What are some additional options for severe anxiety?

[Ditto]

On 6/11/2024 at 9:21 AM, GoVanGogh said:

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. 

Would explain to me what you mean by intensive yoga?  I love yoga.  I also have diagnosed generalized anxiety disorder that I am always trying to keep at a manageable level.  I wonder if I need to increase/change my yoga practice to manage my anxiety better.

[73349]

Re: Stopping the thought/resisting it, etc., it can be helpful to question it.

• What else might be true here?
• What would [objective person] say is a true story right now?
• What would I tell [friend/cousin/etc.] if she were me right now?

Some people like to think of their thoughts and feelings like weather. It develops, it does its thing, and sooner or later it passes by. We are the sky, not the weather.

It also helps my DS to simply do some jumping jacks when he feels the anxiety building up. If we give the body a good reason to have a faster heart rate for a couple of minutes, and then let it slow back down, the brain doesn't have to come up with scary or angry thoughts to match.

[Terabith]

Has she tried EMDR?  I know there was no obvious trauma, but despite really disliking the therapist and only doing like five sessions, it was amazingly effective for me.  

 

[Kassia]

5 minutes ago, Terabith said:

Has she tried EMDR?  I know there was no obvious trauma, but despite really disliking the therapist and only doing like five sessions, it was amazingly effective for me.  

 

My friend's ds had great results with EMDR. 

[Shelydon]

27 minutes ago, Terabith said:

Has she tried EMDR?  I know there was no obvious trauma, but despite really disliking the therapist and only doing like five sessions, it was amazingly effective for me.  

 

Yes! She has  done 10-15 sessions. She feels better the same day, but not long term

[KSera]

1 hour ago, Shelydon said:

Yes! She has  done 10-15 sessions. She feels better the same day, but not long term

I wonder if the similar but different method @Mrs Tiggywinkle Again mentioned above might give more lasting results. Also makes me wonder again if ketamine assisted therapy would be a useful modality for her (the therapy alongside it being important, I would just do it as a standalone). 

[katilac]

On 6/11/2024 at 8:46 PM, PeterPan said:

 Other than that, give it a go. It's just an old school antihistamine, not a really big commitment. Your body will clear it in 6x half life and in my ds it was seemingly GONE in 4 hours. So it's not a long hang time and then the rebound of an ssri.

Here's the standard however. This is almost always true; however, it lasts freaking forever for me, like 12+ hours is not unusual. I had to take it crazy early as a sleep aid, like 6 pm, lol, not at bedtime. 

On 6/12/2024 at 1:52 PM, PeterPan said:

Straight answer? The trauma would cause dissociation but not the anxiety.  

Trauma can definitely cause anxiety. 

On 6/14/2024 at 2:40 PM, 73349 said:

Re: Stopping the thought/resisting it, etc., it can be helpful to question it.

• What else might be true here?
• What would [objective person] say is a true story right now?
• What would I tell [friend/cousin/etc.] if she were me right now?

Not a question, but I also like: Feelings are always real, but they aren't always true. 

[katilac]

On 6/12/2024 at 5:02 AM, Eos said:

 I don't do tough love, life is tough enough.

❤️❤️❤️

[PeterPan]

13 hours ago, katilac said:

for me, like 12+ hours is not unusual.

It would be interesting for you to see what detox pathways are used and what your genes are for that pathway. Then you could predict other meds that will hang a long time.

 

[PeterPan]

14 hours ago, katilac said:

Trauma can definitely cause anxiety. 

Lest we talk past each other, I'll agree but say it's more complex. Here's an article that fleshes some of that out.

https://pinnaclecounselingnwa.com/generalized-anxiety-vs-trauma-based-anxiety/

It gets even more interesting because of the irony that someone could have a chemistry based, genetic, inherent, permanent anxiety due to how their body rolls that has NO underlying cognitive anxiety (no worries about anything, nothing that they are actually worried about but their body just does this with the anxiety symptoms and driving them that way, but when you say what are you anxious about it's zero). When my chemistry is off, that's what happens to me. No spiritual problem, nothing I'm (on a logical level) worried about, but my body just does it with all the anxiety symptoms. I had trauma too as a child for which I received trauma counseling as an adult, and fwiw the symptoms with that were *different* from my chemistry based, inherent anxiety. The trauma made me disconnected and more *reactive*. They're just different in ways that become obvious as you peel away the layers. I'm not doubting the severity of anyone's symptoms.

