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Update - Bryn and I

Hi all - hope you're all well. I'm just trying to catch up on all the posts so sorry if I haven't replied to any of you're posts.

Me... Well as those of you on FB know I've been in hopsital for 3 weeks (in total - 12 days the first time, then 4 days at home, and then back in for over a week)... I have Guillaum-Barre syndrome.... bascially (and this goes on a bit so you can skip it if you want to).. I have pins and needles in my hands and feet, tingling in my legs, back and arms, numb toes, no reflexes in my legs and feet and weak ones in my arms, vertually no movement in my face (I seriously can't move my face apart from a little on the left side), no gag reflex, and no reflex in my eye (so you can shove something in my eye and it wont close -but if you see me please don't try!!), because I can't close my eyes properly my eyes water constantly, I have back ache and my legs are very weak so walking is difficult and generally I'm very tired all the time..... At the moment my condtion is 'static' as it hasn't improved over the past week but it hasn't got any worse - they are keeping an eye on me as the paralysis in my face can go to my lungs and my legs - although fingers crossed it wont. Anyway, they have let me come home until tuesday - fingers crossed they wont keep me in again but will monitor me in outpatients..... so that's me....

Bryn... we have been told by the paediatric doc that she is almsot certain that Bryn is autistic. Dave has signed the consent (as I was in hospital) to the next round of assessments to find how much he is affected - I'll let you know how that goes.

It's all be a bit of an emotional time but we're getting through it ... Thank you for all the lovely messages I've had - and Jules it was brilliant seeing you and the boys... hopefully next time I won't be in hospital!! xxxx


  • it was good to see you too - hope you're ok at home; - getting looked after and managing to get some sleep with no loud coughing all night!!
    did that polish lady ever have her op?
    How are the kids with you? I bet they're so excited to have you home - I hope their excitement and enthusiasm isn't wearing you out!
    Lots of love to you and a big hug for Bryn too, we're all thinking of you x
  • So sorry to hear this - is it a condition that will improve??? I have never heard of it before but it sounds nasty!

    I am sure things will come right with Bryn Autisitic or not he is still the same old Bryn! image
  • Oh my goodness Em, I had no idea! I've not been on facebook for ages. I am so sorry to hear how poorly you are. Is it something brought on by stress? Fingers cross you get better very very soon, sending you a massive hug - and definately no poke in the eye!!

    I'm glad Bryn has been diagnosed, even if it isn't what you really want I think now you now for definate what it is you can get support with areas he is struggling with, and as Maximum says at the end of the day he is still your gorgeous Bryn. xxxx
  • Hello.... it's usually brought on by a virus - my immune system started attacking my nerves as well as the virus- it is a temp condition but can take months or even a year to get back to being ok, and I might have some lasting nerve damage. :\(

    Jules - the Polish lady eventually had her op on the thursday so only 5 days later than they originally said!! :roll: By the end she had actually started to learn some English!

    As Jules will testify it wasn't the nicest ward (if there is such a thing) as I was on a stroke unit full of very old sick people... but the staff were lovely (well most of them!).... I'm very glad to be home for the weekend but I am finding it very tiring.

    As for Bryn - he will always be my gorgeous little boy (just like my 6foot Tristan is!! image ) and although he is exhausting and worrying at times I love him to bits

  • Ah Em, didnt know youd had to go back into hospital again, poor you. Really crossing my fingers for you that the condition will improve at super quick speed so you can start to get back to normal. Must be a total nightmare & really distressing for you, especially with the face and eye symptoms, dont sound nice at all image

    Im glad youre getting the support for yourselves and Bryn and despite the diagnosis being worrying & scary for you, you love him just the same and he will always know and feel that. Thinking of you all hun xxx
  • Saw you were in hospital but didn't know what it is .....poor you I had no idea it was that horrid image I too have never heard of it. Im really keeping my fingers crossed you are one of the people who have a speedy recovery (bit you're glad you didn't ahve the op at the begin ning of the year now)

    Replied on fb but will say again as the others did good to have it being seen to, they sound so good down in the SW not like here.

    Big hugs x
  • Hi Emma,

    I had no idea that you were in hospital with something so horrible. I hope you start feeling better soon. My mum's neighbour had that a few months ago and although they said he'd never be back to normal he is pretty much nearly there now so hopefully you'll have a speedy recovery too. Fingers crossed for you.

    I'm really glad you've had a diagnosis of Bryn so quickly, hopefully you'll get all the support you need..... what a time you've had, sending you big hugs!
  • Hope your weekend at home has been a tonic for you, and really hope it goes away quickly, sounds so horrid.
    Its good for you and Bryn they suspect ASD early, as this will help him with his future in school etc, more for ppl understanding the situation, rather than misunderstanding him and any needs he may have.
    Keep us posted on you both when you can xxx
  • Hope you have had a restful weekend and that they children have loved you being home.

