Re: new member new diagnosis--Tony

[Guest guest]



I agree totally with this. Does your son also have problems with sinus and ears? If so there's another genetic situation that is different in underlying cause that cystic fibrosis but treated similarly and many of us had bronchiectasis in our young years. If you want to look it up go to PCD Foundation for further information.

I know it must be hard to be the parent but information is power and getting to the most sophisticated medical center (often in a major research university in the US) is critical.

Good luck and keep us posted. Judy in MN-USA

Re: new member new diagnosis

Hi Tony! You don't mention where you live (country). We're an international list and things vary by country.

If you're in the US, I'd ask for a referral to a pulmonologist at a major med center. This is a child and you need to get the best possible advice about his situation. Most private practice pulmonologists have never seen a child with bronchiectasis, except those with cystic fibrosis. Has he been tested for this to rule it out? That is vital to do! If you're anywhere near Mayo's I'd ask for a referral there or to National Jewish in Denver.

This is not the time for "natural" treatments - you need the big guns.

Good luck!Sent from my iPad

Suzanne R Brown

Hi all

My name is Tory and my 15 y.o. son just got diagnosed with Bronchiectasis. He has had asthma and has been sick on and off for the last 3 years with pneumonia's & chronic bronchitis. After the 3rd bronchoscopy and diagnosis of Staph Aureus in his lungs - he had a CT Scan that showed mild to moderate bilateral bronchiectasis. So - the pulmonologist is trying to kill the staph - with a heavy duty 4 week regimen of different rotating antibiotics - so that the staph doesnt become resistant - which likely has been in his lungs for some time (possibly going on a year) . He has told us that the cause of the bronchiectasis is likely the staph infection. He also just was ordered the "vest" this past week and my son has begun using it.

So I am now in the midst of trying to deal with this and find hope that this condition isnt a "sentence". I need to give my son hope and educate him about the what can help. He is a very smart kid and has been following everything that they tell him to do - but he still has so much mucous and congestion. He is on 7 different prescription medications and still no relief. I am looking for some homepathic and natural suggestions if anyone out there has ideas. I need to know more about this disease other than what the internet's medline and NIH tell me. I need to know what it is like to live with this disease. What to avoid - what to do to help - what experience in life he can expect. Any suggestions and thoughts are appreciated.