Hello, my daughter is 12 and missing lots of school due to symptoms and illness , she is yet to be diagnosed, and it is so difficult when specialists or doctors try to fob you off and suggest she is just avoiding school. She is having some tests but it's a long journey ahead. I worry she has fibro or lupus or another autoimmune . I desperately don't want her to feel like she is not being believed . If the school start to fine us we would be forced to homeschool and I don't want her to miss out . But I can't always get her to school when she is ill ! How has anyone coped with this ? It's the worst thing I have ever been through . My son is older and has been thru school , but my daughter is so unlucky . It's heartbreaking . Thanks for any advice.
Any advice please on how to deal with... - Fibromyalgia Acti...
Any advice please on how to deal with daughters high school
So sorry to hear your daughter is so poorly it must be so worrying and sad for you..Have you been able to talk with the school about this and told them of her various tests and appointments. I am sure they should be able to do something to help the situation. I so hope you get something sorted soon for all of you.....x
Thanks for reply, I have literally printed off her whole 100+ pages of medical history and given school a copy of 2016 , that cost 50.00 ! Then the school have a copy of every letter from consultants and appointment letters, and I photo every new prescription to prove she been to doctors ! I email everyday she is absent with full details and have granted school access to talk to doctor ! And this possibly is not enough ........ I wondered if anyone had gone thru this experience of potential school fines etc , and who I could go to for advise . My son has gone thru exact same school , thru to sixth form . And yet you end up feeling like some neurotic Mother ! Worst year of our lives. So far . Thankyou for reply, and hope you have a good day .
I thank god my 2 are no longer at school- my daughter had loads of problems at 13-14 with
serious growing pains and period pains, if she wasn,t well enough to go to school then my son didn,t want to go either! I am wondering IF when she is in terrible pain you take her to a doctor or A&E and get her obs checked out, she cannot inflate her own temperature nor her bloods pressure nor her pulse, if she is in pain they will rise, also get them to check her urine-if you can do this at home do it yourself and repeat it.. Make sure she,s not being bullied, ask her mates round and bring it up at a tea party or something ,perhaps a little gentle blackmail with her- we had a cellar when the kids were young and they dressed it up like a disco- only after homework done, good marks and jobs done could they have friends round to play music , they couldn.t wait for Friday night! IF and I stress if- you have a suspicion she is avoiding school then you will have to find a way to reward her for going and punish when she doesn.t- you know her best.. The best of luck I do hope she hasn,t got anything debilitating.
Thankyou so much . I hope your two came out the other side of it all ok . My son is a few years older than her and he went thru the school fine and completed sixth form . So I like the school and my daughter does . She does have some friendship issues sometimes as they do at this age but nothing to stop her wanting to go in . I have done as you said and tried to perk her up / distract her with doing nice things but recently she has gone down hill and even with her cousin over here last night she spent almost whole time laying down feeling ill. I pray it all growing pains and one day she just wake up and have no pain . But my mothers instinct doesn't think that is the case unfortunately . It is constant now, all day long. We have had several A&E trips , and sats are ok , but yes the longer it goes on the more I think is it going to take a 999 call to get her looked at properly. Even with chest pains nothing seems to happen. She has so many symptoms we just appear to be hypochondriacs ! And she so shy when we get to appointments etc it possibly comes across like she is not able to explain how bad she is feeling . It is a good idea to test urine will look into how go about doing that . Thanks so much for reply . Don't want to be forced into home schooling, but once they start issuing fines it will leave us no choice, which would be awful . She would miss out so much and would poss go downhill even more. Thanks again reply.
Hi there
I'm sorry if you have already done this, but have you asked the school if they could send work home for your daughter via email?
Perhaps if you write to the Head of the school and explain about your daughter's illnesss and ask if her teachers could send work home for her.
Maybe worth a try?
Lu xx
Hello, please don't apologise for making suggestions , do really appreciate it . Thankyou. The homework situation is that most is online , and some teachers supplied some missed work , but going forward often the view is if she too ill for school , she too ill for schoolwork at home ! Up until this last week we have managed to do some, but she now feels too ill to do anything but lay around. I am thinking its time to email the Head, as you say, I have copied in my last few emails to secretary of deputy head . Didn't want to go storming in straight to Head but now that don't feel getting enough support it is the best next step I think. . Thankyou so much.
I used to be a Special Needs TA.
If I were you I would make an appointment to see the Head and go in and explain the whole situation and ask for his or her advice as to how to best move forward.
There may be a learning support room your daughter could go to if she feels ill.
I am not saying she has special needs but it is something you could look into?
