new understanding of "unfounded" fears

[smartyjones]

So- here is what I think the psych would tell you-

you need to get to the bottom of what is bothering him. You cannot move forward without this.

Compliance is necessary. But you can balance it with what you think he can do (but be brutally honest).

 

Really, bossing back the ocd is one thing, but what helped us was to really de sensitize them to the thought

Her only compulsion is avoidance, or to be with me. She is almost never defiant outside of ocd. It took us quite a while to figure this out, even though her sister was diagnosed with pandas already. Now, it is clear- as soon as I see that defiance- I KNOW there is something below

 

these are dcmom's words from another post. i started a new one b/c that has discussion about compliance but i wanted to mention the other trains of thought.

 

i keep saying ds7 is healthier than he has been in 3 yrs, but we have this re-emergence of school phobia b/c he has started back to school -- not only new school, but also after a year of homeschool. once he's in the classroom, he's good. also believed by me, but yet to be determined by school personnel (although extremely helpful and willing to find solutions) is that i believe ds has twice exceptional issues, including difficulty with the physical act of writing and process of composition. a few years ago, i read excerpts from a book written by a kid with aspergers. he said school was so difficult for him b/c everything was so very hard and so very easy at the same time. that struck me, even though ds was in preschool, that that seemed to fit him.

 

in many criteria lists of pandas, there is 'unfounded' fears. just this week, largely due to dcmom and some to a new psych who is working with ds to find 'ways to handle' what he hates (ie. school) , i've had a new understanding of the word 'unfounded'. i've been thinking of it incorrectly as 'unknown' and thinking ds has inappropriate reactions due to anxiety that crops up without explanation, a fight or flight reaction that desends upon him, it's just there, no cause. his OCD has been in the realm of 'just right' without webs of thoughts -- it's just not right.

 

i've known it's very real for him, just as if a lion is about to attack and his M.O. is avoidance. now, i'm beginning to see that the fear may actually be reasonable fear rooted in reality for him. it's unfounded to the rest of us, but there is a known basis for him. he's older now vs onset when no one knew what was happening and better able to articulate but still has much trouble, so insights from him are sparse. now i'm thinking it's a flight or fight reaction that is actually tied to something. yes, he has an inappropriate, whacked reaction to it -- but it's not simply an inappropriate whacked reaction.

 

we've been at this for almost 3 years, seen many medical doctors and psychologists, researched, discussed and thought about it ad nauseam. i know we are now in this muddled area of symptoms that could be pandas driven, could be learned b/c ds has been affected between ages 4 and 7, or could be just part of ds irrespective of pandas. but now this seems to very much make sense. duh? -- when the student is ready, the teacher will appear.

of course, that's this week and ds is doing well going to school . . . .

 

thanks dcmom!!!

Edited September 28, 2011 by smartyjones

[dcmom]

smarty-

 

if only we lived closer, we could hang out

 

So two things that we are dealing with right now, that struck me about your post.

 

My 11 yr old (school avoider) has been going strong since school started. However in the last week, we have seen an increase in her morning anxiety, complaints and reluctance to go to school. From what I gather, her "fear of vomit" ocd is not back, we do exposures to that. She is having a fear of, feeling that intense fear/panic at school again (like last year). It kinda makes sense. And it sounds like a possiblity for your son- things really sucked for him at school before, in the midst of pandas. He is better now, but every day he is afraid it could revert to how it was before. I am not sure where to go with this yet. I talked to a psych (trying to find one in NJ so we don't have to fly to FL every other month) and explained this to him, and he made it seem like that was a pretty common, likely scenario. I am discussing doing exposures (with her) to the idea of being in school and feeling panicked. Not totally sure this is the right direction, but all Ive got until I contact our FL psych.