    Don't worry about Bryn, agree with Ali, you will be in a stronger position to get Bryn the help and support he will need before he starts school, rather than waiting till he's there to find out.

  • Oh em, I'm so sorry, what a hard time you are having with it all. I really hope you're a speedy recovery case and that you are being well looked after. As for bryn, as everyone else said it's great it's been spotted early as you can sort out any additional support you may need before he's already in school and desperately waiting for it. Really hope the further tests are quick and not at all stressful for any of you. I know it's not easy to hear that maybe your baby needs help but they'll always be the apples of our eyes and the love we feel for them is overwhelming regardless as you know. How's his speech going? - I was on a makaton course the other day and there was a mum there whose son is autistic who said she was finding signing a great tool to use, i have to say I'm loving it too.
    Take care and hope everything falls into place for you with everything very soon x
  • Hi Emma - hows your weekend been? Hope you doing ok and good luck for tomorrow, much love xxx
  • Hi all ... well I have been officially discharged from hospital!! image I'll have several outpatient appointments including more tests but that's not a big deal. I have been told not to expect miracles and that it's going to take quite a time before I'm ok again, (he was taking months rather than weeks) but in the meantime I'll just have to take it easy and rest (sounds good if not slightly frustrating!!).

    Thank you for all your lovely words and support - as you know, as far as Bryn goes that fact that he is autistic doesn't change how I feel about him and it never will - it just means he'll need an extra bit of help at times and he's already started getting that - so in that respect we're very lucky plus he is the most adorable little boy in the world (no offence to those ladies that have boys! :lol: )

  • Really glad you have been discharged, how are you feeling now generally? I hope you are getting plenty of help and support at home.

    Can I ask whether you got the swine flu jab or not? When you said what you had been diagnosed with it rang a bell with me but it wasn't until I googled it I remembered why. Apparantly when the first swine flu jabs were given (in the 70s I think?) there was an increase in the number of patients who got Guillaum-Barre syndrome but there was never a definate link made to the vaccine as it wasn't a significant enough number. Just wondered whether it was a coincidence or whether you had the shot? xxx
  • Hi Liz - no, i didn't have the jab because I have a bad reaction to the normal flu jab so I wasn't going to risk it. I'm ok thanks - very tired and weak and I ache everywhere I'm just hoping I get more movemet back in my face asap - it's really odd not being able to smile/frown/raise my eyebrows etc - I have started getting some on my left side so hopefully the right will follow soon! Are you all fit and well? xx
  • We're all good thanks, for once not one of us has a cough or cold - touch wood! There seem to have been so many bugs this year.

    It must be a very strange disease to have, I really feel for you. Does it feel like you are totally numb in the areas affected? Fingers crossed that the left side continues to improve and that the right side follows suit. xxx
  • Glad to hear you're all well - you're right there have been loads of bugs round this year.

    It is very weird - the areas aren't actually numb (apart from my toes) they just wont move! One of my sister's said it was so odd to hear me laugh but to see no expression on my face. Can actually raise my left eyebrow a bit now so I can do a mean roger moore impression!! lol Take care xx
  • hello my love - havent been on fb either for ages so hadnt seen youd been in hospital - my god that sounds scary but glad your out and on the mend....!!!

    as for bryn he is still your little baby and its good its been diagnosed as you can get the help needed to ensure he doesnt miss out on anything etc....

    can i ask - what made you think he was autistic????

  • hello my love - havent been on fb either for ages so hadnt seen youd been in hospital - my god that sounds scary but glad your out and on the mend....!!!

    as for bryn he is still your little baby and its good its been diagnosed as you can get the help needed to ensure he doesnt miss out on anything etc....

    can i ask - what made you think he was autistic????

  • Hi Star... there were a number of things that made me think that he was autistic but it was his pre-school that really picked up on it ...

    He can't explain what he wants - he doesn't tend to point to what he wants. His language skills and speech is delayed - although that is starting to improve. He doesn't follow directions (he'll never do anything you ask him too). At times, seems to be deaf - but he isn't. He seems to hear sometimes, but not others. He didn't point or wave bye-bye (that has always worried me!) - again he's starting to wave now but not always. He seems to prefer to play alone and he won't sit with the other children at pre-school. He gets things for himself only (typical boy!!). He seems to tune people out and he walks on his toes. He has a fascination with lights and coat hooks and will just walk around and around looking at them. He can be hyperactive and if he throws a tantrum he can be almost impossible to deal with (they can be quite violent at times too) Also whenever we go to someone else's house he barges straight in - he doesn't look at anything around him - He doesn't even acknowledge my mum's and my sister's dogs. He's better with routine and if that's thrown out he gets upset.... erm I think that's about it.... he is very loving though and does make eye-contact which isn't typical but the spectrum is so huge that there are so many different variations. :roll:

  • Hi em just wanted to say I hope you're feeling more and more like your usual self as each day passes x
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