A bit of a vent...

This will be long, I need to vent, dont feel compelled to read lol

2 years ago my now 15 year old daughter had an accident at school. Basically she was carrying more books than she should awkwardly to help a teacher. Somehow she stretched the nerve in her neck and suddenly, without warning her left arm became completely paralysed. She spent 12 months rehabilitating with physio etc but understandably because it was a total paralysis she lost a lot of school time.

More recently she was discovered to be (like me) Hypermobile. We can both move our joints in ways we really shouldn't, this means we frequently dislocate and relocate bones, most of the time its a quick pain but sometimes we can stretch and trap nerves. We never did get a straight answer as to whether her initial injury was compounded by the hyper-mobility.

About 6 months ago she started to get pain in her arm again. This slowly got worse along with numb patches in her arms. Fascinated by the fact she couldn't feel areas in her arm her so called friends would pinch and hit her arm. Finally about 3 weeks ago one lad punched her in the shoulder and again all feeling went from her arm.

I took Ellie to see the consultant on Monday, he examined her and concluded she most likely has something called 'Brachial Plexus Palsy'. Unfortunately there was very little he could do so he referred her again to a Shoulder and Nerve Surgeon at Derby hospital where she will also undergo Nerve tests again (very unpleasant tests which involve putting large needles into the nerve and running electric pulses through them). He hopes Ellie will be seen in December and have the Nerve Function tests the same day.

Since the appointment on Monday Ellie hasn't been in school. She was pulled and pushed by the consultant and its left her in considerable pain. The current painkillers she is on send her to sleep so in effect she is a either alert and in pain or a comfortable zombie. Attending school like this is impossible for her. She's just come round from last nights amitriptyline and has instantly reached for more pain killers to deal with what she describes as 'electric shocks' up her arm and into her neck.
I spoke to our GP this morning and he is trying to find a medication which will deal with her pain but wont knock her out.

We've had a letter this morning from the Education Welfare Officer expressing concern and now Im very worried. Steve has spoken to them and we have asked the school to please start sending work home but obviously Im now waiting to be thrown into Prison.

As she cant feel anything she has been a target for her 'friends' hitting her arm to try and get a reaction. She cant feel being hit, pinched, punched, burnt. We don't feel she is safe in the school despite the provisions they have in place so far. I'd like to home educate her until Christmas at least, hopefully this will give us a better idea as she will have seen the surgeon by then.

I've spent the morning sobbing tears of pure frustration. School are useless and if it wasn't for the fact my good friend is a science teacher at another school I'd have gone loopy. She (along with their schools Ed Welfare) have advised me on what to do and I feel a little better that I'm not going to end up in prison.

I've now got to get a sick note to Christmas for her and try and get her referred into a special ed unit for kids with physical disabilities. All the while she's missing out on school and is only a year away from her GCSE's.

I feel utterly useless and ignored. I have a child with a paralysed arm who's having no physio and is living off painkillers. To top all this when Ellie was well and in full attendance in school we booked a week in Egypt (2 weeks away) and I havent mentioned that one to them yet!!

I needed to get that down. Sorry girls.
x

:hugs: I have no advice but wanted to lend my support. It seems shocking to be school would contact the welfare officer when they are well aware of the situation, I know a lot is automatically triggered but it seems common sense should have prevailed.

Your daughter's friends are jerks, yep my friends and I would have done similar but not continuously - i'd definitely be making a complaint as I feel it is bullying.

Hope she gets better very soon.

Jasmina wrote::hugs: I have no advice but wanted to lend my support. It seems shocking to be school would contact the welfare officer when they are well aware of the situation, I know a lot is automatically triggered but it seems common sense should have prevailed.

Your daughter's friends are jerks, yep my friends and I would have done similar but not continuously - i'd definitely be making a complaint as I feel it is bullying.

Hope she gets better very soon.

We complained, the school put provision there that she should leave lessons early to avoid being knocked etc and she was supervised constantly. Of course, the minute the teacher left the classroom it was 'lets poke ellie' again.

