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My daughter has been diagnosed with a conversion disorder; she is basically blind

K

KatyMac

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May 27, 2010
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My daughter has been diagnosed with a conversion disorder; she is basically blind

But my big question is is the consultant right?

We have asked for a referral to GOSH & have to wait for that

The consultant says that 'anything' I do to make DD's life easier/more acceptable/more interesting while she is like this will increase the length of the condition

So no:
Touch typing lessons
Talking books
Screen Reader
Reading to her
Letting her friends help her
Providing a 121

Nothing

& it will last about a year (so on day 1 it was a few hours, then a few days, a week or so, a few weeks, maybe a month, a couple of month & now, at 13 weeks it will last a sodding year)

& she can just join the year below when her sight comes back, cos there is no point going to school without any support

I am desperate I cannot tell a 12yo to sit around & wait for a year; if nothing else she will be depressed at the end of it
 
J

jornacam

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Jun 26, 2009
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Location
N.E. Scotland
Have you seen a neuro opthalmologist? there are specialist neuro opthalmologists that deal with peadiatrics.
I have never understood how the person with conversion disorder is likely to get better with no assistance, there should be a team appraoch from phsychiatric team and Occupational/ physical therapists.
In true conversion it is not under the patients control, you cant cause it too happen. The software malfunctions but the hardware remains in good condition. That is how it was explained to me.
Never be afraid to ask for another opinion.
May i ask as to what 'made' her blind? Stressful or terrible things that she may have been witness too, it is thought that it is the brains way of dealing with things you have witnessed that are too traumatic to deal with on an emotional level. That is where the phsyc team come in to help deal with the event that set it off.
It may be useful to chat to her if you can. I know it is scary but dont give up.
There is a school of thought that people do this for primary or secondary gain, ie if she was feeling left out and it gives her a way of gaining attention, hence the reason for you to not subscribe to the attention seeking will result in a full recovery. You are supposed to only concentrate on the positive outcomes, ie give her a book and praise if she reads it reinforcing the great progress of her returning vision. Not reinforcing the sick role.
I felt very hurt by the suggestion that i was seeking other peoples attention as i had shut myself away and was desperatley trying to do everything, my partner was still working and my 3 kids were still needing to be taken to/from school and after school clubs etc.
Routines did not change for me, they were just 1000% harder for me. The doctors now think i have some brain injury and some functional overlay (ie conversion). either way life is more difficult than it was and i only want it to get better, it dont care what they call it or how they treat it. Im 6 yrs post injury and i have yet to see any psyc consultant for treatment. I have been assessed by 3 neuro psyc but it seems to end there!! good luck.
 
K

KatyMac

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May 27, 2010
Messages
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No neuro opthalmologist - hopefully there will be one at GOSH

Me neither -making her life less stressful rather than more stressful seems sensible

Nothing made her blind (as for as we can tell & she can tell us)

I am very down about it
 
J

jornacam

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Joined
Jun 26, 2009
Messages
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Location
N.E. Scotland
I can imagine just how you are feel. Its very difficult to get your head around what they tell you but dont give up and dont show that you are down around your daughter. You have to keep well and strong for your sake as well as hers. I wonder how much they actually explained to you about Conversion Disorder and how much information they were able to give you to read in your own time, i know that if doctors give you a diagnosis you dont expect that you can sometimes just not take in all they say to you.
Please feel free to chat whenever you feel the need.
I just thought that at the end of the day i didnt really care what they called it as long as i got better. I just want to get better as soon as. Please ask the doctors what muti team approach they have in place to help her as the sooner they can start the better her outcome will be. Is the referal to GOSH an urgent one? I think it is the Maudesly that treats adults but not sure if they have a peads team.
Keep your chin up! Stand your ground. Good Luck.
 
