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Sensory Integration/Perception Disorder


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I wouldn't mind hearing about that too. I see alot of what I think is sensory too, like transitioning from shorts to long pants and vice versa, .... ALWAYS wears socks to bed, only wears t-shirts and hoodie jackets, FREAKS out and cries and whines like a little girl with knots in her hair (he's a boy) when I try to brush it for him. sharpens pencils constantly, ALWAYS removes the place mat on the kitchen table when he sits down to eat because it bothers him (have no idea why). stuff like this.

 

The one ocd I am sure of was a repetitive erasing thing he had in school that flaired last year and the year before. it had to be perfect (and it was to begin with) or he would erase it multiple times and/or go over the letter. it got so bad, he would whine and moan while he was doing it because he couldn't stop, and he eventually told me "something in his head was telling him to do it". at that point I discussed with the teacher and he was allowed to write in pen. eventually it got better, but he still corrected his work with the pen. I did not look at the PANDAS angle back then, just thought this was comorbid with tourettes. who knows? no question he is very ocd, because everything for him takes twice to three times the amount of time it takes other kids, so I truly don't know what's going on here. but I'm working on it.

 

oh and smartyjones, the sound sensitive things rings a bell too, but with my son, and this is a weird one, he doens't seem to like the sound of ME, my singing, my saying cutesy remarks, even a word he never heard before. he gets irritated and shows it! he basically has a mini meltdown over it, not joking, sometimes I do it on purpose to get a rise out of him and he comes at me, but we are both laughing.

 

So yea, are these sensory or ocd in nature?

 

Faith

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OCD is sometimes hard to explain, only in that there are about 7 common areas of obsessions, and as many compulsions that result as a mind can create. So I'd really have to understand your child's situation to give the examples that would make the most sense to your situation. However, with that consideration - here is our situation. Meg had primary obsessions in the "contamination & safety" column and in the "scrupulosity" column of OCD. Her related compulsions took up nearly the entire day. Most of these were in her mind, but some were physical. Some of the things that I originally had in the sensory column were as follows:

 

Sensory Issue: Megan has become very sensitive to taste & is rejecting many of her favorite foods. She says that they taste wrong. Actual issue: once we understood OCD, she was able to tell me that her OCD was making her think something bad (mostly throwing up) would happen if she tried to eat certain things. So to fight back against the OCD, we would take baby steps to try the food, break up the ritual of AVOIDANCE. Avoidance is one of the most common OCD rituals, and is in some ways, the hardest to spot. (For Meg, it was Agoraphobia - wanting to stay at home and with a safe person). Since OCD feeds on ritual, the more we stayed at home, the harder it was reinforced that she would not go out. Now, with slow patient therapy, Meg has added back all of her food options. Once we added the antibiotic, the difference was that she would be able to buy & taste & like the new food all in one day (or maybe two). Before the antibiotic, she could still add back the food, but it might take a week of work and rewards. So the OCD seemed to become just habit based.

 

Sensory Issue: Megan often freaks out in a crowded classsroom, and will not let other children touch her. Acual issue: Meg is so scared of germs, that she cannot touch another child, even her best friends. She does not know how to explain this. Children cannot touch her paper, her pencil, her body. She cannot play games that involve physically touching anyone. At OT, she will fight with another child to get to play a game EXACTLY the way her OCD wants her to play. She is often evaluated as being unable to get along with other kids - but actually it is her fear of germs. After ERP therapy, she works very hard on this, as she loves being social SO much.

 

sensory issue: Megan hides behind notebooks while testing. She seems overwhelmed by the noise of the classroom. Actual issue: Meg is convinced that she will cheat. She is building walls around her so that can cannot see anyone's paper & therefore worry about cheating.

 

Sensory issue: Meg freaks out if I am in the least angry and feels that I am yelling at her. She seems to hear all voices as much louder than they are. Actual issue: Meg's OCD tells her that if she does anything wrong, that her mom (me :) ) will leave her. This is an irrational fear, but as a result, her tolerance for getting into trouble is at zero. It sends her into a complete panic.

