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Topaz1968

Sensory Issues?

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Can this be related to Pandas? I was not aware of it being a symptom, but my son's sensory issues have gotten worse, and I am not sure what we are going to do once school starts and he has to wear sneakers again. He has been wearing flip flops all summer because he hates wearing sneakers because they never fit right right - either too tight or too loose. It can sometimes take 20 minutes to get it right in the morning. He has also been very itchy with shirts he has worn all year. He says they are uncomfortable. And, I do not even want to get started on wearing pants because he refuse to wear pants that do not have an elastic waist or if they are uncomfortable. Shorts are easy, and he can wear them the first month maybe, but I am not sure what else to do. I am going to see Dr. B next month, but I really want to get him prepared for school and I am not sure if the sensory issues are related. Any thoughts?

 

Thanks

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Sensory issues are most definitely PANDAS related. Sensory Processing Disorder was the first diagnosis given to my DS. His sensory issues have mostly abated after abx and IVIG. He became a huge sensory seeker, which can be mistaken for hyperactivity. He ran into things, touched everything, smelled everything, spun on the floor, sat in our family room chairs w/ his back on the seat and his legs dangling over the back of the chair to watch tv upside down, jumped, spun, climbed high up into trees. He also became sensory defensive to loud sounds. He would cover his ears and the sound of public toilets flushing freaked him out.

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OMG - this is my son to a tee. He was never diagnosed with having SPD - but now, I think he definitely has it. I just hope that since he is 10 years old, that it is not too late to treat it effectively. I am hoping that once he goes on a stronger ABX - it will help. I am still on the fence about IVIG. Not sure if we want to got this route yet. My son is also scared to flush the toilet - even at home.

 

Thanks so much for the reply

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My DS had 7 months of OT for his SPD. It helped some. The thing that helped the most was the long term abx. To determine SPD, you need to have your son evaluated by an OT who is trained in SPD, if you want to seek some treatment. Around our area, there are quite a few OT clinics that treat only children and most of them have SPD and autism. SPD occurs very frequently in kids on the spectrum. The first thing I was asked was if DS was on the spectrum.

 

Wanted to add, many insurances don't cover OT for SPD. We got it covered for 7 months, then they pulled the plug. Around the same time, he was diagnosed w/ PANDAS and started on abx. Then he didn't need the OT because the sensory issues faded away. Unless your insurance covers it, I'd just chase the PANDAS treatment.

Edited by nicklemama

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OMG - this is my son to a tee. He was never diagnosed with having SPD - but now, I think he definitely has it. I just hope that since he is 10 years old, that it is not too late to treat it effectively. I am hoping that once he goes on a stronger ABX - it will help. I am still on the fence about IVIG. Not sure if we want to got this route yet. My son is also scared to flush the toilet - even at home.

 

Thanks so much for the reply

My daughter is also scared to flush the toilet. I thought it was due to the sound since she previously had sensory issues (one being the startled noise of the automatic toilets). But when I recently grilled her, I found out she was afraid of losing something down the toilet, even though she never brings anything in the bathroom with her. So it's an OCD "fear of losing/hoarding" issue for us.

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I believe that even Swedo has mentioned sensory issues as part of the comorbidity syndrome with respect to PANDAS.

 

My DS has definitely had sensory issues, pretty much from the age of 3 (when we think his PANDAS actually began, on the heels of multiple ear infections) onward. Like most of his other PANDAS symptom set (OCD, ADHD, processing issues), his sensory issues are much more intrusive in exacerbation and fade significantly when he is healthy. We had him evaluated by an OT before we knew about PANDAS, and he was identified as having some lower-level sensory issues, though I honestly can't remember exactly what the specific test results were. We tried some OT to address it, but he was not compliant . . . hated it, as a matter of fact. And once the OCD set it, we had to pick our battles and go to war against the biggest, most intrusive ogre, so the sensory stuff didn't take precedence.

 

Like I said, outside of exacerbation, DS's sensory issues are significantly muted, but he is still a "picky" dresser. Thank goodness, most standard t-shirt and underwear brands now come "tagless," so that's one less battle. He tends to settle on one brand of socks that he likes (seamless, crew), and I just buy those in multiples whenever I can. Shoes can be really tricky, so my DS pretty much wears only one pair of shoes at a time, until he either outgrows them or they fall apart; he has some legitimately distinctive physical issues, such as an atypically high instep and wide toe box, so we find Merrill's, Ecco's or Keen's to be the most comfortable for him. Not inexpensive, but they do last well, and if he outgrows them before they're completely worn, I usually get a decent dollar for them at the used/resale shops.

 

Pants, I think, are the trickiest part. My DS spent most of is 1st through 4th grade school years in a variety of sweat pants; at that size/age, I was able to find cargo styles, a variety of colors, and ankles without elastic in them, so he didn't look exceptionally geeky or odd. But still, with the "cool kids" in their Levis, he tended to stand out. By 5th grade, he cared about fitting in more, but he still couldn't make peace with stiff, hard, scratchy jeans or their typically stiff zipper flies. So here was my solution: I bought him denim, cargo scrubs. I was able to buy them in a "short" length, and the waists are a combination of drawstring and elastic, so he could accommodate his comfort that way. But once he put on an untucked t-shirt or even a polo, you really couldn't tell that his cargo jeans were any different from the other boys'. But they tend to be much softer weave, and all I had to do was remove the "Scrubs" sticker applique on the back seam with a seam ripper. They come in a variety of color washes, too, from dark indigo to stonewashed.