That kicker, when the religious community (I was raised in) wants to think of anxiety as ONLY a spiritual problem, a cognitive problem, something mind over matter, is just mind boggling to me. We're SO much more complex than that.

[Shelydon]

No changes, just wanted everyone to know that I am carefully reading through everything again, taking notes and seeing what other action we can take. I did forget to say that this particular teen has very severe GERD. Multiple GI doctors, endoscopy etc. with no answers over several years.  She takes PPI meds for a couple of months, then weans off of them. After 3 or 4 months, she can't stand the pain anymore and goes back on. 🤷‍♀️ 

[freesia]

6 hours ago, Shelydon said:

No changes, just wanted everyone to know that I am carefully reading through everything again, taking notes and seeing what other action we can take. I did forget to say that this particular teen has very severe GERD. Multiple GI doctors, endoscopy etc. with no answers over several years.  She takes PPI meds for a couple of months, then weans off of them. After 3 or 4 months, she can't stand the pain anymore and goes back on. 🤷‍♀️ 

That’s so hard. One of mine has GERD. After going the med route for a while, we tried a naturopathic doctor. He put her on something called Vital Nutients Heartburn Tx, which has worked better than the meds. We also discovered she has a corn intolerance. Eliminating corn makes the biggest difference for her.  She manages with the Heartburn Tx and Tums, ginger mints and occasionally Famatodone(if she decides to have pizza at an event.) Oh, and in general avoiding foods that trigger 

[Shelydon]

3 hours ago, freesia said:

That’s so hard. One of mine has GERD. After going the med route for a while, we tried a naturopathic doctor. He put her on something called Vital Nutients Heartburn Tx, which has worked better than the meds. We also discovered she has a corn intolerance. Eliminating corn makes the biggest difference for her.  She manages with the Heartburn Tx and Tums, ginger mints and occasionally Famatodone(if she decides to have pizza at an event.) Oh, and in general avoiding foods that trigger 

I'll take a look at that, definitely willing to try anything. She avoids all Dairy, tomatoes, orange juice, soda basically anything with acid. 

Edit-- I went ahead and ordered that heartburn tx. We've tried multiple different powders, but always willing to try something new

Edited June 20 by Shelydon

[Kanin]

1 hour ago, Shelydon said:

I'll take a look at that, definitely willing to try anything. She avoids all Dairy, tomatoes, orange juice, soda basically anything with acid. 

 

A friend of mine had severe GERD for most of his life. In his mid-20s, he went to a doctor at the university health center who had him go gluten-free and dairy-free. This was very hard for this friend because he was a super picky eater. After about 6 months, his GERD was almost gone!! He stuck with the GF/DF diet for a long while (2 years maybe?) and then gradually reintroduced gluten and dairy. Now he's eating as he did before, but with no GERD.

I was really shocked that the diet worked, honestly. This friend would have to sleep in a recliner, often, because his GERD was so bad he couldn't lie down flat. It was especially sad because he was so young. 

Edited June 20 by Kanin

[klmama]

Chocolate can also trigger GERD, as can alcohol, fried foods, spicy food, coffee, and peppermint.  The biggest help I've found is not eating within 3 hours of lying down.  

[KSera]

1 hour ago, Shelydon said:

We've tried multiple different powders, but always willing to try something new

I almost suggested slippery elm last night, but then thought that seemed maybe silly for someone dealing with as severe a case as she is, but then I was curious again this morning and found that it’s actually part of many official weaning off PPIs protocols (such as https://www.fammed.wisc.edu/files/webfm-uploads/documents/outreach/im/module_gerd_clinician_ppi.pdf)

It may be that’s one of the things you reference that you’ve already tried. 

[Shelydon]

22 minutes ago, KSera said:

I almost suggested slippery elm last night, but then thought that seemed maybe silly for someone dealing with as severe a case as she is, but then I was curious again this morning and found that it’s actually part of many official weaning off PPIs protocols (such as https://www.fammed.wisc.edu/files/webfm-uploads/documents/outreach/im/module_gerd_clinician_ppi.pdf)

It may be that’s one of the things you reference that you’ve already tried. 

Yes. She has had it in a couple of different forms from 2 or 3 different companies. Powders that you mix into drink and then capsules that you take. No luck, but I do hear from other people that they find it effective. 

