What are some additional options for severe anxiety?

[Lecka]

This is just on the behavioral side…..

Okay, yes, number one priority, don’t do too much too fast and somebody gets upset.  Yes.  That is horrible.

But number two, it is impossible to do number one perfectly.  Sometimes someone is probably going to get upset and it may be a setback (and have to go back a level).

What I remember from a previous post, she has said she would self-harm or be suicidal.  
 

Okay, I have been completely bought-in that “the thing my child is worried about, or the reaction he might have, is so horrible it must be avoided.”  
 

And then somebody has talked to me a little bit and said “how would that work? What would that look like?  What would actually happen?”

 

Okay, so I know it was different stakes.  Stakes were more along the lines of, feeling very sick, or having a horrible, sad meltdown.  
 

But in talking to someone, I could feel like, number one, these possible (and likely at a certain level) outcomes were something we could all handle and get through.  And number two, the status quo was worth changing even if we had to go through things like this.  
 

Also I wasn’t going to be throwing anyone to the wolves, there were other ways for there to be a caring person or a supportive environment.  Even if it wasn’t “me” and my child would get extremely upset, it was ultimately going to be okay.  
 

It is very hard.  I had with one of my kids, basically, if he felt sick I would come, and this escalated, he felt more and more sick, I did come.  Then what happens if I leave him?  He is already escalated to where he has bad stomachaches.  And then I “don’t” come and he doesn’t know how that works, he has to go through it on some level, and — it is horrible.  
 

I had a lot of explanation about how things can escalate in this way, and if a child has a lot of experiences of feeling anxious and then a parent comes while they are very anxious, it can make them feel like they really “had to have” their parent come, they think that “has to happen” and the next time they might get more and more anxious, and every other time the parent has come.  So then how anxious do they get with the parent not coming?  Very anxious.  I might have been in that kind of situation with being stalled at the smallest, tiniest step.  Maybe somebody can find a smallest, tiniest step to take, but I think there’s also a side where it isn’t always possible to do in a pain-free process.  But things can still be kind, kids can still be okay and adults can know they are in a good situation and not “thrown to the wolves.”  
 

In behavioral terms I also did be like that for whatever reason something started, somewhere in the process I reinforced a lot of anxious behavior.  I did see myself as fitting into that framework, the pieces fit together.  
 

I also feel like other people (a counselor, a therapist) had ideas I just wasn’t thinking of when I did feel totally stuck and like — what can I even do.  
 

But basically I did not manage to have my kids avoid becoming very upset and feeling abandoned, and it took more than one time of them feeling this way.  But I did think they were really safe and cared about (I was basically leaving them with other people), and I also was at the end of my rope, and I also felt like it would work…. And with my son who was in ABA therapy, the way they looked at things we could see progress pretty quickly (aka — he is upset for 5 minutes and then calms down, and is fine, instead of being upset for a lot longer time… he stayed at being upset for 5 minutes and then being fine for quite a while — he didn’t quickly go to 0 upset, but he quickly went to being a lot less upset and for a much shorter time).  I am aware some people think this is unbearably mean and cruel, but I think that doesn’t take into consideration how much distress kids can have in feeling anxiety and also how much they can miss out on they really want to do and how they really would get to feel more independent and capable.  
 

We did not have the exact same situation, though, and there are a lot of differences.  I also don’t think this works for everyone, especially with a trauma background.  
 

