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

A few years ago, dd spent time as an inpatient at the children's rehabilitation clinic. There were also children there who were treated for psychosomatic disorder. One thing that struck dd (who had herself freaked out when initially diagnosed as psychosomatic) was how sane and normal they were. I think there is far too much stigma attached to these disorders and far too many stereotypical ideas of how a sufferer ought to be and behave. That was the first thing we learnt. The other was that they did actually get better, the treatment worked and they were able to resume normal life. Conversion disorder may be similar.

You see I have had depression both medicated & unmedicated and I have family with mental illness so I thought I was accepting and understanding wrt mental illness

I don't know I have made an appointment to see a GP this afternoon - I think I need help

Well the GP doesn't think I am depressed - so no medication or counselling

did the gp, comment on your dd and the situation?

I feel for you so much katymac.

No - he just said I needed to be strong for her

Katymac - your post at 23.12 made me think that she could have ME if you think so as not everyone has it the same and not everyone has all the obvious symptoms. Just like a local boy who died from meningitis because he could move his neck. Everyone is different so don't rule it out if you think it could be possible.

I know - that's why I'm not sure

If I'm wrong & I have forced them to give DD a blood test & an MRI - I will apologise

If they are wrong & I did nothing how could I live with myself?

But you did do something! Even if something new were to turn up at a later stage, you would still have nothing to reproach yourself with, you have done everything you possibly could.

In the meantime, you need to look after yourself as well as your dd. Might counselling be something that could help?

Katymac, I think that until they can look you in the eye and tell you that they have ruled out all physiological and pathological causes of sudden deterioration of vision, then you are right to push them.

You have already been told that your DD is atypical, because they expect it to last weeks not months.

I personally agree with you. My mantra when it comes to DD1 (she has a known brain malformation) is that when I am old and grey, possibly sat in a nursing home, whatever, I don't want to look back and think "could things have been better for her if I did x, y, z? Did I write her off? Could she have had a better life?" I want to be able to reflect and think "I pushed, I strived, I did everything I could to make sure that everyone around her gave her the best shot at life".

I think that until you know that an MRI/CT is clear, then you will not be satisfied that it is psychological. And children don't die of psychological causes of sudden eyesight deterioration being misdiagnosed as physical. Sadly, some children do die because physical conditions are written off as being psychological, or 'growing pains' or whatever, that they would not do if that patient was an adult.

Katymac - 2 of my children have had problems and I knew things weren't right but didn't know exactly what was wrong. The doctors all said they were fine. Dismissed me as neurotic as I had PND. Both children were found to have problems and we went private to diagnose/get treatment. You know your child better than anyone. Don't ever feel you were wrong to fight for her.

She should have MRI done. Go private if you have to.
Then, if it's confirmed it's psychological, you can focus on helping her get better without having any doubts etc which must be so stressing for you.
Just do it. And don't feel like you need to apologize to the doctors for anything. Your child went blind, they exclude the possibility of it being physical/neurogical without doing proper tests-you have every right in the world to not be satisfied.

I also kept being diagnosed with something psychosomatic and 7 YEARS later they found the physical cause (not serious luckily, but enough that they should have spotted it.)
And in the process of being diagnosed I was made to see a psychiatrist at GOSH who was eventually struck off for diagnosing a whole load of unwell kids with psychosomatic illnesses (and then forcing them into treatment which was harmful). GOSH is brilliant but the doctors there aren't infallible. Occasionally a doctor looks at his notes, sees another doctor has written 'psychosomatic' and just goes along with it for varying reasons.

Keep pursuing tests if your gut instinct says you should. And good luck. I really hope this doesn't take too much longer to sort out. If she does have conversion disorder, your dd still deserves the best treatment to get her seeing again soon

I'm so sorry for everything you're going through.

We have just got back from GOSH too and I think the main thing to remember is although it is a fantastic hospital in many ways, when they are dealing with such drastic things they don't tend to look into the smaller (yet still as life effecting) things they should. When we were transfered there we thought they would sort everything out immeadiately, but even today they have missed things.

