Trying to get a diagnosis for ds - I am sooooooooooooooooooooo annoyed!!!!

[emkana]

About three weeks' ago I was in e/mail contact with ds's consultant to discuss what the pediatric radiologist had said about his x-rays. The consultant wrote to me then that the radiologist wanted more x-rays and that she would order those next time she saw me - which was supposed to be today.
Turn up at the hospital today - consultant not there, different doctor sees me, who knows nothing about the case, there's nothing about further x-rays in the notes and the pediatric radiologist is not available either.
So a complete and utter fing waste of time to even go to the hospital today. The doctor I saw today was mildly embarrassed and will try and find out for me what is happening, but I am SO angry - why does nobody care????? At this point in time I really, really wish I was living in Germany where all this would be impossible - and where, if I had complaints about things, I could just choose to see a different doctor/go to a different hospital.
I am just so ped off. The doctors here seem to take the approach that as ds is doing well there's no need to rush to get a diagnosis. But I want to know!!!! And I think they should make an effort to find a diagnosis, because it has impllications for ds's long-term care, for what growth charts he should be measured by, for what other specialists he might have to see in the future...

How utterly frustrating, emkana.

how utterly ridiculous - at least he/she had the decency to look embarrassed.

Of course they should be making an effort - perhaps you could call the consultant's secretary and explain what happened to see if she can try and make sure that the consultant is there next time or at least discusses his case with her juniors so that they know what is going on before you get there!

Is it me or is it rude that the consultant is not even there for an appointment made, with no explanation given?

shameless bump in case anybody has any tips how to get doctors to actually do stuff

Emkana, being through that with DS for quite a different problem. Could you go private? we did for the diagnosis and once with the diagnosis in hand the machinery finally started moving. If I have left them to them we would be still waiting...

If you don't find a consultant you can trust, go and find one in Germany, medicine is like a brotherhood, they respect each other views so if you have the diagnosis they would follow with apropiate treatment etc. here.

I wouldn't mind going private, but the problem is that ds's possible condition is potentially so rare that it would be very difficult to find somebody who would know enough about it to make a diagnosis.

HAve you tried to contact a group or association related to the possible outcome of the diagnosis? they may recommend a good doctor, or a hospital that has a particularly good reputation for the problem or even a university that has carried research on the area. All these can give you a guideline on where to go, you will get surprised at how soon you become an expert too.

Sorry to hear this emkana, how bloody frustrating!

What a big PITA. for you.
aren't you off to Germany soon? What's your health cover like for there?
With the E111 you just get AOK basic cover, but at least you could see just about anyone privately.

Is there a skeletal dysplasia organisation in the UK or Germany that has a medical adviser? Or at least a helpline to tell you how to proceed?

The wait-and-see approach that is very popular here works sometimes but more often than not it just causes so much stress and heartache.

I completely understand your frustration. When dd was born the doctors were certain she didn't have DS, and the midwife was sure she did... bloods were taken and I was a complete wreck for the next 5 days waiting for the (rather important) result to come back, and then they wouldn't tell us the outcome because the consultant dd had been assigned to was on annual leave! We ended up staging a sit-in outside the SCBU until someone caved in and delivered the 'bad news'.

woops, just saw that Chandra had already suggested contacting an organisation.

I was thinking of going to see somebody in Germany. Trouble is that they would need x-rays, but I haven't got the ones that were done here, and they were supposed to be bad quality anyway, so I suppose they'd have to do more in Germany. Just slightly concerned about all the radiation ds will be exposed to.

Don't stop because of the X-rays, by the time you find the information, contact the consultant and wait for the appointment chances are he will be OK for another set of X-rays.

If he had broken an arm just after delivery, he would have had another X ray with in a few weeks time,probably in less than a month, so it may well be the case that he is within the safe range of radiation received per x amount of time.

Emkana? how are things going?