abc news 20-20 5/18/12

[norcalmom]

Anyone who's kid is triggered by noises, especially noises of the mouth, and especially noises made by people closest to them - NEEDS to watch this. A friend of mine with insomnia saw it the other night when watcher her TIVO and she sent ti to me. My son absolutely has this condition as a symptom of his pandas. The doctors we know have said its a form of OCD (which never fit 100%...I didn't really care because to me its all just symptoms of pandas...but watching this video it is soooo spot on with virtually everything!

 

When you here the recording they made of this girls rage - I'm like - oh I've heard that before!

 

I wonder how many of these people - have pandas as an underlying cause. Because I can say - with 100 percent certainy - that this was DS's first symptom. A couple weeks later all the other symptoms piled on, and the fact that he had so many led us to pandas (esspecially the tics)...and I also know that after IVIG - this symptom almost went away (but it is the last one hanging on - and he still struggles with it - but we are still clearing infections, so he's much much better).

 

http://abcnews.go.com/2020/video/taylor-misophonia-medical-mystery-teen-sound-rage-2020-16383729

 

 

Who else's pandas kid has this disorder (symptom) Please chime in - I'm going to be contacting the doctor as well as the pandas researchers to let them know - there is a connection. I know there is for my son, and I think there may be more kids out there that have this because of pandas.

 

The label - is just like all the others - "here is a disorder that we will give a name to, but we don't know what causes it, or how to cure it". Just like the long list of things my son had at the worst times of his exacerbations - tourettes, eurenisis, insomnia, anxiety, ADD, dysgraphia, obsessions....

 

Maybe some of these people can be helped.

 

I just read the post and realized a typo in the title - it is spelled - misophonia

Edited May 24, 2012 by norcalmom

[melanie]

Any one that knows danny knows this has been my question .I have seen drs begging for this answer and no one ever knows the answer .I have made an appointment to see an audiologist that specializes in this.We will see where this takes me.And how much this will cost to treat .Ill keep you posted as always

 

melanie

[cobbiemommy]

Ryan was horribly sensitive to loud noise, even people talking loudly. He is approximately 70% better after the first IVIg (two years ago) and holding on to that gain. He even asks me to turn up the radio when it is just us if a good song comes on!

 

Hoping for 100% resolution with the next few IVIgs.

 

Cobbie

[Ozimum]

I have been assuming the fairly mild (compared to video) manifestation in DS was part of the sensory stuff he experienced (noise generally could set him off eg a child's play) and I put it down to being co-morbid with the Aspergers he was diagnosed with shortly after this PANDAS #*%%! broke loose. The PANDAS diagnosis came after. We haven't seen the noise stuff for a while now as DS has been doing well. Food for thought! Thanks for posting this.