 

The other issue, which I was researching this morning is dysgraphia. I feel that both of my daughters have this. My older daughter was around 9 at onset, at the time her handwriting was like a work of art, and she was the top speller in the class. Fast forward to this year, and her handwriting is fine (but I would lump it in with all the others that imho have marginal handwriting), and her spelling is NOT GOOD, and she knows it. Her younger sister was hit with pandas at 5. I have some examples of BEAUTIFUL handwriting, but most is barely legible (due mostly to somewhat erratic sizing and spacing, large heavy handed style) and her spelling is unbelievably bad, and very inconsistent. She can memorize 15 words for the week, and get a 90 on her spelling test (with minor difficulty), but those words are never spelled the same way again, and her mis spellings are creative and inconsistent. She is able to construct a paragraph or sentence. Both girls are very smart (if I do say so), and have outstanding vocabs and verbal expression. Both test advanced in Math and English. I was researching dysgraphia and realizing that it does apply to spelling as well as handwriting, basically all written out put. I was telling my husband today, that I think we will need to get a diagnosis for my younger dd prior to going to middle school if things don't change dramatically. There is NO doubt in my mind this was caused by pandas. It is a neurological issue. I don't know, if it will go away They both seem to have been affected somewhat, at the level where they were when pandas hit- what they were learning then. Younger dd still reversed b and d.

 

So- certainly if your son has an issue like this- it does not help in the ocd/ anxiety dept.

 

If anyone has any info on spelling and dysgraphia please let me know. From what I see- it is ok to practice handwriting and spelling, but in reality there may not be much improvement. It is important for kids to be given accomodation, like using a keyboard, and not be marked for spelling when the exercise is about composition. For my older daughter, it doesn't seem to be an issue- most writing can be done at home on the computer. However, I fully expect her to take honors classes in highschool, and wonder if I should have an IEP in place, accomodating spelling for in class assignments. She also can master spelling for a test- she is learning spanish now- and I will be interested to see how her retention of spelling those words are.

 

This whole freakin thing is such a puzzle, isn't it?

[sww817]

smartyjones- I related pretty well to your post. We are three years into exacerbations and probably 5+ years of symptoms that went unrecognized (he is 6) as we chased every diagnosis on the planet. I too have a "just right" ocd child that does not entain much more that it is just not right! Life can be frustrating and I definitely walk the line of accomodating to avoid a meltdown (I think I personally do not push enough). And we too are now in the area of daily symptoms that could be from illness or from learned behavior from my accomodating him.

 

Anyway- we too suffer from dysgraphia. It is tough and has been a struggle for my son who would note that other children could write and draw better than him. Plus we then deal with the flip side which can be an ocd-like need for a perfect picture- which sometimes is really good! But getting to the end result can be hard. I see the definite ebb and flow of handwriting skills which I presume relate to his illness and immune system.

 

I did want to ask who also had a child with dyslexia? We suspect that my son might have this and it does run in our family on both sides. When I did the intake information for an appointment yesterday at USF they asked about dyslexia and if he had been tested. Is this something common in PANDAS children? Has anyone heard this?

[dcmom]

Sww817- I think you will love USF! Which doc are you seeing? We do not seem to have any reading issues. Dysgraphia does not have to go along with dyslexia, but my research seemed to show that it sometimes does (if that makes sense). I have not heard of pandas related dyslexia- but I would NOT be surprised. I read that dysgraphia can be caused by brain injury Which is, I assume, our case. I do not know much about dyslexia...

[sww817]

Thanks dcmom. We do not have an appt at USF yet. Fingers crossed. I requested Dr Murphy and did the intake questions and sent documentation today. I am also hoping to maybe do the program with Dr Storch at some point.

 

Right now I am just hoping Dr Murphy will see us!!!

[norcalmom]

Got my pandas son a full "twice exceptional" evaluation around the time of pandas DX...discovered unable to do spatial processing at same time as fine motor. There were 2 tests that tested for this specific thing. He was at bottom 2% on one, and maybe 10% the other. He did very well on everything else.

 

You need this in school to "show your work" when doing math. Copying from the board (or copying anything - in you notebook from a page, especially graphs/pictures). I think it probably effects spelling for some kids because they need to "see" it in their heads- ( you know how you write a word and it doesn't look right?). My son's spelling was never really effected - but I think he's learned certain compenstion skills. He can do very complex math in his head - we thought it was because he's smart - but its because he has no choice but to keep it all in his head because he CANNOT write it down at the same time ! I had no idea there was a specific area of your brain where these two functions overlap.