Mainly I do think, if things are stuck at “she can’t take the tiniest step or something horrible will happen” it did help me a lot to have someone basically talk to me about how maybe it was possible anyways and if the horrible thing happened maybe the horrible thing wouldn’t happen, or maybe another person could keep my child cared for and safe, or prevent something from happening, or respond to it in a good way if it did happen.  Or they could say “you’re worried about this certain thing — here’s how we could prepare for it and make it less likely to happen, but be ready to respond if it did happen.”  That was a big turning point for me.  Another turning point for me was just recognizing us as being in an escalating cycle where things were not working out, and I did think we fit into it.  Basically — I comfort my child, he thinks he needed to be comforted, and then the next time he thinks he needs to be comforted, and it just got more and more intense this way.  I think there is a place for kids going through feeling horrible and upset, and then seeing they made it, they are okay.  I 100% think it’s better to prevent that and avoid it, and take baby steps, and prevent all the stress chemicals and the fallout from getting so upset.  But I think it’s not always possible to get that perfect and avoid upset.  Sometimes people make mistakes even if they are doing their best, and that has to be okay, because it is going to happen.  I do also think if there’s a setback and kids go back to an earlier baby step, that can be part of the process, and they might move through the process more quickly if they do have a setback to an earlier step.  I don’t think it’s guaranteed but I think it is very possible.  

Edit:  I definitely don’t think to do it without medication or health care, but I think sometimes this kind of thing is needed too, and just medication and health care may not change something that has become a pattern.  

 

Edited July 9 by Lecka

[Shelydon]

11 hours ago, Carol in Cal. said:

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.

She does the first three regularly, but I have not had her take ginger, I'll look up how you steep it. Thx

[Carol in Cal.]

1 minute ago, Shelydon said:

She does the first three regularly, but I have not had her take ginger, I'll look up how you steep it. Thx

I’ll just tell you what I do.  I take a thick piece that is about 1-2 inches long, and peel it.  Then slice it across the grain pretty thinly.  Then put the slices in a big mug, preferably commuter size, and pour boiling water over them.  Let steep until lukewarm and then drink.  I reuse the same slices several times until they lose their strength.  

[ktgrok]

19 minutes ago, Shelydon said:

She does the first three regularly, but I have not had her take ginger, I'll look up how you steep it. Thx

just be careful, for me ginger is one of my biggest triggers for reflux. 

[KSera]

8 minutes ago, ktgrok said:

just be careful, for me ginger is one of my biggest triggers for reflux. 

I almost said that, but held off because I thought maybe I was just weird. I used to enjoy ginger candy and tea regularly, but now it causes me GERD symptoms (and reflux isn’t something I generally have an issue with, so far it seems to be only ginger that triggers it 🤷‍♀️). 

[Carol in Cal.]

1 hour ago, ktgrok said:

just be careful, for me ginger is one of my biggest triggers for reflux. 

I’ve heard that that is possible, but my experience is the opposite.  Like mint, which is generally either fantastic or horrible for reflux, I guess ginger can vary from person to person.

[Shelydon]

5 hours ago, ktgrok said:

just be careful, for me ginger is one of my biggest triggers for reflux. 

I've never heard of that! That's good to know. 

[ktgrok]

1 hour ago, Shelydon said:

I've never heard of that! That's good to know. 

It, like mint, can relax the lower esophogeal sphincter, allowing acid to flow up. At least, that is my understanding of it. So for people whose reflux is caused by a leaky LES, ginger definitely exacerbates the problem. There can be other causes of reflux I believe, and for those people maybe ginger helps. 

It's also one reason why ginger and mint can help nausea/bloating - by relaxing the LES you are able to burp more easily, which relieves some pressure. 

[matrips]

I read through the first page and noted it starting after Covid and various mentions of ssris and sometimes making inflammation worse.

so starting from there- one simpler thing to try if you haven’t is having her take NAC and Quercetin to reduce any inflammation in her body. Those two supplements have become staples in our house.

[Lecka]

On 7/8/2024 at 1:02 PM, 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. 

I have been thinking about this…. So, first of all, this is something we did.  It did work out overall!

But there were a lot of hard times, there were times it didn’t go smoothly, there were times I felt like a horrible person and worried about my kids and worried they would think I didn’t love them or I was scarring them.  
 

When I talked to the counselor/nurse/therapist, they would reassure me and basically say, if I messed up, it would still be okay.  
 

I definitely think it would be better to always get things just right, but I did not manage that.  
 

But things did get better, and I have a good relationship with my kids.  We are close.  

