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

oh katy, glad you have managed to get a reliable second opinion, and so glad that some of the other nasties have been definitively ruled out.
it's a bit like dd2's dx of cp. i knew it was cp, they knew it was cp, after 2 years they dx it, but still no-one was able to say whether she'd ever walk/ talk etc.

waiting games are the worst.

do you trust the psychologist? would it be possible to get a second opinion on that side of things? so that you are sure that dd is in the best hands possible?

Big argument with DH

Why does the psychologist want to talk to him? What is the point of that? He is definitely not taking about his childhood, it's not relevant and neither is anything else. This is about DD not him.

I can see the meeting on Friday going so well

I would think it unlikely that the psychologist would want to talk to dh about his childhood, unless there is reason to believe that he is so damaged by it that that in itself impacts negatively on his dd. When we had these meetings (while it was still thought dd had a psychosomatic disorder) it was very much about dd, and absolutely not about blaming us or poking into our secret corners.

That's what I said

I am so tired

it's about the family dynamic and how dd can be supported, not about digging into his secrets.

are you all meeting the psych together on fri? or at different times?

DH & I together

No appointment for DD this week

Hi,

Just been reading about your DD, I'm really sorry about whats going on. Has anyone suggested a Lumbar Puncture at all to check the pressure on her brain?

My Daughter is also under GOSH, she has an illness (she's 15, was diagnosed at 13) that gives her too much fluid on her brain (nothing shows up in MRI scans and the first year although she had visual symptoms they couldn't see any papiloedema or anything).

She has terrible headaches, blackouts, fatigue, vision problems, etc. But the symptoms do vary.

The started saying it was stress but she is such a happy girl and so I pushed them to do everything they could. When they did the Lumbar Puncture it showed she has Intracranial Hypertension and the pressure on her brain was 3-4 times higher than it should be.....

Just a thought. Hope you get some answers soon and she's feeling better!

If you want to know any more about it my email address is: [email protected]

xxxxxxx

Vision electro something or other
No MRI, no CT

Thanks SomeWhereOverTheRainbow4

I just don't know what to do now - it all seemed so plausible in the office yesterday - we were the last to be seen and it was all resented so 'fait accompli', this is how it is, there isn't any other option, it is how it is

I am not a doctor, but frankly I am astounded that she hasn't had a MRI or CAT scan done.

FWIW few weeks ago I started seeing a shadow of my nose 'twice'(instead of once), have been to an ophtalmogue who sent me to an optrist (or whatever this doctor's called-have appt tomorrow) and said that if that guy will not figure out the reason for that I should have a brain scan- even though I do not have any other symptomps, I do not see double anything except the nose and most certainly didn't lose my vision (just have lazy eye and myopia).

Any chance you could go private?

OK

What questions can I ask the psychologist

*Is it likely that this condition was caused by trauma?

*What makes you think that DD's current psychological condition caused the sight loss rather than being caused by it?

*What do we do now?

There must be others

Can anyone help with this?

i would be talking about timescales.
what support can you (katymac) give dd to back up the psych 'treatment'.
what support will you (katymac) need/ be offered whilst your dd is undergoing 'treatment'
what will the psych 'treatment' consist of - what is the 'trauma' that has caused the sight loss, what can be done to reduce the impact of that original trauma, how can the trauma of losing your sight be minimised for dd (presumably in ordernot to complicate the stresses of the 'original' trauma,

but definitely ask about timescales (i suspect they won't want to discuss) but does she get a max of x sessions, or will psych support be ongoing until the condition is resolved.

is there a conversion disorder support group group nationally or locally that you can access for support,

internet forum?

is there a group for teens affected that can support dd?

in terms of 'blame' (if dh is feeling unnerved) are you going to be given support to work through feelings of (however irational) guilt etc

They are great Nick - thanks

I have copied them out and converted them (a bit) in to 'my' language

I'm still unhappy about it all

Sorry, but how, how, how can they know that there is no neurological cause if they haven't looked at her brain??????????????????

I don't know

They know her eyes are working - but tbh we have known that for a while

I am going to have to pay for an MRI aren't I? & maybe a CT too

If you do, I would go with an MRI. CT shows structural issues, but MRI also shows composition. DD1 has a brain malformation, and her CT came back 100% normal. It was only her MRI that showed widespread subtle malformations of the surface of the brain.

I'm starting to wonder if she has ME like me - I do hope not - it's a rare symptom on ME but she would have other symptoms as well normally

I feel very lost still & I was hoping for 'answers' at GOSH

ah, but thinking about it, it is a tricky one. CTs are better for bleeds/fractures. MRIs for tumours, etc. Obviously, in one sense anything showing as a reason would be good as an 'answer', but ideally, the best solution in the world would be that both are clear & GOSH are right. Then of course, you would want your DD to recover within a few days/weeks

I am so sorry things are still uncertain for you. You are doing a great job of holding it all together.

It's 16 weeks tomorrow

GOSH said it normally lasts weeks not months

Am I just fighting against this because I don't want DD to have mental health issues?

I don't think I am but who knows

I think that most people (before this) felt that DD was quite emotionally stable & had commented that 'she had her head screwed on' was very 'well-adjusted' etc

But?

Have I fixated upon the idea that DD has something physiologically wrong without any evidence?

I wonder

oh katy i can't be any help but i'm so sorry you sound so stressed & they're not being helpful

I am stressed, I don't really understand why they keep on about her eyes, I am worried about her brain

I no longer know if I am being rational about this