A MUST READ

[sosudden]

Helping Your Anxious Child: A Step by Step Guide for Parents.

 

This is something concrete for parents to read, know, understand, practice, learn, hold on to...

Work pages, activites, explains it for parents AND for parents to explain to children.

 

When DD10 was in the worst of this thing called PANDAS/PANS, I could not ever imagine my DD10 benefitting from intense CBT/ERP. And at her worst she could not even have made it to the building I'm sure. BUT, 9 months postIVIG, uncovering and treating and ridding co-infections, and TIME ---- she is actively partipating and making huge strides. Still a work in progress. Anxiety can still be almost thought he roof at times. But only at times. And sometimes not even daily!!

 

((hugs)) to all you amazing moms and dads!!!!

[kos_mom]

Sosudden,

 

I am very familiar with ERP for clear obsessions followed by clear compulsions (had to do this for two years with DS), but I am a little fuzzier on how this works for anxiety because sometimes the triggers are so much more diffuse.

 

Two examples from DD who recently backslid. We were late getting to Thanksgiving dinner because her skin was dry and she thought her makeup wasn't perfect. She had to redo three times, all the while breaking out in a sweat--which made the makeup more problematic--and so having to use the blow dryer on cool on her face to counter the sweat. (Needless to saw makeup imperfections were noticeable only by her.) Where to start on ERP for something like that? Her other anxiety attack came in the car on the way to a party. Her plan was to use public transportation to get home but she had left without her Ipod and had a huge anxiety attack in the car over the thought of being on the subway without her Ipod. I offered to pick her up so she wouldn't need to take public transportation but that wouldn't do because the subway was already planned for in her mind. So of course I had to drop her and drive home and back again to bring her the Ipod. Again, how does one do ERP for this?

 

Ko's Mom

[sosudden]

Well I wondered how all of this would work for my daughter as well!! She has never been afraid or "OCD" about germs or anything tangible really so I understand where you are coming from.

I am at work so if I can't spit it all out now I will try to get back...

Plus wanted to ask if your child also had the fast heart rate - I can't remember if you posted once about that?

 

OK, well this is how the book explains anxiety. Anxiety is a FEELING. So first there is an "event" then there is a "thought" then there is a "feeling" then the "behaviour." Retraining the OCD and anxious brain takes a lot of work and repitition (Hmmm something our kids are good at eh? We can't change the feeling until we change the thought. And the anxious mind works in 2 ways: It thinks only the worst thing possible will happen (which is not realistic) and it also overestimates how "bad" that something would be if it did happen.

 

So here is an example from my DD10:

Event - I have to go to school.

Thought - I am going to pass out because I am light headed.

Feeling - Scared and Panic and Anxiety.

Behaviour - Avoidance. Temper tantrum. Crying. Seeking reassuarnce.

 

SO, DD10 has to learn to change the thought. And this is where we are trained by therapist to help her apply CBT (and use ERP.)

CBT involves lots of things but one of the main things is realistic thinking. This takes practice and she is resistant sometimes but rewarded for working on it. I want to add that this is total parental involvement because we are being taught how to help her help herself. How likely is it that she will pass out? Has she passed out before? And what would happen if she did pass out? (Her response is always that she will die which becomes another "event" we have to walk through). Does she know anyone else that has passed out? Did they die? DD gathers as much information to the contrary of her unrealistic thought. Writes it down. Examines the evidence. Applies realistic thinking. You are supposed to start with the smaller anxiety-producing situations to get some confidence building. Now, as for ERP, DD fear is being light headed, so we recreate situations that make her feel that way and she works through it and the habitual nature of ERP eventually decreases the anxiety. ERP has already worked on her fears about her heart rate going too fast and her feeling dizzy!!! We don't ERP those anymore!!

 

Also, when doing CBT/ERP it has to be a systematic approach. A good therapist I feel is necessary to guide you through this with your child. The book helps you understand and practice but can not replace a good therapist.

 

ONe more thing I must add. When DD was at her worst there is NO way she could have done any of this! No way at all. So if you don't think your child is ready yet, as she heals through the PANDAS/PANS teartment, she will eventually be able to learn how to control her anxiety through this.

 

((hugs))

[sosudden]

As far as the make-up anxiety:

Event: Putting on make up to go to Thanksgiving dinner.

Thought: She has to fill this in....for example...If my make up is not perfect people will laugh at me.

Feeling: She has to fill this in...for example...Fear. Embarrassment. Anxiety. Panic.

Behaviour: Sweating. Undoing. Redoing. Crying. Being late. Avoiding.

If she is capable (not too upset) have her write down some answers to questions such as. Have you ever put your make up on wrong before? Have people ever laughed at you and told you your make up is not perfect? Have people ever told you your make up looks bad? Have you ever thought someone else had their make up on wrong? Did you laugh at them? Did it make you not like them?

Answer as many questions as she can about this thought. Then ask her how realistic the thought is.

There are more steps and it gets more in depth as you go through it but it is a start, ya know? Oh, and have her rate her anxiety before and after you go through the exercise.