 

I definitely was doing a parent intervention and part of it was I needed to talk to people and feel like it was going to be okay if my kids did feel extreme discomfort.  It was very hard for me.  I don’t think I could have done it without education, support, encouragement, some accountability, etc, from other people.  
 

I also think maybe my kids were not motivated to participate.  They were not going to watch cat videos.  They were going to say “no, I don’t like this, I don’t want this” or that’s what their actions would be.  They weren’t going along with it.  That got better but it is not something where I feel like we started with them going “here I am, content, watching cat videos.”

 

I am sure I’m taking that as oversimplified, but it’s something where I think it’s a reason I did feel stuck.  I think I had a lot of things where I would feel like “here are 5 reasons this won’t work” and then someone could help me change something or help me look at it a different way where it would seem like I could do it.  

 

[cjzimmer1]

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

 

The genetics can be the cheapest version of 23andme or ancestry. You can watch for a deal and download the raw data to run through engines.

Not OP but reviewing this thread for more ideas for my own kiddo.  Is one of these better than the other.  23 and me has a version on sale for $69.99 on amazon right now so I'm wondering if I should get it unless ancestry is much better I'd go for that.  Also do you have a step by step process for running it through the engines.  As a newbie to all this, I have no idea what those engines might be nor the steps to do this once we obtain the genetic data.

[Lecka]

I have a small update….

From googling, I was doing “parent accommodations for anxiety.”  This was one part of what was addressed.  
 

One, to do this, the child does not have to be a willing participant.  
 

Two, it is expected that the child may feel distressed.  
 

It had been bothering me that maybe I could have skipped the part where a child feels distressed, or I could have had more buy-in.  Because, I think a lot is the same as what people do when there is buy-in for the child and they can extend what kids can do without the child experiencing distress.  
 

I still think of it more as something very unpleasant, but I can say my oldest son (the main one with this) became much more independent and became a much more self-sufficient, competent person.  I can also say that I have much more confidence in him and I worry much less.  He has handled some things on his own that have surprised me, too.  
 

 

[Shelydon]

DD got some endoscopy results back-- not damage, no inflammation, no celiac.  So no reason for the constant reflux, but no damage thus far.  Anxiety is steadily getting worse, things she could do like walk a couple of houses away she can no longer do.  On a waiting list for a new doctor, but it will take awhile.

[PeterPan]

17 hours ago, cjzimmer1 said:

one of these better than the other.

I wrote you back channel.

9 hours ago, Shelydon said:

Anxiety is steadily getting worse, things she could do like walk a couple of houses away she can no longer do.

How are her thyroid levels and zinc? Zinc affects GABA, so zinc off for any reason (kidney problems, genetics, having been sick recently, whatever) could do that. Hyperthyroid or even very low thyroid can cause anxiety too. And there's a rare b6 activation issue that can cause pretty astonishing anxiety. 

The thyroid you'd need labs for but the other two would be safe and inexpensive to try just to see what happens. We're talking $5 for the zinc at Kroger and $15 for a bottle of p5p (activated form of b6). Is she taking any b vitamins now or any supplements containing methyls? Sometimes when people have COMT defects, doing supplements or meds with methyls actually makes the anxiety worse.

I hope you can get it figured out. 

[PeterPan]

9 hours ago, Shelydon said:

constant reflux,

Does she tolerate yogurt, kefir, or a probiotic? The bugs in kefir are different from yogurt, and it's a thin, drinkable product that doesn't taste bad in the flavors (strawberry, etc.). It could be that what she's calling reflux is some kind of gut flora issue causing the burning and discomfort higher up. 

[kbutton]

11 hours ago, Shelydon said:

DD got some endoscopy results back-- not damage, no inflammation, no celiac.  So no reason for the constant reflux, but no damage thus far.  Anxiety is steadily getting worse, things she could do like walk a couple of houses away she can no longer do.  On a waiting list for a new doctor, but it will take awhile.

Did they look for mast cells?

[ktgrok]

Can’t remember, has she had a barium swallow study done? 