 

Imagine the stress of being asked to do something so simple that everyone else int he class can do it with ease, but you can't do it at all - at any given point in the day!

 

I would get you child evaluated and get him using an alphasmart or keyboard of some kind if you find the same deficiency. That was recommended for my son (as well as support with anything that had to be copied - hard copies of anything put on the board by teacher, and copies of notes taken by other students in class) but he refuses, becuase that was at the start of middle school and he didn't want to be different. Maybe if we knew earlier we could have helped him do/feel better about his work and most importantly avoid all that stress.

 

Good luck!

[dcmom]

norcalmom-

 

who did your testing, and what did it entail?

I hate to put my daughter through more appts, and long testing- as she has been through so much already- and she gets aggravated

 

But- I know we have to address this (if there is no improvement) prior to middle school. I am hoping this year to be able to just do some minor accommodations with the teacher, and be able to address it formally in the spring/ summer. I am thinking, as long as she does not get too frustrated (which she gets a little frustrated now, but is VERY determined) that we could just ask for no focus or marking for spelling and/or neatness. I do want to give her a chance to improve, because I have a very minor hope this could improve if she stays healthy (pandas wise).

[sww817]

So interesting. My son has very low ability with visual perception. As I understand it, he cannot copy patterns, shapes, pictures by looking at them. That would apply to letters also. But he tests very high on putting together puzzles or duplicating patterns with forms. Hmmm.... Interesting!

[MomWithOCDSon]

First of all, Smarty, you are living up to your name!

 

And Eileen, I think you might have to change your moniker to something more befitting your current level of expertise, something like "ERPSuperMom"!

 

I love the "picture" you guys have painted collectively as of late; makes an awful lot of sense to me!

 

Yeah, I think "unfounded" is a completely different thing that "unknown" or "not real." Eileen, I'm curious how you do exposures for the whole "throwing up" fear? Just getting her into the school building and having her realize she's not actually throwing up? Some of those "obsessive thought" OCD things seem so hard to me to get past and use real-life exposures for since "proving a negative," especially with a bright kid, can be really hard! "Well, I don't feel like throwing up today but that's only because I'm looking forward to art class today; on a different day, I'm pretty sure I'll have to throw up!" That would be a likely response from my DS at certain points.

 

As for dysgraphia, my DS has definitely had it . . . still does to some extent though he's less fearful of the effort of writing these days than he used to be. But his handwriting is horrific and his spelling has gotten worse as he's gotten older; don't know if that's because he's actually declined in that area, or if the skill level has basically remained unchanged but he's developing a more and more sophisticated vocabulary and the words are inherently harder to spell.

 

He started with a 504 that gave him the right, among others, to keyboard whatever assignments he could, and we transitioned to an IEP once he hit junior high and his latest exacerbation which granted additional keyboard use both inside the classroom and at home. When he was less well, the teachers would actually give him copies of their notes in a given subject so he didn't have to take his own; he was still responsible for copying down the homework in his assignment book but, thankfully, most of the teachers have gotten in the habit of putting their syllabi (? is that the correct plural ?) on their web sites, so if he misses something, he can always check it when he gets home. His IEP also permits him to dictate to DH or I and we can "scribe" for him, either handwritten or on the keyboard; this is immensely useful when time is of the essence and, left to his own devices, he would dither and edit and erase until the cows came home! He also has an accommodation that permits him to take assessments verbally, as opposed to written, on a case-by-case basis. So, instead of having to write three essay questions, for instance, on "Hounds of the Baskervilles" for English, his teacher will pose the questions to him, he will answer them verbally, fully and reasonably eloquently, and she gives him credit accordingly. I personally LOVE that accommodation!

 

I'm curious about the E2 evaluation, also. Exactly what kind of testing was that? I know there are a couple of standard "neuropsych evaluation" tools that are used for school and IEP purposes. Is it one of those? Our DS was so obviously in a bad way when we first needed evaluation for his IEP that the school psychologist was completely on board and just did enough testing to legally secure the IEP for him; I know he got "spatial" and "verbal" IQ test scores, and that it was the gap between the two that told them his "processing" was being impacted and he needed accommodations beyond those that would ordinarily be associated with "regular OCD." But that's about all I know!

