Interstitial Lung Disease- anyone have experience of this

[hairymcleary]

My beautiful 18 m/o DS is currently being treated as an outpatient for possible Interstitial Lung Disease. He has not yet been diagnosed with anything, however has had x-ray, CT scan and broncholoscopy (excuse spelling).
He has a persistent dry cough, flared ribs and some abnormalities on the CT scan, but is generally a happy wee chap and appears normal in every other way.
Just wondering if anyone has any experience of this... all the stuff I have found by googling is extremely scary and I am beyond worried.
TIA

Hi hairymcleary, I have no experience of this situation, but I do have a dd who was recently diagnosed with a condition so know how scary it can be. All i could recommend is trying to find a help group, maybe the hospital where your ds is being treated could suggest one or you will probably find one on google.

They really have good advice and alot of the time its parents whos children have these conditions that answer the calls, it really can help ease your anxiety. Hope all goes well for your ds, I'll have a squizz tonight see if anything pops up. Nj x

Hey me again! You probably already have this info but just incase, I have had a quick squizz and found a website with a childrens section with the conditions you described and also a help line.

British Lung Foundation help line on 08458 50 50 20

www.lunguk.org

Hope it helps, Nj

Stop googling! If I'd read all the awful things on the internet about my eldest ds's condition (congenital lobar emphysema) I think I would have gone gray overnight.

Poor you, 18months is such an active physical age, it must have been difficult for both of you during the tests so far. You do have my sympathy.

My son had a lobectomy at 5months and is a gorgeous great nearly 12yo now with very little ongoing affect. Other children with the same condition as his had different management of their symptoms so you really can't guess what the future holds for your little one based on how others have been treated. Medical knowledge moves on at pace and treatments change all the time.

Now, most importantly, do you have support? What is your family situation and have you been given any idea of support groups locally? NormaJean is right, you need people when this sort of stuff is going on but sometimes friends just don't know what to say.

Sorry HairyMc, meant to say that address is for the British Lung foundationm same as the help line.

thanks both for your replies... I'll have a look at the British Lung Foundation website.
I hadn't thought to ask the doctor about support groups, but that's a brilliant idea.
I don't really have a huge- amount of support at the moment, we have just moved from the UK to Australia and don't know many people yet. DH's father is here and he is great for keeping me company on the car journey down to the hospital, however he doesn't really know how serious this could potentially be, as he as just lost his wife to cancer, so we kept details to a bare minimum as I think the news would have been to much for him recently.
Similarly, DH is adopting a head in the sand approach. He came down to the hospital for the broncholoscopy, but as the hosp is a fair drive away, he needs to take an entire day off work to come down, so he hasn't been to any appointments since.

Wow, just moved, and so far away. Dont be scared to ask for advice from your docs, n try a mother and toddelers if ds is up to it, you need a little girl support! Good Luck, I,m here if you need a chat, and so is every other MNetter.

DH is obviously a little shocked and hoping it will all get better before he has to really deal with it. try to speak with him, let him see you are finding it hard and are scared, hes there for you, sometimes we just have to ask, or hit them over the head with a plank of wood. they're not that good at reading signals are they! bloody fools.

hold tight Hairymc, its the beginning thats the crazy bit (hug) x