fed up and need to off load.

[zebradebra]

dd became unwell last may age 13 months. Lots of worrying symptoms such as facial droop, falling, behaviour change, suddenly unable to move leg etc etc. We were first told it was likely to be epilepsy. Then they said maybe not and referrd her to Kings in london. The specialist nurse wanted to refer dd to on call team at a leading childrens hospital. Local GP decided that as i have a history of mental health issues i must be making everything up ( despite dh and i filming most of dd symptoms). She didnt bother to look at dd medical history and just decided that i was randomly phoning leading childrens hospitals asking for a referrals.
She disclosed incorrect medical info about me to all of dd consultants. I was then scrutinsed for fabricating dd illness. Things got very messy. Fast forward a year and finally we are being taken seriously again,but its all got very uncomforatble forthe local gp surgery and local consultant. Turns out dd was most likley suffering from mini strokes and she has now developed dystonia and needs speech therapy, physio etc. She needs another brain scan and is at risk of a major stroke. I am destroyed, exusted etc etc. DD now has lots of problems. This is all such a mess. It just feels really unfair.

I'm so sorry to hear of the terrible treatment that you have had. I've no experience of the conditions that you have mentioned but wanted you to know that we are always here if you just want to offload or scream. Hopefully someone with more knowledge of the conditions will be along soon.

How stressful for you. Are you able to change surgeries?

Again I didn't want to post and run but can't help directly with the problems you are experiencing, but wanted you to know that I am and for the treatment you have received.

You can make a complaint about the GP if you wish.

Oh how awful

I know you are exhausted and no doubt very worried about dd but you could contact your local PALS for advice and to complain (I think they help). It's an awful thing to have happened and your family are owed a big apology & dd needs to be able to access the best care.

I don't have any personal experience of a child having strokes, but have had to battle with GPs in the past re; misdiagnosis of asthma with my (now adult) DS

and i can make good and

welcome to SN {{{hugs}}}

Wow, just pressed refresh and saw your responses. Thankyou!! I really want to complain and i am considering the GMC. Unfortunatly there is no other surgery we can register. The sad thing is i think we will have to move, especially as dd will need ongoing care and support. DD just woke from badly timed snooze. Thankyou again [hugs]

I am sorry your family and your lovely dd has been treated this way and send you big hugs and virtual boxing gloves for the wallys that didnt believe in you.

I dont know anything about stokes in children but I do have a brother with dystonia. There are medications and excercises that can allieviate symptoms and the earlier they diagnose it the better.

My brother was not diagnosed until late in life and suffered for years but to help you feel positive he is in his 40s now and nothing has or does stop him leading a full and busy lifestyle. He is married with children and worked all his life from owning his own fishing vessel, to racing, to climbing cliffs to running his own business.

If I can get any helpful web links for you when I see him I will post them here :)

Thankyou coff33pot i really hope my dd has the same outcome. Your brother sounds amazing. And, thankyou for the boxing gloves, i think i will need them!!
zzzzz i have piles of paperwork and even resorted to recording phone conversations. I have some very intresting conversations recorded! I think i have a case under part 3 of the equality act as well as defamation and possible clinical neg. But i would walk away from all of it in exchange for dd getting the care and treatment she needs and for me to be treated with more dignity and respect!( although that is starting to happen). At the very least they need to apologise. Its so hard to find the time to persue as i am with dd 24/7. Not able to place her in nursery atm until we know exactly what support she needs. The whole horrible saga led me to have a breakdown in december. Its one thing having a poorly child but having a poorly child and nobody believing you is a living hell. It felt like i was wading through treacle and screaming but nobody could hear!

Your dd has done amazingly well! Its hard when in the thick of it all to see positive outcomes, so thankyou.

Hi Zebra, very sorry to hear about your story.

I have been myself the victim of medical neglect in the past, hence my 'advice'.
You say you are exhausted, so you need to prioritise. I would make a list
about a) what steps do I have to take to get help for my daughter as fast a possible and b) what do I need so that I can accept what has happened to me
(not being taken seriously). I think you should complain, involves PALS etc.
and follow if up in a timely manner. You have to do this for yourself. But you have to make sure first that all steps to address your daughters issues are taken first. It's so hard when the day only has 24h and official complaints take a LOT of energy and time and normally the process is long and tedious and we do not get an apology in the end. I second to take notes right away so you have everything in place when you are ready to go down the road of complaint.

You and your daughters welfare come first!

Thankyou glimmer for your post and so sorry to hear you have been a victim also.
I do need to organise myself and agree that having everything in place ready is a great idea. I am so angry both for me and dd. She has suffered the most because of one gp's incompetence and ignorance. Found out today she is having her MRI next week to determine if she has a life threating syndrome. She should have been tested for it months ago. A complaint doesnt seem enough, like you say i probably wont even get an apology. It makes me sick. I would ideally like to take the gp to court but not eligable for legal aid etc etc. Then there is the GMC option. Any advcie of which route would be best?? The oath doctors sign when they first start practicing states " first do no harm" - what a joke!

Sorry to hear you have been treated so badly. I do think you should complain to PALS as there needs to be some comeback on your GP.

We also have problems with our GP (who doesnt believe in ASD ) and so we never go. We are lucky that we see our Paed every 4 weeks, so all issues are dealt with there.

What a terrible ordeal for you. Have just showed your post to DH who is a lawyer and does lots of medical negligence work. He says you have a very strong case and you must seek advice from a very good solicitor who specialises in medical negligence. Speak to the law society and ask for recommendations on which solicitor to use. You can use any money you win to make your DD's life better.

Thats great Holy. Thankyou thankyou thankyou x
Voidka Thankyou for your post. Sorry to hear your have an ignorant gp also!