Advice needed from parents of children with conversion disorder

[Runningtokeepstill]

I'm beginning to wonder if my son has this. He's currently diagnosed with hypermobility and chronic pain syndrome but his pain flares haven't responded to physio, medication or pain management strategies and he often has periods when he just cannot walk.

Although there is always some ongoing background pain and he is somewhat deconditioned, the main problem is that situations where he feels under pressure or anxious render him more or less unable to move. He's been trying to keep going these last few weeks, but cannot walk functionally (2 hours plus to cover a few yards within the house) when in this situation.

He's had this problem for several years and for a time he used a wheelchair when leaving the house and he's done very well to get out of that. Now he seems to be dramatically worse. He won't agree to use a wheelchair anymore and I couldn't get him downstairs or in and out of the car when he's like this even if he would use one.

All services have discharged him (there's very little for under 18's locally) and we're back with the GP who doesn't have any new answers either. I'm desperate as I think the longer he's like this the more "set in" the condition will be.

Does this ring any bells with anyone else? How did your child get diagnosed? Is there any help?

[NoHaudinMaWheest]

Hi Running my dd has been dx with conversion disorder. I am about to make tea but will be back later.

[NoHaudinMaWheest]

Hi again.
It does ring bells although dd's symptoms and way of dealing with things were different.
In our case conversion disorder was suspected right from the beginning so once obvious physical causes had been ruled out we were referred to paediatric psychology within the hospital and then on to CAMHS.

Our CAMHS is pretty patchy. We got a firm dx of conversion disorder from the psychiatrist but nothing else useful from him. Psychotherapy is the treatment of choice for CD but dd was assessed and found not to be suitable. A subsequent dx of ASD explained why that was the case. She then moved on to CBT type psychology but found that difficult too. We had family therapy which was worse than useless.

We were referred to the only (as far as I know) specialist unit for CD in the country at Great Ormond street. Their approach is a combination of family therapy, physio and individual psychology or psychotherapy depending on which seems most appropriate. They mainly work on an inpatient basis and dd did make quite a bit of progress while she was there. It is pretty intensive and very rigid in structure though. She is maintaining progress now she is home but it is different transferring the progress to everyday life. She still has quite a long way to go.

We have a better psychologist locally now but it is too early to say how much that is going to help.

I think a lot depends on what your local CAMHS are like. To be honest I don't think ours really knew what they were dealing with. And we got a lot of 'blame the parents' stuff.

It is really difficult when you don't know what is going on or the best way to manage it so you have my sympathies. PM me if you want to know more about the unit. It is small so anything I say could be identifying.

[Runningtokeepstill]

Thanks for getting back. Tried to post earlier but lost connection and the post died with it.

CAMHS here won't see him as they say they cannot separate out the anxiety from any physical condition. I think at 16 he's too old for a first referral to GOSH. They saw him years ago for hypermobility, but although they got him more mobile, they didn't help him with the pain. They said it was psychological and referred to our local CAMHS. They said he was "unsuitable" for CBT and then discharged him.

He's been given some techniques for pain management but they don't help. None of the techniques for coping with pain work if you just can't move. I'm at a loss as to how to help him with this. If you don't mind I'll pm you tomorrow when I have more time.

I'm sorry that your daughter has been going through this and glad that she's had some improvement.

[NoHaudinMaWheest]

Yes 16 would be too old for the GOSH unit. DD only just scraped in at 15.
Speak to you tomorrow.