[Shelydon]

2 hours ago, PeterPan said:

I wrote you back channel.

How are her thyroid levels and zinc? Zinc affects GABA, so zinc off for any reason (kidney problems, genetics, having been sick recently, whatever) could do that. Hyperthyroid or even very low thyroid can cause anxiety too. And there's a rare b6 activation issue that can cause pretty astonishing anxiety. 

The thyroid you'd need labs for but the other two would be safe and inexpensive to try just to see what happens. We're talking $5 for the zinc at Kroger and $15 for a bottle of p5p (activated form of b6). Is she taking any b vitamins now or any supplements containing methyls? Sometimes when people have COMT defects, doing supplements or meds with methyls actually makes the anxiety worse.

I hope you can get it figured out. 

She takes Methyl B12 by Jarrow. If she takes a multi, she uses Pure Encapsulation. She takes zinc daily. Her thyroid was normal in May when we did blood work. 

[Shelydon]

1 hour ago, kbutton said:

Did they look for mast cells?

During the endoscopy? I don't think so.

[Shelydon]

42 minutes ago, ktgrok said:

Can’t remember, has she had a barium swallow study done? 

No. Doing some testing on her esophageal sphincter would be the next step if we wanted to pursue that. Her GI doctor does not recommend surgery, so he felt like doing the testing would be a waste of time and money. 🤷‍♀️ 

[Shelydon]

2 hours ago, PeterPan said:

Does she tolerate yogurt, kefir, or a probiotic? The bugs in kefir are different from yogurt, and it's a thin, drinkable product that doesn't taste bad in the flavors (strawberry, etc.). It could be that what she's calling reflux is some kind of gut flora issue causing the burning and discomfort higher up. 

We keep Kefir on hand at all times, everyone in my family drinks it except for her. She is allergic to the protein and dairy, so cannot have any Dairy at all. She eats dairy-free coconut yogurt. And take some million different kinds of probiotic capsules. We just finished 3 months of a new kind. Didn't see any different so we're moving on to the next one. 

[ktgrok]

8 minutes ago, Shelydon said:

No. Doing some testing on her esophageal sphincter would be the next step if we wanted to pursue that. Her GI doctor does not recommend surgery, so he felt like doing the testing would be a waste of time and money. 🤷‍♀️ 

Huh. I’d think at least you would know if in fact the issue is a weak LES. If it is, that lets you stop pursuing some other ideas and you would know what you are addressing. It’s not invasive at all, just swallowing the stuff and then taking pictures/videos of you in various positions. 

[Ottakee]

Likely you already covered this but did they test her for PANDAS?   Caused my nephew severe anxiety.

[kbutton]

3 hours ago, Shelydon said:

During the endoscopy? I don't think so.

That is one way to diagnose mast cell activation disorder, which I know has been mentioned in the thread.

[PeterPan]

4 hours ago, Shelydon said:

She takes Methyl B12 by Jarrow.

And just to be sure, have you run genetics to know the methylated b vitamins are appropriate? Giving the incorrect form can exacerbate anxiety. If you drop anything methylated and drop high methyl foods (chocolate, caffeine, orange juice, etc.) does she feel better or worse? 

[Shelydon]

4 hours ago, kbutton said:

That is one way to diagnose mast cell activation disorder, which I know has been mentioned in the thread.

Let me look back at her report, Thx

[Shelydon]

3 hours ago, PeterPan said:

And just to be sure, have you run genetics to know the methylated b vitamins are appropriate? Giving the incorrect form can exacerbate anxiety. If you drop anything methylated and drop high methyl foods (chocolate, caffeine, orange juice, etc.) does she feel better or worse? 

She does not eat chocolate, OJ or consume any caffeine b/c of reflux. We ran genetics a few years ago. There was nothing remarkable in the report.  We could possibly do it again. 

[Shelydon]

6 hours ago, Ottakee said:

Likely you already covered this but did they test her for PANDAS?   Caused my nephew severe anxiety.

