School fear/anxiety

[pandakid11]

Our son, age 12 is out of school but trying to do homeschool with attending a class on Friday. Eventually, we would like him to go to 4 classes on Friday but cannot get him to one. Once we hit the school, it is like a switch goes off. He gets pale, shaky, eyes rolling back in head, says "I feel like I am going to die" and cannot

get to the one class. We thought this was a way to gradually get him back into school but we are failing thus far.

He isn't sure what the anxiety is? How do you overcome this? It is awful. We had an easier time doing pre-school than this. The parent stays at the school while the kid goes to class or classes so attachment anxiety shouldn't be there. How can we get to the bottom of this and push thru it? We had his psychologist there trying to talk him into it and he got him to the class whereby, our son collapsed. Thus, he couldn't do it. Do you think hypnotherapy may work? We are devastated. This was a kid who never missed a day of school K-5. This illness is so baffling and makes no sense. Afterwards, he feels so guilty and ashamed for not being able to do it. What the heck is going on? Thx for help. TIM

[dcmom]

So sorry for what your are going through.

 

We went through this with my pandas dd two years ago. Very social, high achieving kid who loves school. Literally woke up one December morning two years ago with pandas back full force. Would not leave the house, or see anyone. Would not even let us see her face. Did pretty quick steroid treatment, and things calmed considerably. Would then see people, go to family's houses, and would go shopping (but with lots of anxiety). Still would not go to school. It took a while to get the real fear out of her. I notice both of my kids, if they have a particularly strong ocd- they DO NOT like to share it, it takes patience, coaxing, etc. Eventually it comes out. DD was afraid she would vomit in class, and everyone would laugh at her. But- ocd makes it so much more than that- so scary for them, it was as if I was asking her to go to school naked. She would try her hardest to comply, she would go for a class at a time, and she would come out (like you described) pale, shaky, depressed, etc. She was not able to focus on the learning at all. It was a mess. Finally, we went to USF for ERP therapy (tried local therapy- was not successful). After three weeks of therapy there, the fear was gone, and has not returned since.

 

I think you will not get anywhere until he opens up about his fears. I am sorry to say, I don't really buy that he does not know what he is scared of. I am not a psych- but I will tell you our local psychs were WAY too "nice" to my dd. Believing what she said, etc. At USF they were tough, they were not so "nice"- but in the end- they got her over her fear- so I say who is nicer? For us it was a total waste of time, and possibly detrimental her self esteem (at least in the short term) to have to "talk" with someone about her fears every week- when they were not really giving her the tools to be successful in getting over them.

 

Good luck- it is so tough to watch, I know. I felt, at times, like pandas would steal the very essence of who my kids were. So unfair. BUT- he will get better, of that I have no doubt.

[MomWithOCDSon]

I agree with 99% of what dcmom has said, but I do depart on a piece of it, as we have had a similar experience with our DS that you're having.

 

Our DS was also school-phobic at one point and, like yours, he could not articulate any specific fear. I know some kids truly do have a specific fear (vomiting), and I think that probably makes tackling it and conquering it more clean-cut and, well, frankly, easier.

 

But my DS, like yours, was just overall overwhelmed by a variety of things inherent to the school environment: sensory input, expectations, social mores. He wasn't afraid of any particular aspect; he was afraid of it ALL. So asking him to "name a fear" didn't make any sense to him. He was afraid he would miss some piece of instruction verbally imparted by a teacher. He was afraid he would forget a book or some material he needed for a particular class. He was afraid his peers would stare at him or tease him. He was afraid he would get an answer wrong. He was afraid he would touch something contaminated and not be able to wash quickly or thoroughly enough. He was afraid a classmate or a teacher would get angry with him. He was afraid he wouldn't be able to find a table/seat for his lunch period. And because there was a fear associated with almost every aspect of the school day -- classes, lunch, even his resource period -- it just seemed like a gigantic monster that he couldn't deal with. At least at first.

