Just thought I'd put this here too - people might have more experience and tips re: getting a diagnosis

[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...

[chonky]

The only thing I can recommend is to keep a folder of all the e-mails and letters you receive r.e. your ds.
We do this for dd, as it helps prevent us from becoming 'lost in the system'. From experience, if we don't actively track appointments, scans, tests etc. they tend not to happen, so I mark on my calendar when to phone to nag the hospital.

Really sorry you're having such a crud time with the docs, hope you have more luck with the next appointment. Great news that your ds is doing so well, chonky x

[foundintranslation]

bumping for em.

[emkana]

Thank you for bumping FIT!

I hope you're okay!

[Jimjams2]

Sorry emkana it's all too familiar. I won't bore with my tale but we too were lost in the system (and so ds1 was diagnosed about a year later than he should have been). Just keep chiselling away and I'd advise seeking other parents of children who have the same "potential" dx. BY the time ds1 was dxed I had a good support group around me, which made the time after dx much easier.