PANDAS and language

[Hrosenkrantz]

Hi -- my DC has a PANDAS dx, and has had a language disorder dx (mixed expressive receptive language disorder) for years. After a recent PANDAS outbreak, he has essentially stopped talking -- or really just whispering. Anybody have any thoughts on how to stimulate language after PANDAS? Speech therapist ask if the PANDAS has had an impact on his oral motor skills since speech production is neurologically based. The antibiotics/steroid treatment is slowly minimizing the ocd outbreaks, but language hasn't come back.

[Dedee]

How long have you been using antibiotics? Depending on what the infectious trigger is you may consider changing antibiotics to see if you get a better response with something different. If you aren't seeing a PANDAS specialist I would suggest making an appointment right away. You may need to consider IVIG if things don't improve. Best of luck.

 

Dedee

[4Nikki]

I'm pretty sure my DD15 has selective mutism. I'm not so sure if PANDAS/PANS has contributed to it or not, but with the anxieties would seem easy to make a connection. She could speak at home but would not utter a single word except for a few select people outside the home. And this is with years of contact. We did not recognize she had this condition until about 11 months ago, because of her global delay. Like PANDAS/PANS it is a problem that most of the doctors and schools are not even aware of in California. You can search youtube there are a few good documentaries.

[Kathy4Him]

4Nikki, the same thing has occurred with our son. In the beginning, June 2008, he spoke normally but as time went on we noticed changes. he would send me text from college that would say "made" which meant he arrived at campus words that made no sense. Then in Nov 2009, he just stopped speaking all together. Then he would say a few words to a few people but usually they made no sense. Since Nov 1 2012, he has begun speaking again, a sentence here and ther, 5 times he has spoken for an hour or more. hard to get words out and some make no sense but he is trying.

[WorriedDADNMOM]

I would add that our dd....worst of our 3 with pandas/pans stopped talking during the height of our road to diagnosis. Two times stopped talking for 2.5hrs once then became extremely hyper then started talking in high pitched squeeky voice and another time for about an hour. It was truely scary after the tics and other neuro psych stuff.

 

Abx and DAN protocol have been tremendous and it has not been back since. Still some underlying issues where CBT might help. But all in all we are in a good place.

[Mayzoo]

My daughter became symptomatic in Sept. 2011. She stopped talking entirely for 3 months. When began to speak again, she only whispered. She was diagnosed and we began abx treatment in Jan 2012. We finally got her strep infection (rapid positives) under control at the end of Februrary. We continued zithromax. In July, for one month, she spoke normally. Then regressed with an infection back into a whisper, with reduced communication, and has continued that since. She tells us it hurts her ears to use her normal voice, and I can believe that. She now runs out of the bathroom when she flushes the potty saying it is too loud.

 

We saw a specialist for pandas a few weeks ago and he said he has a handful of patience who whisper and most say it hurts their ears to talk louder. He also said he has one patient who will only speak in a cartoon voice. I am grateful I do not live with elmer fudd or daffy duck . I assume, hope, and pray that when we get her back on track she will begin to use her normal voice again and no longer be in pain from "normal" sounds.

 

Her vocal tic is loud (out of her control), but her words are whispered (despite my attempts to bribe a "big girl voice" out of her). We had her vocal cords checked during her T & A and they are fine. It is a self defensive choice is the best I can discern to minimize the pain she feels due to loudness around her.

[lfran]

There is a sound based therapy called the listening program that you can buy for about $300 that helped my ds with similar too-loud sounds. It is a bunch I special CDs that exercise the ear. We initially got it from our very large HMO so I imagine it has medical okayness.