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My son has CD

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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?
 
intelgal

intelgal

Well-known member
Founding Member
Joined
Mar 17, 2008
Messages
1,413
Location
Yorkshire
Hi,

I dont know a lot about conversion disorder but from what I have read and it must be terrifying and frightening condition to be faced with. The only thing I would say is this is a real condition and hope that treatment can be directed appropriatley now that you have this diagnosis.

intel
 
C

Chele

Member
Joined
Nov 14, 2008
Messages
8
Location
Newton Ayliffe
I hope so, but dont know how effective one counselling session a month is going to be, and worried sick that there is something else going on that is going to be totally overlooked! Not normally a worrywart - having 5 kids i had a season ticket to A&E at one time or another! Just cant get my head round this at all. Worried about the mental illness tag as well. I know it is not PC, but old associations die hard!

thank you for replying - just having a mjor hissy fit it seems!

Regards
Chele:redface:
 
intelgal

intelgal

Well-known member
Founding Member
Joined
Mar 17, 2008
Messages
1,413
Location
Yorkshire
It must be really hard having a child thats poorly. If my mum knew how many trips I had to make to A and E over the last few months she would be devestated.
Take care and make sure you try and take lots of care of yourself and your strength will remain for your son

xxx
 
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Chele

Member
Joined
Nov 14, 2008
Messages
8
Location
Newton Ayliffe
Thank you!

Thank you so much for that! I have been wandering through the site, and am amazed at the support here. I feel so sorry for some of the guys, and realise that my situation is not so bad after all. I appreciate you taking the time to answer. I was panicked at first, but have calmed after reading some others stories. I think we will just have to hurry up and wait - one day at a time and a cry for help when needed!

Thanks again dear!:hug:
 
intelgal

intelgal

Well-known member
Founding Member
Joined
Mar 17, 2008
Messages
1,413
Location
Yorkshire
Well keep posting its a good place!

xx
 
A

Auntie

New member
Joined
Mar 7, 2009
Messages
3
Your Boy

Chele
I describe the tingly feelings as bubbles under my skin and it makes me very wary as it's normally a precursor to convulsions and a relapse. Don't get me wrong - I've never been paralysed but a relapse is normally convulsions, exhaustion, an inability to speak and such a need to sink in to the ground that I crawl rather walk around the house.
I spend a fortune on flat shoes (I can't wear heels - your son will find the same because my balance is off) because I drag my right foot round the outside toe and the heel of my left foot.
However, on the upside, I do have good days when I can wear a small heel and appear "normal".
You're going to hate me for this but I've lived with it for 11 years and the very best advice I can give you is - get used to it fast and adapt your life around it. I've done every test available, several times and I'm disgustingly healthy. Get him to do moderate exercise and sleep at least 8 hours (you will see a difference in his foot or shake if he doesn't). I will also recommend (as an adult) a small amount of alcohol - it's amazing the damping effect it has the next day.
The last thing I will address is his "school phobia". Please don't take my experience as gospel but I'm guessing it's not school as such, but more social overload - too many people, too many conversations, too much information. There are still times when I can only do one to one conversation and I can hear other people contributing but I can't convert their words in to sense.
I hope this helps you, because I went through the same thing years ago on my own and it's scary.
However, I may have a glimmer of hope - not a cure but a panacea. I went to see a specialist a couple of years ago and he told me that new research is starting to prove that it's not all psychological (it was, after all, Freud who diagnosed Conversion Disorder and nobody's disputed it until recently) but it might be a misfiring of the synapses in the brain, due either to psychological trauma or a virus. He also told me that because it took them 8 months to diagnose me and even longer to treat it that I had little chance of ever recovering.
Cross your fingers that it goes away and never comes back, but I hope I've given you some good practical advice in case.
 
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Clare-Jo

New member
Joined
Apr 8, 2009
Messages
1
Hi Chele,

I've just read your post because I'm concerned that I have some form of conversion disorder, but also feel I've got experience that could be of some comfort to you.

I was diagnosed with chronic fatigue about eight years ago - which is also seen as psychosomatic, although the symptoms are different.

Anyway, after about a year of recovery, I've led a pretty healthy life. Most people would have no idea anything had been wrong. I had a lot of counselling and I believe that's what cured me. I still see a therapist, but swear its been worth it.

My current problem isn't really CD I realise now though. I think it's just that I have a swelling/problem that isn't healing properly because of stress etc.

My point is though that these conditions aren't hopeless, people just need to find their own way through. Relapses are part of the course, but don't lose heart, they're just temporary.

Take care,

Clare-Jo
 
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Wordie

Member
Joined
Apr 1, 2009
Messages
10
Location
australia
hi

A chiropractor down the road from a friends house cured his paralysis that no one else could fix. Really. In my opinion worth a go. (Chiropractors are not accepted by the wider medical community but can work wonders). I don't know about CD and assume it is what they call 'gets worse and better by itself' in western medicine. You could try a good chinese doctor as well.
Mind and body are linked, but we can't see everything down a microscope.
Stranger things have happened. (than doctors being unable to find a cause). I hope he is ok.
W
 
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weary mum

New member
Joined
May 17, 2009
Messages
4
Location
south coast
Hi, it is so easy for people to misunderstand sufferers of CD as symptoms are so varied and unpredictable. My 12 yr old daughter has had it for nearly 2 years. We thought that 6 months ago she was making a complete recovery and was attending fulltime school again. But now she has suffered a relapse as school was becoming too stressful for her. We are in the process of working with the school to sort problems out. We have been working with a good osteopath and homeopath, both are treating our daughter to release stress in her body. She also has regular sessions of psychotherapy which definitley helps her to work through the issues that caused the CD. Hope this helps.:):)
 
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dubaidoll

New member
Joined
Apr 28, 2009
Messages
1
Location
Dubai
Conversion Disorder

My 13-year old daughter has been diagnosed with CD after having all the neurological tests, and flying to Switzerland to see specialists (we live in the UAE). it started a year ago with back pain (we were told she has fibromyalgia as they couldn't find anything else), then a damaged finger (with no medical reason for the pain) then left sided sensory numbness followed by total numbness, epileptic type fits, memory loss, black outs, unable to read, write, see colours....... the worst sypmtoms started in March. She is now back at school and seemingly coping, although still totally numb. still some other symptoms, but not so severe. weekly visits to a councillor seem to be helping, even though she hates it, which seems to be a normal reaction. She does seem to be getting better, and the councillor does not seem to think it will reoccur.... I am encouraging her to voice her fears, concerns etc instead of bottling it all up. it is absolutely exhausting as a parent, but I can see light at the end of the tunnel - so don't give up! So much patience is needed, understanding - even when we don't understand at all - support..... and of course trying to find the real cause - not always easy! We don't know what has caused it, but are hopeful we can beat this!

good luck to you all!
 
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telax

Member
Joined
Jun 23, 2009
Messages
14
Any one with conversion disorder go here !!!!!

Ask your GP to refer him to:

of the Maudsley Hospital
Outpatient Dept
Denmark Hill
London
SE5 8AZ

You are allowed under the referal rules to ask the GP for funding to send him there. They are one of only 2 specialist centres in the whole counrty equiped to diagnose and treat this illness. They are the best place for advice too ......... local Psychiatrists and GPs do not know about this illness and only ever give very bad advice. Some even try to say there is nothing wrong ........ go to those who know about it ...............
 
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