How could that possibly have happened in 21st century England?

[Gorionine]

Does anyone remember that awful story?

happened in 2005

It was on the news yesterday because of ongoing inquest.

It really saddens me a lot to hear all these experiences of parents who have not been taken seriously by doctors with sometimes dramatic consequences. There is lot more of them than the odd ones we hear of in the media, saddely.

As I said previously, more should be done on DR's training about actually listeneing to parents concerns. Technofairy, I so agree with you that we need to feel more empowered as parents, I think we were drilled to believe doctors know it all and tend to forget that they actually do not and that when it comes to OUR DCs we DO probably now better than them, not about the particular name of a disease but about how BAD it is and how IMPORTANT it is to get things thouroughly checked!

BTW Technofairy, carry on ranting, it does help other people!

I also found that it was very easy by googling to turn up online publications of articles from medical journals which gave information on dd's condition that the doctors had told me was not available. IMO all doctors should have compulsory courses in efficient googling.

I agree - questioning is essential - my 20mo niece started to get ill one November, my sis took her to doc, went to hospital, she had sickness and loss of balance so they diagnosed tonsilitis (WTF? Her throat wasn't sore, her tonsils weren't inflamed) OR teething probs.

She didn't get much better. She got worse, balance-wise, and she had a couple of fits. My sis told the GP who didn't really believe in the fits but said they were probably febrile convulsions (neglecting to mention that a fever should be present for febrile convulsions)

By Christmas Day she couldn't walk (no balance, feet flexed semi-permanently) and was sick but then could eat straight after. And she had a fit while doing Row row row your boat. I was convinced at this point that she had something neurological, but thought maybe it was a blood clot (she had smacked her head so hard so many times from falling over due to loss of balance ) I tried to persuande my sis to take her to A&E on Boxing Day but she wasn't having any of it.

Eventually, a couple of weeks later (and after a few futile trips to the GP) she was taken to a Paed A&E unit (UCH) where she was diagnosed with a brain tumour that was causing massive intra-cerebral pressure - much longer undiagnosed and she could have had real problems, possibly even died - as it was, they kept her in and put a drain (shunt) in the next day - the pressure release shot fluid all the way across theatre, apparently. 2 days later she had the golfball sized tumour removed and she is now ok.

Sometimes HCPs really don't know best and you have to keep asking/pushing to find the truth.

Her consultant neurosurgeon said that it wasn't surprising that the local hospital/GP hadn't recognised the symptoms (WHY? Even I could guess it was neurological!) because it is unusual in one so young and they aren't likely to see many cases - he even told us about a neurosurgeon whose 14-yo son had a brain tumour and it took ages for him to realise, he just thought the boy was trying to skive from school with "fake headaches" .

And I second what Technofairy said ( for you TF - glad your DS made it through) - watch out for loss of balance, light sensitivity, waking up with a headache every day - my niece cried every time she woke up but couldn't articulate why, and she couldn't tolerate anything on her head, hats, hairbands, nothing. Push and PUSH - it could be an inner ear infection but it might not be - they tend to only last a few days anyway, so anything over a week, get pushing.

Thanks everyone - and thumbwitch, how awful! I know our situation was bad enough but at 20 months old? Doesn't bear thinking about!
Am very that you and your family had to go through it too.

At least our DS could tell us about his symptoms and how he was feeling - am for you too and very glad that your niece made a good recovery too. I forgot to mention the fluid build up, good call thumbwitch, and it's that that causes the majority of symptoms.

My DS ended up having his drain put in twice because after they'd done the first one he tried to kneel up on the recovery trolley and disloged it so they had to take him down and do it again at 2am. Bugger me, if I have to re-write a document because I've not saved it or whatever I get seriously pissed off, but re-doing an operation in the middle of the night when you've been on duty for 20 hours and want to go home - well that's the sort of doctor that I still have unswerving admiration for!

Am sick of hearing that rubbish about GPs and hospitals not recognising the symptoms because they are rare and a GP might only ever encounter one in his/her career. Utter bollocks. Our GP recognised the symptoms straight off and referred him but it beggars belief that a hospital paediatric unit wouldn't recognise the symptoms of a brain tumour.

We were told by DS's neurosurgeon that our hospital, which is the paeds neuro surgery centre for our part of the county, carries out surgery approximately every ten days for paedriatric brain tumours. And they still can't recognise the symptoms? My arse!

Think (know) I might be ranting again ladies... yes, red wine is involved

Techno, thanks for the kind thoughts.

I would add though, that our local hospital doesn't have a major paediatric unit - all paediatric surgery is done elsewhere (I had to take DS up to London to get his inguinal hernia done at 8wo). My niece was operated on at KCH - I can't remember exactly how many ops the consultant paediatric neurosurgeon did, but I'm pretty sure it worked out that he was doing one a week at least.

I am more angry that the doctors didn't really believe the symptoms my sis was describing - I have heard that happen before with an adult who had a brain tumour too, someone I worked with, her husband - the GP and then the ambulance people refused to believe he had fitted until they saw it with their own eyes!

But then my sis was probably quite diffident about the symptoms - she is one who doesn't like to push, who believes what she's told by docs (even when it makes zero sense) and doesn't like to "make trouble".

I agree though - it is the work of a minute to look up dizziness, lack of balance, light sensitivity, sickness and fits - put them all together and there really aren't that many options! Especially over an extended period.

Anyway - all's well that ended well with my niece and I hope someone may benefit from her experience.