Child with Chronic Pain - School Refusal

Hi there, I just joined today so apologies if this is a common topic! I have a 9 year old who suffers with chest wall pain. We have been told today that this could continue for years. Recently her anxieties about her pain in addition to the pain itself have meant that she doesn't want to go to school to the point where she has panic attacks. The school are vaguely supportive but don't seem to know what to do with her. I wondered if there were any articles anywhere that people knew of that offered guidelines for school to help them support children with chronic pain or whether anyone here has dealt with this issue and has any advice? TIA

Louise

14 Replies

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  • Have you contacted the Pain Concern Helpline for guidance?

    painconcern.org.uk/wp-conte...

    T: 0300 123 0789

    The Pain Concern Helpline operates

    Monday to Friday: 10-12 and 14-16

  • No I haven't. Thanks so much. I will give them a call now.

  • I haven't any advice but just wanted to say how awful for her and you

    No one ever obviously like children to be ill but to suffer chronic pain like I suffer in a different area is horrendous!! School wize I don't know but perhaps social services. I've had dealings to do with grandson and have actually found they work really well with schools

    Although their work with adults is usually awful.

    Might be worth a call especially if school gets funny about time off. Good luck xx

  • Thanks so much for taking the time to reply. We have an early help worker so I will talk to her - maybe she can help with the school x

  • I hope you can find someone to help, the LA should have an educational welfare officer that should know how to handle things like these, or even an educational psychologist. However if it doesn't work out, remember you do have the option to home educate. There are plenty of people whose children have SEND who home educate because school just doesn't work for them. An anxious child is not a child that will be able to learn.

    he-special.org.uk

  • Thanks for the reply :) The school are supposed to be consulting and educational psychologist. I am definitely leaning towards home education but my husband is taking some convincing. I have done loads of research. Given how the school have treated her today I have just been nudged even closer...x

  • It is not unusual for one parent to have reservations, but even if you deregister now, it isn't a for life thing, she could go back into the system again if it doesn't work out. There are a lot of people home educating children with SEND, so you certainly won't be alone. And often once people start they wished they had done it sooner, especially when they realise how much stress school was causing not just the child but the parents too!

  • I am not a doctor but I play one on TV (just kidding). Anyways, I had something like this when I was young, and if I coughed or even breathed deeply, it was very painful and uncomfortable. I can offer the following:

    Have the child checked for Pleurisy which is an infection of the inner lining of the lungs. It can be diagnosed by a general palpitation exam and a chest x-ray (if necessary) with your Pediatrician. I believe a course of antibiotics was what I was prescribed which treated it in a matter of a week or so.

    good day!

  • Thanks Doc ;) I will mention it when we see the consultant next week.

  • Hi, I am in my twenties now but I was once a child with school due to anxiety & chronic pain! To deal with my condition the stress of going to school was too much so I ended up being homeschooled for 6 months and then was slowly reintroduced back into school life. A long process but worth it, as I could take my time & felt my concerns were being valued by parents & school.

    Have you asked your daughter if she is worried about anything else?

    My big concern was that I knew people had been talking about me at school & people not believing me & my friends reactions.

    Maybe invite a few of your daughters friends around to hang out at home - watch a film or do something fun that your daughter is able to take part in. Kids deal with not knowing how to react by avoidance. So explain to the kids & parents that 'X is in pain/has trouble sometimes but she really wants to see you!' It might be awkward at first but hopefully will get them talking etc.

    Perhaps being close with friends outside of school environment will help with reintegration.

    Or have a space in school where your daughter can retreat to when she is feeling anxious - perhaps the SEN room or nurses office. I used to have a card I could show to my teacher & be able to leave a lesson immediately & not have to explain myself.

    Hope that helps. Its awfully tough but you & your daughter will get through this!

  • Thank you, that is so reassuring. The school haven't been listening but I have started to complain and told them they need to let her leave the room if she feels overwhelmed. They have finally said yes and agreed to do exactly as you suggest. They are also going to do a temporary reduced hours timetable. My husband and I have both worried about taking her out in case we never got her back in but to be honest I no longer have that worry - I am too worried about the damage we are doing her now. Either way you have given me hope so thank you. I hope your pain is not still with you.

  • Hi, I'm sorry your having all these problems, I know how difficult it it is. I just want to let you know there can be light at the end of the tunnel. My daughter had many health problems at school and she hated going because of this. Her school threatened to take me to court when she was in year seven need of the time she had off as well because they didn't believe she was ill which added to her anxiety. Fortunately the school welfare officer was good and believed us. Anyway during the summer holidays we got the genetic results confirm ing she had a Neuro condition. When she started back at the beginning of year 8 , the school basically excluded her saying they couldn't meet her needs any more!

    To cut a long story short after a lot of messing around with the lea we decided to home educate for the rest of my daughters education.

    When it came to her gcse years they provided 3.5 hours a week support to help with maths, science, English and computer studies.

