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

The consultant told me not to bother sending her to school - that she could go back next year in the class below

If I thought it was Conversion Disorder I would be able to 'sit loose in the saddle of fate' as my dad calls it & sit it out; but I am convinced there is something 'wrong' physically

Hey Katymac - no medical advice to offer sorry but please stick by your guns. Four weeks ago we took DS to our local hospital as was having seizures and they sat on it for six days while we jumped up and down watching our little boy falling to pieces right in front of our eyes. Eventually we got an EEG done which showed clinical electrical seizures and eventually got to a childrens hospital when proper interventions happened (i.e. not just taking his temperature every four hours ).

During those six days one of the consultants suggested I took DS home and put him back to school the next day. Despite the fact that seizures were every half hour and in between it was like watching someone have a nervous breakdown .

My gut instinct was that something was badly wrong and he has now been diagnosed as having frontal lobe epilepsy. We are just waiting for results of MRI that happened yesterday. And when we received our discharge paperwork from the local hospital it said reason for admission was "seizures according to parents"......

Please stick by your guns - I know its exhausting and seems ridiculous that you have to do it by keep stamping your feet.

Good luck.

Thanks Loflo - I will keep at it

If you just look at the illnesses since Sept it seems a big dodgy EVEN IF you ignore the blindness

Friday 23rd September ? Saturday 30th September
Virus ? temperature, lethargy, sleepiness & general pain; did not see GP 5 days

Thursday 15th October ? Sunday 18th October
Norovirus ? did not see GP 2 days

Saturday 17th October ? Monday 19th October
Virus? Sore throat, temperature, feeling of unwell-ness

Tuesday 20th October ? 25th October 5 days
Saw GP ? Tonsillitis diagnosed, antibiotics ? evidence provided

Wednesday 4th November
Saw GP ? incipient chest infection, no antibiotics so soon after the previous prescription. Monitor and record; discussed with school.

Thursday 5th November
Saw Nurse, discussed current health situation; decided to have Swine Flu Vaccine

Friday 6th November - Sunday 8th November
Probable reaction to the vaccination saw GP, was advised calpol & rest; phoned school for advice. 1 day

Monday 9th November
Vomited 3 times before 8am ? Phoned school for advice, due to 48 hr rule DD did not attend until Wednesday. This may have been part of the post vaccination side effects. 2 days

Monday 23rd November 5 days
Sent to school although unwell ? sent home ? saw GP prescribed Amoxycillin

Wednesday 25th November
Still significantly ill ? saw asthma nurse who consulted with the GP & prescribed Prednisolone (40mg for 5 days)

Monday 30th November
General pain, sore skin & eyes

Tuesday 1st December
Continuing from yesterday, nerve pain in shoulder/neck/arm, sore skin, headache saw GP 5 days

Saturday 16th January
Paramedics & Ambulance attend after severe chest pain. Attended casualty on Monday 18th diagnosed Pleurisy. 3 days + 2 half days

Thursday 25th February
Sent home from school with Dizziness. Couldn?t see properly on Friday and still dizzy.
Attending hospital on Monday 1st March, Tuesday 2nd March, Wednesday 10th March.
Sent home from school on Friday 12th March ? completely blind. 2 days + 3 part days

Wednesday 17th March
Very poor peakflow, very tired after coughing at night. 1 day

Wednesday & Thursday 28th& 29th April
D&V so 48hrs exclusion. 2 days

Aw bless her she must be exhausted too . You just feel so helpless when the people that should be able to help can't or won't......

Remember we are always here to vent at and listen.

Take care.

That's it isn't it

Frustration/helpless/annoyed

I just re-read that list - it is kinda scary isn't?

Hi katymac - it would be enough for me to think that there was more going on than something psychological. But then I am no medical expert.

But we are the people who know our children best but bloody hell its a constant battle to be heard sometimes.

I am just glad that we found one person who got it who put us in touch with the neurologist who could help.

Otherwise we would still be waiting for our out patient appointment at the end of July......

Just a thought but even before we had a diagnosis my gut feeling was epilepsy and I contacted and got lots of help from Epilepsy Scotland. If you have a gut feeling too might be worth checking out whether there are any support groups you could contact. Quite often the folk there have invaluable experience and ideas.