 

Sensory issue: Meg cannot wear some clothes. Actual issue: This one was two parts - she always had some mild sensory issues about clothes, from birth. But we dealt with those through habituation techniques. But some clothing issues continued to create panic. It was because OCD told her some outfits would make her sick, literally. Either because she wore them around someone that was sick or she was sick when she wore them - or they could have been touched by someone in a store - you see this loop is endless! Again, ERP therapy and a lot of courage on her part - much easier when treated medically, but still there.

 

Sensory issue: light really bothers Megan. This was true, and went away with anti-biotics. This was also true for really loud noises.

 

Ok, this is just a few. I'll pull up notes and post more later. Feel free to ask questions about this.

 

I know I keep asking the same question over - but I am still trying to get a handle on OCD. Can you explain what you mean that the sensory issues were really OCD?

 

My son had extreme sensitivity to sounds during exacerbation. He's always been sound-sensitive - balloons popping, blender, mixer, coffee grinder. He doesn't really seem to have that now - which adds to my curiosity about just how long has he had pandas symptoms that may have been mild or if it's a growing out of it thing.

 

Thanks,

Kathy

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this is a weird one, he doens't seem to like the sound of ME, my singing, my saying cutesy remarks, even a word he never heard before. he gets irritated and shows it! he basically has a mini meltdown over it, not joking, sometimes I do it on purpose to get a rise out of him and he comes at me, but we are both laughing

 

Faith - hilarious! I'm so glad you've found the humor in it.

 

Meg's mom - thanks for all your info - it is a great help - only, I'm sure I'll have more ?s for you. You have truly done some difficult work - here's to you!

 

~Kathy

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An example of an action that can be OCD or sensory is aversion to touch. Do they not want to be touched because the touch itself bothers them and sends shivers down their spine and nails on a chalk board or do they not wat to be touched becasue you are contaminated and you now put germs and dirt on their body?

 

Same action. Different reasons. However, some actions might be combo during an exacerbation. Touch was like that with my son.

 

Perhaps list what you are unsure about and, if you want, let others view it from outside the situation. It is important to include what the reaction is.

 

Sensory invloves many things. This are the areas that my son was tested on by the school district...

Auditory processing

Visual processsing

Vestibular processing

Touch processing

Multisensory processing

oral sensory processing.

 

Even things like looking in a dresser and not being able to choose what to wear can be sensory. But then again, that can be OCD.

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We have not done nearly as much therapy or learning about ocd as Meg's Mom (btw she has really given me great advice and support.), but one of my daughter's main issues was clothing. She literally woke up one day and said that none of her clothes fit, and none of her panties fit either. She threw them all over the room trying to find something to wear. She ended up wearing pjs to school for a couple of weeks, then we finally got her into one outfit and she wore that for a month. Still no panties. Once she got on zithromax- it took about 2 weeks, and she was back to wearing just about anything in her closet.

 

I thought this was sensory- and was trying new stuff from Hannah Anderson- no luck.

 

The therapist thought it was more of an ocd behavoir, but it would morph in between weekly sessions- which was frustrating, and made it hard to work on.

 

At the time, she could still wear dress up clothes (itchy, cheap halloween costumes) and bathing suits.

 

In the end, possibly it was a combination? A new underlying sensory thing- combined with anxiety and ocd (and seperation anxiety that also felt like it could head toward agoraphobia). Although, many of the worst days- she would be happy as a clam going to school in her pjs.

 

I really never found the underlying reason. She is doing well now (not 100%), and can wear many things- but still has a hard time dressing when stressed.

 

BTW, she also had issues of not feeling dry after urinating, sunlight sensitivity, aversion to hair brushing, teeth brushing and bathing.

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HI Faith - here is my best guess about the list you gave:

 

Sensory:FREAKS out and cries and whines like a little girl with knots in her hair (he's a boy) when I try to brush it for him. Answer - you need to try OT for this, and get to the point where he can do it himself. I don't touch Meg's hair unless she asks. :)

 

 

Most likely OCD, given what you have said:

 

transitioning from shorts to long pants and vice versa, .... ALWAYS wears socks to bed, only wears t-shirts and hoodie jackets, FREAKS out and cries and whines like a little girl with knots in her hair (he's a boy) when I try to brush it for him. sharpens pencils constantly, ALWAYS removes the place mat on the kitchen table when he sits down to eat because it bothers him (have no idea why).

