Totally Stressed out Parents !!!!

Hi,

totally stressed out over the seriously poor level of support and intervention we are being given...

have a daughter who's 7 in august, she was diagnosed with microcephaly from 12 weeks old and last year genetics diagnosed her with a very rare trio gene mutation mrd44 and downgraded her microcephaly as merely a characteristic of her mrd44

we are a home ed family but have effectively shut out from any access to support..we merely see our paediatrician every 10 months, waited almost 2 years now for an education healthcare plan assessment but we don't have anyone else involved so doubt we will get an assessment..

we used to have a neurologist, o.t, play therapist, p.t and family support worker involved when living in Ireland but soon as we moved back to the uk we never got referred to any of those services..

we are totally at a loss as to what we are expected to do.


Comments

  • Hi @chris_goodchild1, sorry to hear that you are feeling so stressed out at the moment. Please do check out the information and advice available on our website - http://www.contact.org.uk/advice-and-support
    If you'd like to speak to someone you can contact our helpline on 0808 808 3555. You can find out all about our helpline and different ways to contact us here - http://www.contact.org.uk/advice-and-support/our-helpline/  I do hope that helps for now, take care, Alex (Contact)
  • really sad .I have been passed from pillar to post and not know what im doing right or wrong to helpmy son he has cfs
  • FennoFenno Member, Moderator
    Hi Myhelpk

    My name is Angie, I work at Contact, welcome to the community. I do hope that you find some support from other parents here on the Community. CFS - is that chronic fatigue syndrome?

    We often hear from parents of children with this condition on the helpline, often about their child's education. We have lots of information online: https://contact.org.uk/advice-and-support/education-learning/ - our  helpline advisers may be able to help you find your way through.

    You can call 0808 808 3555 or by email [email protected] - the helpline is usually open, Monday to Friday 9.30 to 5pm, although it is closing at 12.30 today. 

    I hope that's a bit of a help, take care
     Angie (Contact)
  • o wow thankyou . yes its chronic fatigue syndrome  i will give the help line a ring .  it is about education and the not matching health care and education its one struggle after another all sypathise and all i get told no funding and now its still a maize as my son now 16 and left school and ....... so if there are any other parents out there with children with cfs please get in contact with me thanks 
  • FennoFenno Member, Moderator
    Himyhelpk

    Angie (Contact) here - as you have confirmed your son's condition - just also letting you know that Action for ME have an number of online forums that you may want to join: https://www.actionforme.org.uk/community/

    Bye for now
    Angie
  • Hi Angie thankyou I'm on there I think I've been in the wrong forum so I've re register. I think after all we have been through with education I'm tired that it's so complicated and all you get is funding and left when it suits 
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