 

And in a sense, for my DD anyway, going through some of these is ERP in itself - just thinking through it.

 

((hugs))

Edited November 24, 2012 by sosudden

[nicklemama]

Count me in as one who does not see how I can possibly implement this. DS also does not have typical OCD. He's in an exacerbation at this moment following having pneumonia. I'll give you an example that just happened w/in the last half hour. He was on our computer. I was in our bedroom watching tv. Dh was in the living room watching tv. He walked into the living room and saw Dh on the tv and went stomping through the house angry and I could hear him say something about "the damn thing". He's not quite 9 and he's started cursing w/ this exacerbation. Oh, the joys. He stomps back to the computer, stays a minute, then comes stomping to our bedroom, sees me watching tv, goes back to the living room and begins to punch his bean bag chair. This part is good because its something we have worked on when he gets angry but he does not always take it out on the bean bag chair.

 

He has said absolutely nothing to anyone but he's mad as a hornet and stomping around the house. Any attempt to reprimand him for his behavior or even ask him why he's upset will result in eruption and an all out raging anger. I don't relish being attacked, so I try and control myself so as not to set off his physical violence. He was 5.5 when this started and we could hold him when he attacked us. He'll be 9 at the end of Dec and he's getting too big to physically control, especially for me.

 

Two nights ago, he didn't get his way or things didn't go as he perceived they should (can't remember what it was now) and he ran upstairs, slammed his door and proceeded to kick it and throw things around his room. We let him be because there is absolutely nothing we can do but make things worse.

 

Please tell me how you get an out of control w/ anger child to think/talk to himself about how his thoughts are wrong and that there are better ways. When we try and talk to him about it later, he gets mad again. When he's doing well, he doesn't have these issues. We haven't dealt w/ raging anger in nearly two years. Its a new and different ballgame now that he's older. We leave for Chicago for IVIG on Thurs and Fri of next week. It cannot come soon enough.

[LNN]

This is a topic very near and dear to my heart and I'm hoping some of our resident experts chime in on whatever details I miss.

 

ERP (exposure/response prevention) is one type of CBT (cognitive behavior therapy). ERP is specifically designed to help you face your OCD thoughts and train yourself to not give in to the compulsion. OCD is basically a superstition driven by an intense fear that something tragic will happen to you or someone you love. So "if I eat this food that has a lumpy texture, it will get stuck in my throat and I'll die". Or "I'm terrified this plane is going to crash, so if I turn the knob holding my tray table so that it's perfectly vertical, I'll have made the plane "perfect" and it won't crash". Sometimes, the compulsions are done just to make you feel balanced or "just right" - like "I need to touch the wall 4 times before going through the hallway" just because it feels too uneven if I don't. But I need to do this or I can't move on with what I was doing. For these thoughts, ERP helps you "prevent" your response (control how you chose to respond rather than being compelled to respond) and it addresses your fears by making that exposing you to that fear so often that it loses its impact. Someone "afraid of being laughed at" would need to imagine being laughed at or ask people to laugh at them so often that it just became a boring topic. The rituals that come with OCD are basically superstitions - if I do x behavior, Y consequence won't happen. To extinguish the ritual, you need to extinguish the underlying exaggerated fear - by making it boring and old news. You do extensive "exposure" to do this.

 

There are several "categories" of OCD - contamination fears, checking (need for perfection, fear of mistakes), intrusive thoughts(bad thoughts about self, fears of harming self or others), scrupulosity (fear of being a bad person/religious condemnation), symmetry (need for evenness, counting compulsions) and hoarding (some argue this may be a different issue governed by a different part of the brain).

 

General anxiety - fears not accompanied by rituals - are usually dealt with a different way, with CBT. CBT focuses on the fear but doesn't spend time trying to extinguish behaviors/rituals. Both approaches teach the person to be in control of their own thoughts. Instead of seeing themselves as a victim - someone who must obey these intrusive, overwhelming thoughts, they learn to see themselves as empowered and resilient. The therapy focuses on changing their perspective. All OCD and anxiety fears are rooted in a morsel of real threat. Yes, people get laughed at. So you don't waste time arguing over the thought. You focus on how the person can cope with an aftermath. So you get laughed at. So what? You can handle that. It's all about resilience. It can be very empowering and the skills/mindset lasts a lifetime.

 

In all cases, the parent's role is to be the coach. You can't take the fears away. You can't be the rescuer. You cheer them on and tell them you believe in them. But they are the ones who need to talk back to the thoughts and take charge. Another excellent book on how to do this is John March's Talking Back to OCD.

 

For makeup - one approach would be to have your DD give herself only 3 looks in the mirror. She's locked in a "checking" sort of ritual. Initially, she'd find this limitation impossible. But over time, her goal would be to only check the mirror three times. Then 2, then once, or maybe even go in public with no makeup. But you break things down into very tiny babysteps so you set her up for success. You don't ask her to do more than she's capable of at that time. She also uses a "fear thermometer" to gauge her internal feelings. You tackle things up to a certain fear number - maybe 7 - but once her fear goes above 9, you back down. Fight/flight has kicked in and she'll no longer be able to focus on the exercise. This is where a true ERP therapist can be a huge help, to teach you both how to do this right and not feel defeated.

