Re: new member new diagnosis

[Guest guest]

Hi Tory

and welcome. Please come over to our bronciectasis1 group where you will find

lively chat and lots of useful information. We are all migrating to the new 1

group as we have management issues with this old one. There may be posts of

interest to you in this old archive if you have a look through.

I have sent you an invitation to the new group. Just look out for it in your

mail box and follow the links to sign up.

BW

LizJ

>

>    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.

>

[Guest guest]

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 iPadSuzanne 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.

[Guest guest]

Welcome Tory,

You've reached a wonderful group to give you ideas to help care for your son and take information to his doctors. Docs aren't always receptive to what we share but it usually sparks some changes that are beneficial. Glad your son is using the Vest. Has a doc suggested the Acapella or Flutter Valve or something similar? Good devices to also shake out the gunk.

To: "bronchiectasis " <bronchiectasis > Sent: Saturday, November 26, 2011 6:49 AMSubject: new member new diagnosis

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.

[Guest guest]

Welcome Tory,

I am so very sorry to hear of your son's diagnosis. What an unfair thing for a young person to have to deal with in addition to the stresses of growing up. Bronchiectasis is very different in each person. It can be so mild that it just means a person's colds last longer and coughs go on for a long time. I have a childhood girlfriend with this. Even in this group it varies hugely. Our fearless leader Joy has had the condition all her life and is probably best able to give help and hope. It is just wonderful your son's physician prescribed the vest. It is a godsend in time saving and efficacy for keeping the lungs clear. In that respect, you are off to a good start with treatment.

Wishing your and your boy the best,

Kay

To: bronchiectasis Sent: Saturday, November 26, 2011 6:49:16 AMSubject: new member new diagnosis

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.

[Guest guest]

Hi,

Welcome to the group. It has a wealth of information to give members. It also makes you feel better to talk with others who are having similiar problems.

Cindi W.

To: "bronchiectasis " <bronchiectasis >Sent: Sat, November 26, 2011 6:49:16 AMSubject: new member new diagnosis

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.