DD has Guillain-Barre Syndrome - where do I start?

[CharCharGabor]

Hope it's ok to post in here. DD1 was in hospital for 8 days where she was diagnosed with Guillain-Barre Syndrome. She received immunoglobulin treatment which she responded well too. At the start of the week her jaw and hands were weak and uncoordinated and she was unable to weight bear. She was also suffering from intense pain all over most of her body.

Now, her jaw and hands appear to be working normally. She is still unable to weight bear although she can now move her legs, which she couldn't before. She needs to be taken to the toilet and finds sitting on it painful. Carrying her hurts her legs and she has pins and needles in her feet. As of this afternoon she can sit upright for a short period but then her back hurts and she needs to lean back. She can sit in a pram, which is how we are getting her around. She was on a lot of painkillers in hospital including codeine, but is having a lot less at home and no codeine at all.

DD will need intensive physiotherapy. She has had a session today and has another on Friday, where I will ask her for a plan for the future.

I went to see her head teacher yesterday to update on her condition. She said that she would mark DD as working at home on the register, and something about home tuition?

Basically, I am unsure where to go next. Who do I contact? I have no idea where to start. I feel she would benefit from going back to school sooner rather than later, but it has to fit in with the physio. How do you organise a tutor? I have found a number for my local parent partnership, is it worth speaking to them? What about the senco?

Sorry, so many questions! I have been thrown in at the deep end and I just want to do the best for dd1.

Sorry, that is totally garbled! I am still in shock, this time 2 weeks ago we were painting pictures and dd was recovering from a virus like most of the other children in her class.

Hi sorry to hear about your Dd and I hope the physio helps.

Have the medics said anything about returning to school or just left you to get on with it?

If they haven't but you feel it would be best for her to be back in school ask for a meeting with the head and SENCO. You will want to discuss adaptations to help her cope at school, leave of absence for her physio appointments and possibly a phased return to school. How old is your Dd.

It is actually up to the school to contact the LA about home tutoring if that is needed although not all schools realise that. You can contact the LA yourself and ask to be put through to the relevant department. Home tutoring is usually for limited number of hours a week though.

Hi CharChar, so sorry to hear about your dd. What a very stressful and worrying time.

How old is she?

I would book an appointment with the SENCO and talk about the practicalities of returning to school. Depending on what he/she says you might want to post again about the rights of your dd.

What a shock for you. Have you been given a predicted timescale? If you think this will go on for some time, then you may want to ask that she returns to school with TA support, if you think that's in her best interests.

Push the school to do sort out a solution - don't expect them to come up with one without you pushing. The very cheapest thing for them is to have you accepting the 5 hours tutoring per week, or worse, just sending work home.

If it is going to be a much longer term issue, then you could get a wheelchair from wheel chair services, or on loan from Red Cross and apply for a Statutory Assessment of her Special Educational Needs, arising from the medical condition. Statutory Assessment takes 6 months though, so if you expect her to be recovered by then, you may be better asking if there is a pot of money for short-term needs.

take it slowly, dont rush her back to school.
My friends daughter had GBS, has made a good recovery despite being very sriously ill & in ICU & in hospital for a long while.
Follow the physio & when she is ready to go back to school maybe a phased return will be best.
Give yourself some rest & recovery time too.

Thank you for your posts :) Sorry I forgot to say, DD is 5 and in year 1. The doctors at the hospital said there was no reason for her to be out of school, but that it would need to accommodate the many physio appointments. Annoyingly I don't drive and it takes about half an hour on the bus to the hospital, which is going to affect her ability to attend school.

I feel I would like to keep her at home for at least a few weeks, to allow the pain when moving her to ease a bit and also because I don't want to be away from her! I don't know how that works out wrt her having to be at school though? She loves school so much and I don't want her to be away so long that all her friends move on without her, but at the same time I want to do things at her pace.

I will speak to the physio on Friday then and try to get some kind of a plan on place, and then try and organise an appointment with the senco.

What about wheelchairs as well? She would need one for school, but how do you go about getting one? so many questions, I just have no idea!

Thank you again :)

Sorry, I missed your post mymatemax! I definitely don't want to rush her, she has been through an awful lot and I want to hold onto her tight (without actually touching her because it feels horrible apparently). I don't want to get into trouble for not sending her either, which is why I want all my bases covered! :) I think phased return will be best. She has very disturbed nights, although she is only up hourly as opposed to every 5 mins last week. Thank you :)

The physio should be able to arrange a wheelchair, if you dont feel she is ready to go to school, then dont send her back yet, she's five it wont do her education any harm & will help you both recover.
Maybe get the school to send some reading books home for her.
Cuddles & TLC alongside the physio & exercises will help.

