Daughter referred to CAHMS

[kazzb67]

Hi, I have just joined as our 12 year old daughter is seeing CAHMS next week as they think she has FND. She has Albinism, confirmed diagnosis and therefore she is visually impaired, however, all the electronic testing they have done does not meet the level of vision she has. They have thought this since she was 6 but just mentioned this diagnosis now. She has had so many tests, even went to London! She now thinks everyone thinks she is lying as her consultant opthamologist just confronted her with this! I

[angelite]

Hi Lizz, plenty of eye related probs on here according to NHS :

nhs.uk/Conditions/albinism/...

Can I just say, what kind of a ( professional ? ! ? ) twit would be so blunt to their 12 year old patient, making them feel like they are putting it on ? ( Sorry but I'm feeling v. cross on your behalves ) The best way to explain it would be to say they do not know why her vision is so bad because their tests cannot explain everything. Have they considered that her brain may process things differently, such as vision, which would be a contributory factor ? Does she appear to have any emotional issues to you ? Bless you both, Angela x

[kazzb67 in reply to angelite]

Thank you for replying - we just don't know where to turn at the moment as all the members of her current care team are on the side of the ophthalmologist. Yes, she will continue to get the help at school etc but for how long we don't know! Our daughter is a happy child with no emotional issues at all she doing well at school and has many friends. She is an active swimmer and swims competitively, has participated in school and club camps and is an active member of the RNIB junior media team. Because of her age and her eye condition, we had asked for her to see the school psychologist several times over the last 3 years to make sure she was fine and they always said there is no need!

[Hidden]

I'm sorry you're daughter's had to go through all this, kazzb67. FND is just another way of saying that we don't understand what's going on. But unfortunately, many doctors are under the impression that it is a positive indicator of something "psychological". Maybe they just find it hard to tolerate the idea of not knowing, so they go for "psychological" instead, it feels somehow better to have an answer?

Don't believe it for a minute. I read an article recently that looked at the evidence carefully, and found that people with FND have no greater psychological problems than people with similarly-disabling "organic" disorders. Its distressing having an FND of course, but that's not a cause, its a consequence.

I wouldn't normally word this so strongly, but there's a young person involved here, and incorrectly assuming she has a "psychological" problem could do her great harm. You can really minimise that harm by making it clear to her that you don't accept that psychological nonsense. Her problem is simply beyond our current medical understanding. End of story.

[kazzb67 in reply to Hidden]

Thank you. We totally agree and are very, very worried about the impact this could have on her. She also starts High School next week and approaching the teenage years so hormones are going mad as it is. She is already scared to say if she feels unwell as she thinks no one will believe her.

[Hidden]

Poor thing! I only wish the doctors dishing out this psychospeculation could see the harm they are doing.

Better just to admit they don't know.

If you're being referred as a possible case of FND, I don't think they are likely to be offering any miracle treatments (if they tell you they know what causes it, that's untrue, no-one knows. And the ideas being put out there in the medical literature are, in my view, pretty fanciful). But if you get a good, understanding specialist he/she might be able to make your daughter feel more validated. And give her some sense of closure, and maybe hope for the future?