[Shelydon]

1 hour ago, Kanin said:

A friend of mine had severe GERD for most of his life. In his mid-20s, he went to a doctor at the university health center who had him go gluten-free and dairy-free. This was very hard for this friend because he was a super picky eater. After about 6 months, his GERD was almost gone!! He stuck with the GF/DF diet for a long while (2 years maybe?) and then gradually reintroduced gluten and dairy. Now he's eating as he did before, but with no GERD.

I was really shocked that the diet worked, honestly. This friend would have to sleep in a recliner, often, because his GERD was so bad he couldn't lie down flat. It was especially sad because he was so young. 

My daughter has a wedge that goes underneath her mattress, she cannot sleep flat. She is already completely dairy-free and has been for most of her life, she is allergic to the protein in milk. We have not tried gluten-free largely because her diet is already so restricted. 

[Lecka]

One of my sons had a period of anxiety-related stomach aches, that was really horrible and combined/led to a period of school refusal.  
 

It was horrible, just awful.  
 

He was also little, I think he was 7.  
 

I don’t know if you have read about school refusal (or school avoidance), it’s been a while since I have, but this is sounding similar now.  
 

We could be pretty sure my son had a clear situation of anxiety causing the stomach aches.  
 

Here’s what we heard with my son…. To some extent, we think…. My son really was sick and stayed home.  Then while he was home, he became anxious about going back to school.  Then he started getting stomach aches.  I kept him out of school for a while thinking he was sick.  
 

It was getting better but he still had stomach aches for about a year (getting better over a year).  
 

But we also had a family situation that resolved during that time, and another family situation that was improving over that time.  It was never really clear-cut.  
 

I don’t know if there would be anything helpful in looking at school avoidance/refusal, but with the stomach issues it does sound similar.  
 

My son was young and we felt confidence it was primarily related to anxiety.  He did also start OT and there was also a strong chance it was related to his handwriting issues, and there were some changes in his classroom.  Honestly there were a lot of things going on, we had family issues and then there was the handwriting issue.  We did work to address all these things, too.  
 

At the end of it they ended up thinking it was situational anxiety.  
 

I don’t know if any of this is helpful.

 

For my son, I couldn’t have done anything that seemed harsh, cruel, uncaring, or unloving.  It did still seem that way, but there were a lot of things that can make it be a lot less this way and it helped that the school wanted to work with him and treated him well, and they had a plan for school avoidance and getting kids back into school.  
 

But I think we had a less-complicated situation than a lot of people do, and especially with our family situations and the handwriting, there were known things to address.  And pretty early on, I did take him to the doctor, and I agreed with the doctor it was probably a stress/anxiety issue and not primarily a physical issue.  We really did have some stressors to make that seem likely.  My son also had really on-and-off symptoms and it didn’t make any sense why he could have bad stomachaches sometimes but not other times and it really did seem related to stress/anxiety.  
 

I also think if you have people recommending “just make her be away from you,” on some level I did do that, but there were a lot of extenuating circumstances and I felt good about how he would be treated and thought it was being handled well, I thought we were on the same team.  But I don’t think our circumstances are everybody’s circumstances, and we had big things like — not thinking there was a physical cause, getting a learning disability diagnosed, and family stress.  I think it’s not a “one size fits all” kind of thing.  

[Lecka]

https://schoolavoidance.org
 

I did look, and this looks like a good resource.  Maybe an outside activity or class would be equivalent to “school.”

 

I have been assuming all along, that some kind of exposure therapy or desensitization has been recommended.  That was a top recommendation for me, my son also did do CBT with the school counselor.  But I read on this website, a lot of people don’t have it recommended to them because it’s hard to find a therapist.  Well — it’s what was recommended to me and it was what I would see online at the time (I think) — but I had to know to Google “school refusal” or “school avoidance” in the first place.  
 

Well — I hated doing it.  I have done it in some amount with two of my kids, though.

 

This son would absolutely be terrified that “something bad would happen” and he would be worried about vomiting or becoming really sick.  
 

The school helped with this.  
 

But it helped to be practical in a way and we did talk to him about “if x, y, z then the nurse will do x, y, z.”  
 

He was not thinking about it that way and it did help and also I could be clear with him.  
 

 

[Toocrazy!!]

Has anyone looked into her gut health / brain connection? Maybe that's a little out there, but I think there's a lot of very promising information coming out about how the gut health can affect mental health and foods/diet that can help. With her severe GERD, there is likely some gut issues that could be in play? Maybe a functional dr, if your area has one, could take a look at the whole picture. It seems like the more I learn about optimum health, issues seem related in some way. Of course anxiety and stomach issues have been linked for a long time. 