 

Back to where dcmom and I fall completely in line, now: you need a good therapist. The fact that the psychologist you mentioned was "trying to talk him into" school tells me that this therapist is not the right one. This is not exposure therapy, which he needs and which has been proven to work. And you can't talk a person who's not fully in charge of their own thinking/executive functioning "into" something they feel great anxiety about. Rather, you have to desensitize them to that which causes them anxiety through exposure so that, over the course of a number of exposures, the anxiety decreases. So, if going to school (for any or all of the sub-reasons/fears that I mentioned earlier) is the fear, then actually going to school and managing himself while there, is likely to be the "cure" for what ails him.

 

But I know that's easier said than done. We've been there, and without the help of a very good ERP therapist and wonderful school personnel, we might not've gotten past that point ourselves.

 

I'm sorry you're going through this, and I truly encourage you to seek out a really good therapist. And I further encourage you to do some sessions or parts of the sessions as a family, so that you can learn some of the best strategies and techniques for helping your DS -- as opposed to enabling your DS's anxiety -- to take the next steps. As dcmom has said, it's not always soft and fuzzy, it's not always fun, it's not always "nice." But it works!

[pandakid11]

HI

We are exposing him. We take him there and expose him to the environment. I am lost in what you mean by exposure as we are doing it and it isn't solving it. What is different? Thanks and sorry I am so lost in what you are trying to convey.

[MomWithOCDSon]

HI

We are exposing him. We take him there and expose him to the environment. I am lost in what you mean by exposure as we are doing it and it isn't solving it. What is different? Thanks and sorry I am so lost in what you are trying to convey.

 

From what you've said, though, I get the impression that, when he "collapses" or has some sort of meltdown, you remove him from the environment, no?

 

Part of ERP -- Exposure Response Prevention -- in addition to the Exposure part -- is the preventing of the response. I'm not sure what "collapse" means, as is he losing consciousness? Is he losing muscle control so that he won't stand or walk on his own? The "Response Prevention" would have to be designed to fit the specific realities of his response. So, for instance, if he's dropping to the ground and refusing to walk any further, perhaps he needs to be escorted into the building with support on both sides, holding his arms, so that he can't physically slump to the ground. He gets into the building, into the designated classroom, at all costs.

 

How many times have you gotten him actually into the school, into the class or space you and the school have agreed he will begin this return? How long has he stayed there before you've allowed him to leave or removed him? Exposures can require repetition . . . sometimes more, sometimes less . . . to be effective. And, in our experience, the person needs to have attention called to their successes, also. Equal parts "tough love" (unbending exposure) and encouragement, identifying even the smallest successes so that your DS doesn't experience it all as trauma and drama . . . it's tough, but there's a reward in it in that he achieves a goal, and you validate his success because, in the heat of it all, it may not be easy for him to see those small steps in the right direction.

 

I hope this clarifies it some? Sorry, but without knowing your DS or seeing precisely his reactions, I can only go by your words (and vice-versa, I realize ), so that makes it a little tough. Plus, I'm not a therapist, though I've been through a lot of therapy alongside my DS. Again, I think you need a good therapist to guide your DS and your whole family through this experience. Feel free to PM me, though, if I can offer anything further.

 

Hang in there, and don't give up (or in)!

[smartyjones]

Our DS was also school-phobic at one point and, like yours, he could not articulate any specific fear.

 

 

But my DS, like yours, was just overall overwhelmed by a variety of things inherent to the school environment: sensory input, expectations, social mores. He wasn't afraid of any particular aspect; he was afraid of it ALL. So asking him to "name a fear" didn't make any sense to him. He was afraid he would miss some piece of instruction verbally imparted by a teacher. He was afraid he would forget a book or some material he needed for a particular class. He was afraid his peers would stare at him or tease him. He was afraid he would get an answer wrong. He was afraid he would touch something contaminated and not be able to wash quickly or thoroughly enough. He was afraid a classmate or a teacher would get angry with him. He was afraid he wouldn't be able to find a table/seat for his lunch period. And because there was a fear associated with almost every aspect of the school day -- classes, lunch, even his resource period -- it just seemed like a gigantic monster that he couldn't deal with. At least at first.

 

 

pandaskid -- i agree this is certainly a baffling illness and it can present in many various ways-- however, one odd thing is that there does seem to be "types" -- MomwithOCDson's son has had many similarities with my son. fortunately for us, he is older and they have been a HUGE source of information and support for us -- for which i am eternally grateful!!!!