Like I say they are amazing for many things but I thought they would never miss anything. Just know you are doing an incredibly amazing job, and you will get through this.

You are her Mum and you know her better than anyone else, if you have to push and apologise if it's nothing then at least you will know more.

Stay strong Honey xxxxxxx

I really don't know where we go from here

I am being made to feel a 'bad mother' for wanting more

I am dreading the meeting tomorrow with the psychologist - DH thinks talking is useless, I feel resentful of it (psychology) as I think DD's psychological state is as a result of the eye problem not the cause of it

I am terrified that either I will make thing worse by insisting on more tests or that I will forever regret not insisting on them

I have no idea about whether my reactions are balanced or reasoned

The school is being very slow to support DD, they are avoiding talking to me; I am not popular there & I don't know how to deal with that

I know exactly how you feel, went through it all when dd was at first misdiagnosed as psychosomatic. You just feel you can't win, whatever you do is going to be wrong and you lose faith in your own reactions. Felt very unpopular with the medical profession and also with dd's school. (these issues have now resolved)

Strangely enough, having dd, and later her brother as well, diagnosed with an undeniably physical condition, didn't totally restore my self-confidence either: life with a child with SN/health problems does seem to undermine you.

So- no answers for you, just lots of sympathy!

Katy,

I'd rather irritate a few doctors than always be wondering if I could have done more.

Go for it.

Who cares if your reactions are reasoned or balanced? Doesn't matter.

Your child has lost her sight. All you are doing is what any mother would do.

Trust your instincts.

I slept from just after 7 last night until about 7 this morning apart from about an hour around 10

I am so tired/despondent/unhappy

Dd's psychosomatic ankle pains were thought to be caused by the trauma of sexual abuse. She has never been abused in her life and if the paed had actually looked at her ankles he would have seen them bending. Six years later, not only has dd been diagnosed, so has her little brother, and I have been told I show signs of the same syndrome. What I do remember from that first nightmare stay in hospital is a junior doctor trying to persuade the consultant to do an MRI to no avail.

Having said that, other children who were diagnosed with psychosomatic pains did have psychosomatic pains and were eventually able to access appropriate treatment that helped them to recover.

So I certainly wouldn't rule it out. But then again, you do want to feel everything else has been ruled out first.

The main difficulty to me seems to be combining this pushing for more intervention with providing a calm soothing atmosphere that helps your dd to learn to cope. You have to be two people in one. This is where I fell down. Hopefully you will be able to do better than me.

Katymac, sorry to be blunt, but your worries about doctors thinking you'r ott don't really matter here.

Can you afford to go private? If yes, then just do it.

If not, then keep on bothering them til you get the scan.

And keep on at the school. They owe your daughter the support she needs.

NBCS have just been in touch

They are horrified at the way DD has been treated

I feel so much better - I am not over reacting there is something wrong; she has spoken to parents in my position & it turned out to be viral/post-vital stuff

Now I just need to convince everyone else - she is speaking to GOSH about no-one taking a proper medical history from us or asking about the mediation DD is on

Katymac, long shot, not sure the age of your dd, but did she maybe have the cervical cancer jab? Or any other jab? Cervical cancer jab side effects do mention vision problems.
Things like that don't just happen out of the blue, something has happened in a part of her brain, sometimes it could be a viral reaction, inflammation, minor swelling? I even read that some people could pick up a bug from (tropical) waters that lodges itself in the brain..
Do you have any ESR blood result? Does it show raised inflammation?
Thing is of course that they never check for a virus, they just hope it goes away, but they don't, as they do "hibernate" in the nerve cells and can flare up like when stressed etc.
Hope you get to the bottom of it soon.
If she was mine, I wouldn't just rely on drs, there is a fair bit on neurology you could try yourself. Eg, I in the past wrote to various researchers/authors of neurological publications and nutritionists in search of answers, took a long time, but it worked in the end.

She had a number of viral illnesses in the 6 months before it happened (approx 8) plus a major reaction to the swine flu jab & we visited Jamaica about 7 weeks before she lost her sight

She has never had a blood test