I'm sorry she is suffering. I hope you can find something that helps her. 

[kbutton]

1 hour ago, Shelydon said:

My daughter has a wedge that goes underneath her mattress, she cannot sleep flat. She is already completely dairy-free and has been for most of her life, she is allergic to the protein in milk. We have not tried gluten-free largely because her diet is already so restricted. 

I find GF a million times easier than dairy free. It might be worth trying for a bit—it doesn’t have to be forever if it knocks things back a bit. Not saying you should either though!

10 minutes ago, Toocrazy!! said:

Has anyone looked into her gut health / brain connection? Maybe that's a little out there, but I think there's a lot of very promising information coming out about how the gut health can affect mental health and foods/diet that can help. With her severe GERD, there is likely some gut issues that could be in play? 

I’m pretty sure that mast cell stuff can cause GERD, and lots of people have anxiety when their mast cell stuff flairs.

Probiotics can sometimes help gut stuff, but some kinds produce more histamine and can aggravate mast cell stuff. I can safely take s boulardi (sp?).

[Toocrazy!!]

https://brainenergy.com/

 

https://www.caseymeans.com/goodenergy

 

These are two authors I have recently been listening to that connect the mitochondria functions to metabolic issues that affect our physical and mental health. If you don't want to read the book, they both have been on numerous podcasts where you can get the gist of their philosophies. They are remarkably similar even though one is about mental health and one more about physical health. 

[73349]

Another elimination to try 100% for a few weeks is soy. A friend of mine's only allergy symptom is that it damages her esophagus. (She also tried GF and DF to make sure those weren't the issue.)

If you can figure out what's causing the inflammation and get rid of it, that may help quite a bit with the anxiety on its own. #DontProvokeTheBody

 

[Shelydon]

2 hours ago, Toocrazy!! said:

Has anyone looked into her gut health / brain connection? Maybe that's a little out there, but I think there's a lot of very promising information coming out about how the gut health can affect mental health and foods/diet that can help. With her severe GERD, there is likely some gut issues that could be in play? Maybe a functional dr, if your area has one, could take a look at the whole picture. It seems like the more I learn about optimum health, issues seem related in some way. Of course anxiety and stomach issues have been linked for a long time. 

I'm sorry she is suffering. I hope you can find something that helps her. 

We have tried multiple elimination diets and a slew of probiotics over the last several years. No luck, but we keep trying. I don't have any real proof that the two issues are related, but 🤷‍♀️ 

[Shelydon]

35 minutes ago, 73349 said:

Another elimination to try 100% for a few weeks is soy. A friend of mine's only allergy symptom is that it damages her esophagus. (She also tried GF and DF to make sure those weren't the issue.)

If you can figure out what's causing the inflammation and get rid of it, that may help quite a bit with the anxiety on its own. #DontProvokeTheBody

 

Thanks. We don't eat a lot of soy. The milk alternative she uses is coconut or almond. Let me look and see what may contain soy and our daily diet

[Shelydon]

51 minutes ago, Toocrazy!! said:

https://brainenergy.com/

 

https://www.caseymeans.com/goodenergy

 

These are two authors I have recently been listening to that connect the mitochondria functions to metabolic issues that affect our physical and mental health. If you don't want to read the book, they both have been on numerous podcasts where you can get the gist of their philosophies. They are remarkably similar even though one is about mental health and one more about physical health. 

Off to listen!

[kbutton]

2 hours ago, Shelydon said:

We have tried multiple elimination diets and a slew of probiotics over the last several years. No luck, but we keep trying. I don't have any real proof that the two issues are related, but 🤷‍♀️ 

That sounds so frustrating!

 

[Lecka]

I spent a lot of time thinking about where my son’s anxiety came from and/or what the “real” cause was and things like that.

 

I ended up thinking or maybe being talked to about 2 things….

 

One, wherever it came from, now we had “anxiety” to deal with and address, there was no going back to make it like he never got into avoidant behaviors.  Well, he did, and that was its own thing.  
 

Two, everything is connected and improvement in every area would help, and contribute.  
 

It seems contradictory, but it’s not.  
 

I think surely now the GERD and the pain from that and trying to figure that out without a good answer/solution, has got to be a factor in the anxiety, because how could it not be?

 

But how does it fit together?  Who knows.  
 