    I say I Home schooled her though, she really did most of it her self as she is was motivated. Plus the more people told her she couldn't do something the more she wanted to prove them wrong!

    It may have taken her a little longer than most because of being unwell but last year and completed a distance learning access to higher education diploma and just after her 20th birthday I waved her off to university. It was one of the proudest days of my life.

    She is now flying. She is in the first year of studying a biomedical science degree.

    Not bad for a girl who only a year ago needed someone with her when she went out the house in case she became ill. She's now living independently in halls.

    We got her a puppy she's training as a assistance dog and she's helped change her life as if she falls her dog will lie and stay with her till she is safe again.

    So many people told my daughter she couldn't achieve what she wanted. As long as you always support your daughter and believe and tell her she can achieve her ambitions no matter what her health problems are She will be fine.

    If school works great, but if it doesn't home schooling can be a good thing, there are lots of resources available now to help.The lea can also help if you feel she isn't medically able to cope with school but still want their input or you can withdraw completely.

    Whatever you decide good luck and I wish you and your family all the best.I

    If you feel like a chat any time your welcome to get in touch.

    Love Lucy xxx

  • Thanks so much Lucy that gives me some hope. I am currently trying to persuade my husband that we need to take her out and home educate her but he is still very reluctant. I have made him read your post. I really appreciate you taking the time to post. We have been told that there is no physical cause for my daughters pain so I feel particularly helpless and like we have nowhere to go. I feel like taking her out is just what we now need to do. xx

  • Hi, sorry I've not replied earlier, I haven't been very well. I'm also disabled. I passed a couple of my conditions onto my daughter unfortunately.

    It is really hard to decide whether to home educate or not, as it can impact on their emotional and social wellbeing as well as their educational.

    There is an organisation called education otherwise, I don't know if you've heard of them. They can be a really good resource for finding out more info to help you decide and support you if you do decide to home educate.

    They can also put you in touch with other parents in your area who home educate too. Some groups even met up which help give the kids some social interaction too.

    If you do go down this route it is important to try and encourage your daughter to get involved in some out of school activities whether it's drama, girl guiding or just anything so she gets to mix with others if possible.

    It's a shame the doctors can't find any physical cause for the pain but that doesn't automatically mean there isn't a cause for it.

    If you can reduce the things that are adding to the anxiety though it'll maybe make it easier to work out what it causing the pain and make the doctors accept that your daughter pain may have a physical cause.

    Have they checked whether she has any auto immune conditions?

    I know with my daughter we had to fight for several of her diagnosis to be taken seriously and it can be very frustrating.

    Clo's consultant who finally diagnosed the problems with her low blood pressure and her autonomic problems is very fond of saying she is very special and she has a very unique body much to chloe's annoyance! A nice way of saying her body keeps fighting against itself!

    She also has ataxia, hyper mobility syndrome, auto immune hypothyroidism, and neurally mediated syncope which is what cause her blood pressure to drop and nearly pass out as her body can't retain salt very well so she is now asking her doctors to test for Addison's disease as she knows lots of her symptoms fit with this condition.

    I'm saying this because as parents we know our children best and we know when things aren't right with them. I think stress and anxiety can make pain worse but it doesn't mean there isn't physical pain there as well. Sometimes it just means the doctors haven't found the cause of it.

    I know from my own experience when I had just turned 18 I was told by a not so charming doctor that my symptoms were all in my head and that there was nothing wrong with me. This was despite the fact I'd been having falls since I was a child.

    As a result of how much he upset me I didn't go to a doctor again for years until after I had children and I'd had a couple of really bad episodes and Someone said I should have my kids taken off me because they thought I was drunk!

    I finally went back and was referred to a new neurologist who diagnosed me with ataxia!

    What I didn't know until I was admitted into hospital a few weeks ago was that the original neuro who had misdiagnosed me and told me it was all in my head had also diagnosed me in my notes with something called somatoform disorder( I had to look it up as I had never heard of it!)

    I only found out because I accidentally saw my admission letter which had my medical history listed which is why I've had so many problems with medics over the years .

    When I was correctly diagnosed, the wrong one was never removed and as I wasn't aware of it. there wasn't anything I could do about it!

    I know this does make me sound biased against doctors but believe it or not, Clo has had the occasional fantastic doctor as well. So have I, they are just few and far between.

    I guess I'm just saying trust your instincts. If you've only seen one doctor regarding your daughters pain it maybe worth asking for a second opinion.

    Maybe keep a diary to see if anything is triggering it such as foods or exertion, or times of day. Sorry I know you may have done these things already. It's just some of the things we had to try with Clo to help figure out some of her symptoms.

    Sorry about my really long winded post I don't know if any of this advice is useful or not, if not I apologise.

    Anyway I tend to ramble when it's late and I'm tired!

    Take care and if there is any help I can give you then you are welcome to message me any time and I will get back to you as soon as I can. As I said earlier I have ataxia too which has now progressed so sometimes I can't always communicate great so I can be a bit sleepy sometimes but will get back to you when I'm well enough!

    Take care xxx

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