PANDAS was ruled out because she only has anxiety as the behavioral symptom. Apparently the child needs multiple symptoms to consider PANS PANDAS

[Shelydon]

On 7/9/2024 at 10:32 PM, Lecka said:

I have been thinking about this…. So, first of all, this is something we did.  It did work out overall!

But there were a lot of hard times, there were times it didn’t go smoothly, there were times I felt like a horrible person and worried about my kids and worried they would think I didn’t love them or I was scarring them.  
 

When I talked to the counselor/nurse/therapist, they would reassure me and basically say, if I messed up, it would still be okay.  
 

I definitely think it would be better to always get things just right, but I did not manage that.  
 

But things did get better, and I have a good relationship with my kids.  We are close.  

 

I definitely was doing a parent intervention and part of it was I needed to talk to people and feel like it was going to be okay if my kids did feel extreme discomfort.  It was very hard for me.  I don’t think I could have done it without education, support, encouragement, some accountability, etc, from other people.  
 

I also think maybe my kids were not motivated to participate.  They were not going to watch cat videos.  They were going to say “no, I don’t like this, I don’t want this” or that’s what their actions would be.  They weren’t going along with it.  That got better but it is not something where I feel like we started with them going “here I am, content, watching cat videos.”

 

I am sure I’m taking that as oversimplified, but it’s something where I think it’s a reason I did feel stuck.  I think I had a lot of things where I would feel like “here are 5 reasons this won’t work” and then someone could help me change something or help me look at it a different way where it would seem like I could do it.  

 

My DD feels like when she has panic attacks she regresses and loses any ground she has gained. She also feels like she will hurt/kill herself to stop the anxiety, so just desensitize procedures are not working for us. 

[KSera]

4 hours ago, PeterPan said:

And just to be sure, have you run genetics to know the methylated b vitamins are appropriate? Giving the incorrect form can exacerbate anxiety. If you drop anything methylated and drop high methyl foods (chocolate, caffeine, orange juice, etc.) does she feel better or worse? 

I agree that making sure it’s not the methylated bees making things worse is important, and such an easy one. If she didn’t have  the gene that requires her to have to have methylated Bs, I would stop the methylated vitamins entirely  for a couple weeks. She could take a non methylated form. Methylated b vitamins caused repeated panic attacks and one of mine when that was never a thing before. It took us a while to figure out that was the cause. Actually didn’t figure it out until starting them again about a year later and having the same thing happen.
 

 

13 minutes ago, Shelydon said:

My DD feels like when she has panic attacks she regresses and loses any ground she has gained. She also feels like she will hurt/kill herself to stop the anxiety, so just desensitize procedures are not working for us. 

Poor kid. I’m pretty sure I recommended the Claire Weeke’s audio to you? Did she have a chance to listen at all? It’s a completely different approach to the desensitization one.

[Drama Llama]

What has been most helpful for my kid with separation anxiety, which in our case is definitely trauma linked, was breaking the cycle of accommodations.  We had success with techniques based on the SPACE model, which is based on the theory that childhood anxiety is something that exists and is fed and grows in the context of parent child interactions.  Not that it's caused by parenting, or that it's the parents' fault, but that that's where it's developed, and specialized techniques are needed to disrupt the pattern, with a focus on breaking the cycle of accommodations.  As @Lecka said, stopping accommodations usually leads to distress, it's not fun or comfortable for the parent or the child, but when the parent stops accommodating the child learns that they can manage without and the anxiety lessons. 

Having said that, given that she's controlling the dynamic with threats of suicide, which of course need to be taken seriously, I would imagine that stopping accommodations would need to happen in a setting with close supervision and support, likely a hospital.  Have you explored hospitalization or partial hospitalization as an option before? 

[Lecka]

I think the therapist helped to be positive and find signs of something being a learning experience or some part of it being good.  I also think sometimes after a setback, it’s possible for progress to be faster than it was the first time around.  
 

