More invasive tests recommended - what would you do?

[strawberrycornetto]

DS had been having a number of tests done because of repeat chest infections. He had a ct scan last week and as a result the consultant has recommended we do two tests. One involves brushing the inside of his nose to see if the hairs are working. The other is a broncospy which is done under a general anaesthetic. He recommended this course of action but said we could wait and see what happens.

My inclination is to do the tests. Although I obviously don't want DS to be put through unnecessary procedures, and I appreciate there is a chance we will find nothing, I feel he is the consultant and we should follow his advice. Given his history I do not really see the point in waiting for him to have another infection before we proceed as that causes him suffering too and could end up permanently damaging his lungs. Dh disagrees.

Any thoughts wise mumsnetters?

[strawberrycornetto]

Thanks Pixie. That is my view too. When he is ill it seems obvious but when he's well between infections it's hard to reconcile somehow so I do understand where DH is coming from. We've only just done one general anaesthetic and it was horrible so I really wish I could protect him from another one, but if that's what we are being advised I think we should follow it. I wish in a way he would give a stronger steer so I didn't feel we have to decide.

[nightcat]

Bronchscopy for chest infections sound a bit ott?? And it's a knock out job for children afaik. I had one last year for accidental choking on food. They will be wanting to take a biopsy of lung tissue no doubt, which sounds a bit extreme for chest infections?

The other test sounds sensible.

U could try asking a secod oppinion or simply try and work on improving his immunity.

[nightcat]

Actually, do you have a paed you could talk to informally on this?

[strawberrycornetto]

He has had pneumonia and bronchiolitis as well as chest infections several times and in all has had antibiotics 13 times in just over a year. He has just had a ct scan which showed up abnormalities which is why the consultant has recommended the bronchoscopy. You are right it will be under general anaesthetic. The other test can be done at the same time.

Have spoken to DH tonight and he thinks we should follow the consultant's advice. He is really good, he's o. The respiratory team at Great Ormond Street and we trust his advice. Am though, we just got a clear result on cystic fibrosis so I was really hoping that the ct scan would be clear. I just want DS to be well .

[zonedout]

strawberrycornetto, no advise but wanted to say that i am in a very similar boat. in fact, have just returned from emergency doctor with ds2 and his umpteenth course of augmentin for yet another chest infection. he spent the whole of christmas week in hospital with rsv, bronchiolitis and pneumonia and has been admitted several other times in need of nebs. he is under a lung specialist at the brompton and we also just got the all clear on thursday for cf after a day of tests there (followed by a night of awful throwing up, another bug i guess). waiting for the results of immune function tests now.

am sure i am not being very coherent as on my way up to bed, totally shattered but i wonder if you might like to do/receive some handholding while we go through similar things. dh is away a huge amount and it can feel a little lonely having a child who is almost constantly sick and a fairly neglected 4 year old ds1 to look after too

[chegirlsgotheartburn]

I went through this recently. DS had to have a MRI under a GA.

He has LD and finds hospitals stressful due to my DD being so ill for so long.

I really struggled with whether he should have it done. They were checking for possibly signs of brain damage to explain his LDs and another condition he has.

It was not urgent and its unlikely they will see anything abnormal and very unlikely there will be anything treatable.

I knew i would do it though. I would always wonder if I had done the right thing otherwise.

He was fine and so was I. AND its out of the way so I dont need to think about it anymore.

[strawberrycornetto]

Hi Zonedout. Definitely up for some handholding, it sounds like we are in a similar place. How old is your DS2? Mine is just about to turn two and I have a little girl who is 5, so I definietly know what you mean about neglecting the older child who is well. My husband is also away alot and it has been very difficult.

I am glad to hear you got a negative result back for CF. We did too finally, after 4 failed sweat tests. The relief is huge but we are starting to get to the point where we suspect we are never going to find a cause. DS is ok at the moment, but then I remind myself we give him various medicines 7 times a day so we don't really know how he would be without them. Its horribly stressful and very lonely because with no diagnosis, no one really understands how you feel do they. I think a lot of people kind of equate a chest infection to a bad cold but when your LO cannot breathe it is horrific.

When do you get back your immunity test results? The Brompton is a fantastic place for anything chest related so at least, like us, you are in the right hands. Had we gone for the nasal brushing without the bronchoscopy we would have been going there, but as it is we will be back at GOSH again. Let me know how you get on.