It was never clear cut for me, which is so frustrating, but I think someone explained it to me like — decreasing 5 known stressful things a little bit (or a lot), will add up to a lot less stress.  And that will make it easier to try to change the avoidant behavior.  
 

I had a feeling with my son, that I couldn’t just remove the stress — because he had some entrenched avoidance that I didn’t think was just going to go away.  I think it does happen like that for other situations, but I didn’t think so for our situation. 
 

But there were about 5 known contributing factors and they all needed to be addressed.  
 

I also would say I got feedback that my son had been avoiding things and avoiding them extremely enough…. That they didn’t think it was realistic he would “naturally” stop the avoidant behavior without directly addressing it.  They thought it was likely he would have an anxiety diagnosis when he was older.  
 

Overall I never got “an answer” or “an explanation” that was satisfying.  I never got “here is how things fit together.”  But I think that’s okay.  I don’t think it’s the key or necessary, I think trying to address everything in a reasonable way, in what seems like a reasonable order (or concurrently), is the main thing.  

[Kanin]

20 hours ago, Shelydon said:

My daughter has a wedge that goes underneath her mattress, she cannot sleep flat. She is already completely dairy-free and has been for most of her life, she is allergic to the protein in milk. We have not tried gluten-free largely because her diet is already so restricted. 

I know, restricting further stinks... but I also think that GF is way easier than DF. There are so many GF products now that taste great! It would be worth it to me to try it for the summer. If it worked, how amazing would that be. 

[Shelydon]

 I thought I would update this-- her current doctor upped her SSRI.  We are looking at a local place that offers Transcranial Magnetic Stimulation for anxiety and depression.  She had started Allegra to see if that helps the GERD-- some people find the GERD is related to allergies and it is something she has not tried.  She still can't do anything away from a parent, so I have been sitting in a car outside of places so she can have some time with friends as she is very extroverted.

[KSera]

4 minutes ago, Shelydon said:

She had started Allegra to see if that helps the GERD-- some people find the GERD is related to allergies and it is something she has not tried.

Is she already using Pepcid or would it be contraindicated for her to use Pepcid (in addition to the Allegra)? One is an H1 blocker and the other H2 and the combination together can be really helpful for people whose GI issues turn out to be histamine related. Sometimes with experimentation, people find that they do better with either Allegra, Zyrtec, or Claritin as their H1 component and it seems to vary for different people.

[ktgrok]

On 6/11/2024 at 10:26 AM, 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

Did they test for Celiac (blood work - must have been eating gluten daily for at least a month, potentially longer). In some people Celiac expresses as neuropsych symptoms. 

On 6/11/2024 at 10:31 AM, 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

I know you say PANDAS was ruled out, but there are no real tests for it. One thing we found, with DS, is that ibuprofen helped, because the anxiety was related to brain inflammation. It might be worth trying - ibuprofen at regular dose every 6 hours for a day or two to see if there is a change. (we also think it helps with his anxiety when he gets gluten)

[ktgrok]

Are you doing just general desensitization and counter conditioning at all?

As in, you find threshold. If she is okay with being in the house while you are out in the yard for 2 minutes to get the mail, but not okay with you going for a walk while she stays home, then you would work on it like this. 

1. Several times a day, you go out into the yard for 1 minute (under her threshold) while she listens to her favorite music or dances or watches funny cat videos, anything that activates the happy places in her brain. Repeat this step until you going out the door makes her feel good. NO anxiety at all, just relaxed or happy because yay, cat videos. 

2. You go outside for several times a day, for between 1 minutes and 2 minutes with same proceedure as above. If not anxiety, continue to next step. If 2 minutes creates anxiety back up to 1 minute 20 seconds or however long does NOT provoke anxiety. 

3. You go outside, but just right outside the door, for 2 minutes. You let her know you will be outside the door. Or even outside a window where she can see you. Repeat until she is totally okay with this. 

4. You go outside for 1 minute again, but where she can't see you. again, repeat or back down to insure no anxiety. 

5. You go outside several times for 2 minutes, where she can't see you. again, repeat or back down to insure no anxiety. 

6. You go outside for 3 minutes, but stay outside window where she can see you, or right outside door, whatever works for her. again, repeat or back down to insure no anxiety. 

7. You go outside for 3 minutes where she can't see you. again, repeat or back down to insure no anxiety. 

etc etc. The idea is you increase distance OR time, but not both at once. You do NOT increase either if there is anxiety. 