Apparently yes the EWO thing is triggered as procedure, but on top of a very worrying situation I didn't need it. At this stage I don't know if she's permanently paralysed or if shes going to need nerve surgery. Fortunately its not the arm she writes with but she's had to give up everything she loves now because of this (she was an air cadet) and these days just exists on painkillers and doesn't go out. It saddens me because she just gets on with it. Never complains.

Some days I think they are convinced she's making it up. Its very rare and the causes of it are not really known so that doesn't help.

Poor kid

I have no advice, just hugs for you both xx

Sorry to hear about your daughter pulliptears. [You must be registered and logged in to see this image.]

Try not to worry too much, I'm sure the Education Welfare Officer will understand that you have to put your daughter's welfare first. Ellie sounds like a tough little cookie, she'll get through this.

There is no way on my arse they can throw you in prison for your daughter being ill. It would cause absolute uproar.

If I was you I would contact my MP and ask for their help in dealing with these imbeciles. Your daughters health comes first, not some bozo with a box to tick.

I hope her well. I had nerve conductivity tests like you explain and I quite liked it. Reminded me of feeling drunk. Maybe her looking at it as a 'laugh' in that way is easier than worrying about them. It made me giggle that my arm jumped about without any warning. ( I know it hurts a bit, but if its gotta be done you may aswell find a little way to enjoy it.

Lady S wrote:There is no way on my arse they can throw you in prison for your daughter being ill. It would cause absolute uproar.

If I was you I would contact my MP and ask for their help in dealing with these imbeciles. Your daughters health comes first, not some bozo with a box to tick.

I hope her well. I had nerve conductivity tests like you explain and I quite liked it. Reminded me of feeling drunk. Maybe her looking at it as a 'laugh' in that way is easier than worrying about them. It made me giggle that my arm jumped about without any warning. ( I know it hurts a bit, but if its gotta be done you may aswell find a little way to enjoy it.

She's had the nerve tests before and amazingly isn't phased by those (I was wincing for her!) but she is worried about the prospect of surgery.

I need to pick up her 'sick note' tomorrow and drop that into school so that should at least get the EWO off my back for now. Then I can get some schoolwork and crack on with teaching her at home for now.
Tomorrow Im calling the consultants secretary and see if we can get her in sooner, or if we can go private (credit cards here we come). Time to be a bit more proactive I think.

My friends daughter has a similar condition, I cant remember the name but it sounds very similar symptoms. Her doctor said it was triggered by her having the cervical cancer injection but the condition was already there it was just dormant. She too has had the 'its all in her head' talks by doctors .
She is 18 now and had to give up a hairdressing apprenticeship at 16 due to this. Like your daughter the painkillers knock her out. Her doctor has recently loaned her a tens machine to help her manage the pain, maybe this would help your daughter too?

Where school is concerned you are within your rights to home school your child. It is law that your child is educated but it does not have to be in a school. I looked into this as my 12 year old is on the autistic spectrum and school was a major issue for him. In the end I didn't go down that route as the secondary school he goes to now is brilliant and have a 'room' with computers etc where more vulnerable students can spend break time and lunch times, and if they need time out during lessons etc.

I hope everything works out.

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Really sorry to hear all this

I'm sure your teacher friend has put your worries at bay with regard to the EWO, but I just wanted to re-iterate that they have to be informed if a pupil's absence drops below a certain percentage. It doesn't mean it's anything to worry about, it just means they want to check to make sure there is a legitimate reason the pupil's out of school, and to help put measures in place to bring the pupil back into school where possible. So please don't worry about this!

With regards to her friends punching her in the arm, my sister's allergic to cucumber, and her friends used to think it was great fun to try to force cucumber in to her mouth to see what would happen. Kids are awful.

I hope things get back on track for your daughter soon. Sounds like she's very brave.

