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Conversion Disorder - help!

C

Chele

Member
Joined
Nov 14, 2008
Messages
8
Location
Newton Ayliffe
Hi there, Just been told today, that after months of worrying that my son has a very rare disease (HNPP) causing paralysis, going deaf and possible blindness - that it is indeed Conversion Disorder and there is actually nothing wrong with him at all!

In a bad place here, as only just come to terms with all the hoopla that came with having a teenager in a wheelchair and physios and Occ therapists all over the place, to being discharged from all that and passed over to a counsellor for him to deal with his "issues"!

He is 14 years years old and a lovely lad, but having problems over the years with asthma and eczema, developed social phobia (school phobia) Mostly being told to pull himself together and get a backbone!

He started with foot drop in March this year, which (after some trips which caused broken arms) progressed to right side paralysis, total body numbness and strange tingling sensations. Had all the EMG/muscle tests. The peripheral nerve test showed that the foot drop was real enough, but all other tests inconclusive. It all came and went a few times. Talk of sending him to a special school. By September, it had all gone away apart from some right leg muscle pain and some funny feelings in his hands. After being told a a joint meeting that it was probably physcosomatic in origin, all the help we were being given disappeared and we are left with 1 counselling session a month and a diagnosis of CD.

not sure where to go from here. Those symtoms were so real! Expect them to keep coming back and worry in case something medically is being missed, but also told that if I insist on seeking a medical explanation I could be causing him further damage. I dont want to cause my kid any problems of course, but so difficult to accept that there is nothing wrong with him!

Sorry for the long rant - need to vent! Any ideas anyone?
 
Fedup

Fedup

Well-known member
Founding Member
Joined
Dec 18, 2007
Messages
1,937
Hi there

What a palava !!!

How's thing's going now ?
 
B

bill.toy

Active member
Joined
Sep 13, 2010
Messages
27
Location
North East England
Hello Chele

Interesting that you say in your opening line that now he has been given the label of CD then that means 'theres nothing wrong with him at all"
Actually there is - it might be more psychological than physical and not something that you can cut or medicate away - but anything that has so tight a grip on someone that it leads to physical injuries is not nothing at all.

Even the 'diagnosis' of CD may be no more than a convenient description and most therapists don't get hung up on the labels.

What to do?? Well you say he is seeing a 'counsellor' but thats such a broad description - is it someone he sees in a specialist CAMHS team (he is only 14) or a generic counsellor at the GP surgery?
What sort of approach is the counsellor taking? individual / group or family therapy?

I would have thought that conversion symptoms of the severity you describe would have him referred to a psychologist / team for specialist work - you can ask about this.

If it is psychological in origin (and the possibility of their being some physical contributor shouldn't be entirely dismissed now) then there is some trauma(s) / issues that have caused this and therapy should be both analytical and behavioural - why not ring your local Primary Care Trust mental health service and ask to speak to someone for advice.

One thing that should be remebered though is that he isn't 'making this up' or 'putting it on' and to him the physical disabilities are real.

Good luck
 
BORTU

BORTU

Well-known member
Joined
Jun 4, 2010
Messages
1,449
Location
SW England
Hello Chele,

Sorry to hear about your lad.


A case came on here a while ago about Somatization. Can anyone tell me the difference between Conversion Disorder and Somatization ?

The only help line I have come across that mentions both so far is:
PATIENT UK

No help line

http://www.patient.co.uk/

The aim of this website is to provide non-medical people in the UK with good quality information about health and disease.

But they don't have a help line.
 
BORTU

BORTU

Well-known member
Joined
Jun 4, 2010
Messages
1,449
Location
SW England
Hi Chele,

I have been researching conversion disorder and I have not found many web sites that look as if they can help but what I did find was:


MEDICINEPLUS usa

http://www.nlm.nih.gov/medlineplus/medlineplus.html
Said:
Some doctors falsely believe that conversion disorder and similar disorders are not real conditions, and may tell patients that the problem is "all in your head." However, these conditions are real. They cause distress and cannot be turned on and off at will. Research on the mind-body connection may eventually increase understanding of these disorders.



For Conversion Disorder
MENTAL HEALTH RESEARCH
Contact
: Dr*Cornelius*Ani

Hounslow Child and Adolescent Mental Health Services

92 Bath Road 
Hounslow 
TW3 3EL

Email: [email protected]
Phone: 020 8630 3237

http://www.mhrn.info/index/portfolio/Studies/Stress-related-and-Somatoform/surveillance.html






And earlier on this site a post:
If you have Conversion Disorder then ask your GP to refer you to:

Neuropsychiatry Outpatients Assessment & Treatment,
The Maudsley Hospital
Outpatient Dept
Denmark Hill
London
SE5 8AZ


Hope this helps.
 

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