First post newbie here

[Autisticfantastic]

Hello all, my son is 15 and amongst many other issues, he's currently haven g many lung function tests via Sheffield hospital. His latest tests showed his function at 67% which was the same when yesterday age 9, they have said it was mixed obstructive which I haven't a clue about? They're testing him for marfans too as he has many traits! He's 6ft 4in 9st 5lb , has pectus, autism, epilepsy, hypermobile joints syndrome, dyspraxia, Irlen syndrome, and more, has anyone any useful information as this is all new information .

[Hacienda]

Just to say Welcome to the Forum, I'm sure someone will give you some answers. I only know about COPD. Best wishes to you Hun. xxxx

[hypercat54]

Hi I can't help either I'm afraid but will say that he sounds seriously underweight and I wonder if he is being prescribed any of the build up drinks. They are packed with all the vitamins and are high in calories. x

[Autisticfantastic in reply to hypercat54]

Yes he is very thin but partly I think because he has low muscle tone so doesn't have much muscle, they've not offered any supplements maybe I should get some ?

[sassy59]

Welcome to you and hoping you get some answers soon. Wishing you well. Xxxx

[HungryHufflepuff]

I don't have any answers but just wanted to say hello and welcome.

[Hidden]

Welcome to the forums. Can I just ask if they’ve screened him for cystic fibrosis? I’d imagine they almost certainly have, but it’s worth double checking as being 15 means he wouldn’t have been automatically screened via the Guthrie test at birth. I know it’s no consolation, but as well as having cf with a fairly severe disease profile and a couple of issues that go with that, my ‘littleun’ (aged 11) has HFASD, ADHD, sensory processing disorder, pronounced hypermobility that is most like EDS, congenital tracheobronchomalacia (floppy airways that then complicate her cf and that supports the EDS suspicion), congenital but relatively mild hearing loss, a visual impairment, and she has either mast cell activation disorder or mastocytosis, we’re going through the diagnostic process for that side of things now. In a weird way it’s almost ‘nice’ to come across another parent with a child with similar levels of complexity even if the diagnoses are different overall - I meet plenty of parents of children with a respiratory issue, but no one else understands the impact of ALN and other diagnoses.

Aside from cf, non-cf bronchiectasis is a possibility, and there are a few other lung conditions out there that can effect children. With these infections he’s having, have they managed to isolate any specific bacteria? Is the 67% his fev1? It would seem to be ‘good’ news if his numbers are the same as they were six years ago, but formal spitometry is something that has to be learnt to some extent; be aware that you can’t get false highs, but you can get false lows due to technique, so depending on your son’s understanding and functioning and the number of times he’s done lung function tests before, that 67 may not actually be accurate.

Whatever the ultimate outcome, I hope you get to grips with whatever’s going on soon and he starts feeling better.

[Izb1]

Hi and welcome to the site, cant offer any advice but wanted to say welcome. I do hope you get some answers to help you understand. It looks like both you and CharlieG have alot to cope with. Wish you both well Irene x

[pete45]

I have two grandchildren, boys who suffer from PCD (Primary ciliary dyskinesia). It is rare lung disease that was diagnosed at early Age. Ask about it as well although if it is your GP they would not be familiar with it at all.

[Dedalus]

Hello and welcome from me too (sorry I can't help re your boy's condition) x