Lu xx
I think I do need to do that, it's just such an emotional situation I just crumble into tears and struggle get words out so been try email everything . Cried with the attendance officer and pastoral lady, met both them together , and how ever much I prepare I always come out thinking oh I wish I said this or that , and somehow just never seem to get my point across . It's so annoying ! These things never bothered me before but this past year of worrying about her has just been draining . Perhaps I need sort that at the same time ! School has given her an exit pass, to leave every lesson five mins early to avoid rush, and she permanently signed off PE , and she has access to support room. Even said if she can just get in for morning bell she can go to medical room for nap !!! So they are support her very well in those ways. . I can't fault them at all for that . The problem is when she too ill to get out of bed . And also when she feels I'll and goes to medical room I need them to trust what she is saying . I'm convinced she has some form of sleep apnea , never sleeps properly , ever , but that suggestion to doctors not been accepted. Another thing to push for ! Thanks for all advice . Very grateful.
It's great that she has her exit pass 😊
Well done for sorting that out.
When you see the Head write down everything you want to discuss or back it up afterwards in a letter
Of course you will be emotional. That is completely understandable.
Has your daughter been seen at a sleep clinic? Can you ask for a second opinion?
Can you take someone with you to your meetings for moral support?
I know it's hard and very draining for you but remember you are doing the best you can for your daughter.
Don't forget to take care of yourself too.
Lu xx
No sleep clinic yet , Rheumy , Neuro , and await ENT , so hoping they maybe are sleep clinic people too. Ticks most of her symptoms . Thanks , will try keep on top of all and think positive , and think about take someone with me, and my notes ! Appreciate all great advice . Many thanks . Such a great site for advice.
Get a diary and write down all appointments, phone calls, who you spoke to. It's great to have something to look back on and refer to. Keep it just for your daughters stuff.
I hope you can manage to have a good Christmas.
Lu xx
That is great advice Thankyou. Since August have a massive chunky A4 diary with symptoms , hospital letters, appointments etc all stuck in , so messy now, and full! need it to be new year ! Thanks so much. Xmas wishes to yourself and all . X x
Just wondering if she does any regular stretching or range of motion exercises, that could help her. And maybe meditation. I have battled depression and anxiety all my life and the best thing I have done to help that is through mindfulness practices. Just sitting in my spot outside watching the wind push the trees and plants around listening to the wind chime and the birds. Mindful walking the same just not sitting. I LOVE nature so this is heaven for me. Not sure if it would be the same for her .
Anyways. When I am down my pain seems worse but when I pull myself out of it my darkness, the pain is still there but I can tell the weight of my depression was making it worse.
I hope she can find a way out of her issues.
Homeschooling might be good for her for a while if it is something both of you would and could do.
I homeschool my young ones and love it, I honestly could not imagine not doing it, but I have also always wanted to be a teacher, so yea.
Anyways. Good luck. ×××
Your kids sound very lucky . Mainstream school is definately not for everyone . If it came to it I totally would give it my best shot , we have talked about it . But would feel guilty if she couldn't return to same school eventually if she wanted to. But I guess I can't plan ahead that far ! You sound so positive , well done you, and glad you have found things that help you . I have very much been focus on finding answers at this early ish stage , but I really also should find more to help her like the exercise . I think I have thought needed to know what it is first that she has, but maybe need to balance that more with finding more to ease it. She has a foot problem , so walking around school is more than enough ! But would like to get her an exercise bike, and get back to swimming eventually when not so dizzy all time ! Thanks for all great tips .
Is her foot issue like plantar fasciitis? I have something like that. My massage therapist digs her knuckles into little crystal like things near my heel and breaks them up. It is extremely painful, but after they are broken up I can walk on my foot again.
I don't know as a fact but it seems I have inflammation in muscles and maybe even the facia. Or something like that. I have felt a difference in my muscles when I juice. Which I figure ate them de-inflamming. I'm not sure if that is exactly what it is helping with but that is what it feels like.
I also benefit from foam rolling, which started extremely painful but as my muscles loosened it has become less painful and more of a good massaging type feeling.
Anyways, not sure if those will help her as we are all different. But light exercise and diet change seems to benefit a lot of us.
Good luck×××
I'm not sure yet what foot thing is, after second Rheumy appointment he saying it a biomechanical pain in main metatarsal on one foot , and using orthotics now to help with a slightly dropped foot arch . The findings say the above plus mild hyper mobility . And small ossicle in ankle . . . . . . . .. But then says all that not of clinical significicance , just biomechanical lain and diagnosis low school attendance !!!!! Maybe I need a different Rheumotologist ??? Her school attendance is low due to all her other symptoms and repeated illnesses , which I told him, but ignored, and now there is a letter from Rheumy to doctors saying refer on for school avoidance, even though he has booked us physio in January and has not discharged us !!! So. Is have major battle if doctors go along with this crazy notion of diagnosis school avoidance !!!!!