 

We're finding other options and higher tolerances as he matures and gets healthier, but I don't regret "accommodating" some of the sensory stuff along the way. Unlike accommodation of the OCD, the sensory "kindnesses" we've granted him over the years don't seem to have "stuck," really; when he doesn't need them, he goes with the flow and it's no big deal.

Edited by MomWithOCDSon

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The book "the out of sync child" may help you to deal with sensory issues. (http://out-of-sync-child.com/). You can also request a consult from the school OT if it is interfering with school function (glue in art class? wearing shoes in school? Being close to other kids in line?).

 

Lucy Miller recently spoke on blogtalk - coffee klatch, and it is podcasted here http://www.blogtalkradio.com/thecoffeeklatch/2011/07/28/dr-lucy-miller--the-sensory-processing-disorder-foundation

 

Her organization, Sensory Processing Disorder Foundation, (http://www.sinetwork.org/) may have some ideas for you also.

 

Also, the New York State OT Association has some PANDAS/PITAND information that may be helpful for home or school: http://www.nysota.org/node/334

 

 

Good luck! I remember that this was the reason my son stopped playing hockey in elementary school - he simply could NOT tolerate the uniform and the skates!

Edited by kimballot

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Thanks for the replies. A lot of great information for me to work with. He is supposed to have a full evaluation at the beginning of the school year by the school Psychologist and OT person. But, I think I will also look for an outside OT specialist since I think it will be a losing battle for me without some intervention. Thanks for the links Kim. I will take a look at the book, I want to do anything I can for him to be more comfortable. He was allowed to wear a hat at school last year, because he was constantly touching the cowlick in his hair. It stopped for while, but has started back up again, so that may be coming back in this year also. Again, I don't know who his teacher is going to be yet, and I am nervous because he had such amazing support last year, including his teacher. I am very involved in the school and I am also a teacher, so I am hoping that will help out a little as well. I don't mind getting in there and pushing if I have to.

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Thanks for the replies. A lot of great information for me to work with. He is supposed to have a full evaluation at the beginning of the school year by the school Psychologist and OT person. But, I think I will also look for an outside OT specialist since I think it will be a losing battle for me without some intervention. Thanks for the links Kim. I will take a look at the book, I want to do anything I can for him to be more comfortable. He was allowed to wear a hat at school last year, because he was constantly touching the cowlick in his hair. It stopped for while, but has started back up again, so that may be coming back in this year also. Again, I don't know who his teacher is going to be yet, and I am nervous because he had such amazing support last year, including his teacher. I am very involved in the school and I am also a teacher, so I am hoping that will help out a little as well. I don't mind getting in there and pushing if I have to.

 

You might be able to find some nubby fidget toys that he can touch/ manipulate (if it is in the school plan) in place of the cowlick. Also, some OTs put rough-surfaced velcro under the student's chair or on the underside of the desk for the child to touch during class for touch input.... just a couple of ideas. I hope the OT can help you! do listen to Lucy Miller's podcast it was very good.

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My ds's sensory issues are most definitely related to/caused by his PANDAS. Before he was dx'ed with PANDAS, he was dx'ed with dyspraxia, which is a motor planning disorder and a sub-form of Sensory Processing Disorder. He also exhibited sensory defensiveness to loud noises, developed some oral input needs, and spun in circles frequently. He was fully evaluated by an OT who specializes in SPD--I highly recommend looking for an OT who specializes in this area. A few months after he started working with the OT he was dx'ed with PANDAS. Right after that he went into his second major PANDAS episode. His sensory needs and motor issues were dramatically more noticeable at this time. After tx with antibiotics his sensory and motor issues improved dramatically. Like others have said, my ds's sensory issues are most apparent when he is in a flare or exacerbation. Working with the OT has greatly helped his motor planning and sequencing, his strength, and his other sensory issues. But I do not believe he would have had this improvement without proper dx and tx of PANDAS. Our insurance pays for some of the OT. I can't recall what diagnosis code she uses, but I know it's a general code. Maybe that makes a difference?

Re: the elastic waist issue, we have the same problem, but for another reason. My ds has a tremor in his hands and arms, so doing zippers and buttons can be difficult for him. I don't want him to have to worry about not being able to undo his pants when he is at school, so I have to find pants with an elastic waist. That gets trickier as he gets older (he's almost 9). Lands End has at least a few styles of pants with an elastic waist. There are cargo styles and denim styles too. They are not super dorky--my older ds even wears one of the styles because they work for our uniform code. (If you sign up for Lands End emails they will frequently send you notices of sales and there is always a free shipping code included.The only other place I have found elastic waist pants that come in ds's size and are nice-looking is Children's Place.)

