Author Topic: Primary Cilia Dyskenesia  (Read 3855 times)

Offline WellTellMommy

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Primary Cilia Dyskenesia
« on: February 15, 2010, 04:18:16 PM »
A friend's child was just diagnosed with Primary Cilia Dyskenesia, they are told he will have to live on antibiotics the rest of his life can you all help me research this out & come up with anything that can be done.
DD 5yo---Mom, I think we should take a camera with us when we go to Heaven, it'll be so beautiful up there.

Sherri

Offline WellTellMommy

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Re: Primary Cilia Dyskenesia
« Reply #1 on: February 15, 2010, 05:12:34 PM »
Primary Ciliary Dyskinesia (PCD) is an inherited, relatively rare condition associated with an abnormality of cilia, which may affect the lungs, sinuses and ears. If left untreated can lead to a form of lung damage know as bronchiectasis. The mainstay of treatment is chest physiotherapy and targeted antibiotics which enables individuals to lead normal lives. Any problems resulting from PCD vary from person to person.
#Chronic sinopulmonary disease
*Chronic cough and sputum production
*Chronic wheeze and air trapping
*Obstructive lung disease on lung function tests 
*Persistent colonization with pathogens commonly found in individuals with PCD
*Chest radiograph with chronic abnormalities
*Sinus radiograph with chronic abnormalities
*Chronic otitis media
*Neonatal respiratory distress
*Chronic nasal congestion dating from the newborn period
Expertise in evaluation of ciliary ultrastructure is needed to distinguish primary (genetic) defects from acquired defects that result from exposure to different environmental and infectious agents.
PCD is inherited in an autosomal recessive manner. The parents of an affected individual are obligate heterozygotes and therefore carry one mutant allele. Heterozygotes (carriers) are asymptomatic. At conception, each sib of an affected individual has a 25% chance of being affected, a 50% chance of being an asymptomatic carrier, and a 25% chance of being unaffected and not a carrier. Carrier testing for at-risk relatives and prenatal testing for pregnancies at increased risk are possible if the disease-causing mutations in the family are known.
http://www.lungusa.org/lung-disease/primary-ciliary-dyskinesia/understanding-primary-ciliary.html
PCD is a genetically heterogeneous disorder affecting motile cilia[1] which are made up of approximately 250 proteins.[2] Around 90%[3] of individuals with PCD have ultrastructural defects affecting protein(s) in the outer and/or inner dynein arms which give cilia their motility, with roughly 38%[3] of these defects caused by mutations on two genes, DNAI1 and DNAH5, both of which code for proteins found in the ciliary outer dynein arm.
http://www.pcdfoundation.org/aboutpcd/whatispcd.htm
DD 5yo---Mom, I think we should take a camera with us when we go to Heaven, it'll be so beautiful up there.

Sherri

Offline WellTellMommy

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Re: Primary Cilia Dyskenesia
« Reply #2 on: February 15, 2010, 05:40:03 PM »
OK, From this information I'm going to highlight some of the above info, and comment based on things learned elsewhere on WTM or Books, about natural health & nutrition.
*Chronic nasal congestion dating from the newborn period
This indicates an inflammatory diseases so what is causing this inflammation?
Improper Flora of the gut LGS, & or ENT/ Respiratory?
Improper Digestion?
Food intolerance's?
*targeted antibiotics which enables individuals to lead normal lives.
What natural antibiotics could be used, & how could you replenish the proper flora to maintain & build back health?
*Persistent colonization with pathogens commonly found in individuals with PCD
What about a Pathogenic cleanse?
This also indicates that good flora are severely lacking
*each sib of an affected individual has a 25% chance of being affected,
The flora/ pathogenic state of the entire family seems to be affected, (which is typical of most Illnesses).
*individuals with PCD have ultrastructural defects affecting protein(s) in the outer and/or inner dynein arms which give cilia their motility
This reminds me of the example giving in the Book Gut and Psychology Syndrome of the Villi / enterocyte on Pgs 19-20.
And the examples referring to the ENT area on Pgs 213-223.
It is my opinion that a diet such as GAPS would be crucial to aiding the healing of a disease as serious as this. 



DD 5yo---Mom, I think we should take a camera with us when we go to Heaven, it'll be so beautiful up there.

Sherri

Offline mykidsmom

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Re: Primary Cilia Dyskenesia
« Reply #3 on: February 15, 2010, 05:44:27 PM »
I would think any natural broad spectrum antibiotic for maintenance.  Maybe garlic, GSE, or ????  I'm wondering about berbine for gut integrity (keeping bacteria in check) also.  Obviously a strong probiotic like VSL3 or culterelle.  For ongoing inflammation I would say powdered quercetin for sure.  1/2 tsp. daily until age 12.  Then 1 tsp. daily thereafter. 

Sorry that's not much help, just a couple of guesses. 

patti
For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.