K

KatyMac

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May 27, 2010
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They said "Oh it's conversion disorder, it's stress related and causes a psychological blindness, it will go away in (a few hours, then a few days, a week or so, a few weeks, maybe a month, a couple of month & now, at 13 weeks it will last a sodding year - please delete depending upon which one I was seeing at the time)

Umm the eye consultant sent us away & said they would see us 2 months later (that was this week)

I have arranged to see a psychologist but she has never seen it before only briefly heard of it & is at a bit of a loss

Do I sound cross? Probably because I am
 
J

jornacam

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Location
N.E. Scotland
Im quite honestly appalled. The consultant at your hospital should have refered you to the psychiatrist at the hospital, someone who specialises in this condition. If it is treated quickly then the outcome is much more favorable. Have you researched the condition on the net at all? There is a fantastic website that explains it very well i can look up the link and pass it on to you if you like.
The thing that i find so hard to handle is that the doctors can diagnose this particular disorder but that there are few who actually treat it. I felt like i was banging my head against a wall. There is only one specialist in Scotland so i am pretty much stuck as he his miles away from here and i dont have the ability to travel unaccompanied and it would be an all day trip just for a single appointment.
Ask your GP to enquire how long it will be till you are likely to be seen at GOSH. Ask for an appointment with a specialist psychiatrist who treats this condition as you need to get it treated sooner rather than later. I understand totally your frustration and anger. If you can gather the supporting evidence off the net and produce this at the appointment it should help.
I hate going to the doctors now as im afraid that every illness i may suffer in future might just be written off immediatley as conversion. What i never cared about was the stigma of mental illness. I dont give two hoots. Most people are supposed to shun the idea that it could be a mental condition, i just want to get better, wether that entails doing therapy or taking a bucket load of pills or even dancing naked in town, i really dont care as long as i get back my quality of life. I just cant imagine being so young and having to deal with these issues.
 
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KatyMac

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May 27, 2010
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Thanks for that link

TBH we are completely lost - we can't 'find' anything that could have 'caused' this for my daughter - she eventually saw a psychologist who (as yet) can't find a reason for it

We are seeing GOSH next week which tbh is scarily quick, we were told 3-4 months
 
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KatyMac

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I'm not really dealing with this very well
 
J

jornacam

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Joined
Jun 26, 2009
Messages
20
Location
N.E. Scotland
what is that your not dealig with very well? Just be positive especially with your daughter. Do what you feel is right for her, and hang on in there. Let me know how you get on at GOSH. There should be someone there that you can talk too about your fears and worries. Ask to speak to the doctors away from your daughter so that you can voice these without letting your daughter know how upset and worried you are. You will be able to cope just becuse you have to. Its what we do as parents. The doctors at GOSH are very approachable and will understand how you are feeling.
Tell them you have read about the condition on the web and remember to write down all the questions you have for them as invariabley you forget when you are in a possition to ask. Dont feel that any concerns are to small to ask about as the question you probably think of as a stupid one will just go on bugging you unless you get an answer for it!!
If you can write down the answers or ask if you can record them on your phone or a dictaphone so that you can refere back to them when you are a bit more relaxed and able to process it a bit better.
I check in here most days in the evening, although i wont be on Monday evening as i have a school meeting for my eldest who is starting high school and has special needs.

How is the rest of your family taking this? What is there understanding? Please be kind to yourself and take time to be alone. Go for a walk or soak in a bath, anything to relax and switch off for a wee while.
take care.
 
K

KatyMac

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May 27, 2010
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I guess I'm not dealing with all the not knowing

GOSH were lovely but they only checked her eyes - I'm worried about her brain; I thought we would have an MRI or a CT scan but we just had the visual stuff checked (electrodes & stuff)

I feel quite let down really
 
J

jornacam

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Joined
Jun 26, 2009
Messages
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Location
N.E. Scotland
Dont feel let down, the ball has to start rolling somewhere. Did you get the opportunity to speak to anyone about your concerns? Was it just testing that you had previously had? This initial appt may pave the way for the treatment to follow, it will also give you a second oppinion.
Keep your chin up.
 
K

KatyMac

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May 27, 2010
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No they discharged us

Her eyes are fine so they won't look anywhere else

She hasn't even had a blood test
 
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jornacam

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Jun 26, 2009
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Location
N.E. Scotland
What are you thinking could be wrong with her that would use a blood test? Im sure you are probably scared it must be a cancer of some sort by what you have said. There would be lots of other symptoms that would be apparent if it were. Book an appointment with your GP and tell him what your worries are, He may even give the blood test to put your mind at rest. You will have to go back and speak to him/her about the results and next steps. Dont worry yourself sick as you wont be able to look after your daughter. Please try not to worry too much, i know it is scary.
Im here if you still need to talk.
 
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KatyMac

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May 27, 2010
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We are wondering about post-viral stuff or a virus she might have picked up in Jamaica in January

Silly I know
 
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