Oh and swimming is one of the best exercises for us and I would suggest her starting with that instead of the bike, as the bike may cause stresses on the knees, maybe. I have known someone that it bothered their hips and knees. I have an eliptical but never use it because it separates my legs more than natural and cause hip and leg pains.
So just a warning, if it is something you are going to spend money on.
Thanks for the exercise advice too, I don't want to do the wrong thing in letting her get an exercise bike, it was just something she could do at home, without expense , she is a 12 year old girl with some skinnier friends and I am sure she does get bloating , she isn't overweight but some girls her age are so tiny. So would like to help her in that way , on a restricted budget , but again it's finding something she would enjoy and can physically do . Her feet cause a lot of pain and her back , whether she is active or I'll at home on couch for a week, it doesn't seem to let up . Thanks all advise X x
My daughter and I have discussed home schooling a lot, and I have researched , as wanted get some idea of how it all works should she become too ill to be in school . But also if at some stage she herself says she can't manage it anymore . She is not at that stage, she really wants to stay at school. But could I ask in your opinion, is it really an option for a one parent family on a low budget ? Do you think someone in that position could do it successfully ? The reason I ask is it is just me, and I would have to work from home more at the same time as home schooling my daughter, I am self employed, or do you have to spend a lot of money meeting other home schooled children at daytime clubs etc etc ? I applaud everyone who does it , and would like to think I could , but I would worry about the financial implications too. Thanks for your reply . X
Ok as far as making it on one income. . My husband is our only income. I don't buy curriculums that cost a ridiculous amount of money, I just don't think it is necessary as there are a lot of good stuff out there cost effective. My son is in cub scouts and karate and my youngest is about to start tball, so they stay busy and go around kids regularly. I don't know what your.....community or governments or (I want to say state, as each state here in US has different regulations for homeschool) I would check out what you/she would be expected to learn/teach where you are. There is some really nice inexpensive curriculum online as long as it fits within what you have to do.
The Robinson (I believe is the name) curriculum is quite interesting for older kids like your daughter, my children are too young but .. anyways.
In the homeschool community, there is a ridiculous amount of approaches to homeschool and since your daughter is older you can really have fun with it.
When you homeschool you have a full 24 hour period to do what needs to be done. Kids don't spend as much time as you think learning in class. Changing classes, lining up, lunch, disruptive other kids. You're daughter could probably complete a full days of work in a couple hours if that, depending on what her day requires. My point is I think balancing work at home and homeschool could totally be possible, especially because of her age. She can read, be sself-discipline enough to take her education into her own hands if she wants.
Some teens follow their passions and learn math/history/etc. through art or skiing or architecture or fashion or whatever keeps them interested, it is quite fascinating.
Sorry I feel I have rambled too much. I do think it is possible for a single mom to homeschool her child. It might be hard and take some figuring out, you might be able to find a single mom Homeschooler blog online, there is an overwhelming amount of homeschool info online. Anyways good luck. ××
Oh please feel free to ramble away it is so helpful and interesting , and sounds very positive . You are right about the timing thing, door to door her day is 8hours !! So with all the things could miss out could definately condense it right down and spend rest socialise and having fun when her condition allowed . At the moment she is exhausted from the whole day .
In the UK I believe we just need to write to our school Head to inform going to homeschool, then the council would send an inspector etc every couple of years , to see what teaching, and it doesn't have to be formal national curriculum . So like you say you can let them follow their interests and hobbies and things that may help their career aspirations. Long as they not isolated .
It would take lots of thought and organisation but if it's something we are forced to do , or we choose to do , we could make it work ! Thanks so much . X
You're Welcome. Please feel free to pm me if you have an questions about homeschool, or anything for that matter.
Homeschool and trying to figure out my body and how to keep it functional is my life at the moment. I'm by no means an expert on any of it. But I am someone to chat with about it and I know from experience that it is hard not to have someone to bounce ideas off of or just be listened to by someone that will have some kind of response back.
Anyways. You will find the best path for you and your daughter. You are a good mother and are doing everything you can for her and through that it will become clear. Good luck. ×××
Thanks so much for lovely message , it so nice. I'm really in a bubble at moment of googling / researching symptoms/illness/ school / home school / health / exercise and it would seem obsessive to anyone else !!! Your home school sounds fantastic, will send my daughter to yours !!!! Thanks all great ideas , she could be a very well rounded person with a handful of important exams alongside her passions and things like first aid too would be brilliant thing for her to learn . Enjoy the rest of your weekend , thanks so much X x
Hi Hidden
I really am so genuinely sorry to read of how your daughter is suffering and struggling and I want to sincerely wish you both all the best of luck with finding the answers that you so desperately desire and deserve.
