/What-When-Worry-Much-What/dp/1591473144/ref=pd_bxgy_img_3/147-9355633-7062835?_encoding=UTF8&pd_rd_i=1591473144&pd_rd_r=960199e0-ede3-4a36-96e1-f94065c552ce&pd_rd_w=Q1ssE&pd_rd_wg=GNHwC&pf_rd_p=fd3ebcd0-c1a2-44cf-aba2-bbf4810b3732&pf_rd_r=NX4EZQXPZPGKKTE0QY26&psc=1&refRID=NX4EZQXPZPGKKTE0QY26  Another our library system has.

You'll probably be able to find something that suits her. Some cognitive tools plus supplements plus bodywork strategies, kwim?

[PeterPan]

18 hours ago, Shelydon said:

She is okay with DH.  I tried to talk her into staying with grandparents, but she won't.  She has been going to run neighborhood errands with her 18 yo sister to practice getting away from me. They are gone about 10 minutes at a time.

Oh this is really good!!! That's a good sign that she's going to pull out. This has been so hard on kids, sigh. 

On 6/19/2021 at 3:20 PM, katilac said:

So, for me, coming from a mental place where putting on a good front translated into avoiding things I had anxiety about, I always lean toward acknowledging and vocalizing. Particularly for tweens and teens, who already know that certain fears aren't 'reasonable' and who are often feeling quite stupid about that fact. They need a lot of space to kind of acknowledge the existence and okay-ness of their unreasonable fears and anxieties before they can do the work of managing them (vs just suppressing them), and seeing others model that can be very empowering. 

OP, has she vocalized this anxiety to anyone other than you, maybe a peer? Would she be willing to do so?

 

18 hours ago, Shelydon said:

This is something we've been talking about, that she has to get used to the idea that she is going to feel scared/uncomfortable a lot before this gets better.  No, she won't talk to anyone else, she is very afraid of having a melt down in public.

Have you thought about tele therapy? She could do it that way and not even need to leave home. I was going to ask you what the worst thing is that happens. You're right that learning to live with discomfort is part of it. And she could work through the rest with the counselor. Sometimes what happens when we panic is we get in fright/flight and don't problem solve well. So they'll prethink situations together and make plans. 

It's not that you can't help her with a workbook because you can. It's that talking it through with someone else will make her more confident. It needs to get out there, in the open.

[Shelydon]

8 hours ago, itsheresomewhere said:

Did they test for Lyme disease?  If not, demand a test.  Even if they try there is no Lyme disease here crap.  Lyme disease can wreck havoc on one’s system and is so overlooked it is not funny.  Very few ever see a bullseye or even a tick. And the symptoms in each person varies greatly. Anxiety issues were a clue for a friend’s child. 

Yes. Our pediatrician is extremely progressive. She tested for every tick-borne illness there is. She also ruled out PANS