 

The one ocd I am sure of was a repetitive erasing thing he had in school that flaired last year and the year before. it had to be perfect (and it was to begin with) or he would erase it multiple times and/or go over the letter. it got so bad, he would whine and moan while he was doing it because he couldn't stop, and he eventually told me "something in his head was telling him to do it". at that point I discussed with the teacher and he was allowed to write in pen. eventually it got better, but he still corrected his work with the pen. no question he is very ocd, because everything for him takes twice to three times the amount of time it takes other kids, so I truly don't know what's going on here. but I'm working on it. (PERFECTIONISM is a form of OCD - the obsession is that something "bad" or wrong will happen if they are not perfect - compulsion is doing it over and over. DOUBTING is another form of obsession in OCD, this can also cause compulsions that slow kids down a LOT. This responds very well to ERP therapy)

 

OCD: he doens't seem to like the sound of ME, my singing, my saying cutesy remarks, even a word he never heard before. he gets irritated and shows it! he basically has a mini meltdown over it, not joking, sometimes I do it on purpose to get a rise out of him and he comes at me, but we are both laughing. (It is great to have a sense of humor about this. There is a show called "Obesssion" on A&E - the old shows are on-line. There is one, where a woman has obsessions about hands and fork noises - they just "feel wrong" like fingernails on a chalk board. Her mom in particular drives her "mad" and she does ERP for this. It works).

 

The thing about OCD, is that it is irrational. It means that part of the brain is not working correctly. So you don't have to find the logic in it - you or your child. You just have to do the ERP therapy to get over it.

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Darn it all, I just lost a post! I hate the internet at our house. :) Anyway, Meg's first episode was at 3.5. We thought PANDAS/OCD - no one agreed or would treat, we did ERP & anti-biotic for ear infection. Age 6.8, again, sudden onset - diagnosed with Anxiety, Panic Disorder & Agoraphobia - no one would treat (too young). So we did "home-made ERP" which is also good for Panic - and it worked ok, but I know now, that I was missing a lot of little stuff. Then back again at age 7.5 - this time, clearly OCD and Panic. After flying through some therapists, took her to Pediatric OCD specialist at Duke, who is awesome. She taught us the most about how to recognize OCD and fight back. Also some awesome books - basically, we read everything, reviewed all the research literature we could find, went to OC Conference to learn more, listened to parents on OCParenting. We immersed ourselves in the world of OCD for a while. Then we met a researcher at Yale, and he finally said "Look again at PANDAS", and another mom that post here some also really helped us understand PANDAS more. Once started on anti-biotics, her mind calmed again and ERP became even easier.

 

Now at age 8, Meg understands her mind from an OCD perspective, and can mostly help herself if needed. As a family, we are better able to talk to and help her. We don't accidentally dismiss or mock irrational fears. We know how to ask questions and how to interpret some behavior. She is not punished for OCD behavior. It's like we learned a new language, and it helps us all cope. Meg knows that this may come back (but not yet why) - and she feels that she is ready for it. She loves being Meg, and understands that sometimes it will take some courage and work to get to do what she wants to do. But she has not had a panic attack in months - even before the anti-biotics. It's not so overwhelming for her, the scary irrational thoughts. Honestly, she is my hero - both her dad and I are amazed at what she can do at only 8 years old, at her personal courage. We often worried that we were needing her to do too much - but in fact, all that work is what is allowing her to be a child again, and for us to have joy back in our house.

 

Reading books really helped me - here are some suggestions:

 

Adults: What to do when your Child has OCD: Strategies and Solutions - by Aureen Pinto Wagner

Talking Back to OCD: The Program that Helps Kids and Teens say NO WAY - and Parents Say Way to Go - by John March

Freeing Your Child from OCD: Powerful Practical Program for Parents - by Tamar Chansky

Brain Lock by Jeffrey M. Schwartz

 

Kids: What to do When Your Brain Gets Stuck - a Kids Guide to OCD - by Dawn Huebner

Blink, Blink, Clop Clop,. Why I do Things I just Can't Stop by Katia Moritz

Up and Down the Worry Hill - by Aureen Pinto Wagner

 