 

 

with school phobia, my ds was terrified of it all -- that's pretty much what he would say when we would try to pin it down -- 'it's all bad', 'i hate it all', 'i'm concerned about everything'. and i think he truly was -- it was everything and nothing that was driving the anxiety. that said, he did have specific worries relating to school work (valid writing issues) and to how adults related to him concerning these issues and his handling (or lack thereof) of them.

 

i would say from where i sit now -- comfortably over the hump (KNOCK ON WOOD), i would think USF would be a really good bet. i don't have any personal experience with it - but dcmom is such a knowledgable warrier in the pandas fight, i'd follow her anywhere and many others have great things to say. it seems to be the quickest, most intense, bang for your buck way to go.

 

we did not do such -- we were more of the slow painful approach, with many wrong turns to get us on track. so -- are you looking at this as a phobia? MOM has some great thoughts. what exactly are you doing when you go to school on Friday? are you going to the school with the idea that he will be in one class for the entire class? obviously, that is too much so it sounds as if you are stuck between the grand impossible feat of attending one class (which everyone else seems to think is not too big of a hurdle) and falling apart in the parking lot and going home deflated. have you talked with him about what he would actually be able to handle? what if you tried coming up with some suggestions that would work for everyone -- going into the school building and spending the class time in the library working on the subject independently? idk -- perhaps just walking into the school building and walking the halls is all he can handle. then you develop a plan for one step ahead each time. maybe if you are doing something like this, you would move to 2 or 3 days a week of these baby steps instead of just once a week.

 

of course, a skilled therapsit is most helpful -- it's important to allow him to feel confident and comfortable - but also to be tough to push it so there is progress -- unfortunately, a very fine line that is tough to gauge and i'm disheartened at how many therapists can't pull it off.

 

have you checked out anxietybc.com? how about Ross Greene's Explosive Child collaborative problem solving model?

 

it is slow and can be frustrating -- however, if there is progress, you are on the right track. a number of years ago, my ds was peeing on a towel b/c of some fear of the potty that we could never overcome or define. it took something like 72 days to s-l-o-w-l-y, move to the potty. but, it had been a year or so before with many useless, wasted suggestions and after that 72 days, he's been on the potty ever since.

 

the savvy behaviorist who diagnosed ds with pandas asked me, 'is it like he just can't bring himself to do it?'. that hit it so well -- it wasn't that he was a brat, was manipulative, needed rewards etc -- he wanted to to what everyone else wanted - he just couldn't bring himself to do it.

 

last year, i would walk with him into the class (which turned troublesome and i wouldn't recommend -- i prefer help from the school personnel). i felt like i got a contact adrenaline rush 5 feet before and 5 feet after the entrance that felt like a heart attack just from holding his hand.

 

have you done a scale of 1-5 or 1-10 with him and broken down the aspects of the task -- first determine his ratings what each rating thinks, feels like and does. this is ds's words last year --

 

1 -- thinks he's gong to do it; excited, happy; says 'i really want to do whaterver', cooperative, helpful

 

2 -- knows he can do it; getting pretty uncomfortable, can problem solve about it

 

3 -- uncomfotable but knows he can do it; nervous; just does it; problem solves then does the solution

 

4 -- not sure he can do it, but can try; nervous; maybe completes it

 

5 -- thinks he can't do it; scared and nervous; yell and scream, slams lockers, rip things, hits people, throws things

 

 

last year, most of his day was a 3 or 4; writing activities were usually 10. one day, art was a 62. that was the day all fell apart.

we didn't use this this year b/c we had better support from the staff -- but it may be a way to help you determine what specifically he needs support in.

[dcmom]

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.

[Wombat140]

I think Smartyjones has a good point about trying to do it gradually. Maybe if he starts to lose his nerve when you get to the door, he could stay there until he's feeling better and just getting that close could be his exposure for the day, and then work up from there.

 

I'm just looking at it as if it was a classic phobia - like fear of heights or fear of spiders - fairly automatic, Pavlovian sort of response to a particular situation. (In which case, from what I've seen, asking exactly WHY he's scared may not get you anywhere, because a classic phobia is completely reasonless by definition.) It may or may not be, of course - might be something more complicated, like DCMom's daughter who turned out to have a phobia of being sick rather than of the school itself. But it's worth a try.

