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I just learned this and figured I'd share.

 

DS has been wrapping himself tightly in his covers lately and his his legs look like those of a mummy. By chance, someone posted in Facebook that their child likes to be wrapped up in blankets..."He is seeking sensory input and the deep pressure has a calming and organizing effect to his nervous system and muscles/joints." I found it interesting that DS was doing this on his own and it seemed strange and unique. I'm glad that there is a reason and was interested to see others do this too (some with blankets and some with stuffed animals covering them, etc).

 

T.Anna

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I've been on this forum a long time and many here have reported that their children with PANDAS/PANS have sensory processing issues. My DS16 was treated for sensory issues for many years by an OT before he was properly dx with PANDAS/PANS. I even made a 10 lb. lap pad for him to use while he was sitting and he would move around the house in something called a "body sock." Sounds weird, but his brain was obviously so scrambled and not processing input correctly that he needed extra sensory input to override the confusion in his brain. After 2.5 years of aggressive tx and 10 monthly HD-IVIG, his sensory issues are hardly noticeable. I imagine over time with continued tx, your son's sensory issues will level out.

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Hi T.Anna. I happen to know a LOT about sensory issues....I have twins: one Hyper-sensory one Hypo-sensory. Here is the deal about the wrapping of blanket. Both my kids do that for different reasons. My Hypo (seeker) does it because he likes the sensory input. My Hyper-sensory child does it for 2 reasons. It is comforting and calming, but also, hypersensory children don't like to feel the blankent, jeans, shirts, shifting against their bodies. Example: Both my kids used to wear their belts EXTRA tight, until I learned about sensory, I always wondered why....My hyper-sensory did it because he could not stand the shifting of his jeans against his body, he also tied his gym shoes like ice skates for the same reason. His brother, Hypo wore the belt tight because he LOVED the pressure.

 

It is important for you to distinguish whether your child is Hyper or Hypo, because the way things you can do to help Organize his sensory input will be different.

 

If you would like more info, PM me. Great discovery...this could be related to his bathroom issues...........

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I just re-read your IVIG post and I am going to take a leap and guess that he is HYPER-Sensory. My Hyper-sensory child HATED showers, face washing, teeth brushing, dressing, food textures were a problem, clothing, loud sounds, a room that was too busy, to loud too bright....this all caused him stress.

 

I am wondering if his bathroom rituals are really about him agonizing about the feel of the water hitting his body, running over his face, etc...His limited food selections could be very much tied to textures: does he prefer foods that chew easily? Does he hate things that are a little tough and more likely to cause choking? Does he get stuck on wearing the same clothing? The clothing that he chooses, are they extra soft and very worn in? Do they tend to fit him almost perfectly in shoulder and waist? Is he a creature of habit? Wanting to sit in the same place most of the time, does he like things in their place? Does he tend to be on the neat side of the fence? Does he tend to be either overly warm or cold and choose clothing for that purpose as well? His classroom, bright lights, busy room, sitting to close to others could all be a problem.....Sensory OVERLOAD.

 

Problems with Emotional Regulation are a BIG part of it....to understand my child's snarky, crabby mood, I asked myself...."IF I had to walk around the world in a wool sweater all the time on a 90 degree day, How would I feel?"

 

On the flip side, Hypo-sensory could have similar problems but for different reasons.

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You can buy both "pressure vests" and "weighted blankets". Look on E-bay for sensory items. The weighted blankets supposedly help with regulating sleep as well as providing security. You can buy them in different weights.

 

Ebay weighted blankets:

 

http://www.ebay.com/sch/i.html?_odkw=sensory+items&_osacat=0&_trksid=p2045573.m570.l1313.TR11.TRC1.A0.Xweighted+blanket&_nkw=weighted+blanket&_sacat=0&_from=R40

 

Youtube video on how to make your own weighted blanket:

 

 

One article discussing how much weight to use and benefits:

 

http://www.especialneeds.com/benefits-of-using-weighted-blankets-to-help-children-with-sensory-processing.html

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Hrosenkrantz...

My DS16 has had 10 months of HD-IVIG, but this is only part of the aggressive tx we have done. He has been treated and continues to be treated for viruses, Lyme & Co, strep, methylation issues. we have also addressed diet (4 yrs of gluten/casein free), organic foods, gut health with probiotics and other GI support supplements. IVIG is helping, but it has not been a cure-all.

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He definitely has sensory issues, but it's difficult to see where sensory starts and just right OCD ends. When he sleeps in my bed then everything is loose. He eats a variety of food, from super hot soups, frozen ice cream, crunchy cookies, mushy cakes etc. I'm pretty sure most will dissipate once he's better, so that's our focus. It doesn't bother me if he wants things tight/loose, as long as he's stuck at home it's all bad.

 

My reason for posting was because I found it fascinating that so many PANS kids do this. On a similar note, I just read the pinned symptoms list here and the "piano finger movements" were another thing I thought DS was unique in doing.

 

T.Anna

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