Mini Fio2 has a cause and preliminary diagnosis at last!

[Fio2]

her problems were caused by the birth, they see no other explanation. She has to have an MRI (as I said before, but it will now be closer under sedation at a local hospital) She says she displays symptoms of having brain damamge but she isnt displaying as typical CP, but may be a rarer type or other type of brain damamge that has occured. obviously it cant be confirmed until the MRI but she said her porevious CT scan would have been as much use as a choclate teapot.

so thats about it.

She has prescribed melatonin and was a lovely dr aswell.

DD was in her element, so much so she felt the urge to chat to vic and nancy reeves in M&S, how embarassing

Glad you had a good experience, that you were treated with the respect you deserve and that you feel you are getting somewhere

I am glad that you are making headway with dd's diagnosis. Nice that she was such a lovely Dr, it makes such a difference.

Fio2, DS showed signs of brain damage but his brain damage isn't typical either, he has damage in areas I can't even said..... but he still has CP, just not a typical version, he is affected in all four limbs, more in his legs, and more on his left side.
Glad you have a diagnosis of sorts.

Fio.. I didn't realise Little-Fio had never had an MRI! DS has one at 18 months which showed nothing except 'features of immaturity' (which just meant that he wasn't doing what other 18 month olds were.. so not as many 'creases' on the brain itself.) No sign of damage though. And his 'cp' is just a description.. not a diagnosis. His paed does not even call it cp.. she calls it a 'four limb motor disorder..'

He is due to have another MRI shortly.. no appointment yet but tbh, not expecting it to show any 'damage' that will give us a diagnosis. Meanwhile.. there clearly IS damage. or something..

So suppose it's possible that your DD's MRI could in fact not confirm anything.. although if they have said they think it will, it's obviously a lot more likely than with my DS..

Undiagnosed conditions in kids who clearly have a diagnosis waiting to be found - or discovered are a nightmare aren't they!

Good luck.. I hope it gives you the answers you could do with.

SJ x

i was wondering whether we see the same person sleepyjess did you get my email btw/ i am not meaning to look like some mad stalker...

i realise that she may never have a strong diagnosis but her saying she thought it was the birth means alot to me as it what I have always thought, the genetic dr said the same - so it looks like a strong possibility

i have even started feeling broody again shame as i have no-one to mate with atm

and sleepyjess I think my dd and your ds sounds VERY similar indeed! Infact they have most probably met one another at some stage as have we....

Not had an email Fio...? I was offline for a month until about 3 weeks ago.. did you know? Have also been online hardly at all lately due to various hassles.. (sister ill in hosp etc.)

SJ x

sorry you have had so many hassles i could ring you one of the days but would that look mad?! or am i being paranoid. I emailed you because dd had been to fav in the soft play area the other day and loved it, I was thinking if you ever have a free minute we could m,ost prob meet there for an hour. I am going to some of the SNAAP things aswell and wondering if you were going also, as it would be weird to just bump into you and not know...i feel like some sorrt of lunatic

Fio I do NOT think you are a stalker or a weirdo you daft bat .. and yes lets meet up at the play centre..and no we are not doing any SNAAP things these summer hols because none of the dates were free... they are doing lots of different things which I seemed to have booked up months ago somehow..

Do you have any free time in the week to go to the play centre?

SJ x

I have some tickets for tues on margate beach if you want them as we have had to drop out

yes next week would be good, shall i ring you on monday? tell me the best time or I will just leave a message with my number and you can ring me back?

Thanks for the offer Fio but DD has a party to go to on Tues.. one of her little friends from dancing is having a 'end of nursery/starting big school' bouncy castle party! Her mum is clearly a gluttnn for punishment.. I find birthdays stressful enough!

Yes ring me.. any time will do as you can just leave a message if we are not in.. or text.. I will email you my numbers. Must just see if I have your email addy still re recent system change..

SJ x

dont worry i will only say i am fiona and our children go horse riding together i wont say i am some mad weird woman off tinternet with hairy feet and no children

Maybe you are not even a woman??!

My emails are up the creek... I can't handle Windows XP.. it is too much of a culture shock.. please email so I can email you back with appropriate numbers... and I'll risk the hairy feet..

Hi fio

Glad you are finally getting some answers and that you saw a good dr who has taken dd's sleep problems seriously.

I suppose this is what you have suspected for some time. Are you any nearer to getting your notes from your previous area?

no caroline, they still havent been sent on and we have to make an appointment to see a lawyer

You've waited a long time for this, fio - I'm glad you are finally making some headway.

fio - BIBIC have some clinical negligance legal specialists in their chat room on 10th August. I will send you details if you like. You don't have to have been to bibic to join, just need to register for the chat room.

thanks HITC that wpould be great. I have an appointment next week up in London to 'go over' things

Fio - that is really positive news. I am so glad for you that you are finally getting somewhere with this.

I've been off work for a week so haven't been mn'ing and missed this!

HITC - would you mind sending the details of tomorrow's BIBIC chatroom to me aswell please. The law firm we are using have been dealing with dd's case for 4 years now and I think are doing a decent job, even though things are moving rather slowly and we had to change lawyers twice due to internal moves. It would be interesting to reas other experts opinions on how things should be progressing.

Sorry to be cheeky and apologies for the hijack Fio!

did your dd suffer birth trauma then mandy ()

Might as well post it here incase of use to anyone else.

BIBIC chat room details:

Wednesday 10 August 2005, 5-7pm ? Clinical negligence

If you would like any advice on this matter we have two expert solicitors on the line waiting to talk with you. Both of the solicitors who will be chatting today have extensive experience in the field of brain injury and cerebral palsy amongst other things. If you would like to see their profiles I have attached them for you in a pdf format so you can see who you will be speaking to! (If you can?t open the files it means you need to download Acrobat Reader, which is a free programme available over the internet).
If you need advice on any other legal matter, please feel free to drop in ? if we can?t answer your question because it is so specialised, we will know a person who can and will take it back to them.
This advice is free so please take advantage of it.

To register click here: www.bibic.org.uk/newsite/general/chatregister.htm

I can't attach the pdf's unfortunately and obviously you will need to copy and paste the url rather than 'click here'. If you are interested I would try and register today as it can take a short while. Good luck!

Thanks HITC

Fio - lol @ Mandy!!!

Yes. As well as her WS, dd also has CP (a right sided hemiplaegia (SP?)), caused by trauma at birth. It is quite difficult to separate out the symptoms of the two conditions as there is a lot of overlap.

Must have missed this Fio - glad you are getting somewhere (anywhere!?!) at last.