 

The standard method with phobias nowadays, as I remember, is

* find a level of exposure which is pretty scary but doesn't actually make you panic,

* STAY in the situation until you calm down.

* when you're getting the hang of that, repeat with something more difficult, and so on.

With spiders, for instance, you might start with only holding a photo of a spider, then work up to a spider in a glass at the other side of the room, and so on. It takes quite a long time that way, but it does work. Just seems to me it might be an alternative to either getting nowhere or going right in and collapsing with terror.

 

The essential thing is to STAY at that point each time until you stop being scared, rather than doing it, getting scared, and then leaving off before the anxiety goes - have you maybe been leaving when you see he's not going to get there, while he's still scared? It's a reinforcement thing - one way, the subconscious sees go near school/scared/get out of there/feel better, the other way it sees go near school/scared/stay there/leave feeling fine. You have to talk to the subconscious in words of one syllable, it's not too bright ;-)

 

P.S. That said, are you quite sure whether he actually wants to go to school but can't do it, or whether he has some secret real reason for not actually wanting to go? For instance if he was showing a lot of PANDAS symptoms before he came out of school, other kids might have been bullying him about it and he might be afraid they still will. Kids don't always tell. Do try and get him to tell you that at least. (Or you might ask other kids or parents.)

 

P.P.S. My mum has just suggested you could go to the school by yourself and make a video, starting outside, going into the classroom and staying there for a bit, and he could watch that at home (at least as much of it as he can cope with) for a bit of extra exposure. Behold the low cunning of a psychologist :-)

Edited January 15, 2013 by Wombat140

[MomWithOCDSon]

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.

 

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).

 

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.

 

 

Good points, for sure! And, in addition to the actual "exposure" of going to school and being in the school building for intervals, we had a good therapist undertaking the individual "sub-exposures" with our DS -- giving him instructions on how to do something but intentionally starting in the middle of the instruction so that DS "missed" some of it, for instance. Those individual exposure exercises no doubt contributed to his overall success.

 

It's worth mentioning, though, in the event someone else's kid has a similar profile (a certain level of "cognitive inflexibility"), that my DS processes things very "specifically," so while he participated in the exposures outside the school setting with a therapist and would frequently "ace" those exposures in just a few tries, he remained convinced that it would be "different" at school, in the building, in the classroom, with the teacher, in front of his peers, etc. So, for him, undertaking many, many exposure exercises in front of strangers in the corridors of the therapist's office building, in the building's common washroom, in the food court of the mall, etc., failed to "unlock" his power over the anxiety. School was "different," the adults and kids there were "different" from the kids and adults on whom he practiced his exposure exercises. We tried video looping exercises, also, but he stalwartly insisted that he was "different" from those other people participating in those behaviors in front of him, so the extent to which he was desensitized by watching them appeared to be neglible.

 

So, in the end, it was in getting him into the building itself, experiencing the people and events via "in-place exposures" that eventually worked for him. Those experiences weren't something he could argue against as being "different" or something outside his own; they were very definitely his alone.

 

In the end, I whole-heartedly agree with ERP and its value in combatting anxiety. And though we've never been to USF, I've spent quite a bit of time listening to and talking with Dr. Storch regarding my DS, and I have every confidence that USF is a fabulous, likely unparallelled, resource for helping kids and families in the face of these anxieties. I also know from experience, meanwhile, that while the basics of ERP are somewhat fixed, the application of the principals can and probably should be flexible in meeting each person's needs. So while loop tapes and exposures in different settings will work for some, "tweaking" of these primary tools, or "in-place exposures" may be required for others. Maybe in our case, DS's history, age and cognitive processing each contributed to his need for some different measures.

 

At any rate . . . viva la ERP, wherever and however it is undertaken!

[dcmom]

Hey Nancy- point taken

 

I guess my issue is, if it's not working with a psych- if you are not getting results- you may need to be doing something different.

 

My question to you would be- did you see results fairly quickly? Just to give pandaskid11 some idea of how long to give it.....

 

At usf, I could see major resistance to the exposure, then success, every day. In the end this led up to success on the whole. Certainly, our psych told us the final exposure would be going to school- she just had so many successes under her belt by that point, she knew she could do it.

