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Dystonia affecting vocal cords/breathing
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LizziB
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LizziB
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Last activity on 02/04/2024 at 00:46
Joined in 2022
280 comments posted | 1 in the Dystonia Forum
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Hi @Rainbow08
How are you doing today?
I am so sorry to hear about your baby. This must be such a scary time for you. I send you all my prayers for your family. I will tag a few member to see if they have heard or experienced this type of breathing dystonia.
@maltese @ShirleyBrooks @Strongles @jjj160 @charlesdickens99 @Louise71 @Cath10 @Dippy40 @SunshineW @Sandokai @Widjaja @lynndoconnor @Tillybilly @Creamware2 @cinar73 @GillWil @joanne4142 @danimaddonnigmailcom @AngelaHackworthy @Zozime @Woolydee @frannie1956 @Luciamasuccio @Walletr @Mand_0 @Gemma2803 @Mazz73 @meghol @Audrey# @KATHRYNM
Has anyone heard of vocal cord dystonia? Do you have any experience with this?
Any information will help @Rainbow08 at this time.
Take care,
Lizzi from the Carenity team
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Rainbow08
Rainbow08
Last activity on 16/10/2024 at 18:50
Joined in 2023
@LizziB thank you
Any thoughts or experiences on this would be helpful.
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Rainbow08
Rainbow08
Last activity on 16/10/2024 at 18:50
Joined in 2023
2 comments posted | 2 in the Dystonia Forum
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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