Could you see if the hospital would let her do 'hospital school' to coincide with your physio visits? It might take the pressure off but give a bit of input to keep her in the loop.

as pps said, physio should help with the wheelchair, although it's likely you'll have to ask, they may have a spare you could use for short term or might refer onto wheelchair services which can take some time. You could also ask if your dd could have the physio elsewhere in the community or even at home or school, most areas have a community physio team that use local clinics and do home visits. It may not be possible but worth asking.

Thank you all :) I am definitely thinking lots of cuddles are in order. Finally I can give her a hug without hurting her as long as I am super super gentle so I am getting in as many as I can. What is hospital school Lougle, is it to do with the teacher who comes on the ward?

We saw the physio today who said physio will be every other day for the foreseeable future until she has been fully assessed. Apparently dd will not be entitled to a wheelchair from wheelchair services as it is not permanent so we have been given a list of places we can contact about one such as the red cross. They are investigating physio within the community for us but suspect it will not be able to be as frequent, which is needed atm. The hydrotherapy pool in the area is broken they are hoping it will be fixed in a month or so.

I have just been doing some reading about gbs and discovered that the length of time for the plateau is a good indication of how good the recovery will be. Apparently a plateau of 14 days or under usually results in a full recovery. DD's was less than a week so I will try to comfort myself with that. ATM I am not so bad until she goes to bed, then I convince myself she will relapse in the night and stop breathing :( her sleep is a lot better than it was though, and she is needing less and less meds all the time.

I am still in shock I think. How can life change so much in two weeks?

I am going to ring the school on Monday and arrange a meeting with the head and senco. Even if I don't want her to return for a while I want to sound them out and see if they will be supportive or a problem.

Thanks again for all help, as soon as we got the diagnosis on Friday I was thinking I will post on MNSN for support and it has been v helpful :)

Glad that we could help and that Dd is making progress.

It must be a shock to so suddenly have a child with significant extra needs.

Hope the meeting goes well on Monday.

Keep posting if only to offload and be kind to yourself. Dd will need you to be well for quite a while it seems and your needs are important too.

"What is hospital school Lougle, is it to do with the teacher who comes on the ward?"

Yes, I don't know if they'd let you, because DD isn't an inpatient any more, but I just thought that if she is going to miss so much because of physio, it might help.

The other thing you may be able to do, is speak to the LA and ask about their home-tutoring policy - you may find she's eligible for an hour's tutoring (age appropriate) per day when she's off if it is so very regular.

It is a shock, I am going through a rollercoaster of emotions hourly, it feels like. It just goes to show, you never know what may happen. Silly things are affecting me, like an advert email from clarks because she can't wear shoes ATM. Silly, really.

I have emailed the la enquiring about home tutoring. I am fearful of the battles that may be to come, to get dd what she needs. I am worried we will fall through the gaps in the system. I am not sure how they define gbs, or of her legal rights, or anything really.

She is amazing though, she is trying so so hard. She is still smiling and happy, and I can't comprehend how. She says to dd2, " come closer, because I can't walk yet can I?" How can she accept it like this? I hope this will stand her in good stead for the future, she has a hard slog ahead of her.

www.gbs.org.uk/index.html That's the G-B support group. It might be useful?

Thank you for the link Lougle. I have now joined as a friend, and will hope it is useful. I had never even heard of it until Friday last week, and am only managing a bit of cautious reading now as I have been scared of what I would read.

Hospital school will probably depend on the set up but when Ds was in hospital school during a long hospital stay they also had day patients coming in.
If your dd can't access school for a long time for medical reasons she is entitled to minimum 5 hours home tuition. IPSEA or ACE websites will give you the legal details if LA are difficult.

Only time I have come across GB was someone I was in hospital with years ago. She was in her 60s and had been quite ill but in spite of that and her age had made great progress (long walks round hospital grounds for example).

Sorry I know 'I knew someone who had...' isn't always very helpful.

Useful information about Hospitals' schools

Thank you for that info :) I see that it says people can receive hospital school if on ward for 2 days or more but still worth an ask, and I now know who is in charge of the home education service which is good!

ATM I am finding the "I knew someone who had..." stories quite comforting as they usually end with a good outcome :) it seems that most people who have this do make a recovery.

Today has been an emotional day. Dd decided on a whim that she felt like going tithe other side of the room. So she dumped her pillows on the floor, flung herself onto them and commando crawled across she has done this numerous times and also managed to climb back onto the couch! Considering last week she couldn't even turn over in bed, I am amazed. Still a long way to go but she is trying so so hard.

Oh that is great progress. Well done to your Dd.

It sounds like she's got a real fighting spirit - you go girl!