[MomWithOCDSon]

Hey Nancy- point taken

 

I guess my issue is, if it's not working with a psych- if you are not getting results- you may need to be doing something different.

 

My question to you would be- did you see results fairly quickly? Just to give pandaskid11 some idea of how long to give it.....

 

At usf, I could see major resistance to the exposure, then success, every day. In the end this led up to success on the whole. Certainly, our psych told us the final exposure would be going to school- she just had so many successes under her belt by that point, she knew she could do it.

 

I agree with you, Eileen. And I, too, think we largely "wasted" some valuable therapy time and money on psychs and therapists who were not fully up to the ERP task.

 

I also think my DS is a little extraordinarily difficult to impact (Dr. Storch picked up on this with him a bit, as well), whether that's entirely due to processing or duration of his OCD diagnosis and "coping behaviors" prior to the PANDAS dx or whatever, I'm not sure anyone knows.

 

But did we see results fairly quickly once we found the right person and got him in the school? Yes! Like you said, every day a little better. By the end of about 2 weeks, we had him attending 2 classes, rather than just the one. And it kept extending from there; overall, it took us about 3 months (including Winter Break) to get him successfully back into school for his full, 9-period day. Again, maybe given his age, he never actively "resisted" the exposure; he'd just do it and then proceed to tell us and the therapist why it wouldn't "work" at school, even though it was working in another setting. But once he was inside the school itself, the excuses/rationalizations had nowhere to roost.

 

I'll just say, if I had it to do over again (pray not!), I, too, would pack our bags for Florida and USF. They seem to have such a great handle on these kids in nearly every respect, including ones like my DS who may bring an extra little "twist" to the therapy experience!

[dut]

Hi - more questions- sorry..

 

We've been experiencing some school refusal with dd. It has been very on and off since about Thanksgiving. She'll go and be fine for a few days or weeks and then suddenly it's too much. This comes after a weekend off normally or an unusually late night.

 

There is no specific fear just an all encompasing fear/anxiety to where she is begging and crying to not go to school. She's only missed 6 days due to it since November and is working hard with the tools given her by the psych and we'll think we're on top of it... she's had a good day, enjoyed school etc realises that the fear is not based in reality and that it is a pure PANDAS fear but here we went again tonight after 2 days off due to stomach pain 'cos she's gotten constipated, suddenly she's back at square 1 with the fear.

 

For others that have been there and dealt with it successfully did you get the same on off problems or was it a smoother curve once the fear could be faced? Her other PANDAS issues including the OCD ones have been steadily improving with the help of ibuprofen.

 

This is such a sneaky b**** of a disorder. I'm dreading Sunday nights.. any ideas on keeping the streak good?

[bigmighty]

Our son, age 12 is out of school but trying to do homeschool with attending a class on Friday. Eventually, we would like him to go to 4 classes on Friday but cannot get him to one. Once we hit the school, it is like a switch goes off. He gets pale, shaky, eyes rolling back in head, says "I feel like I am going to die" and cannot

get to the one class. We thought this was a way to gradually get him back into school but we are failing thus far.

He isn't sure what the anxiety is? How do you overcome this? It is awful. We had an easier time doing pre-school than this. The parent stays at the school while the kid goes to class or classes so attachment anxiety shouldn't be there. How can we get to the bottom of this and push thru it? We had his psychologist there trying to talk him into it and he got him to the class whereby, our son collapsed. Thus, he couldn't do it. Do you think hypnotherapy may work? We are devastated. This was a kid who never missed a day of school K-5. This illness is so baffling and makes no sense. Afterwards, he feels so guilty and ashamed for not being able to do it. What the heck is going on? Thx for help. TIM

 

Have you guys already done a steroid taper? If that is an option for your DS, and you, your child, and the docs are willing to do a trial with prednisone, it might be worth considering. A year ago, we were right where you are. Did a 21 day taper (along with Aug 875) and saw gradual lessening of anxiety over the next couple of months. After that, he had a major change for the better. In DS's case, he still had too much brain inflammation for any ERP to be effective. Once we got that under control, he was better able to make a plan and stick to it, in spite of anxiety. Consider trying ibuprofen 3x a day for a couple of days and see if the anxiety is reduced on the ibuprofen days. If yes, you might want to look into the possibility of getting the inflammation under control before pushing the school issue. I know there are homeopathic anti-inflammatories such as turmeric that others on this board have successfully used, as well. Sending virtual hugs - Suzanne

[dcmom]

Hey Dut-

 

Sorry you are going through this.