I also have a blog (long & boring!) about the challenges along the way, if you are interested. Or if you want some of our example files about OT or about OCD therapy, just PM me your email address. In some strange way, perhaps her PANDAS was made worse by the misdiagnosis over the years. Or maybe it helped us know how to fight the OCD component of it. I am not sure, but it is the path that we were on, and at this point, we are grateful for the place that we find ourselves in now. While we dread the next onset, if it comes, (and yes, we are on permanent low-dose Azith) we are fairly confident that we at least have some tools to deal with the psychological component of it. I even wonder, if she had some very very mild OCD tendencies to start with, and this is why the OCD is so intense when PANDAS comes? But when I found myself with a 3 year old that seemed to have OCD, depression and Anorexia - all in the space of a week - I knew that we had to take dramatic measures on all fronts. I still fear the teen years, and hope this is really gone by then. But on the flip side, hopefully, we are giving her all the tools to handle whatever comes her way.

 

Meg's Mom, I am sorry if this is repetitive but how old is your dd? How did you figure out what the real issues/fears were? Is she able to express it now?
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Thank you for sharing all that Meg's Mom. I am mostly trying to figure out if my ds will ever be able to tell for himself when he is not acting like himself. His symptoms are not so extreme and obvious as your daughters but I am so hoping he can identify when he is being nasty and irrational versus when he is not. He is 7. 3 days ago he was kind, I had just told him how nice his tone was when talking with his sister and how enjoyable he was to be around. Today he is back to how he was and I asked him if he was ok, if he felt ok or felt different but he just says he is fine. He has no idea what I am talking about or why I am asking. He said he is acting that way because everyone is mean to him (nothing has changed, nobody has been different with him from 3 days ago). I just wonder if as he matures if he will be able to express himself at all or see he is being irrational.

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would ADHD (focus/attention) also be a part of this, or is that a separate thing? are any of your pandas kids here also considered ADHD or ADD? just curious. My son is not hyperactive but definitely has trouble focusing and staying on task. He is becoming aware of it too. Again, are these separate issues woudl you think?

 

Faith

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Bronxmom, exactly he doesn't see how it impacts others either. Interesting is that when I am reading here I see a lot of the girls have the phsyical rages and the boys seem to be mouthy and more emotional. I know I am just basing it on what has stood out to me on here. I would have expected to see that the other way around.

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My son had horrible physical rages.

 

 

quote name='erica240' date='Oct 4 2009, 06:34 PM' post='40036']

Bronxmom, exactly he doesn't see how it impacts others either. Interesting is that when I am reading here I see a lot of the girls have the phsyical rages and the boys seem to be mouthy and more emotional. I know I am just basing it on what has stood out to me on here. I would have expected to see that the other way around.

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My daughter has panic attacks around getting dressed. She will now only wear shorts and t-shirt., crocs..no socks, no jacket,no long sleeve pants or shirts. Problem is we live in Denver, Fall is here and it is starting to get very cold.

 

At first we thought it was her jt. pain,but now believe it is her OCD and not SPD.

 

Ladies, does anyone have any suggestions.? Getting dressed is like climbing a mt. I have wasted and spent alot of money on shoes and clothes---J

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My daughter has panic attacks around getting dressed. She will now only wear shorts and t-shirt., crocs..no socks, no jacket,no long sleeve pants or shirts. Problem is we live in Denver, Fall is here and it is starting to get very cold.

 

At first we thought it was her jt. pain,but now believe it is her OCD and not SPD.

 

Ladies, does anyone have any suggestions.? Getting dressed is like climbing a mt. I have wasted and spent alot of money on shoes and clothes---J

 

I feel your pain! This is our biggest problem at the moment. I take our dd shopping for "comfy clothes". She feels them inside and out and usually rules mostly everything out. I cannot "make" her wear something. We have tried and it turns into a terrible tantrum every time. (A lot of crying an anxiety.) I know exactly how you are feeling. Last year she would not go to school. This year, she will go! I am happy enough that she is going that I have definitely made concessions with clothing on a daily basis. Taylor will not wear socks either. She will not wear pants. I would prefer her to be at school so I pretty much let her pick out what she wants to wear. I have told her teacher to expect some "strange" outfits for the season. If she isn't cold, then I try not to worry about it. She never complains of being cold.

 

Hang in there! I understand. We too have spent so much money on clothing!

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