Respiratory Dystonia 13 yo

Four months ago my 13 yo daughter developed loud stridor upon inhalation.  Her breathing is very loud.  She must be excluded from class during quiet times, causing her extreme embarrassment. She has been seen several doctors who say this is psychogenic as IT STOPS WHEN SHE IS ASLEEP.  Before this began, she was a straight A student, played the clarinet in honor band, enjoyed snow boarding and volleyball.  She can no longer participate in these activities.  I know the mental pain she is experiencing and am certain this is not purely psychogenic.  In Jan. she was diagnosed with respiratory dystonia and paradoxical vocal cord dysfunction by a laryngologist at UCSF. He has recommended botox injections.  Yesterday she saw a Stanford pediatric neurologist.  He seemed to be back on the psychogenic tract, saying the absence of stridor during sleep was telling.  I am totally confused. Isn't the absence of symptoms during sleep typical in dystonia?
I can find nothing on the internet regarding respiratory dystonia in a child.  She has no generalized dystonia symptoms.  Neurologist now is saying this is a tic.  I can find nothing regarding this kind of tic.  He has recommended clonodine patches. The laryngologist wants to do a "mapping". This is an invasive procedure that sounds scary and I hesitate to OK it w/o a clear diagnosis.
Molly also has had stomach problems all this time.  She says her stomach "jumps" and she wakes up in the night with mouth full of "acidy stuff".  Upper GI was normal, MRI, normal.
What should we do?  Thanks, Kim
    

[CCF-Neuro-M.D.-CS]

I cannot make a clinical diagnosis over the internet. With the information you provide its not clear what is the cause of her stridor.

If the ENT doctors did flexible laryngoscopy to directly visualize the vocal cords they should have been able to detect an abnormality such as vocal cord paralysis or check for psychogenic vocal cord issues.

Laryngeal dystonia usually only occurs during speech, it seems like in your daughter it is present during wakefulness the whole time?
A fixed obstruction of the trachea causing stridor will cause stridor during the night also (and maybe this is why they are suspecting a psychogenic disorder), but not necessarily a functional obstruction such as dystonia or paradoxical vocal cord dysfunction

Paradoxical vocal cord dysfunction is a known entity within the specialty of ENT, and would not be neurologically related unless it was 'primary' (it had been there all the time until now). This is diagnosed by observing the vocal cords by scope while symptomatic and in between episodes.

A tic causing continuous stridor I have not heard of.
If she had GI reflux into a pharyngeal pouch she could be having recurrent reflux/airway obstruction - this might be something to look into. Psychogenic stridor is still a possibility, but the other issues need to be investigated first.
If you have not gotten an opinion from a movement disorder neurologist then this would help sort the dystonia issue out.
Good luck

[ozark]

i would suggest a ph probe test to check for reflux...ugi cant always tell if you have reflux but a ph probe would be more difinitive.........this could possibly all be related to relux..good luck

[kmalavey]

Thanks for your response.
Yes, her stridor is present all the time, except when she holds her breath.  She says she holds her breath when she needs to hear things as she hears like she is "listening and eating potato chips".  
The Laryngologist did the flexible scope and said she "definitely could not be doing this intentionally."
Yesterday we saw a movement disorder neurologist.  He said it was not a tick but certainly was unusual.  He started her on Artane but said the dosage that would be needed would probably be so high that it would effect the quality of life and suggested botox may be better.
I will ask the pediatrician about the ph probe test.
Thanks Again, Kim

[ozark]

has she play the clarinet for a long time...i'm just wondering if she over stretched a muscle and has some sort of tracheal or laryngeal malacia.....its a long stretch but maybe something....i know children can have tracheo/laryngeal malacia from weak muscles in that area when theyre born and they sound very stridorous in inspiration almost a crowing sound....ask her dr.......

[SFBILL]

Sorry you have to go through this - you mentioned that her stridor stops when shee is asleep.  Have you had a sleep study done to see how your daughter's respiratory system functions when she is sleeping?