Thanks all for your kind words

Took Ellie to the GP this morning, he's sent a letter both to the school and the EWO explaining that school is an unsafe environment for her and that measures need to be put in place for her to be Home Tutored asap. Dr says that if Ellie stops the amitriptyline she will be in far too much pain to sleep, so for now we have to keep going with them and put up with her being 'knocked out'.

Dr also requested I go in to see him on Wednesday when he'll call the Surgeon and request she's seen that day if possible while I'm with him. I feel like finally things are moving!

Oh, and I'm not going to jail

Glad things are moving, don't give up, just push on.

I'm really glad progress is being made x

I'm glad you're not going to prison

xoxo wrote:I'm glad you're not going to prison

I might actually sleep tonight for the first time in ages lol.

I know you'd have come to visit with a cake and a file

I'd bring a nail file and the prettiest kleancolor polish I could find for you

As someone who went through a very similar thing at 15 (though I had severe anxiety/panic attacks rather than being in pain, though they were brought on mainly because of the school), I would definitely advise you to keep pushing the home school thing.

My school were worse than useless. My GP advised that I be home schooled and to talk to my school about it and ask if they could arrange something. We met with the head several times and eventually he said that home schooling was something we had to arrange with our GP. He said he could arrange to have work sent to me from my teachers but I received nothing. We waited and waited to hear from someone but nothing happened. It was 9 or 10 years ago so we didn't have the internet to research anything, no one gave us any advice and I ended up just spending the whole of that year waiting for some kind of work or tutoring, or even a phone call to find out where I was but basically I was ignored. I didn't even do my GCSEs.

So really insist on getting something sorted, even if it means annoying people, just make sure she doesn't get ignored.

Muffy wrote:As someone who went through a very similar thing at 15 (though I had severe anxiety/panic attacks rather than being in pain, though they were brought on mainly because of the school), I would definitely advise you to keep pushing the home school thing.

My school were worse than useless. My GP advised that I be home schooled and to talk to my school about it and ask if they could arrange something. We met with the head several times and eventually he said that home schooling was something we had to arrange with our GP. He said he could arrange to have work sent to me from my teachers but I received nothing. We waited and waited to hear from someone but nothing happened. It was 9 or 10 years ago so we didn't have the internet to research anything, no one gave us any advice and I ended up just spending the whole of that year waiting for some kind of work or tutoring, or even a phone call to find out where I was but basically I was ignored. I didn't even do my GCSEs.

So really insist on getting something sorted, even if it means annoying people, just make sure she doesn't get ignored.

So sorry you went through that Muffy, I wish I could say I was surprised but the more I read the more common it seems.

I have a good idea why we are being ignored, when Ellie hurt her arm initially it was because she was carrying text books for a member of staff. She had far too many books stacked up to her chin.
I'm guessing the school are thinking we are going to sue so keep us at arms length so as not to say the wrong thing maybe. I struggled to get work from them last time so have no reason to believe it will be any easier this time.

Fortunately for me I have a good friend who's a teacher at another school and a mine of useful information. She tells me (because her current school wont!) that there is a school locally called 'The Merit' school which is for pupils who struggle in mainstream education so Muffy it would have been ideal for you. I believe there are 19 pupils on the roll and they vary from kids with anxiety to disabilities, bullied children and pregnant girls. The school is run for just a few days a week for a few hours a day and enables kids who would normally struggle to gain GCSE's to get the qualifications they need for college. Access to the school is by referral so my current thought is to get our GP to refer her there after Christmas when we hopefully have a more long term prognosis for her.

Ellie's long term plan is to go to college and study Graphic Design so gaining her English, Maths and Art GCSE's are by far the most important to her.

I don't have much to offer but wanted to offer hugs for you both, gingerly for Ellie!

My best friend in Primary School had (still has, 12 years later ) MS and is now totally bed bound, when it all started the school accused her mother of taking her out deliberately, faking her illness, the whole kit and caboodle. Unfortunately she was so ill by GCSE time that just surviving was all she was bothered with - however she's such a beautiful person you wouldn't know!