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Dystonia affecting vocal cords/breathing

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Rainbow08
Rainbow08

Hi, my daughter has recently been diagnosed with dystonia which is affecting her vocal cords. She is 8 months old (4 months corrected).

She is currently in hospital and has been since birth (long backstory).

This issue with her vocal cords is what is keeping her in hospital. She has suffered from severe apneas causing her oxygen levels to drop dangerously low since birth. She often needs stimulation and/or bag and mask to wake her up from these apneas. This happens multiple times a day/night.

We have been told these apneas are due to her vocal cords clamping shut and obstructing her airway.

We have tried some different medications to control the dystonia but nothing seems to be making a huge difference at the moment. There aren't many options left.

My husband and I have done so much research into this condition but cannot seem to find anyone who has been through something similar. Most of the information we can find relates to vocal cord dystonia affecting speech not breathing.

I was wondering if anyone has experienced a problem with dystonia affecting vocal cords/breathing?

Thanks

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