STARS
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FND / NEAD Adolescents

Hi all. My 15 year old son has been diagnosed with NEAD / FND, and I was wondering if anyone is aware of any Facebook or other groups specifically for adolescents. I've joined every group I can in a effort to get some specialist help and advice in this area, however, due to his age, anything useful I've found is for adults, not paediatric! I've even approached professors, doctors and specialists by email, however keep hitting brick walls due to his age.. I'd welcome any advice or feedback! Best wishes, Lynne x

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Hello Lynne

I hope that we can help you. STARS provides information and support to patients and their families who live with RAS (reflex anoxic seizures) reflex syncope, and psychogenic blackouts.. I have briefly read a little about NEAD and I think you might be interested in reading our booklets, which can be downloaded from heartrhythmalliance.org/sta...

There is a STARS Facebook page facebook.com/blackoutstrust which you might find helpful too.

I hope that these will help you to understand your son's condition a little. If you have any questions, please do not hesitate to contact us on info@stars.org.uk

Regards, Rachel - STARS patient services

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hi my i think my lil boy has same problem hes 11 and since oct he blacksout but it only really happens at school when hes stressed nervous or upset and also if he does a biology lesson we have episodes episodes ( thats what we call them) 3 times a week 😢 people have told me counselling and cbt helps im still waiting for difinitive diagnosis still x

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Bless you! First, don't panic! I know it's scary, but as long as he has been checked over medically, you are already doing well to know his triggers and looking into therapy and CBT. They are the right way to go. By the way, horrible as it is, sometimes people don't understand that he has no control over his episodes. Just a heads up! You know your child, and believe him. Feel free to ask anything, but I'm just a mum! And there is a really high success rate with therapy and CBT! Younger FND Fighters is a really good Facebook group. FND is another name for it, functional neurological disorders, also PNES etc, so also a heads up! Xx

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Thankyou lynne have you been to any therapy? My gp reffered my son to cahms i really hope they can help x

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Yes, bless your heart! We've been in the system for two years, as his symptoms are severe, and he has not been able to attend school. Unfortunately, therapy was a trigger for him, and so was cbt, but he is now getting treatment which, fingers crossed, continues to help. I hope your son is doing okay x

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My sons is severe too hardly ever at school feel helpless school dont help really shouting at him when he feels dizzy then he just blacks out it takes longer for him to come round everytime his eyes close and cant swallow or move or answer us .

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If you have a diagnosis, the school SENCO should be making sure that he is getting help, and not being shouted at, bless him. That will only make it worse for him! Even if you don't have a diagnosis, the school has a responsibility to educate him, and if they are making it worse, CAMHS should be talking to the school, to back you up. My son had medical access to education arranged through the council. If he is struggling to get to school, you should have access to this too. I ended up referring myself to social services to get extra help, but even that took months! This has a lot of different names, dissociation is the main term used by CAMHS, and a lot of schools, and even doctors, are not fully aware of all that is needed for sufferers. Its horrible for them to not be believed, and accused of faking symptoms. The school have a responsibility to help, even without a diagnosis, has anyone mentioned an Education Health Care Plan? Again, it can take a while to get in place, and is a lot of paperwork for the Senco, but it is the next step in getting him help. Keep strong, and if I can help at all, just shout! Again, I'm only a mum, but I have been through the system! Xx

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Thankyou i suppose ill no more once we see cahms x

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If it is taking forever for a CAMHS appointment, again the school should have access to a CAMHS nurse, who could also help. There is a charity called Eikon, in our area, who offer youth support, and they can also back you up. I hope you have them locally to you too, if so, it is worth a phone call! They have been excellent, guiding us through the system. Good luck, and shout me if I can help xx

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We dont have eikon its surrey based im in leeds 😢. Some ppl have mentioned to get help from social services but cant seem to find online how they would help x

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We originally had access to Eikon, when the school was looking into a mentor as a possibility, a sort of big brother / sister type thing. Again, the school should have access to a mentoring charity or organisation, and can hopefully refer you. If the school isn't being helpful, you can also try your GP, or you can try requesting the school CAMHS nurse appointment, to discuss the situation, and they should know your local Eikon equivalent. Unfortunately, this waiting game bit was the worst for us. We knew that he needed special help, but waiting lists, and not knowing which way to turn involves a lot of phone calls! I'm sure I became the mother from hell! I referred myself to social services, which again took time, but eventually lead on to help, but initially it gave us access to the Early Help Hub, an information service set up through the council, who should be able to give you contact to services in your area, but you have to know what to ask for. The Citizens Advice Bureau may also have some contact information, so may be worth a try. If your son is able to talk about things, we used young minds, which gives you access to a one hour slot to discuss the situation, which I did on his behalf, as my son has episodes talking about it. Fingers crossed for you! Xxx

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Thankyou soo much i will see how tomo goes with camhs x

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Hi so been to camhs they said its dissotation shes gonna speak to school and thts it till 10th may feel a little deflated tbh i expected more from the appointment just said send him to school as normal grrr

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I can understand why you feel like that. The diagnosis of dissociation is actually a good thing. It's a recognised condition that the school has to take notice of. He has triggers which you have already picked up on. So school, once they know that he has dissociation, have a duty to take account of that, and know certain things stress him to the point of dissociation. Unfortunately, there isn't much that will happen quickly, in our case, we didn't have a useful diagnosis for over a year, so you've skipped that bit already! Once school know, they can make sure they are not making things worse. Then it is regular CAMHS sessions, to help, which have good success rates, but will take a while. I ended up printing off some information sheets to give to the school so all the teachers knew about the basics. They want him to operate as normally as possible, and keep on keeping on, this with the therapy to try and talk about recognising trigger warning signs, which can be enough in itself to make thing's a lot better for him. Unfortunately it takes time, but fingers crossed for you both! If I can help in any way, please shout! Xx

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Iv aready struggled with school so doubt they are gonna help 😢 and if cahms dont tell them i have to i thought camhs would have a meeting with me and school grrr thankyou for your help i dont have a printer but i really am interrsted in taking sheets to school x

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If the school isn't being helpful, don't be afraid to contact the educational authority at your local council, and explain the situation. CAMHS should contact the school, but may only do that after a few sessions, and they have completed various paperwork. It's awful to see your child suffering with this, and for everything to take ages, but unfortunately it is the system. I have met other mums, in similar situations, who have been accused of attention seeking, on behalf of their child, who is also faking symptoms, and had no help at all, until thing's get to crisis point. I understand that this condition is not very well known or recognised, by not only schools, but by doctors too, but with CAMHS behind you, to back you up with a diagnosis, they should act. If it was a diabetic diagnosis, they would have to enforce a care plan, but with dissociation, they need to understand that this is a genuine condition, and not a faked one, which also needs a care plan. Good luck! Xxx

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