 

Your daughter sounds a little like my younger daughter. Everything I said above pertained to my older daughter, who had ALL OUT school refusal due to overwhelming ocd. Once she faced the fear, we have had no issues with her- it has been a year and a half.

 

My younger daughter also has pandas. She has had some school anxiety as well. For her, it is a little more of an overwhelming anxiety, with a little ocd (not school specific) that is the issue. We do not get all out school refusal from her, but when pandas is flaring it can be hard for her to get out the door due to anxiety causing a spike in ocd, and then separation anxiety from me at school, and some anxiety around activities at school (always different). She is a somewhat (mild) anxious kid normally, and is VERY shy around adults normally- when pandas flares these issues are multiplied by 100, and a little ocd is added in For her we see more of an up and down thing: totally fine, trouble going a couple of days, late a day or two, etc.

 

She is much better these days- K was the worst, 1st and 2nd grade were better but still tough, 3rd and 4th have been MUCH easier.

 

First I have to say I agree with bigmighty- every gain we made with therapy, erp, and parenting strategies has been able to come because of the medical treatment. Steroids coupled with these psych interventions is what worked for us. So I will tell you what approach we took, but #1 for us has been immune modulating/ inflammation treatments (pex, prednisone, advil and zithromax, and/or solumedrol).

 

Here is how we have dealt with it (we did use a local psych who gave us some helpful strategies). This is not ERP, this is mostly for the anxiety and separation anxiety.

 

Firstly- when flaring from pandas, I am a crazed mom about NO late nights. She is in bed, lights out by 8:30. During a flare I give her melatonin (3/4 mg) 20 minutes before I want her asleep- works like a charm. I keep afterschool activities to a bare minimum. I try to minimize stress, rushing, etc.

 

The other thing we did with both girls during these tough times was- I became very tough about missing school. Normally, I would be a compassionate mom who let them take a day when they were not totally sick here and there. Now I am tough. No fever, no vomiting- you go to school. At least a half day. On the weekend- if we see these types of issues- we make sure we get out of the house each day to a public place. For both of my kids, at their worst, pandas started to look a little like agoraphobia- they resisted going to any public place. Letting them have a day off from school, or a day totally at home- makes it harder to get back the next day. My dd's issue is mainly GETTING to school- so I would be totally open to picking her up a half day on days she had a cold, etc- but we actually didn't do that much.

 

Hope this helps- I know how hard it is. Another thing- in the beginning I used to get very stressed if she was late to school, I had to drive her, or she didn't make it. I let that go- that released me from feeling stressed in the morning, and actually if anything had a better outcome for her.

 

In the morning- she gets up early enough to be able to get ready and eat at a leisurely pace. When it is almost time to go to the bus she gets a 10min warning. I give us twice as much time as needed to get to the bus. Avoiding needing to rush is huge.

 

When she had the really rough separation anxiety and was almost not attending school- the psych suggested that I drop her off, and agree to come back and check on her at an agreed time and let her come home no questions asked if she wanted. I could walk to the school and was not working- so I was able to do this. I thought it was a horrible idea, but was desperate, so I tried it. It worked wonderfully. We ended up doing this quite a bit during K- her WORST pandas flare. The thing is, she really loved school- once she was there- the hardest part was the separation. When I came to check on her (I tried to make it during a particularly fun time, recess, lunch, art, etc) she was having fun with her friends and over the worst of the anxiety so she stayed. I think maybe twice she came home, and those were the days where I walked in and she was extremely pale, dark circles under the eyes, and in a daze- the worst of her flare.

 

During second grade, we had moved and lived farther from the school- I really didn't want to drive back at lunch. So- on the worst days (I would offer these accommodations when it looked like I wasn't getting her to school) I would drive her in, and agree to sit outside of the classroom door until she told me I could leave. Again, once she got into the class, and into an activity, she was fine, I would leave (usually around 15 to 20 minutes).