All my hopes and dreams for you
Ken
Thankyou , I hope so too, and there are great people on here with real solutions and ideas to help her , people who actually understand and take it seriously, which is what we are in desperate need of. Thankyou everybody and good wishes to all . I wish the school new that actually we don't want to be at home at the moment watching loose women (even tho I do love the prog) , I want my daughter to be well enough to go to school and I can do my Christmas shopping !!!!
Good luck my friend
Hi. Could you discuss part time schooling for your daughter. It is important that she maintains contact with her peers and doesn't become socially isolated. Children with medical conditions can be granted leave to have part time schooling. Quality part time is much better than dotting in and out with always the feeling of having to catch up and never managing it.
She could be going in every day just for a few hours. Perhaps concentrate on maths and language initially.
It is so difficult to know with children how much to push and how much to let go. Personally I don't think it will be good for her to lie about watching TV or p,laying games all day even if she thinks thats all she can do. It's so hard isn't it .
But I woukd discuss part time with the school and maybe suggest referral to the psychological services if the school hasn't done so already just to give your girl someone different to talk things through with.
Best of luck and I hope your girl will be able to
Thankyou , you speak so much sense , and previously her junior school granted her final couple weeks as part time just to get her through it . So now we have made the transition to high school then it is a strong possibility for us. Problem is my daughter wants to be in fulltime when she can !!! This just shows how she wants to be there , and definately is not faking it to avoid school ! Also the school have a two week timetable so I would need to find out if they would be willing to let us pick and choose the 'important' lessons . Academically my daughter is just above average I would say , but if I say to her she can't do drama or art or citizenship , which she loves , she will be absolutely devastated . Also saying to her now I don't think she is coping with full time it's like saying to her she is not going to get better, and even tho I fear she may have something that she may have to cope with long term, I am trying to keep this from her at this stage . I want her to stay as positive as poss as think there is an end to this . Oh it's so difficult . I just want to do the absolute best for her . But I go round in circles . Her Rheumotologist has written to my doctors saying refer onto EWMHS for school avoidance ! So even though I know that is wrong, it would give her access I assume to psychological help. But I need make sure everyone concerned is still trying to find answers for symptoms and illnesses , and not now put in a category of anxiety etc. Which she may now develop as a result of pain and illness , but not the other way round !!! Sorry very very long winded reply. Thankyou so much all help .
Just one point. I dont think we can ever separate mental and physical symptoms. Our brain and body are linked in so many ways.
Yes I understand your point, and I will accept that the psychology aspect will be a vital part of her treatment and care. I am sure most people would agree that anxiety/depression worsen physical symptoms in most cases , if not all . I want her to get every aspect of help and get better. Thanks so much .
Is there a community theatre? We have a small local one that locals can try out for including children. And art now there is A LOT of homeschool art curriculums ranging from free to cheap to expansive. Sorry had to throw that in.
I hate the thought of her losing her loves. It is important to always do what you love.
If she has a favorite medium: clay, paint, charcoal, fashion, just drawing, whatever maybe that could be a holiday gift so she has it to de-stress anytime. Art is an amazing therapeutic outlet.
Anyways, if she does school part time you could homeschool part time with the other subjects. Those things she loves, you might not have to do too much involved with teaching, since she will probably have the drive to do it on her own.
Anyways. Good luck.
My daughter is now 18, her school have been really supportive. If you have medical evidence I don't see how they can fine you for her not attending. If the school are not being supportive i would contact the local education dept and discuss with them. If she is not able to attend school they should be able to supply home tutor when needed.
Has she had the HPV vaccine and if so did the symptoms start around that time. There have been reports of this causing these sorts of symptoms.
I wish you all the best for your daughter and hope you find some help.
I am glad you had a positive experience with school . We unfortunately do not have any 'evidence' , not enough for school anyway . Just have a poorly fed up daughter with not much of her body feeling normal anymore to her , appetite at a minimum . And so school have sent letter , today , four days til Christmas, saying she is being reported to 'missing children' . Absolutely awful , she's I'll, we just don't yet have a name to it . We are given no time to diagnose to treat , to help her before forced out of school . Something is going very wrong somewhere ! Waste of time come after us, but they could be spending time and resources helping a family or child really in need. All we need is a bit of time to get a diagnosis . But obviously that's too much to ask .
That is crazy. I don't understand why missing children, that makes no sense. We have truancy officers that can take a parent to jail (though I think that's extreme cases) if kids don't go to school or have notice of some sort of education. But missing children's have REAL missing kids to worry about. My brain is now breaking down trying to get that.
I'm sorry they are doing that to you.
Sleep
Advice on new symptoms please ...
Help me daughter has Lupus SLE. We all thought it would be Fibromyalgia??
stressed and whole body twitching
Sorry, I need a rant.........
