Neurological conditions
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Hi, anyone with or supporting someone with Tourettes and/or FND/MUS/Non-epileptic seizures?

CazCCazC Member Posts: 5 Listener
edited August 2019 in Neurological conditions
Hi, I have just joined. My son is 11 and has had TS for a long time. More recently he has developed non-epileptic seizures and functional symptoms as well that have been diagnosed as Medically Unexplained Symptoms (MUS). He is starting high school next week and I am very nervous though we have provision in place to support him. His sister has bad anxiety and low moods. Just wondering if anyone out there is in a similar position either with the conditions or sibling needing extra support just to say I or share some advice. Thanks!

Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @CazC and a very warm welcome to the community!

    Thank you for taking the time to share this and I hope other members will be able to share their experiences with you. I'm sure many other parents will be able to relate.

    What support will your son have in place at the moment? 

    Was there an area particularly that you were wanting to gain advice on? :)
    Community Partner
    Scope

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  • LaughingLollyLaughingLolly Member Posts: 101 Pioneering
    @CazC I have been diagnosed with TS, Non-epileptic seizures and functional symptoms in the past and have never come across anyone with all three before. In fact, I was recently accused of 'having too many symptoms' and have been suffering with guilt and self-doubt because of this. So, first of all - thanks for letting me know someone else out there exists with this combination. Second of all, I am a parent carer orf one child with severe autism & learning delay and another child who is undiagnosed.  I have to just get on with it all so I've been and am on both sides of this spectrum. Both my children show symptoms of mild TS as well. Is there anything I can specifically help with about this situation and do you have specific questions because it's kind of hard to give general advice. Can I ask:

    • What do you find most difficult about your son's diagnosis?
    • What impact do you think your daughters moods have on your impact to care for both their needs?
    • Do you see your daughters moods as related to your sons difficulties?
    •  Are you worried about how your son will cope with TS and functional symptoms in high school?
    • What other concerns do you have?
    I hope this forum can be helpful for you. 
    A laugh a day keeps the psychiatrist at bay. 
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @CazC
    Have you seen Sibs before? Sibs is a charity that support the siblings of disabled children. They say:

    As a parent you may find there are times when you need a bit of extra information and help with parenting siblings. Use these pages to get information and tips for supporting siblings with feelings, attention, and understanding disability or additional needs.

    Have you seen the Tourettes Action website? They also have a helpline. 
    • Helpdesk telephone: 0300 777 8427
    • Contact the Helpdesk: Send contact form
    • Live chat: similar to a messenger service, this facility allows for instant chat via our website
    • Facebook Messenger: send us your questions through Facebook messenger

    We welcome calls and emails from people with TS as well as their friends, family and any professionals who are seeking information and guidance. We deal with a wide range of subjects, including:

    Please note that our Helpdesk does not give diagnoses or advice on medications; you should contact a medical professional to discuss such issues. Our aim is to listen supportively to you and provide you with information..

    Opening hours

    Our helpdesk is run by volunteers, and due to current shortages in our team we are running a limited service:
     

    Helpdesk open times

    Monday 6-8pm

    Tuesday 6-8pm

    Thursday 9am-8pm.

    We aim to return your email within 48 hours and live chat will be available Monday-Friday 9-3.

     


    Scope
    Senior online community officer
  • CazCCazC Member Posts: 5 Listener
    Hi @CazC and a very warm welcome to the community!

    Thank you for taking the time to share this and I hope other members will be able to share their experiences with you. I'm sure many other parents will be able to relate.

    What support will your son have in place at the moment? 

    Was there an area particularly that you were wanting to gain advice on? :)
    Thank you. My son has an EHCP so will get extra support, tic breaks etc. He also has some funding for school. Wasn't after any specific advice just to share ideas really if anyone is in a similar situation. 
  • CazCCazC Member Posts: 5 Listener
    @CazC I have been diagnosed with TS, Non-epileptic seizures and functional symptoms in the past and have never come across anyone with all three before. In fact, I was recently accused of 'having too many symptoms' and have been suffering with guilt and self-doubt because of this. So, first of all - thanks for letting me know someone else out there exists with this combination. Second of all, I am a parent carer orf one child with severe autism & learning delay and another child who is undiagnosed.  I have to just get on with it all so I've been and am on both sides of this spectrum. Both my children show symptoms of mild TS as well. Is there anything I can specifically help with about this situation and do you have specific questions because it's kind of hard to give general advice. Can I ask:

    • What do you find most difficult about your son's diagnosis?
    • What impact do you think your daughters moods have on your impact to care for both their needs?
    • Do you see your daughters moods as related to your sons difficulties?
    •  Are you worried about how your son will cope with TS and functional symptoms in high school?
    • What other concerns do you have?
    I hope this forum can be helpful for you. 
    Hi, thanks for your reply. There was another child with TS and FND/MUS at a workshop we went to at GOSH and he had been told that the trauma of having tics could have triggered the functional symptoms. I think research into this is minimal and pretty new but they are big on it at Great Ormond Street.
    I feel ok about the TS diagnosis now as we've had it for a few years. The MUS diagnosis is a bit more confusing as there are some symptoms they are attributing to that where we believe they are TS. 
    My main worries about high school are just the size of the school compared to primary and knowing what other kids can be like. Plus his symptoms and the severity of them are so random that we have no idea what will happen. He could be symptom free during the school day or he could have his screaming tic for 6 straight hours! Well, we'll know soon enough.
    My daughter has anxiety anyway, but worrying about her brother and coping with his symptoms/behaviour makes things hard for her. We get by though.
  • CazCCazC Member Posts: 5 Listener
    Sam_Scope said:
    Hi @CazC
    Have you seen Sibs before? Sibs is a charity that support the siblings of disabled children. They say:

    As a parent you may find there are times when you need a bit of extra information and help with parenting siblings. Use these pages to get information and tips for supporting siblings with feelings, attention, and understanding disability or additional needs.

    Have you seen the Tourettes Action website? They also have a helpline. 
    • Helpdesk telephone: 0300 777 8427
    • Contact the Helpdesk: Send contact form
    • Live chat: similar to a messenger service, this facility allows for instant chat via our website
    • Facebook Messenger: send us your questions through Facebook messenger

    We welcome calls and emails from people with TS as well as their friends, family and any professionals who are seeking information and guidance. We deal with a wide range of subjects, including:

    Please note that our Helpdesk does not give diagnoses or advice on medications; you should contact a medical professional to discuss such issues. Our aim is to listen supportively to you and provide you with information..

    Opening hours

    Our helpdesk is run by volunteers, and due to current shortages in our team we are running a limited service:
     

    Helpdesk open times

    Monday 6-8pm

    Tuesday 6-8pm

    Thursday 9am-8pm.

    We aim to return your email within 48 hours and live chat will be available Monday-Friday 9-3.

     Thank you for your reply. I will have a look at the info. I'm not familiar with sibs but will check them out. We are being supported by a local young carers charity attached to Barnardos called Willows who are fab. 



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