[smartyjones]

There is no specific fear just an all encompasing fear/anxiety to where she is begging and crying to not go to school. She's only missed 6 days due to it since November and is working hard with the tools given her by the psych and we'll think we're on top of it... she's had a good day, enjoyed school etc realises that the fear is not based in reality and that it is a pure PANDAS fear but here we went again tonight after 2 days off due to stomach pain 'cos she's gotten constipated, suddenly she's back at square 1 with the fear.

 

For others that have been there and dealt with it successfully did you get the same on off problems or was it a smoother curve once the fear could be faced? Her other PANDAS issues including the OCD ones have been steadily improving with the help of ibuprofen.

 

 

oh c'mon dut -- nothing is a smooth curve!!

 

my thoughts from our experience and what others here say. . . the no specific fear and all encompassing fear is that something is going to happen that she will not be able to handle. she may know that something, such as dcomom's dd with vomiting; she may know it and not want to say or she may just feel a general sense of doom that's it's all frightening, but i'd bet the end aspect is that she fears she is not going to be able to handle it. so the end goal is that she can handle what she fears. the best way for that is for it to actually happen and her to handle it -- first with support and then with gradual independence. therein lies the whole issue -- how to do that lies the challenge.

 

long ago, we used to ask ds, 'do you know what the problem is, do you not know or do you know and don't want to say?' -- he was pretty good at stating one. often it was ' it just is.' his OCD presents as 'just right' OCD and there's often not a specific reason, it just needs to be right. once during severe exacerbation, it was 'i know and no one else can ever, ever know.' that was more than just right with contamination and death fears. for ds, he rides all along the anxiety/OCD spectrum according to his level of health. in addition to pandas diagnosis, he has anxiety diagnosis, not OCD. today, he's quite healthy and quite articulate with stating problems and finding solutions.

 

if she can break things down on a 1-5 scale, can you rate the activities of her day? when we did this with ds, it was generallly entering the building and class and writing activities. when these were not dealt with, the fear and anxiety spread to everything regarding school and he felt he couldn't articulate; it was everything-- but really there were specific fears. his writing fears are well founded and he is twice-exceptional, so school would be a challenge on his cognitive issues alone -- being misunderstood in that sense was very real.

 

we have a 'challenge chart' -- dragged out the old railroad potty chart and blacked out 'potty' and wrote 'challenge'. he gets a sticker when he does something that is challenging. first month of school, it was going. then changed to going on mondays. it's not something that will get him to do something that he is really resisting, just is an added bonus to support that it is difficult. it's about 25 spots and then he gets a reward of about $10. it has turned challenges into something more fun and exciting to conquer and he can be in control of how quickly he gets to the reward. we've had times (sept) when we are working on challenges each day or time like now where there may only be one challenge a week.

 

we have also used steps in the morning. step 1- going to bathroom, step 2 - getting dressed, step 3 going downstairs, step 4 eating breakfast. when he resists, i've stressed we are only working on step 2 right now, after we do that, we'll talk about the next step. it's been effective for him.

 

his current trouble with going to school is that he gets out of the car and runs into school -- imagine THAT! -- and often slips. last month, when dh took him, dh got out and went to help as ds sat there screaming, then clutching dh and saying he had to go home b/c he fell. wonderful principal took over, sent dh off to work and helped ds -- calming laying out, they could go to nurses office, look at his knee, etc. he went in with her, asked if he had to go to nurses office b/c said he was ready to go to class. yesterday, he slipped again, yelled for me as i hadn't driven off yet -- a teacher walked over, said a few words to him and he got up and went off.

 

i think the hard-line rock of the adults stating and showing that the child CAN handle it is helpful -- and providing strategies for how the child can actually do it. compassionate and understanding that this is difficult but not wavering in that they can handle it - and school is where he belongs today and where he will be.

 

i'm stating all of this in that my ds is in a good state of medical health and i believe is working on the psychological side of things that have developed. i do believe for him and for others with pans there are certainly times they are not 'available' to work this. the trick comes in knowing when and how to work that. b/c even though ds is doing great medically, if we hadn't had the good supportive start with this school to conquer these fears, he'd be home this year.

 

good luck.

Edited January 17, 2013 by smartyjones