Just back from GOSH

[Katymac]

I am so tired

It is definitely psychological

So I wasted everyone's time & we are no further down the line towards a 'cure'

poor DD

katymac - I've been following this thread for a while. I've 2 dd's who've both been unwell suddenly in the past year, so I understand a little of what it's like for you. I think it's fantastic that the scan referral is taking place. I have lost count of the number of letters in which someone writes something less than helpful - like the mid section of this one for you - but tbh so long as you get the outcome / investigations that you think your child needs you are doing brilliantly , and don't worry whether various health professionals feel you're a little anxious. Sometimes parents have to push - I hate doing it too. I have been thinking of you and your dd and hope that today will be a better day.

What katsh said: it's the end result you need to think about- just look away from the middle bit

The GP I saw today agreed I was in a sort of downward spiral unable to break out of the idea that DD is physically ill

So I get some counselling/therapy

katymac, you can have all the counselling in the world, once you know that your DD is suffering from physical symptoms with a psychological origin. Until then, you are following your instincts, and protecting your daughter from a potential misdiagnosis.

Sluggish pupils - hell no. I'd be sitting on a trolley in A&E refusing to move, myself. I used to work in neurosurgery. Since when are sluggish pupils no cause for concern?

Don't let anyone tell you that you are overreacting. You are just following the differential diagnosis to its conclusion, at which time you will be content to treat the 'conversion disorder' that has been diagnosed by ruling out physical cause.

If the medics were doing their jobs, you wouldn't have to be begging for referrals

The GP again dismissed the sluggish pupils as an anomaly (without seeing DD)

Lets play devil's advocate say:

DD has a psychological condition
I refuse to accept it & run around trying to find a cure
What happens next......?

Maybe:

DD has a psychological condition
I do nothing
What happens next......?

Alternatively lets say

DD has a physical problem, diagnosed as psychological
I refuse to accept it & run around trying to find a cure
What happens next......?

Or even:

DD has a physical problem, diagnosed as psychological
I do nothing
What happens next......?

Just looking at the statements - am I doing the right thing?

Sorry to hear this is still ongoing.

May I enquire into your dhs health?

The last threads I remember from you prior to your dds vision problems, were you juggling hospital visits with every day life and your dd being very upset.

Dh is weller (if that is a word) than he has been in years

Papworth (wonderful people)have finally sorted out his medication and he has had 2 chest infections in 6 months (vs more than one a month previously)

Something the psychologist brought up is the fact that the NHS has let both DH & I down (to the point of our lives being threatened) so many times - maybe it is impossible for us to "trust" them again

You know you are. Your daughter is blind. She wasn't 18 weeks ago.

Are you going to register her sight impaired? It might give you access to some practical help.

Apparently I need a letter from the hospital consultant

This article gives a good overview of the difference between CD and true neurological deficit.

You will have to register, but it is free, and you don't have to use real info, just a real email address.

It didn't make me register - wow

I have lots to read now

How do you find these things - I have been googleing for months

It's just knowing the keywords to use. I think I used "conversion disorder sluggish pupils" then this was a linked article.

I'm glad it's helpful

Wow really interesting article - keep at it Katymac - you are doing the right thing - you have to rule out anything physical.

They think I am irrational - tbh I am expecting accusations of Munchausens by Proxy any day

Don't care what "they" think Katy - you have to do the best for your child - I would be doing exactly the same as you. On Mn we think you are fab and doing the right thing - there are more of us than them!!!

If the cause is finally psychological then you can start to help her get better but you have to know.

"a young woman in an opiate-induced comatose state was misdiagnosed with CD because she was noted to exhibit forcible eye closure and had periods of intermittent alertness. Subsequent electroencephalographic (EEG) studies of the patient revealed diffuse abnormalities and a computed tomography (CT scan) of the brain was significant for cerebral edema.[16] Hence, the need for accurate diagnosis, including the use of imaging studies, cannot be overemphasized. " from page 7 of that article.

They haven't done the imaging, Katy, remember that.

Katy - you are doing the right thing here - both for dd and for your own mental health. You have to explore all options in order to cope with the situation. If a HCP questions your actions I would (and have) said to them 'What would you do if this was your child?' And if they are honest, the answer is that they would be doing all that you are. You have to explore all the options - you wouldn't be a good advocate for your dd if you didn't and you can't make informed decisions without all the available information.

I have been where you are now - my dd was shunted to the GP's, hospital and back for 14 weeks because I knew she was sick. No-one (except my wonderful HV) took me seriously- dd's notes have references to her 'over-anxious' mother. dd had two heart attacks and went into cardio-genic shock the day after another doctor basically patted me on the head and sent me awayyet again. It is difficult to have trust when you have been badly let down - it's quite a scary place to be.

