School fear/anxiety

[MomWithOCDSon]

Hey Dut --

 

I don't think the course with PANDAS is ever smooth. So even once we were "back in," going to school daily, there would be those days that DS would seek to get out of it. He'd pace and pace, performing a host of mental rituals before we could actually force him out the door, the anxiety of managing himself was so pervasive at points. Plus, Friday afternoons became "Mental Melt Down Day." After keeping it together for a full 5-day week at school, it was like he just didn't have the mental energy anymore. So he'd come home from school Friday afternoon and almost literally crumble into a ball of quivering flesh. Everything was a big deal, nothing made him feel like he could get on with his weekend, because he had to rehash and confess and express regret about every little thing -- every unfinished homework assignment, every time he spoke out in class without raising his hand, etc. -- that he'd done all week. DH and I followed through with all the ERP homework and responses the therapist gave us, but in the end, DS had to buy in and participate. And for a while on Fridays, that just did not happen.

 

Like all the other anxiety-oriented behaviors, this faded over time and we see very little of that these days. Still, though, he'll occasionally get home on a Friday and work himself up about whether or not it's okay for him to "let go" and do something fun Friday afternoon and night, rather than hit the books. Stinkin' overachiever!

 

I agree with Eileen (surprise, surprise!) again on the night time curfew, though. Like her kids, bedtime is non-negotiable. No matter how much more work he needs/wants to do, no matter what's on tap for the next day, Bed Time is Bed Time. We know from experience that without a sufficient amount of sleep, his anxiety ramps up exponentially. So staying up an extra hour or more to complete homework is not a good trade-off for him. Truth is, now that he's in high school and taking high-level courses, the work is NEVER done, and even with accommodations, he never finishes everything. So there's literally NEVER "nothing to do" when it comes to school work. This has brought to bear a whole new level of exposure-oriented work for him . . . to learn to manage his anxiety about being less than "perfect" when it comes to satisfying every requirement of every teacher in every class. Frankly, I don't know how "normal" kids do it, expectations get so gianormous in terms of work production in these Honors and AP classes!

 

Also, we insist he make it to school every day, no matter what, no matter what complaints (physical or otherwise) he may have unless he's actually displaying a fever or some other sign that his reluctance is entirely physically based and not just his anxiety at work. Truth is, not only does avoidance tend to feed upon itself and become that famous "slippery slope," but we're doing him no favors (nor he for himself) when he misses a day at school for less than solid need. It just gives him additional fodder for feeling anxious: he's missed an Algebra quiz or a Chemistry lab; he doesn't understand this Economics assignment and now can only communicate with the teacher via email, rather than talking directly with her, etc. So avoiding school, in the end, becomes a lose-lose. Thankfully, he's come to see that for himself now!

 

Finally, I think Eileen's idea about getting out and about on the weekends, too, so that stepping out the door Monday morning is not such a big deal, is great; we did some of that, too. Actually, we had assigned exposure exercises at restaurants, food courts, movie theatres, etc., so there was always somewhere we needed to go! But just the act of staying out in the world, I think, breaks that tendency to think of home as a "cocoon" where you can indulge your OCD or anxiety and turns the outside world (school, etc.) into a forboding place where everything increases your anxiety and you can't find the internal tools for contending with it.

 

Hang in there!

[dut]

aaahhh my crappy computer - I just typed a lengthy response and lost it.. the bones of it were-

 

smarty and momwith - yep, my bad, the word smooth and PANDAS should never be used in the same sentence I should know better

 

smarty - I will ask her to rate her day's activities as she is having trouble getting a hold of what the specific fears are.

 

dcmom- the better managed mornign start could be a real issue for our dd. We will work on it. Also I offered up a late school start this am and it sealed the deal getting her to school today - great idea. I also threatened involving the school counsellor (she hates this idea) and removing all screen time at home for the day. Not sure if the stick idea is fair but I was desperate. She was sobbing, on her knees begging me not to send her.

 

dcmom and momwith - ur right, bedtime has slipped for us and I need to get it back in line 'cos late nights are a killer for dd.

 

bigmighty - we use ibuprofen and it really helps dd and ds with symptom control but we will also look inot other anti- inflammatories. We have used steroidfs twice for dd very successfully but she put on weight that she never lost and during use came to see herself as an "eater" and is concerned with weight and I am worried that any more weight gain coupled with PANDAS symptoms could tip us towards anorexia dn food withdrawal issues - I dunno maybe it shouldn't worry me.

