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Primary ciliary dyskinesia

 
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amother




OP
 

Post  Thu, Jan 23 2020, 1:43 pm
Dr suggested we rule this out on my child. Anyone experienced with this and what symptoms did it present with?
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amother




OP
 

Post  Sat, Jan 25 2020, 11:41 pm
Bump
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amother




Seashell
 

Post  Sun, Jan 26 2020, 2:12 am
My child had asthmatic symptoms. The dr suggested different possibilities what it might be. He did mention ciliary dyskinesia as 1. He said there's only 1 place in 1 of the Carolinas where they could do accurate testing for that. And there's no cure, just therapy, wearing THE VEST, which does the job for the cilia. BH my child outgrew the symptoms & we didn't end up testing for ciliary dyskinesia. Good luck.
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amother




OP
 

Post  Sun, Jan 26 2020, 2:16 am
amother [ Seashell ] wrote:
My child had asthmatic symptoms. The dr suggested different possibilities what it might be. He did mention ciliary dyskinesia as 1. He said there's only 1 place in 1 of the Carolinas where they could do accurate testing for that. And there's no cure, just therapy, wearing THE VEST, which does the job for the cilia. BH my child outgrew the symptoms & we didn't end up testing for ciliary dyskinesia. Good luck.

Thanks. We’re already doing the vest. What kind of dr tests for this in Carolina? We saw a pulmonologist who is sending us to immunology for testing a whole bunch of things- including this...
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amother




Seashell
 

Post  Sun, Jan 26 2020, 2:27 am
amother [ OP ] wrote:
Thanks. We’re already doing the vest. What kind of dr tests for this in Carolina? We saw a pulmonologist who is sending us to immunology for testing a whole bunch of things- including this...

I'm sorry I don't know. I'm sure your pulmonologist would know.
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amother




Emerald
 

Post  Sun, Jan 26 2020, 2:35 am
My brother has it.

It affects the cillia throughout the body. His symptoms are the following:

No sense of smell (the cillia in his nasal passages don't work properly so he can't smell)

Buildup of fluid in the ears ( cillia in the ears can't drain the fluid well) he had multiple surgeries to insert tubes to drain the fluid and sometimes he can't hear well because of the buildup.

Buildup of mucus in his lungs ( he has a vest to shake the mucus free, uses nebulizers and inhalers, and is often hospitalized for decreased lung function.)

Unfortunately it also affects fertility since the sperm can't swim and the cillia don't move the egg in the fallopian tube.
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amother




Emerald
 

Post  Sun, Jan 26 2020, 2:39 am
amother [ OP ] wrote:
Thanks. We’re already doing the vest. What kind of dr tests for this in Carolina? We saw a pulmonologist who is sending us to immunology for testing a whole bunch of things- including this...


Not sure why you need to go to the Carolinas. You can test anywhere.
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amother




OP
 

Post  Sun, Jan 26 2020, 2:42 am
amother [ Emerald ] wrote:
Not sure why you need to go to the Carolinas. You can test anywhere.

Thanks for sharing emerald. Seashell wrote her Dr said there was only one Dr doing accurate testing for this in Carolina, so that’s why I asked.
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amother




Emerald
 

Post  Sun, Jan 26 2020, 2:48 am
amother [ OP ] wrote:
Thanks for sharing emerald. Seashell wrote her Dr said there was only one Dr doing accurate testing for this in Carolina, so that’s why I asked.


Well it's pretty rare but I think he was diagnosed in a NY hospital.
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Geulanow




 
 
 
 

Post  Sun, Jan 26 2020, 3:54 am
This has a lot of information, as well as places doing testing and research. https://rarediseases.org/rare-.....esia/
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amother




Seashell
 

Post  Sun, Jan 26 2020, 9:37 am
amother [ Emerald ] wrote:
Not sure why you need to go to the Carolinas. You can test anywhere.

They could do the testing in NY...
However, what I was trying to say is that in the Carolinas they do the most accurate testing- more accurate than in NY.
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happyone




 
 
 
 

Post  Sun, Jan 26 2020, 10:23 am
it's easily tested with a ciliary biopsy in nostril or bronchoscospy. It manifests similar to cystic fibrosis. An ENT or pulmonologist does the testing . today there is also genetic testing available. Hatzlocha.
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