For the feelings, I don’t know how exactly, but they would talk to me about how “I” knew my son was not going to die, I knew he was going to be okay.  Then I had to support him that “I” knew it would be really hard but I knew he wouldn’t die.  Realistically I didn’t think he would die.  But if I thought “oh no he can’t possibly do that” then it might make him think “mom thinks something really bad is going to happen to me.”  “Mom doesn’t think I can handle it.”  
 

Honestly I hope things are better than 15 years ago for how they can say to do things, because it was very hard.

 

But I did also feel like, what if something happened and I couldn’t do x, y, z, I thought that might happen and trying to do it with a therapist and stuff was better than “hoping for the best.”

 

Also my son was getting worse, which I think can happen with anxiety, it can have a way of getting worse.  
 

It’s a hard situation to be in and I’m so sorry your daughter is going through this, it is awful for her to feel this way.  

[Shelydon]

33 minutes ago, KSera said:

I agree that making sure it’s not the methylated bees making things worse is important, and such an easy one. If she didn’t have  the gene that requires her to have to have methylated Bs, I would stop the methylated vitamins entirely  for a couple weeks. She could take a non methylated form. Methylated b vitamins caused repeated panic attacks and one of mine when that was never a thing before. It took us a while to figure out that was the cause. Actually didn’t figure it out until starting them again about a year later and having the same thing happen.

Thanks! I'll remove the B vitamin and see what happens

 

Poor kid. I’m pretty sure I recommended the Claire Weeke’s audio to you? Did she have a chance to listen at all? It’s a completely different approach to the desensitization one.

Yes, we are working through some Claire Weeke's information.  I think I am just at the point were I cannot help her, but we can't find anyone who seems to be able too.

[Shelydon]

Thanks all!  She has appointments for allergy testing (she always has huge allergy shiners), replacing PE tubes for her ears, psychiatrist and we are searching for another therapist. 

This is just so draining on me and my other kids.  I need to do some things to take care of my health, but I just don't have the option to do that right now.

[ktgrok]

1 hour ago, Shelydon said:

My DD feels like when she has panic attacks she regresses and loses any ground she has gained. She also feels like she will hurt/kill herself to stop the anxiety, so just desensitize procedures are not working for us. 

Poor thing. 

[Lecka]

17 minutes ago, Shelydon said:

This is just so draining on me and my other kids.  I need to do some things to take care of my health, but I just don't have the option to do that right now.

I’m sorry 😞

[KSera]

I think you sound at the point of needing to do something like ketamine assisted therapy, TMS, or a residential stay. Honestly, a residential stay (not an inpatient hospital), though I imagine it would be a scary prospect to your daughter, might be really helpful in getting her to see that she can handle it while being in a supported, safe environment. I’m hoping for something that will be a breakthrough for her soon.

[PeterPan]

4 hours ago, Shelydon said:

We could possibly do it again. 

Was it something like Genesight that synthesizes or something like MaxGen that gives you a long list of genes and raw data to look at? If you have raw data, you could run that through another engine. It seems improbable that absolutely nothing is indicated in her genes. It's more probable that the report wasn't looking at the genes to show the issues.

[Shelydon]

9 hours ago, PeterPan said:

Was it something like Genesight that synthesizes or something like MaxGen that gives you a long list of genes and raw data to look at? If you have raw data, you could run that through another engine. It seems improbable that absolutely nothing is indicated in her genes. It's more probable that the report wasn't looking at the genes to show the issues.

Genesight. Maybe we could do something like 23 and me and run the data

[BeachGal]

Are the anxious feelings always there? Does her anxiety spike such as when she feels suicidal? Is it there all the time or occasionally like a sudden, intrusive thought? I wonder if keeping a log could give you some clues as to something that brings them on.

Started around age 14 when big brain changes begin could be a clue.

Could a Covid infection have exacerbated things?

Microbiome or vagus nerve might be playing a role. Probiotic pills might not help but eating specific foods might. Does she keep a food log?

