Sensory issues

[shannon aka mommy]

Greetings Everyone,

 

Posted "New Here -- Need Advise", but I have a new question. We have a clinical PANDAS diagnosis for my 14 year old son.

 

His worst symptom right now is sensory. He can't even eat dinner with us because we are "too loud". This has improved a little since he has been on the antibiotic (or it could be dietary changes -- hard to know). I have seen very little posted here about sensory issues. Most of the posts here deal with OCD. I can say beyond a shadow of a doubt that this sensory stuff was sudden onset. I definietly would have noticed him running around telling everyone to be quiet before now:)

 

His OCD symptoms are secondary or maybe just much less noticalbe to me. He tells me he is still having thoughts -- sometimes violent and he will not tell me about what. I ask him if he is performing a ritual to relieve the stress and he says no. I ask him if he repeats words in his head or counts and he says no. He is homeschooled and I have a great deal of control over his environment so maybe this is why the OCD is not as bad? Does the OCD have to be bad for this to really be PANDAS? The OCD has definitely been worse since his illness in January.

 

Has anyone else experienced this?

 

Shannon

[nicklemama]

My DS was diagnosed w/ Sensory Processing Disorder many months before PANDAS. He was a sensory seeker in that he was hyper, threw himself on the floor, ran into us full at full steam, touched everything, licked everything, smelled everything, and was dangerously thrill seeking by climbing as far to the top of our tree as he could get. He broke many, many small limbs. He also had OCD, severe separation anxiety, emotional lability, sleep disorder, tics, etc.... I think many of our children have sensory difficulties w/ PANDAS. It wasn't the worst of his symptoms, though. The OCD and anger/irritibility, raging was what was driving us to try and figure out what was wrong w/ him. My DS's OCD was not as pronounced as the anger/irritibility. Little did we know, the anger/irritibility was from being interrupted in his OCD's. There were many obsessions and compulsions we did not recognize as OCD until after the PANDAS diagnosis and reading Tamar Chansky's Freeing Your Child From Obsessive/Compulsive Disorder.

[PowPow]

Sensory and school issues were the first symptoms for one of my pandas daughters. 6months and another strep later, full-blown OCD moved in. pandas tx(abx, steroids pex&ivig) helped immensely with all of it.

Edited March 22, 2012 by PowPow

[dut]

hi - yeh, sensory has been a huge issue at times for both my PANDAS kids. Sensory seeking son like nicklemama's child and a sensory defensive daughter. She refused to wear anythingbut 2 pairs of trousers and a couple of tops at one point. There was only 1 pair of sandals that she would wear, no socks, no hairbrushing etc

 

Treating the PANDAS, treats the sensory stuff for us......

[Kiera]

Sensory levels get extremely hightened here too with exacerbations - smells of foods, going off his favorite foods,running out of restaurants/stores due to smalls, running out of hair-dresser due to spray bottle, hands on ears with noise etc. Check old posts here, there's lots of sensory issues.

[kimballot]

sensory issues are common. Sounds, smells, visual, touch... you name it.

 

You might get some ideas here http://www.nysota.org/node/334 or here http://pandasnetwork.org/wp-content/uploads/2012/01/PANDAS-OT-Article.pdf or ask the OT in your son's school for ideas to help cope while in exacerbation - though you may need to share the articles with the OT so s/he is familiar with PANS.

[fightingmom]

Sensory levels get extremely hightened here too with exacerbations - smells of foods, going off his favorite foods,running out of restaurants/stores due to smalls, running out of hair-dresser due to spray bottle, hands on ears with noise etc. Check old posts here, there's lots of sensory issues.

 

 

Same here. Light sensitivity and smells. I am EXTREMELY sensitive to smells as well, laundry aisle in store makes me sick and pissed off in 30 seconds. And, we have a skunk in the neighborhood that strolls around at night in spring and summer and it makes me MISERABLE. I can smell him when i get into my car the next day and even with our windows closed. My son, too. My will not go to any craft stores with me because of the smells and some department stores.

 

He also will not use any type of lotion because he doesn't like the way it feels.

Edited March 22, 2012 by fightingmom