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OMG - this is my son to a tee. He was never diagnosed with having SPD - but now, I think he definitely has it. I just hope that since he is 10 years old, that it is not too late to treat it effectively. I am hoping that once he goes on a stronger ABX - it will help. I am still on the fence about IVIG. Not sure if we want to got this route yet. My son is also scared to flush the toilet - even at home.

 

Thanks so much for the reply

 

It always amazes me when other parents exactly describe some of my child's quirky OCD behavior that I think is "ours alone." My son goes through stages where he does not flush the toilet- we are in it, now, as a matter of fact. Came out of the blue just in the last week or so- will go away in time- if pattern repeats itself- as it usually does. He was flushing fine before that:)His issue is fear of running water- he is afraid toilet will overflow!! Other parents have brought up closing doors which is one of my son's quirky OCD behaviors- not harmful, by any means, but just odd. Probably not noticed by most but I notice. This week, he told me he does not have to close the doors anymore. No reason given but apparently, that need has been replaced by inability to flush toilet. :huh: It's ever-changing and I just don't even try to figure it out, anymore. Just work around it. None of it is matters, for the most part, and by the time I make progress in one aspect- it will change to something else.

 

My son has had on again, off again sensory issues for 7 years. Noise sensitivity, smells, bright lights, heat, cold, clothing textures etc. I have come to believe this is not a disease condition, in and of itself, but rather a manisfestation or symptom of the underlying disease process. I have seen it come and go so much that it has to be related to neuro inflammation- it is not a disease state independent of other factors, in my view. He had OT for 6 months from Jan to June- sensory issues waxed and waned within that time frame so I can't say that it was that effective as a strategy. One particular sensitivity seems to come to the forefront at different times and others take a back seat.

 

I have been through all the clothing things like Nancy- Thank God for elastic waist band pants- LOL! I remember several years ago having the shopping day from ###### when we had to buy tennis shoes for school. Nothing felt right- too tight, too loose, tongue too puffy. After numerous stores, out of character meltdowns and 1000's of shoes later (so it felt)- we finally found the perfect pair. It was a true Cinderella moment for me:)The sales lady even rejoiced as she had been witnessing my pain- she remarked that I deserved a bottle of wine for my patience and fortitude with the whole process. That was the only time he EVER did that with shoes- never before and never since. Something must have been realy "turned on" with his feet that day! So, I've learned, this too, shall pass with whatever sensory issue he is going through at the time. None of his issues are too debilitating so we've made accomodations. Some of it seems rooted in sensory issues, some of it a little OCD and some of it is fears. I have stopped trying to make sense of it. He is better at going with the flow the older he gets. I can remember years he wore jeans without issues yet last year was the "Year of Elastic Waist Bands!" I'm sure peer pressure, to fit in, will rule the day at some point. However, until it does- we just make accomodations. I'm conviced it is a symptom of neuro inflammation- these kids just feel/hear/see things more strongly in certain sensory issues.

 

Good luck shoe shopping- I'll send you a bottle of wine at day's end :P

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My ds's 1st diagnosis was SPD at age 2 (he's now 9) but when he gets a PANDAS flare the sensory stuff goes through the roof and calms down to baseline with remission of PANDAS symptoms. As regards OT, worth trying. The SPD foundation is trying hard to get SPD as an independent diagnosis in the DSM V edition, due out in 2013, in which case it'll be recognised and have a code to be billed for. Right now, OT is usually billed under a variety of other labels eg fine motor delay, as in my son's case. However, after a couple of years of covering it, they stopped this year and state it's excluded, so it's a case by case basis with the insurance companies! As with alot of these neuro disorders - cause unknown, but I'm sure as previously mentioned, inflammation has a lot to do with it, or at least aggravating it!

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You guys are great - I just cannot believe how many of us have gone through the same problems with our children. I am so happy to hear that my DS is not the only one. I am definitely going to try and find someone local who can work with him. I think if we can get this under control somewhat - it will really help out. Now, I just need to deal with his extreme hatred of school work, and then we will be good :) That is another story all together.

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My son has same issues as you described. I buy him jeans and other cargo pants from lands end, they have an elastic and no buttons. You can find them in sears if you don't want to order online. I also found elastic band jeans at crazy 8. The gap also has some cargo pants that I have been able to find. It is very difficult shopping but it can be found. For the shoe issue I found that my son does great with sneakers from tsukihoshi, they are very light weight. He used to wear geox but with these he doesn't at all complain. Good luck!

Can this be related to Pandas? I was not aware of it being a symptom, but my son's sensory issues have gotten worse, and I am not sure what we are going to do once school starts and he has to wear sneakers again. He has been wearing flip flops all summer because he hates wearing sneakers because they never fit right right - either too tight or too loose. It can sometimes take 20 minutes to get it right in the morning. He has also been very itchy with shirts he has worn all year. He says they are uncomfortable. And, I do not even want to get started on wearing pants because he refuse to wear pants that do not have an elastic waist or if they are uncomfortable. Shorts are easy, and he can wear them the first month maybe, but I am not sure what else to do. I am going to see Dr. B next month, but I really want to get him prepared for school and I am not sure if the sensory issues are related. Any thoughts?

 

Thanks

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