[Mrs Tiggywinkle Again]

11 hours ago, KSera said:

I think you sound at the point of needing to do something like ketamine assisted therapy, TMS, or a residential stay. Honestly, a residential stay (not an inpatient hospital), though I imagine it would be a scary prospect to your daughter, might be really helpful in getting her to see that she can handle it while being in a supported, safe environment. I’m hoping for something that will be a breakthrough for her soon.

I agree, honestly, it sounds like she’s at or even past the point of residential treatment.  The hard part is finding it and if she’s over 18 needing to agree, but this really sounds like she needs a residential, away from you help to work through this.

[PeterPan]

48 minutes ago, Shelydon said:

Genesight. Maybe we could do something like 23 and me and run the data

Bingo. I've ranted on here about Genesight so much I just thought everyone had seen that ad nauseum. It's fast food medicine, too linear, and doesn't look at nearly enough. You cannot do one gene to one med because the systems as a whole (methylation, etc.) have to be considered. And it doesn't look at a bunch of genes that directly affect anxiety with easy treatments (zinc transporter, vitamin D receptor, nbpf3 for the activation of B6, etc). When someone has issues this severe, you probably have multiple things going on, none of which Genesight looked at.

Consider this instead.

https://maxgenlabs.com/collections/genetic-testing-kits/products/the-works-panel

Edited July 14 by PeterPan

[PeterPan]

I'll go back to this rant about Genesight and all the really important stuff they don't run. Biotin. It's $4 at Kroger, so google it. Maybe not a problem for everyone but if you happen to be homozygous for a gene affecting it and you experience *stress*, sickness, etc. then boom suddenly you have this tornado.

And while I'm not saying allow people to be unsafe, I will question whether residential actually gets to underlying root problems. Just depends on what those are, sigh. They can be an answer why meds aren't working/enough.

[Shelydon]

We've needed to reduce the SSRI.  The additional dose is causing her to not sleep at all.  Now we are trying a benzo drug twice a day for a few weeks to see if that helps.  Tried once and it made her vomit, so trying again with food.

[KSera]

If she’s going to take a benzo, can it be on an only as needed basis? Taken daily like that, the body can pretty quickly habituate to them and even after just a few weeks, trying to reduce them can cause a rebound in anxiety more severe than the initial symptoms. Did she already try hydroxyzine for the anxiety? It can be taken daily or as needed and is not habit forming. It also helps with sleep. Maybe she already tried that, though. 

[livetoread]

39 minutes ago, Shelydon said:

Now we are trying a benzo drug twice a day for a few weeks to see if that helps. 

Please know that tolerance can develop in just a few days and addiction can happen in 3-4 weeks of daily use. Not everyone, certainly, but it's a risk even when taken as prescribed.

What if they work, then what? I understand how awful this is for all of you, but these drugs are not a long term solution, and coming off of them can be dangerous and difficult. I'm so sorry this is happening.

[Lecka]

I’m sending a pm. 

[PeterPan]

2 hours ago, Shelydon said:

benzo

I'll ditto the others that I would be looking for a 2nd opinion. Some psychs are really fast to dispense benzos, almost as if to say they're out of tools. And it's not that I'm anti benzos because I have a family member on them where it makes sense. But with a very young person, that's just really young to be going that way. One of my people was offered them and I turned them down and got a new psych. 

[PeterPan]

2 hours ago, Shelydon said:

The additional dose is causing her to not sleep at all. 

Most SSRIs are methyl donors, so the not sleeping could be that the methyls in it are stimulating. People with COMT defects tend not to tolerate those methyl donor meds as well. And the great irony is that the symptoms of the methyls ramping up will include, drum roll, anxiety.

The methylation issues matter because hydroxyzine mentioned on here is also a med with methyls and also going to be paradoxical (improving anxiety and then stimulating with the methyls). 

She may do better with a completely different class of med like an atypical antipsychotic. 

[Terabith]

Yeah, this is all kind of alarming. Ben’s make sense for things like fear of flying, something that you don’t do often.  Is this a psychiatrist?  I definitely think you need a second opinion.