Has anyone else's child had Guillian-Barre Syndrome?

[lainey1802]

My 15 year old son got struck down with this approx 4 weeks ago and we have had a rough time with being in Southampton Hosp now for physio rehab to get him back on his feet again. He was really very poorly and on a ventilator in PICU but thankfully he is now making progress, albeit it a slow road.

I would be interested to hear from anyone else that has had it to see what their recovery period was, with special needs children it's obviously a whole different ball game.

hi there i am also in southampton and very sorry to hear your son is ill picu is a fantastic place and my daughter was there for a while.

hope he gets well soon, try contacting portage they are great with special needs or call up naomi house they always have numbers for people that can help.

can you also explain what Guillian-Barre Syndrome is, this is something ive never heard of

regards

sarah jane

Hi!
It must be really frightening and hard for you all.
I do not have a child that has suffered GBS, but shared a ward with a teenage girl recovering from this devastating parrallising illness (we were transferred there from HDU/ICU the same day). What supprised me was how fast things started to improve! I could see major changes in her almost on a half day basis! She was unable to walk at first, then managed a few steps with a frame and was going at quite a speed 3 days later. Her facial parallisis showed rapid signs of recovery ( so she could smile again) and her speech got clearer. She was hoping to go home after a week of further physio, but a steady recovery was anticipated.
I hope your son recovers quickly and fully.

Hi, my friends daughter had GBS & was very poorly for a long time, had a very lengthy stay in hospital & an extremely slow recovery.
She does have some long term disability (not sure what the formal dx is) that seems to effect one side (poss hemiplegia).
But she is very active, confident & doing well at school.
She is 8yrs old & think it was about 3 yrs ago now.
Physio has helped her.

Wishing your son a speedy recovery, don't forget to take care of yourself too x

Hi my sons friend was hospitalised with it when he was about 4, it took about 6months for him to get fully mobile again

An adult friend of mine had it about 10 years ago. She made a full and complete recovery, having been given a very poor prognosis initially.

Hi Lainey,
Am sure that I know you in RL (real life!) Not as bad as it sounds - I used to look after C for you, and can't belive that that little boy is 15. Don't forget the messier he comes home the better! Hope you guess who I am! Hope that he is making a good recovery. I am really sorry that he has had GB because he has had enough to cope with already and seems to have become a lovely young man. You have been in touch with my mum recently. Hope to be in touch with you for a better chat sooon. lots of love M xxx

Thanks for all your messages (and yes hamsterlover I do know who you are!) regarding Guillain-barre syndrome. I am pleased to report that after a long 6 1/2 weeks we are finally back home. My son is making progress and got alot of upper body control back and is now walking further with my help - 162 steps so far without stopping. Progress has been slow and we now just have issues with reflux left so its off to the GP tomorrow morning to see what can be done. Recovery is usually alot quicker from what I have been told but as he has special needs and an underlying rare neurological condition there are no exact bench marks to place him on.

After putting on my red shoes and tapping my heels together I can finally say - there's no place like home! (Wizard of Oz!!)