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exhausted grieving 15 yr old forced to school with query CFS

Posted , 13 users are following.

BS8
BS8

we are looking for a paediatrician in the SW UK urgently. CFS has been suggested as the likely problem. However the school have linked up with social services and demanded she do a full day at school. 10 months ago this young girl suffered a tremendous loss , and has not had closure yet.

if it were us dragging her from bed I'm sure we would be deemed as unfit parents! The GP has refused to put anything in writing so tomorrow we have to again watch as she is dragged crying from home, only to sleep at her school desk? No she is not left to sleep, she is shook awake by a teacher who tells her to stay awake. We need a confirmed diagnosis and don't know where to go? 

Anyone any  ideas please 

0 likes, 31 replies

31 Replies

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  • jules49
    jules49 BS8

    Posted

    Hi, I'm sorry to hear of your awful situation. I had the same thing with my daughter. She had a trauma when 13 that she's still in therapy for now, she's 18. Same problems with school. I fought tooth and nail, refused to send her in, didn't care if they fined me - they didn't. School told me she was 'playing on it' - she jumped out of a window when they put her in classroom with male teacher - idiots!! Anyway, what got us through was a letter from GP stating she could only attend on part time basis, 2 hours a day. They tried to question it he told them straight. If she couldn't go in id get letters from doc. So, change your GP. There will be someone out there who will understand and back you up. Good luck X
    • BS8
      BS8 jules49

      Posted

      Tried the GP again today. " we do not write out sick notes for school, only a paediatrition can do that." We've been referred but no appointment for several weeks. That's why I'm trying to find one anywhere in SW because neither her dad or I can bear to see this ' abuse of power' or whatever it's called. 
  • Retriever
    Retriever BS8

    Posted

    This may be a useless suggestion but try your M.P. Desperate situations need desperate solutions. I don't know whether writing or attending one of the M.P. clinics. Work from the top down.If any of us on this forum think our problems are bad they do not compare with yours.

    I wish all the luck in the world

  • tom56086
    tom56086 BS8

    Posted

    Suggest that you find a new doctor or GP. 

    They may be able to refere you to a specialist, Kings collage also has a specialist reaserch unit on CFS which might be able to help you. 

  • BS8
    BS8

    Posted

    Thank you everyone for advice given. I have managed to get an appt for middle of June with a paediatric doc who specialises in CFS. This took an awful lot of pressure plus numerous visits to GPs.

    Yesterday I was forced to leave my sons home by his ex partner, SS and others. Neither son or I were strong enough to say he needed me to stay. My grandaughter was in bits. I am exhausted. 

    this morning they had the usual team of social workers, school 'welfare' huh dragging her out of bed. Her dad, my son is on the verge of a breakdown. I notice there was a high court ruling today which I welcome. If you google (Jon Platt school high court) That's how I found it. 

    Tired.so write more later!

    • lynne69494
      lynne69494 BS8

      Posted

      l hope your grandaughter gets the help and acknowledgement she needs. How terrible to be ejected from the home, but l hope at least yu can get a bit of much needed rest for yourself.  l did see the case on the news, good for the dad taking it to high court, Its all started in response to those who take their kids on hols to family for months on end, which happened a l ot,  and of course local authoraties with usual sledgehammer come down on everyone , be it for chronic illness or someone who just takes their child out for the rare short holiday, no common sense, a minority abuse system and as usual they penalise all, good the judge had common sense over it.  Ironically theres another poster bb62 on cfs thread who has a l5yr old daughter, with serious cfs symptoms, battling the system over her. 

      Glad you got a peadiatrition appt, your grandaughter is lucky she,s a gran who,s looking out for her actively. Good luck to you both.

    • BS8
      BS8 lynne69494

      Posted

      Hi

      well we've managed to get the school day shortened but they insist on 9am to 12 pm - they just don't get it!  it takes her until 10.30 am to get up. Why can't they do 11 am until 3pm at least she'll be awake then! How can anyone function when they're falling asleep? 

