General Chat

Hi Ann
My Grandson who is now 6 years old had Gullian Barre Syndrome when he was 2 years of age.
MY son took him to Doctors on three occasions and he kept telling him it was a virus he had. I told my son and Daughter in Law to take him straight to the hospital as he could not keep his balance.
They admitted him immediately
He was in hospital in Intensive Care for three days before they came up with an answer for us. Finally saying it was Gullian Barre Syndrome. It is very rare and only occurs in one in every 100.0000 people.
Most uncommon in Children. The doctors said she had never had a case of it before in her 30 years as a doctor.

My Grandson was just like a rag doll and could not sit up at all. It affects all the nerves and can cause paralysis.
My Grandson was in Intensive Care for 3 weeks and
in hosptal for a further two weeks then it was a long long process to get him back to what he was before. Lots and Lots of Physio from his parents daily and the outpateints 5 times a week also.
It took almost a year for him to recovery from it.
He was very lucky as it was diagosed early and they said if it had got him in the throat he would have had more problems.
They said he was a fighter and they were surprised he got back to normal in such a short time.
He still has yearly check ups but thank god he is a normal little boy. Runs rings around everyone and full of energy

On the positive side Australia boasts a World Champion Lawn Bowler called Kelvin Kercow He is in his early 40s now and suffered with Gullian Barre Syndrome. He bowls with a walking stick for support. He took up bowling to help recover from Gullian and for exersize
So there is certainly hope. Kelvin is proof of that. He had to have a trachea so I presume he had throat problems
but I know it will be a long process and lots of love and care will be needed from the family.
Ann I wish your cousin all the best and hope for a full recovery
Take Care
Regards
Jackie

I shall be collating all this information in my next letter to Mark - every time I go to put a letter together some other kind person comes on the thread and adds something which is fantastic!!! Thank you all so very much

Ann XXXX

Yes, actually know of two people that have had this both recovered but a long slow process. Diagnosed fairly quickly which helped.

A Liverpool football player Markus Babel had it around the time one of my friends did maybe three years ago?

Hope Mark improves soon.

Linda x

Have forwarded you a message from one of the people I know that has recovered from this condition hope it helps.

Linda x

thanks Linda - just received it and replied - people have been so kind and the prognosis does appear to be very encouraging - have written to Mark today giving him most of the input I have received in the hope that it will lift his spirits

Ann XXXX

My cousin is still in Cumberland Royal Infirmary in Carlisle - Intensive Care at the minute as he has a chest infection - but I actually was able to speak to him tonight - he sounded in fairly good spirits and has some movemnent return to his shoulders and his hands though not in his fingers yet. He is hopefully being transferred back to his home area of Weston Super mare in the next three or four weeks - could be Weston or Frenchay in Bristol Just thought I;d let you know after everyone was so kind in posting encouraging thoughts

Ann XX

I'll keep my finger crossed for him, xx

Ann so sorry your to hear news just googled it, it explains, sorry never heard of it before i wish him a speedy recovery take care.

Joan G

thanks folks - I feel far more positive since I've spoken to him - he is so brave - no sense of self-pity at all, just sounded as he always does

Well Mark is still in Carlisle, spent two weeks in Intensive Care and had to have a tracheotomy cos he couldn't breathe but is now back on Neuro-Rehabilitation ward. Spoke to him this evening on the phone [someone held it for him] he sounded very upbeat in spite of everything and is beginning to get some feeling in his upper body but unable to use his hands or arms yet. He is hopeful that in the next few weeks a bed will be found for him in Weston-Super-Mare where he lives - he will have to be transferred by air ambulance or helicopter probably as it would be too far by road, so fingers crossed he'll be back in his own neck of the woods soon and I shall be able to visit him from Cardiff. Thank you all for your input and good wishes by the way.

Ann XXXXX

I really hope he improves so much more knowing that he is on home ground.......he has come so far already.......x sally

was speaking to a new contact this week (not GR)and his wife who was physically very fit came down suddenly with it. she was unable to feel from the waist down and had loads of tests and saw a neurosurgeon and now been confirmed as GUILLAINE BARRE SYNDROME ,(sorry couldn't spell it so copied & pasted) Shes now going to be transferred to another hospital for long term patients cos they need the bed. Shes getting daily physio and the outlook is very hopeful for a full recovery.
Incidentally our daughter got diagnosed with Hodgkin's Lymphoma in 2006 and that is linked with Guillaine Barre. Seems when she had a chest infection some two years earlier that went on and on and from which she never fully recovered it was Guillaine Barre that didn't develop fully and its a known factor in Hodgkin's. some get it if Guillaine doesn't fully go its course.
Hope Mark continues now to progress in the right direction

Hi Ann,


Why is your lad in Carlisle? its not far from me.


Hugs,

Caz xxxxxxxxxxxxx

Hi Caz - he was on holiday in the Lake District when he fell ill, was taken to Whitehaven and then transferred to Carlisle!! - he's my cousin by the way!
Thanks for your interest and to everyone else for their input which I do pass on to him

Hi Ann.... glad that Mark is still very upbeat... when he comes down South to Bristol, don't forget my offer to take you to visit him still stands.

Love

Daff xxx

thanks Daff - very kind of you indeed and much appreciated

Ann XXXXX

well the good news is that Mark is beginning to get some feeling back in his shoulders and arms and actually had a bit of a twitch in a knee - it is going to cost £5,000 for a helicopter to transfer him from Cumbria Royal Infirmary to Weston super Mare and they are arguing over who is going to pay for it - seems to me that half each should do the trick - we'll see. Don't think he's ever had anything off the NHS before so he's due some payback methinks!!

Hi Ann,
I am so pleased that Mark now has a positive reason to fight the good fight, he has been very patient and is due a boost to his moral..a move closer to home will certainly lift his spirits and help him on his way to full recovery, please give him my kind regards.
It will certainly be a boost for you also having him that much closer.
If you need a wee donation to assist this helicopter transfer charge just let me know, okay.
Take care xx

JoyceP

That's really encouraging news Ann.................I hope they soon stop arguing about the cost and move him, it will be so much better for you all.

xx

Pleased to hear that he i starting to get better. I am sure being nearer home will also boost his recovery. why don't they do it and quibble over who pays later? Hope they don't make him wait too long.

Ann
Glos