First (paediatric) consultation what to expect?

[Lau85]

Hi, my little boy has been referred to the periodic fever clinic in Bristol to see a specialist about the possibility of a rare form of Vasculitis.

We have had many consultations before but not this. What can we expect? I'm worried they will fob us off if he is having a 'good' few days, no rash and is generally well!

Samuel's Haematologist is referring us, so his history will show otherwise but sometimes unless Doctor's see it straight away, they kind of ignore it.

What sort of questions / tests can we expect from the first visit?

He has had his complement tested but it was an insufficient sample so we need it retested, he also had the ANCA test but that takes a while to come back.

Thanks in advance,

Laura.

[mg15]

Go along to the apt., with a positive attitude. It would be great to hear that your son does not have V. That is the best outcome of the visit for you. The consultant will listen to the history and examine your son. Being a specialist in V. he will know what to look for as opposed to maybe the person who referred you to this specialist. V. is not diagnose immediately, it is a process as far as I can see and the result may or may not be V. The specialist will be looking out for the type of V. or another type that may be mentioned in the referral letter. So remember what you want to hear is that your son does not have V. If he has there are many excellent Drs. now who can care and look after your son with your care also. You son if he has V. will learn to manage it in life just like others have done. This is a great site and you will get great help here also. So you are not alone. Remember think positive! as your son will look to you for strength during this investigation. Good luck!

[RichardE Volunteer]

Hi Laura. The specialist should be familiar with you son's case from his notes. They should have seen all the previous blood tests that have been done and may well ask for more to be carried out. I would also expect them to take a urine sample to check that too. But equally they should make a physical examination and a good consultant should also consider what *you* have to say about how your son has been feeling and any symptoms that may have cropped up in the past.

Do make a note of everything you want to tell them before you go. Having a list of symptoms, things to talk about and questions to ask, to take with you, is always useful. If you have any photos of rashes that have come and gone then do take them along to show as well. And remember that every little symptom that your son has had may be another little piece of the jigsaw that will help the specialist see the overall picture of your son's condition. So mention anything that you think is unusual and let them decide whether it's important or not.

All the best for your appointment and let us know how you get on,

Richard.

[Sima1952]

Just to add to Richard's advice, maybe keep a diary of your son's symptoms for approx a couple of weeks or a month before you go and take it with you.

Sally