No news and on the verge on a breakdown

[hanaka88]

I went to see DS paed today and guess what? The MRI and bloods he had done in january are still not back!

So when I explained what was wrong he kept sayig the opposite he said 'if he hurt himself he wouldn't do it again' I said 'yes he would' and he said yes but he wouldn't stick his hand in the fire' I said 'yes he would' etc etc.

Then he said we are probably lookig at autism I'll ring you when his results are back and oh btw the EEG results I promised to call you about last time but never did despite constant calls from you are fine.

Well why don't I trust you will ring me for these then?

I want to know what I'm dealing with and I still don't. So what do I do? And what was the point of visiting him?

I wanna scream!

I would speak to the PALS - or whatever patient liaison that your PCT has. Complain about the lack of test results and ask for them to be chased.
Re the paediatrician, if you have no faith in his advice, ask for another one. Is he a developmental paediatrician or a general paediatrician? If the latter, speak to PALS and tell them that you would rather that you had been transferred to a specialist developmental paediatrician - it will save the trust money in the long term!
I have a long running history of non communicative paediatricians and have found that PALS know which buttons to push to get results - and they communicate with you!

I second auntevil, I have had to contact PALs myself recently to get ds2 transferred off a certain consultant's list.

Failing that, if I were you I think I'd write a long letter, with a list of specific questions that you would like answers to. I think a gentle reminder might be in order as well. I think sometimes they deal with so many patients and parents, that they forget that, as the worried parent of your child, you are bound to be concerned about test results and therefore its not unreasonable to want the results communicated to you within an agreed timescale.

Its totally unacceptable for MRI and blood results to take that long to come through. I know that MRI results can sometimes be delayed if they have to be sent off to be seen by certain specialists, but even then two months is ridiculous. As for the bloods, I would have thought a maximum of two weeks would be more than generous.

You have my sympathy, I often come out of our community paed's office wondering why the point in going was.

Thanks for both of your replies! I will definately find out who can help us!
I might as well have stayed at work today!

'what' the point was.

My typing is dreadful this afternoon.

You can usually find the number for PALs on your PCT's website.

Our PALs also helped when ds2 was seriously ill in hospital and the consultant just wouldn't listen to a word we said, in fact she was downright rude and condescending and said to my face that she thought I just wanted to discharge ds because I was 39 weeks pregnant! In the end we saw another consultant over the weekend, who did listen and we were proven right. After a week in hospital being made steadily more ill by the meds the first consultant had him on, they changed his meds as we'd asked them to and he was able to be discharged within 24 hours - before the first consultant came back on duty! My dh calls it Consultant God Complex!

Definitely a and chocolate evening.

Wow what a bad story! Glad ur DC was ok in the end!

My gran just called me and said 'what did he do to get this fine job? I would like to be paid for saying nothing!'

bless old/French people lol
she made me smile.

Consultant god complex! Fanastic!

Ah yes - had the joys of that too. The God syndrome is common in these here parts as well. Hanaka sorry don't know your back story but something rang a bell with me. Just before DS was diagnosed as having epilepsy he stuck his hand in the car boot as it was closing I had just finished telling him to watch and not put his hands near it as I was about to close it. Think he was probably having a seizure but got the word hand and the word boot and didn't understand what I was actually saying. Two weeks later he was in hospital in status epilpeticus and very poorly.

If you are not happy with what the consultant is saying please be stroppy. It's not nice but otherwise you are likely to be overlooked/ignored/forgotten about. Sad but true.

I will do! I think he probably does 'only' have ASD but I want to know why he regressed so late (3 1/2) and what we can do to help his regression of physical skills