 

For anger - this isn't really an ERP issue IMO. My DS once had horrible rages. You can't talk to someone in the middle of the rage. You're right in what you're doing - target an inanimate object to punch, go off to a place where you won't harm others physically or verbally. Don't punish for letting feelings out. We don't get to chose the feelings. But we do get to chose how we express those feelings. So no punishment for feeling angry. Only consequences (after the storm blows over) for not venting the anger safely. You can sometimes get anger when an OCD ritual is interrupted. But that angry outburst is, in my mind, handled differently than OCD or anxiety. For my DS, we first worked on appropriate expression of anger (punch a pillow, scream in your room). All of us need time to release that anger. But on the other side of that explosion, you can be a sounding board. Now is not the time to lecture. Now is the time to understand. Help him verbalize and re-set. Help him examine the trigger and discuss ways to do things differently next time. Much much later, discuss any consequences for trashing his room or using hateful words. Let him be part of choosing the punishment. Again, the punishment isn't for having those feelings. Only for making bad choices about how he handled it. This was always a time that drew me and DS closer. I became his ally and coach. The Explosive Child is a good read for this.

 

As sosudden says, trying any of this at the peak of a flare isn't very productive. BUT...I still think it's helpful to talk about the strategies and lay the groundwork. Learn as much as you can and make plans for how you can try to do ERP in baby steps. Then, as your child starts to calm down and come off of a flare, you have the plan ready and you can start to tackle it. You may fail lots of times. But you have a road map. As the child gets better, it gets easier - AND you have tools for next time. It takes time for find a good therapist. So start now and then you can be ready for when your child is in a better place to tackle things. I think you'll find LOTS of parents felt the way you did - no way can my kid do this. But I think they all say that once they learned how to do it correctly with a good therapist, it made a world of difference. It's life changing - and the skills stay with you for life.

[sosudden]

LLM - that was awesome!! I do think it is important but had you asked me 9 months ago or even 3 months ago - well I know MY brain would not have been able to even believe my DD could participate in anything like this! When symptoms are first coming on it is likely impossible to attempt this type of therapy (at least in our case DD was "gone") I agree about the raging - no "training" can be done during -safety is the main focus. We don't have as much experience with rage - although she did rage during 1st six weeks of initial symptoms --- punching walls, kicking holes in walls, throwing over chairs, attacking brother, screaming and growling. So back then, safety was our concern (we were all in such shock I don't think I could have been taught to be her coach at that time either.)

We have set up a reward system. I wonder if that would help for rage --- I don't know?? I won't go in to detail here but this system has helped immensely! Another thing I will add about us during this journey -- it truly takes time to heal from this. All the medical healing, all the psychological healing and time.

So like LLM, I agree, when you and your child are ready, the lessons to be learned through CBT and ERP are priceless.

((hugs))

[sosudden]

Ko's mom

A thought about the subway/ipod situation. What a great ERP to set up -but this is where I think you and her would need guidance and a plan of course (a good therapist is priceless).

This would also NOT be a starting point for ERP as sounds very intense. But work up to - riding on the subway without her ipod. Sounds cruel I now. But if she has the CBT on board, and you as her trained coach, she could retrain her brain that not having her ipod (simply because she forgot it, not that she can't ever have it) is not going to make anything bad happen. She does this by exposing herself to the situation and at the end nothing bad has happened! Takes work and time and systematic approach but is doable. Give her and yourself big hugs!!!!! These kids are so smart and brave!!!

[kos_mom]

Sosudden,

 

Thanks for all the great information. I did a lot of ERP with DS, who also went to therapist twice a week, for two long years. He had tics that were triggered by very specific thing. The treatment was to expose him to the trigger, and rewarding him for not engaging in his response, the tic. So, interms of what you have outlined, we went from event straight to behavior. There was no stopping at thought or feeling, and trying to engage him in either of these probably would have been futile since the behavior had become so automatic.

 

ERP was a lot of hard work, but the approach you outline for anxiety requires much more in the way of inner resources from the child. It can't be easy to express thoughts and feelings about the event. These definitely cannot be addressed while the event is happening--in DD's case these tend to occur when she is already running late.

 

DD went through almost every day of high school having makeup induced anxiety attacks. By 8 in the morning we had already had our fill of stress for the day. I am hoping this latest manifestation is just transitory as discussing it is so hard--she has logical reasons for why the makeup isn't any good, previously her acne, now it's dry skin. If the thought is people will laugh at her, she'll argue that they will and everyone knows only looks matter and people who say that's not so are lying etc. In other words all her anxiety is completely justified and is rooted in rationality. Arghh--so frustrating especially since we''ve gone through a period where she'd go out without any makeup and not really care if her hair was properly brushed or not.

 

Am monitoring this closely and will seriously consider setting her up with CBT if this continues. Am hoping it is just flare.