I hope that you get answers for your dd very soon so that you can get the road to recovery one way or another.

It all sounds so reasonable here

You all think I am doing the "right thing" in fact the only thing

But when I see a HCP they look at me as if I were raving "How can all these professionals who have seen DD be wrong" "why would a consultant not do the appropriate tests" "what possible reason do you have to think anything other than conversion disorder is wrong with DD" "You really must accept their diagnosis"

They have a unique talent for doing that, don't they?

It took me 7 years to get a diagnosis. And many many consultants said my problems were psychological. This sort of thing is a lot more common than you'd think. In fact, I can think of a child on the postpals website (can't remember which one, sorry) who aged 5 went blind (but with lots of other symptoms), and was initially repeatedly told it was hysterical/psychological. Aged 5!

STICK TO YOUR GUNS.

As everyone is saying, fair enough that you accept the current diagnosis if all the appropriate tests have been done, but they haven't been. I'm so cross on your behalf. My mum fought on my behalf like you are fighting for my daughter and I am so very grateful to her years later. It's not easy standing up to the medical profession.

dear god I have just been sent this

I am horrified

Thanks Bathbuns

To focus on your statement "that you accept the current diagnosis if all the appropriate tests have been done, but they haven't been"

Why do I think they haven't been

Well people keep telling me they should have been done

Who

GP (not mine)
Optician who is used to dealing with what they think she has
Paediactric consultant (retired)
HOD at Royal Free (childhood friend)
Opticians in Australia/USA

Are these people reliable

Well I don't know - but they seem plausible to me

Katymac, I was about to write a long post, then realised that lou031205 has not only said more than I could, but has said it better. One thing I was reacting to was your GP's dismissal of your DD's sluggish pupils as an "anomaly". Anomalies should never be dismissed, they should be investigated. Your "devil's advocate" post is really the kind of differential diagnosis that should already have been happening. In addition, your family's experience of health problems should have been taken into account from the outset, because all the specialists, including your GP, should be accompanying the whole family on the journey of deducing your DD's condition, because they at least should have some focus on rebuilding your trust in the medical profession.

And if anyone should even hint at Munchausen's perhaps you should print out your threads here and ask them how they would respond to so many of us feeling appalled by how this situation has been dealt with so far. Many doctors are aware of the self-help groups on the internet in their particular specialty ? but I think it's only in places like Mumsnet that there's a self-help group for the "doctors-don't-quite-know" syndrome, or the "various-specialists-don't-agree" syndrome. In particular, I personally think the idea of "stop looking for alternative interventions" shouldn't be in any specialist's lexicon, especially a psychologist's.

I thin the problems with her 'sluggish pupils' is that they are only sluggish intermittently - so it's not always there

But it has been seen by several people
The optician
The orthoptist (sp) at GOSH
The consultant at GOSH

But only the optician took it seriously

Hi KatyMac,

DandyDan here - whose daughter had conversion disorder causing sight loss for a long period of time.

I haven't been around for a while but wanted to see how things were going for your daughter. If it appears that the diagnosis was conversion disorder, it is at least clear that that is the route to follow. Once we had our diagnosis, there was little else to do but persist with the psychologist, and it worked over 13 months of weekly appointments. We had the scans, the neurology and specialist opthalmology appointments, the lumbar punctures to test for pressure on the optic nerve, but in the end all this was not the reason and caused extra stress.

We were told in no uncertain terms not to treat our daughter as 'blind' or treat her as if she was visually impaired (other than guiding her subtly when walking). We were able with the support of SEN staff at the school to make sure the school understood my daughter's situation as a "temporary" situation, to support her with printed-out lessons, or an assistant or allowing me to come into school with her for lessons. They also arranged a CAF - Common Assessment Framework in order to continually assess her additional needs, drawing together a multi-disciplinary team of people involved in her case.

Two years down the line she has had only two very brief sight-losses (an evening+early morning period, and a two-hour morning 'blip') in the last 12 months and both caused by sudden intense stress. And today she finished her GCSE exams with no problems whatsoever with her sight, so we are really celebrating that as well. The only concession was that the school still thought it important to let her take her exams in a separate small room to lessen the stress for her. Our school has been superb in this, and in allowing me to go in and do lessons with her when she wasn't able to see.

Another thing to remember is what someone posted above - that huge numbers of teen girls experience heavy levels of stress and the body and mind cope with it in different ways. Looking up 'conversion disorder' on the internet brings you articles that suggest a specific trauma is the cause - and that can surely be true, but not in all cases. Inner conflict and tension can just make the brain put a halt to things and switch off the visual signal.

If your consultant is helping you to get an MRI scan, then that is good, but increasing numbers of exploratory appointments can bring their own stress, and also add to the number of days missed from school.