Hi, anyone with or supporting someone with Tourettes and/or FND/MUS/Non-epileptic seizures?
Comments
-
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?0 -
@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?
1 -
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:
- Information on getting a diagnosis
- Support available after diagnosis
- Advice on handling TS in school
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.
1 -
Chloe_Scope said: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?0 -
LaughingLolly said:@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 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.0 -
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:
- Information on getting a diagnosis
- Support available after diagnosis
- Advice on handling TS in school
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.
0
Categories
- All Categories
- 13.6K Start here and say hello!
- 6.7K Coffee lounge
- 51 Games den
- 1.6K People power
- 32 Community noticeboard
- 20.9K Talk about life
- 4.8K Everyday life
- 2.2K Families and carers
- 796 Education and skills
- 1.7K Work
- 384 Money and bills
- 3.2K Housing and independent living
- 806 Transport and travel
- 627 Relationships
- 1.2K Mental health and wellbeing
- 2.2K Talk about your impairment
- 835 Rare, invisible, and undiagnosed conditions
- 886 Neurological impairments and pain
- 1.8K Cerebral Palsy Network
- 1.1K Autism and neurodiversity
- 33.6K Talk about your benefits
- 5.4K Employment and Support Allowance (ESA)
- 17.9K PIP, DLA, and AA
- 5.6K Universal Credit (UC)
- 4.7K Benefits and income