Conversion Disorder

[chocaholic73]

It is looking increasingly likely that my DD aged 16 is suffering from this. This is the paediatrician's view and it certainly seems appropriate. I wondered if there was anyone else dealing with this. I would really like to know how to deal with the symptoms while we are waiting for our appointment.

That sounds really stressful for you. I assume you've had to go through all sorts of physical tests, etc., with your daughter already.
Which precise symptoms are you wondering how to deal with? And do you mean how to speak about them with your daughter?
Hope today's going OK.

Thanks. Haven't had done any physical tests recently but to keep it as brief as possible she's ASD and has always found life very stressful. After she went to secondary school she had a 9 month spell of visual functional impairment (no sight) - she had a brain scan, saw 2 opthamologists and they said she would get over it, with positive reinforcement. She then changed schools and things settled for a while but then deteriorated again. Has some sessions with CAMHS basically working on school based anxiety but she didn't really understand what they wanted her to do (visualisation, relaxation techniques etc). Fatigue was getting worse at this stage, although it has never been good, and after a trip away with DH where she was really keen to go, they had to come back early because she couldn't cope. CFS/ME was then diagnosed following clear blood tests. I should mention elder DD has severe CFS/ME and DD2 has watched this going on for several years. However, i have always felt the symptoms didn't quite tie in with CFS/ME, there is no reaction to activity and she doesn't want to do things, whereas DD1 is very well motivated, even though her body lets her down. Since Christmas DD2 has become unable to watch TV (too bright), go on computer (makes her feel ill), suddenly out of the blue about 4 weeks ago developed eating problems (acid) which have been helped by anti acids but she is unable to lift her arm to her mouth with food, although she can do it the rest of the time. About 3 days ago, her legs started giving up and it is pretty much as if they are glued to the floor, she occasionally manages to shuffle a bit at snails pace but that is all, she can hardly move. Spoke to paediatrician who has already done referral for UCH in May (CFS/ME service but the doctor has an interest in medically unexplained symptoms) and has now also referred back to CAMHS. While we wait for all of this to happen, I wonder how I should deal with all of this with DD2. Clearly, I can't ignore the legs issue because it means she needs help with a lot of things because of it. Sorry about the epic btw - hope you're still awake!

Sounds like you (and she) have got a lot to deal with. Good that CAMHS and specialist referrals have happened.

What do you see as your options in terms of how to deal with the symptoms? When you say you can't ignore the legs issue, does that mean you generally try to ignore the other symptoms as far as possible? And if so what form does this take? Do you mean not discussing them?
Are you having to do feeding and carrying DD2 around?

In general, I tend to think the answer to these things is most likely to be that there's not really a right and wrong (so long as keeping everyone physically safe). You're probably doing it all as well as anyone possibly could. Must be really tough.

I'm not ignoring her symptoms - I think it would be cruel to do that - but I'm trying to keep it as low key as possible but it's really hard as it is changing so fast atm. She's not eating much because of the acid problem and I've found sandwiches work better than anything else, so that's what she's having for now. It sounds odd, but she will pick it up off the plate and then her arm "gets stuck", so I very lightly push it up towards her mouth and she eats it. I couldn't carry her around - she's bigger than me! We have a wheelchair and a stairlift because of DD1 being so ill - I have worried that it's setting a precedent but I have no option and it does mean she can come downstairs during the day. Thanks for replying.

As you say, it doesn't really sound like you have much option. Seems that you're allowing her to do all the things she can still do (most of the eating stuff), and help her with the things she can't. The setting precedent thing is very hard but almost inevitable, isn't it? Sounds to me like you're doing very well dealing with pretty tricky situation.
By the way, I don't have any direct experience of this with a child of mine, but some similar things with my step-sister.

RoseinMarch thought you sounded as if you had experience of similar issues.
Mindfulmum I had heard the Maudesley were the place to go to. Like you, we already have mixed experience of CAMHS but there doesn't seem to be any alternative but to try again. It is down to luck who you end up seeing I think. I would be prepared to look at private options but there doesn't seem to be much for under 18s.

my daughter had conversion disorder. This resulted from a genuine physical illness where doctors dismissed the real physical illness she was suffering. as we couldnt get anyone to believe her or us the conversion kicked in on top of her real spinal problem that has since been diagnosed. Her brain put herin a state where she no longer had to worry, it shut her down into a coma like state. She had long periods of unconsciousness. She lost all movement from her neck down, she lost her sight. Happy for you to pm me.

Have messaged you mumof4darlings