Eventually work up to longer times and distances, and maybe add in you sitting in the car but not driving away, then driving to end of driveway and pulling back in, driving to neighbors and coming back, etc. Again, baby steps forward, and repeat each step until there is NO anxiety. 

IF you instead go too fast, create anxiety, she has a panic attack, you are increasing the chance of anxiety next time. So you have to stay under threshold. 

It takes a LONG time. BUT it's faster than not doing anything. Many people will need medication to even start this. 

I also assume she knows grounding techniques, etc?

 

[Shelydon]

41 minutes ago, ktgrok said:

Are you doing just general desensitization and counter conditioning at all?

As in, you find threshold. If she is okay with being in the house while you are out in the yard for 2 minutes to get the mail, but not okay with you going for a walk while she stays home, then you would work on it like this. 

1. Several times a day, you go out into the yard for 1 minute (under her threshold) while she listens to her favorite music or dances or watches funny cat videos, anything that activates the happy places in her brain. Repeat this step until you going out the door makes her feel good. NO anxiety at all, just relaxed or happy because yay, cat videos. 

2. You go outside for several times a day, for between 1 minutes and 2 minutes with same proceedure as above. If not anxiety, continue to next step. If 2 minutes creates anxiety back up to 1 minute 20 seconds or however long does NOT provoke anxiety. 

3. You go outside, but just right outside the door, for 2 minutes. You let her know you will be outside the door. Or even outside a window where she can see you. Repeat until she is totally okay with this. 

4. You go outside for 1 minute again, but where she can't see you. again, repeat or back down to insure no anxiety. 

5. You go outside several times for 2 minutes, where she can't see you. again, repeat or back down to insure no anxiety. 

6. You go outside for 3 minutes, but stay outside window where she can see you, or right outside door, whatever works for her. again, repeat or back down to insure no anxiety. 

7. You go outside for 3 minutes where she can't see you. again, repeat or back down to insure no anxiety. 

etc etc. The idea is you increase distance OR time, but not both at once. You do NOT increase either if there is anxiety. 

Eventually work up to longer times and distances, and maybe add in you sitting in the car but not driving away, then driving to end of driveway and pulling back in, driving to neighbors and coming back, etc. Again, baby steps forward, and repeat each step until there is NO anxiety. 

IF you instead go too fast, create anxiety, she has a panic attack, you are increasing the chance of anxiety next time. So you have to stay under threshold. 

It takes a LONG time. BUT it's faster than not doing anything. Many people will need medication to even start this. 

I also assume she knows grounding techniques, etc?

 

This is basically what we have been doing for the last 3 years. It really just does not work for her. 

[ktgrok]

1 hour ago, Shelydon said:

This is basically what we have been doing for the last 3 years. It really just does not work for her. 

When you say it doesn't work, do you mean that you can never progress? Or that you do progress, but then something happens and she is set back?

[Shelydon]

1 hour ago, ktgrok said:

When you say it doesn't work, do you mean that you can never progress? Or that you do progress, but then something happens and she is set back?

She doesn't progress. She has so many things she desperately wants to do, just can't unless I am with her. 

[Innisfree]

30 minutes ago, Shelydon said:

She doesn't progress. She has so many things she desperately wants to do, just can't unless I am with her. 

Probably you’ve done this, but I’d be looking closely at the very first stage that @ktgrok outlined. Have you found any threshold she can tolerate, whether it’s having you ten feet away indoors, or in the next room, or whatever? If she’s hanging out with friends while you’re in the car, some threshold exists. Then it’s a matter of providing enough positive reinforcement, for enough repetitions, to start to reduce her anxiety. Maybe find more ways to reinforce her ability to cope: more friend time, more cat videos, whatever works.

@ktgrok is right that it will take a long time, and moving too fast will set her back. But that doesn’t mean the desensitization isn’t able to work.

[ktgrok]

1 hour ago, Shelydon said:

She doesn't progress. She has so many things she desperately wants to do, just can't unless I am with her. 

That makes it sound like you are trying to take steps that are too large, perhaps? I was not kidding when I suggested that you increase in increments of 1 minute or less, and in distance by a foot or two. And not increase distance and time at the same time. 

