Narrowing of the trachea

[swa]

Our 5year old girl has been mistreated for asthma for 4years.After a lungfunction test and a CT scan they discoverred that she has narrowing of the trachea(windppipe) aswell as bronchial wall thickening.No surgery is adviced because of the % narrowing that is to severe and surgery will then be lifethreatening.Are there any moms out there with a similar case.The dr's doesnt have answers etc. We are scared.

[maltesers]

hello SWa. My ds is 8 and at 13 months he was diagnosed with severe subglottic stenosis. A tracheotomy was performed after 5 days of intubation (a breathing tube in trachea) and then in hospital for 5 weeks so we had time to learn how to care for him with a 'TRACHY" tube in his airway, before we all came home. He was then operated on at Gt Ormond Street after a long waiting list.( 7 months later). He underwent Tracheal Reconstruction. He made a good recovery and had a good result. He is now fit and well.
So sorry to hear the doctors think nothing can be done....surely ?? Are you being refered to G.O.S. ?? Can you push for it ??

Truly my heart goes out to you cos i know how you must be feeling...scared, nervous, tearful and very very upset.

Where do you live.??
I live in Romsey near Southampton.
Is the thickening increasing in her bronchial wall ??
I think its good to get a 2nd , 3rd opinion, especially if your own doctors say nothing can be done.
Please talk and keep me posted.

[maltesers]

hello SWa. My ds is 8 and at 13 months he was diagnosed with severe subglottic stenosis. A tracheotomy was performed after 5 days of intubation (a breathing tube in trachea) and then in hospital for 5 weeks so we had time to learn how to care for him with a 'TRACHY" tube in his airway, before we all came home. He was then operated on at Gt Ormond Street after a long waiting list.( 7 months later). He underwent Tracheal Reconstruction. He made a good recovery and had a good result. He is now fit and well.
So sorry to hear the doctors think nothing can be done....surely ?? Are you being refered to G.O.S. ?? Can you push for it ??

Truly my heart goes out to you cos i know how you must be feeling...scared, nervous, tearful and very very upset.

Where do you live.??
I live in Romsey near Southampton.
Is the thickening increasing in her bronchial wall ??
I think its good to get a 2nd , 3rd opinion, especially if your own doctors say nothing can be done.
Please talk and keep me posted.

[swa]

Hi Maltesers
Thanks for replying !!
We live in South-Africa.I learned on the internet about the Gr Orm Hosp in London.The reason that the dr's doesnt want to operate is that she is already 5 and doing okey.But I'm worried and confused thats why I want other opinions/share with others to learn more.I am busy trying to find out if the thickening will get worse or stay the same.But to get answers is another story !And we have to put her through all the trauma of new dr's/tests etc.Its all I can think about,everytime she breaths it
hurts me.
Have a good day,thanks again.
Cecilia (swa)

[maltesers]

You probably want to get to the bottom of all the problem and see if something can be done,, especially if she is struggling when running about ,, does she get cyanosed around her lips and nose when she runs about ??
You are a long way from Britain.. are you South African ?? I know its seems a stupid question but you could be a number of Nationalities living out there !
I hope your dd is ok and hopefully if she has been ik up till now then fingers crossed. Where is you nearest hospital ??

[swa]

Hi there
Yes we are South-African.We live near Johannesburg.We go to Sunninghill hospital near Sandton.About 17km from where we are.There are hospitals closer but we prefer that one.

[maltesers]

I wish you lots of luck and hope a solution is found or she is ok. Keep me posted.

[swa]

Hi there
Does anyone know more about bronchial wall thickenig ? Can it increase etc?

[maltesers]

I dont know about that SWA... have you looked it up on Google/ Internet ??