 

How do you get him recognized as an E2?

[sww817]

What does "twice exceptional" and / or E2 mean?

[MomWithOCDSon]

What does "twice exceptional" and / or E2 mean?

 

In its simplest terms, as I understand it, it means kids who are exceptionally gifted while also being exceptional in terms of having some learning "differences" (formerly known as "disabilities").

 

Here's a link to a newsletter group that I was referred to several months ago on the topic.

 

2E Newsletter

[dcmom]

So Nancy- I am surely not supermom- just "finally met a great psych" mom

 

The whole key to my daughter's "recovery" (for now) from the "fear of vomiting- mainly in school- or in public- where she would be embarrased" was exposure. We were doing response prevention (getting her back to school. very. slowly.)

 

Our USF psych realized the actual key would be the "exposures" to desensitize her to the thought. So in other words we had to have her think about it so much, that the thought was boring. She cannot control whether she has the thought, but now if the thought comes up, it is boring, and theoretically disappears quickly.

 

So- she had to say the word "throw up", say the word "throw up" to strangers, look at photos of vomit, look at photos of people vomiting, look at videos of people vomiting, write scenarios of her vomiting in school, make up stories of her vomiting in school and tell them to strangers, make fake vomit- put it on her shirt- take a photo, hang that photo where she could see it, show that photo to strangers, make fake vomit, put on floor, show to strangers that she vomited, go to the school and visualize feeling sick, vomiting, everyone laughing, and finally when school started do this visualization a few times during the day in school.

 

USF was perfect, as the "strangers" were fellow psychs- so a "safe place", yet still uncomfortable.

 

It was hard, yet every step was "not as hard as she thought", so she built confidence along the way.

 

[MomWithOCDSon]

So Nancy- I am surely not supermom- just "finally met a great psych" mom

 

The whole key to my daughter's "recovery" (for now) from the "fear of vomiting- mainly in school- or in public- where she would be embarrased" was exposure. We were doing response prevention (getting her back to school. very. slowly.)

 

Our USF psych realized the actual key would be the "exposures" to desensitize her to the thought. So in other words we had to have her think about it so much, that the thought was boring. She cannot control whether she has the thought, but now if the thought comes up, it is boring, and theoretically disappears quickly.

 

So- she had to say the word "throw up", say the word "throw up" to strangers, look at photos of vomit, look at photos of people vomiting, look at videos of people vomiting, write scenarios of her vomiting in school, make up stories of her vomiting in school and tell them to strangers, make fake vomit- put it on her shirt- take a photo, hang that photo where she could see it, show that photo to strangers, make fake vomit, put on floor, show to strangers that she vomited, go to the school and visualize feeling sick, vomiting, everyone laughing, and finally when school started do this visualization a few times during the day in school.

 

USF was perfect, as the "strangers" were fellow psychs- so a "safe place", yet still uncomfortable.

 

It was hard, yet every step was "not as hard as she thought", so she built confidence along the way.

 

 

You just gave me a "lightbulb moment!" Thanks!

 

All along, I'm thinking that your DD's specific fear was throwing up in school, but the vomit itself was at the root of the fear?! So contending with vomit itself in a public way actually got her to go to school? So it wasn't going to school so much as it was having vomit enter the picture while at school? And all along, I've been thinking that these sort of "adjunct fears" about things that might/could happen at school is just an elaborate "excuse" for general school phobia. That school is stressful and hard and restrictive at times as compared to home, and so the "I might throw up at school" is invented so that one can avoid going at all.

 

But, so, does that mean a kid like your DD may have genuine school phobia and the specific scenario they fear is a manifestation of that? Or was it never school phobia at all?

[dcmom]

It was never school phobia- I think of it as an intrusive thought. When she was at school she was in a complete panic that she would vomit, and would be embarrassed. It was the combination of vomit, and embarrassment that she needed to be desensitized to.

 

Thank goodness she was honest about it, and the psych in FL clues in on what was needed immediately. We has spent five months trying to get her back to school one class at a time. That was slow, but she was cooperating, however the ENTIRE time she was at school she was panicking inside. We never would have succeeded on that path!

[thenmama]

xx

Edited March 27, 2013 by thenmama