Its all my fault and I'm making it all up

[rebl]

Apparently its all my fault, ds that is. Apparently there is nothing wrong with him and I'm am neurotic. His limp is a behaviour brought on by me. This has been deduced because he's not complaining of pain. Right. Well he doesn't complain of pain. He didn't complain about broken arms for gods sake. He was still using the broken arm on both occassions. His pain responses are completely haywire. Even in there he glanced against something and it was like the world had ended, clearly demonstating that he doesn't respond to pain normally. His horrendous and plainly strange behaviour, which he was demonstrating in the consultation, is brought on by my neurotic worries. I am apparently being obstructive to communication between the paeds and CAMHS. I don't know how because there is only so many times I can ask CAMHS if they have contacted the paeds. I offered him the CAMHS phone number and he said no! The sleep problems are normal. He shouldn't be having all these assessments by camhs because there is nothing wrong with him and it all in my imagination. I said that we've thought for a long time there is more to him than just a deaf child and camhs are agreeing and he said "is that you saying that or have camhs actually said that theres more going on". To which I said camhs said that theres more going on to which he rolled his eyes.

It was horrible. ds is getting no investigation into why he's limping. Any other child would have been investigated. I have been directly accused of making up ds's problems and causing his behaviours. I have been directly accused of being obstructive. His mode of questioning was so aggressive it was horrible. I can't stop crying now. All I want is ds sorted. He was there being just plain strange and its all either in my imagination or brought on by me being neurotic. Yet camhs catagorically said yesterday that I'm not neurotic and I'm not imagining things and there are things wrong.

Dh says we should write an email to camhs telling them to contact the paeds asap and explaining why. He also says we should complain about this consultation. But I can't because I know they'll use it against me.

rebl: please go back to your GP.

Tell him/her about the consultation and make all the points you put so coherently in your post. If need be, write your post out and give it to the GP, asking them to request a second opinion. Because a child should not be limping without an adequate explanation.

Even if you were (and I really don't think you are) the world's most neurotic and paranoid mum, your child still can't walk properly, and the cause is not known.

whatcanwedotostopthis I really do understand how you feel and wasnt trying to be rude in saying to make your comment a new thread There are some places on MN that tend to put ppl in the firing line as they are not so sympathetic shall we say.....I am relatively new here but I know SN is a good place to be As far as campaigns go and where to put them I really have no idea or if it is allowed as such but if you want to discuss your feelings and air your views then do so and I am sure people will respond if they so wish x

rebl You are not neurotic or paranoid so dont give in and dont let them knock you down

Hi, don't ever think that you are making it up. My DD doesn't react to pain normally either. And currently having an ongoing argument with TOD as he's claiming she doesn't sign, and I'm saying she uses 100 + signs. It is very frustrating when all these people don't communicate and don't listen to the parents.

Rebel

Your DH is absolutely right to be requesting (if not demanding) a written report from CAMHS. I did this when our CAMHS had been assessing DS for over 6 months and had not yet produced a written report. We then received a very detailed diagnostic assessment from CAMHS.

I disgaree with the advice that you shouldn't complain about the Paed. I definitely think you should.

One of the consultants originally involved with my DS was insulting to the point of abusive, refused to recognise or even consider that DS had ASD and attempted to blame our parenting etc etc. Ex-H and I were quite stunned but decided that we could not let him get away with his behaviour, especaillay as he was doing nothing to assist DS and refusing even to consider what we were telling him.

The approach we took was to write directly to the consulatnt refuting each of the erroneous allegations he had made, stating that he no longer enjoyed our trust and that we wished to exercise our legeal right for a second opinion. We copied this letter to the GP who had made the initial referral to this consultant.

The GP was reluctant to make a referral to an alternative consultant for a 2nd opinion as the way these things work is that ongoing care remains the responsibility of the original consultant until such time as he himself refers your child back to GP Care or on to a different consultant. We told GP that we did not intend to attend any future appointments with this consultant, that we had no confidence in him and none that consultant would even agree to refer DS to another for a 2nd opinion.

To cut a long sory short, GP then contacted consultant's boss to express our concerns and (although we did'nt know it at the time, the consultant sent the 'complaint' letter we had written to him to his boss).

Boss consultant then contacted us and took over son's care.

I see absolutely no point in you continuing to see a consultant in whom you have no trust and whose failure to even acknowlegde or act upon your concerns ia causing you such dstress to the point where you are starting to question your own competence to support your child.

Paeds are not experts in much except general childhood conditions and illnesses. That's why they themselves refer children on to more specialist audiologists, neurologists, CAMHS etc.

I can only recommend that you do what we did.

Best wishes

whatcanwedotostopthis

I too think a new thread on how we can stop / react to professional's poor behaviour would be useful. I have some very strong thoughts on this myself after DS's experiences.

I would historically have always recommend complaining immediately but after what we have been through I really would recommend waiting to complain until you have a diagnosis or if not at least confirmation in writing from some professionals that they support you. It may have worked for WetAugust but it may not work for everyone and I think it is too big a risk. We only got proof of our misdiagnosis a week before the professionals meeting, it is just to scary to think of the outcome if we hadnt.

Being faced with the thought that you might lose your children, even if that is not the reality at all is unimaginable. Just the knowledge that professionals meetings are occurring without your being allowed to be present and having no idea what people may say in retaliation for complaints nearly destroyed me and I believe without the time, necessary resources for legal help and strong family support I think it would have. I know I will never be the same person again.

Thank you everyone for your comments. I've been out all day and only just got in. I'll read them all properly tomorrow. There have been developments today but I'm too tired to type much tonight. I'll be back tomorrow.

Hope all is well xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Yesterday I and dh spoke with CAMHS and they are writting to the paed telling him their findings so far which they say that they will state that there is clearly some complex issues surrounding ds, confirmed no emotional regulation and suspected sensory processing problems. They also got a call from school who are extremely concerned about ds's limp and the fact that the paed wouldn't investigate it. They felt that CAMHS needed to speak with the paed urgently regarding ds's pain responses. But the limp has all come to a head this morning as DS couldn't walk the whole way into school today . Still didn't complain of any pain but wouldn't weight bear. Took him straight to the GP and they called the hospital and he's got an urgent appointment with an orthopaedic consultant on Monday.

We're going to CAMHS again next week for a full sensory assessment with the OT and psychologist.

Thats great news rebl! Nice to hear things are moving forward for your ds and at least you have camhs finally writing to the pead x

justabout Yes, those are the type of words I've been using with regards the paed in the last couple of days.

The GP was not at all impressed that he hadn't been investigated by the paed when he was so obviously limping.

I hope that the letter from CAMHS will be good. DH is now saying we'll wait to see what the orthopaedic consultant says 1st before complaining about the paed. He thinks we'd be in a stronger position to complain if ds gets any sort of dx with regards his hip as he says it will prove that the paed acted in an unproffessional way by ignoring the mothers concerns and the limping child.