So, you said you sit in the car while she socializes with friends. Are you in eyesight when you do this? How far away? Whatever that it is right now, that she is comfortable with, that is threshold. So then you park 1 parking space farther away the next 3 times. And then 1 space farther than that the next few times. Etc. If she is okay with you being at the other side of the parking lot, but in sight, then discuss having her spend 1 minute of the event with her back to you, the build up to 3 minutes, etc. When that is okay, try driving around the parking lot 1 lap and coming right back and parking where she can see you. Repeat multiple times so that she has zero anxiety before trying to drive out of the parking lot and coming back. 

It really truly needs to be broken down into steps that small. 

Edited to add - you have to keep written notes while doing this, both so you don't mess up and go too far too fast, and so you can see you ARE making progress. Keep a record of location, distance, time, and her state of mind. And any other mitigating factors. 

Another example would be you sitting next ot her in a classroom, then you sitting a few desks over, then you sitting in the back, then you standing by the door, then you walking out and back in, etc. This may not be feasible in a college class, but might be in a community class at the local community center or similar, and the art part would help with anxiety perhaps. Or a cooking class or whatever. 

Edited July 8 by ktgrok

[Starr]

25 minutes ago, ktgrok said:

That makes it sound like you are trying to take steps that are too large, perhaps? I was not kidding when I suggested that you increase in increments of 1 minute or less, and in distance by a foot or two. And not increase distance and time at the same time. 

So, you said you sit in the car while she socializes with friends. Are you in eyesight when you do this? How far away? Whatever that it is right now, that she is comfortable with, that is threshold. So then you park 1 parking space farther away the next 3 times. And then 1 space farther than that the next few times. Etc. If she is okay with you being at the other side of the parking lot, but in sight, then discuss having her spend 1 minute of the event with her back to you, the build up to 3 minutes, etc. When that is okay, try driving around the parking lot 1 lap and coming right back and parking where she can see you. Repeat multiple times so that she has zero anxiety before trying to drive out of the parking lot and coming back. 

It really truly needs to be broken down into steps that small. 

Edited to add - you have to keep written notes while doing this, both so you don't mess up and go too far too fast, and so you can see you ARE making progress. Keep a record of location, distance, time, and her state of mind. And any other mitigating factors. 

Another example would be you sitting next ot her in a classroom, then you sitting a few desks over, then you sitting in the back, then you standing by the door, then you walking out and back in, etc. This may not be feasible in a college class, but might be in a community class at the local community center or similar, and the art part would help with anxiety perhaps. Or a cooking class or whatever. 

A friend of mine did this with good results. It really took a long time but was so worth it. 

[Ottakee]

As an addition to the very slow baby steps mentioned above, I have had very good success with a student with severe anxiety with an “I can do it “ list.   Student would write down on her list any tiny little baby step she made in her areas of severe anxiety.  
 

she chose to have this on her desk where she could reference it often and see how far she has come.  Your daughter could add a note on her phone, write in a notebook, post it on the fridge, or whatever she wants.

I can’t say it will help but if she can visually see that she was 10 ft from mom and then 12 feet, or out of sight for 3 minutes or whatever it might help.

[Shelydon]

2 hours ago, ktgrok said:

That makes it sound like you are trying to take steps that are too large, perhaps? I was not kidding when I suggested that you increase in increments of 1 minute or less, and in distance by a foot or two. And not increase distance and time at the same time. 

So, you said you sit in the car while she socializes with friends. Are you in eyesight when you do this? How far away? Whatever that it is right now, that she is comfortable with, that is threshold. So then you park 1 parking space farther away the next 3 times. And then 1 space farther than that the next few times. Etc. If she is okay with you being at the other side of the parking lot, but in sight, then discuss having her spend 1 minute of the event with her back to you, the build up to 3 minutes, etc. When that is okay, try driving around the parking lot 1 lap and coming right back and parking where she can see you. Repeat multiple times so that she has zero anxiety before trying to drive out of the parking lot and coming back. 

It really truly needs to be broken down into steps that small. 

Edited to add - you have to keep written notes while doing this, both so you don't mess up and go too far too fast, and so you can see you ARE making progress. Keep a record of location, distance, time, and her state of mind. And any other mitigating factors. 

Another example would be you sitting next ot her in a classroom, then you sitting a few desks over, then you sitting in the back, then you standing by the door, then you walking out and back in, etc. This may not be feasible in a college class, but might be in a community class at the local community center or similar, and the art part would help with anxiety perhaps. Or a cooking class or whatever. 

We have been doing a step by step plan with a therapist for 3 years. It looks  roughly like this.  She wants to be able to drive to a friend's house and spend the night or go to camp or a dance. We cannot get there even after 3 years of consistent therapy, meds and work. 