I was repeatedly ill like that as a teengaer and it had terrible consequences later,I think you should persist.My mum was fobbed off and I was labelled anxious and over emotional child when I had a serious auto immune problem!You are right to be concerned i think you have been treated terribly This could affect her whole life.Can she see at all now?Is she at school

Katie we had lots and lots of times like this with ds (although not sight related) he was,as you know finally diagnosed with M.E/cfs,do you think your lovely dd might have 'lupus' or is that ridiculous?

Noddy with ds2 we were fobbed off so much I began to think maybe it was me imagining ds2s illness and so we stopped going to the GP for help -then we had to go ds2 had a chest infection,and so I took DH along for support and the gp took one look and referred us again and sent us next day for more bloods.

I know its ridiculous and scary tbh.My mum was subsequently told that if I had been treated with steroids at the time eg aged 13 ish I could have been 'saved' the more aggressive treatment later on and the long term effects!

Dd has had a very similar pattern over the last few years. We did eventually get paed to agree to take bloods, and they were negative. What the paed reckons is that other stress (caused by effects of Ehlers Danlos syndrome) is lowering her immune system- and then the constant infections make her Ehlers Danlos worse, so it's a constant negative spiral. Dd understands this and accepts it and we are working with it as best we can.

But- we did need those tests doing first! You cannot get on with life until you know what you are dealing with. And as previous posters have shown, you can't really know at the moment. If we had accepted the original diagnosis of emotional trauma instead of pushing for the diagnosis that eventually turned out to be Ehlers Danlos, then dd would be a physical wreck by now (not to mention emotional). The emotional side was there too, but in our case it could only be treated in the context of physical problems.

Today is a bad day - why is today a bad day? I do not know; but it is

Sorry it is a bad day. Thinking of you and your dd. And what a list of illnesses, how utterly miserable for you both. My heart goes out to you.

Sounds like you both need ice cream.

I am acting rationally asking for additional tests?

Is it reasonable that I want a blood test, ct scan & MRI?

I am off to see a counsellor to discuss my 'irrational refusal to accept a psychological diagnosis' on the basis that they may believe I am not irrational - is this a mistake?

Afraid this is what does happen with undiagnosed conditions.

If you want to be charitable, you could think to yourself that they are as much in the dark as you are, but that they feel pressurised to provide some kind of solution. The only solution they can think of at the moment is the psychological one. From their pov you are getting in the way of that solution.

The only thing I have ever found helped was to practice the rhetorical concession (there is a posh Greek name for this, but I can't think of it at the moment). That is, you start your argument by conceding part of theirs, but... And hopefully they will be so grateful for your initial concession that they will fail to notice that it is smaller than the objection you then lodge. The idea is to find some kind of common ground, before you start your argument.

In your case, I would make it: "Yes I fully understand how important it is for dd to access any psychological help she needs. We are 100% behind that" (spoken in a very sincere and emphatic manner) (then you drop your voice somewhat and speak a little more hesitantly "The only thing we were wondering is if this support might not be even more efficient if we could establish whether all physical factors can be ruled out or whether something physical could be part of the problem. We do feel that X test would rule that out, and it would be easier to commit to the suggested form of treatment if we all knew exactly where we were coming from".

I have had to do this many times. I find the rhetorical concession at the beginning is essential- particularly if you are dealing with a multi-agency meeting and want to stop them from ganging up on you. First establish that you are a nice sensible person who does not ask for more than to be able to co-operate- and then try to get them to co-operate with you instead.

Thanks Cory - I think my first sentence should have read "Am I" rather than "I am"

The Medics don't attend the CAF meeting so they don't get involved 'Multiagency' is me & the school & sensory support

I'm sorry everyone, I should have replied to everything you all said but it's all a bit much just now

"practise"

I have my first therapy session on 5th July

DD has lost her voice again (which I am wondering if it is part of it)

I spoke to maudsley hospital who can't help as she isn't adult - they start with 2 week as an inpatient

I hope you're able to access the tests you want, and that they lead to some clarification of the situation.

If it does ultimately come to a psychological rather than a physiological cause, you have my email to get in touch if you so wish.

DandyDan I really am not ruling out the psychological - I just think there is something physical going on too.

I think the psychologist & I are disagreeing on when DD became 'distressed' - I believe it to be when she lost her sight, she believes it was previous to this.

Several (unbiased) professionals agree with me

I just think what I am concerned about is to do with all the illnesses she has had rather than specifically the loss of sight

& poor DD just had another knock - her cat was knocked over & killed today

I know

Pixie - I emailed you asking a favour (if you have time)