    • lynne69494
      lynne69494 BS8

      Posted

      Well lack of common  sense and making a point there in charge, still. Drs sometimes do the same, early morning appt, as if insinuating its how lazy people live and theyll show them  But l know how it feels, l wake up in the mornings feeling like hell, can hardly move for fatigue and pain, let along function, just getting dressed and moving a major effort of will, my dog helps motivate the will power needed, no one wants to feel like that, its a lousy feeling, l really wish, as we all do, l could feel as l did years ago, waking anytime between 5-8am feeling fit and raring to go, able to energised. Maybe theyll eventually get common sense to start between ll and 12 to get the best of her. Good luck
    • BS8
      BS8 lynne69494

      Posted

      Hi Lynne 

      i found this this thread thanks to you. I can't rest I much prefer to be there. I am a 45minute drive away, in a very large property but much prefer to be there. My son and granddaughter are constantly calling me. It's awful, I cannot park outside the flat as its in the middle of town. I had a blue badge but it ran out the day before. I was given a ticket and my car towed away, one day out of date! Same council! I cannot have them here as the school is too far away to get to. I have spent a small fortune on taxis this week.mwhen she does want to see a friend even if 200 yds away we have to call a taxi.mshe goes round there and sleeps on the sofa, can't hear her mobile so how's she going to take anything in at school. I've typed a letter removing her from the school roll. it's illegal to not to educate your child, you do not have to follow the corriculem. Anyone please look at education otherwise the law. 

      Later her I will post what I know about PPIs eg omeprazole.

    • lynne69494
      lynne69494 BS8

      Posted

      l can understand, although you should be able to get more rest away from the problems, its on your mind, l,d be the same with my family, you cant just switch off. Do you have skype, so you can be in touch that way. Ironic but l had a blue badge, and must have missed the reminder, probably thought junk mail binned, so just a week overdue, but some kind warden put ticket on, 80pound, no heart much now, re again no common sense all looking at circumstances,  ours in council car park.

      Taxi,s are an essential for me also, big help but big spend also. Even before court case education law problematic, also depend on the council your with. There is a thread from bb62 for cfs, she states her l5yr old daughter so ill with cfs theyve had to remove her from school, but l guess it depends on the council involved. At least its weekend, and not that long till summer hols, wont come quick enough for you all, hope the consultant can  help.  good luck

    • BS8
      BS8 lynne69494

      Posted

      Hi Lynne

      Pm later much to tell. Yes we can always Facetime we're all on Apple.

      But too much interaction needed. Im putting a formal complaint into those responsible it was intimidation also asking solicitor if it was a form of elderly abuse, I am nearly 70!

    • Beverley_01
      Beverley_01 BS8

      Posted

      Hi again,

      Am glad to hear you got appointment with specialist and school has reduced hours although unsatisfactory. I can only imagine how difficult this Is for the three of you and cannot believe you were forced to leave the house by social services.

      Hope things settle soon and that she gets the support needed.

      Beverley

  • gryfalcon
    gryfalcon BS8

    Posted

    I suggest homeschooling or a virtual school.    

    Also, consider researching supplements which can help, such as magnesium and malic acid.  You might want to find out if she has the MTHF genetic mutation, which is common in ME.  A doctor can perform this test, or there are genetic testing services available for consumers.

  • Beverley_01
    Beverley_01 BS8

    Posted

    Hi Agfain, 

    Just wondering how things are and if a better solution was found with the school?

    Best wishes

    Beverley

  • ZombieNicola
    ZombieNicola BS8

    Posted

    Hello,

    I'm afraid I haven't read all of this conversation (trying not to burn myself out) so apologies if this is at all repetitive.

    I'm based in the South West. My OT and her team are very proactive and, although I'm an adult, have given me some great literature from a paediatric CFS/ME service based in Bath. I don't know where you're based but if you could get in touch with them I don't doubt that they'd be able to offer some excellent advice.

    Also, if you can move to a new GPs practice, do it. There is nothing more important than having a support network which includes sympathetic medical professionals.

    All the best, I hope that you and your granddaughter find the support you need.

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