[Terabith]

I'm glad the doc is increasing the SSRI.  Which one is she on?  Is it the only one she's tried?  How high of a dose?  

This was exactly the issue that prompted us to start medicating my youngest, but she was 4, almost 5, and responded immediately and positively.  

I do think the gut issues almost have to be related.  No idea how to do that.  I think trying ibuprofen around the clock for a few days would be a worthwhile experiment, to see if it helps.  

I would also ask about the possibility of other meds like a tiny dose of trazodone, wellbutrin, meds like nortriptyline, etc.

[Shelydon]

57 minutes ago, Terabith said:

I'm glad the doc is increasing the SSRI.  Which one is she on?  Is it the only one she's tried?  How high of a dose?  

This was exactly the issue that prompted us to start medicating my youngest, but she was 4, almost 5, and responded immediately and positively.  

I do think the gut issues almost have to be related.  No idea how to do that.  I think trying ibuprofen around the clock for a few days would be a worthwhile experiment, to see if it helps.  

I would also ask about the possibility of other meds like a tiny dose of trazodone, wellbutrin, meds like nortriptyline, etc.

Zoloft- 75 mg. She has tried others, but experienced extreme side effects. I agree that the GERD and GAD are related, I just can't figure out how. She has the dozens of supplements for either anxiety or GERD over the years, but no changes. 

[PeterPan]

5 hours ago, Shelydon said:

She doesn't progress. She has so many things she desperately wants to do, just can't unless I am with her. 

Have you considered running genetics to see if you could find any treatable causes of anxiety? There's a gene that affects activation of b6 and also the zinc transporter. If she is homozygous for either of those, then treating them might give a % improvement.

[Lawyer&Mom]

I had crippling anxiety post-COVID and also chronic GERD.  We think COVID exacerbated my underlying Mast Cell Activation Syndrome.  I also have Autism and Ehlers-Danlos Syndrome.  I’m currently on huge daily doses of H1 and H2 antihistamines. (You need both to get the full impact.) Made a big difference for my GERD and my anxiety.  Other things that helped: a low dose SSRI, boatloads of methylated B-vitamins (I have mixed methylation status), weighted blankets,  talk therapy.  There wasn’t one magic bullet, it was all the little things working together.  My anxiety is better than ever, I should have done all this decades ago.  

[Terabith]

41 minutes ago, Shelydon said:

Zoloft- 75 mg. She has tried others, but experienced extreme side effects. I agree that the GERD and GAD are related, I just can't figure out how. She has the dozens of supplements for either anxiety or GERD over the years, but no changes. 

75 mg is still a pretty low dose, so there's definitely room to go up. Seems worth trying anyway.

[KSera]

36 minutes ago, Shelydon said:

Zoloft- 75 mg. She has tried others, but experienced extreme side effects. I agree that the GERD and GAD are related, I just can't figure out how. She has the dozens of supplements for either anxiety or GERD over the years, but no changes. 

In addition to the things lawyer&mom says, I’m losing track a little bit of which things you said she’s already tried, has she already been taking the probiotic strains that are particularly good for reducing anxiety? Did we already talk about switching the b vitamin forms depending on which kind she’s taking? If she’s been taking methylated ones, that can be a major anxiety/panic attack provoker for some people. There are other forms that work well for people with that reaction  

 

[Carol in Cal.]

On 6/11/2024 at 9:43 AM, Shelydon said:

She will usually tell me, I know that I'm supposed to stop the thought, but I do not understand how you're actually supposed to *do* that. And honestly, I don't have anything for her. I am not successful in stopping a thought, I just don't react to it if it's problematic. 

I don’t know that stopping the thought works for everyone, but replacing it works for some that stopping it doesn’t work for.  That means consciously choosing to think about something else, usually something prechosen for that purpose, like imagining an ideal studio apartment, or imagining a beautiful forest clearing or something like that.

[Carol in Cal.]

Re GERD—I had it for years, and it gave me asthma and other problems.  Getting it to stop boiled down to:

1.  Head elevation at night

2.  Prilosec as needed, prescription strength

3.  Never going to sleep until at least 2 hours after a meal

4.  Avoiding getting very full, ever

5.  Drinking steeped ginger, rather a lot of it.  This healed the production of it enough to stop the cycle, and is the most important of all the steps.  The Prilosec reduced the acidity of the reflux liquid but not the incidence of it.  This stopped its production.