 

Anyways, thank you all for your great responses and ideas. She see her child psych today so we can go over this some more and discuss some of your ideas. As ever, always gratefull for this board and its members

Edited January 17, 2013 by dut

[philamom]

dcmom- I realize this is an older post but wanted to ask you about the therapy with Dr. R. We are headed there soon for dd. What happens if your child refuses to do exposures in front of strangers? How does the therapist handle it? I also think the embarrassed part of vomiting may be what is keeping us from success with ERP.

thx

I do think USF is a good bet for you. They not only help the child, but they help the parents in learning about OCD and how to deal with it. Sometimes the longer ocd is allowed to go on unchecked, the worse and broader the worries get. And worries is putting it mildly, I know, these kids live in fear (like fear for their lives) that cannot be explained unless you have seen it.

ERP is exposure and response prevention. For us, we thought we were doing ERP when my dd would not go to school. We had her going for one class, then worked up to adding a second class (mostly with me sitting in the office). I thought we were doing ERP and we were under the guidance of two qualified psychs (one has written popular books on ocd and anxiety in children!). However we really were not doing ERP appropriately, in a way where she was set up for success.

When we got to USF, we did appropriate ERP- she had to face the fear - her specific fear was vomiting in class and being embarrassed. (for her I really think the embarrassed part was the stronger portion, and it did somewhat extend to other things like class participation, etc). She had to talk, watch and pretend to vomit , and she had to do all of this in front of multiple strangers daily. It WAS embarrassing. It got easier. So what she internalized was not that bad, embarrassing things wouldn't happen- but that when they did- she could handle it.

So- I am really thinking your son has specific fears. I know Nancy said her son's fears were broader- and I get that- but then she did list specific fears. The magic thing about ERP is that you tackle one issue at a time, but when they see themselves work through one issue, sometimes others go away on their own, or, they are easier to work with. When my dd got over the vomit/ embarrass fear- all of her fears of embarrassment pretty much went with it. She went back to school without a hitch, participated in class, and readily tried new things (extra curriculars, etc).

As pandas, and I thing even garden variety ocd (if there is such a thing) goes unchecked (medically and/or psychologically) it grows and grows. So one day, they have a fear that if they vomit they might be embarrassed, the next day, if they talk in class they might get it wrong and be embarrassed, the next day if they tripped walking to the board they would be embarrased, the next day the doorknobs might have germs that could cause them to get sick and vomit, etc. It never stops- it is like a snowball.

So I am thinking a QUALIFIED (and I do not use that term lightly) therapist will break this down. WHAT bothers him during the day. Make a list. Put the list in order of hardest/ scariest to easiest. (our therapist at usf then totally edited the list from his vast experience). Start working on one thing at a time. As each thing is conquered, move to the next. As the kid sees they can get over one thing, sometimes the next thing is a little easier.

At usf they would have the child actually do what he is afraid of. So lets take on of Nancy's examples- her son was afraid he would do something wrong/ miss something and get yelled at by the teacher. So they might- have him watch videos of kids get yelled at by their teacher, have them write a story where they are at school and get yelled at, read this story to the psych, and read it to other pscychs. Maybe go tell the head psych at usf that they broke a chair in the waiting room, etc, etc.

I cannot say enough about their methods, about how compassionate they are- their compassion is not necessarily shown in warm fuzzies to the kids, but in putting an end to their suffering and teaching them how to have a normal life. We talked a lot about always maintaining age appropriate expectations, and how to keep talking about it, and how to jump on the ocd if it crops up. If we ever run into an ocd that is impacting our kids lives, I will literally RUN back there as fast as I can. We wasted about five painful months of trying to get her back to school- I wouldn't let that happen again- and hate to see others go through it.

When you have a child impacted like this with ocd- you think that no one understands- that (because the local psychs you go to don't solve the issue) they have it really, really bad. Then you go to USF and they are completely unphased. You find out your child is no where near the worst they have seen. It changes everything for you, and it helps to normalize this for your child.

Good luck- I wish I could help more.

[dcmom]

Philamom- All I can say is Dr R is beyond capable and wonderful! He starts somewhat slowly, and works his way up. He doesn't give them an easy out- but won't force them. My daughter did not all out refuse him- once and a while she resisted. He worked on her and she relented. He seemed to know just how to push hard, yet not cross the line, if you know what I mean. He may work on embarrassing stuff separate from the vomiting stuff first, then put them together. For example- the first thing my dd had to say to "strangers" (which are really his colleagues- so they just say- oh okay) was "throw up". Trust him to do his job- and use him as a resource- ask him how to handle any hypothetical that you fear may come up when you go home- take notes!

 

I am jealous:)

 

My dd has never had the vomit fear again. She does however, sometimes have fear of embarrassment. We could have worked on that more, I guess. It comes with flare ups (which for her now, seem to be very mild, thank goodness). I am thinking maybe a trip to USF next year, if I continue to see this issue. I KNOW he could knock it out in one week!

 

Please let me know how it goes!

[philamom]

I'm REALLY looking forward to it. Nervous, but excited to move ahead with this therapy.

 

Oddly enough, there is a great intensive program 30 minutes away from us (Philly), but they don't accept insurance. It would be $8000. for the three weeks.

 

Thanks.