I'm a caregiver of a family member who was diagnosed with FND back in July. Our journey has had its fair share of challenges, as I'm sure many of you can relate to. Things took an unexpected turn recently as her FND symptoms experienced a severe relapse following a non-epileptic seizure at school last week. While our hearts are set on seeking the best care, the reality is that many of the specialist appointments we've tried to secure are scheduled a daunting 1-2 months away. In our quest for answers and relief, we're eager to explore every available option. We're currently based in Texas and are really trying to find some great doctors who specialize in treating pediatric FND, especially considering that she's 17.
If any of you have encountered doctors in Texas who possess a compassionate understanding of FND, or if you've had positive experiences with medical professionals who specialize in this field, your insights would truly mean the world to us. Your shared wisdom could provide us with much-needed direction during this pivotal period.
Thank you in advance, and I'm sending warmth and positivity to each and every one of you. 🌻
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MichelleL_BlueFaery
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I am based in the UK and it took me forever to get a neurologist appointment, my son was diagnosed last June with Regional Chronic Pain Syndrome and whst functional disorder mentioned in correspondence, never really got an FND diagnosis until later on in the year and it took a while for me to get my head around it but all the symptoms seem to fit.
Has she just gone back to school?
We are still on school holidays and I guess poss in remission but its hard to tell with teenagers.
Thank you so much for sharing your experience. It's comforting to know that we're not alone in facing these challenges, even when they span across different parts of the world. I truly appreciate your empathy.
Yes, my younger sister started her senior year 3 weeks ago. Your words of encouragement mean a lot, and you're absolutely right—being kind to ourselves and not stressing too much is something we're trying to focus on.
Wishing you and your son all the best, and thank you once again for your support💙
Your welcome.Check out the FND Hope site and our UK one:
neurosymptoms.org
How is she settling back in?
With reference to the seizures check out the graphic novel on the above site, really well explained and if you look on my posts I refer to a link to a handbook written specially for children/young adolescents. I sent the link to my son and convinced he hadn't bothered to read it, spent one evening printing it out a work. Little monkey smiled and said he'd read it.
I also bought him a book on "our emotions" although don't think even opened.
Our neurologist hit in right on the head, my son has been through a lot of changes, losses, and if you add to that changes from a child to an adult and me being a carer throughout Covid and beyond and not being here as much so very torn, its not surprising any unexpressed emotions within his brain could trigger alternative responses.
Thank you for the valuable information and resources you've shared. It's amazing to know that there are supportive communities and helpful materials out there to assist us on this journey.❤️
I'm glad to hear that your son has received some benefits from the graphic novel and the handbook for children/young adolescents. It's often a process for them to absorb and engage with such materials, but every little bit helps.
Your sharing about your son's experiences and the challenges he's faced deeply resonates with me. It's truly touching because my younger sister has also encountered a series of changes and losses throughout her childhood and teenage years, including a divorce in the family and the difficult process of coping with grief during the COVID-19 pandemic. Your words echo a universal truth—life's twists and turns can stir up a whirlwind of emotions, and when those feelings remain unexpressed, they can manifest in unexpected ways. It's reassuring and heartening to learn that your son's neurologist recognizes the emotional dimensions of this journey, something I hope our neurologist will do too.
As for settling back into school, she seems to be starting to get the hang of it. Her school was able to make accommodations for her and that has seemed to help her a lot. So far, it seems like her symptoms flare up or become more severe every month for about a week. On the bright side, she is becoming more aware of the 'feeling' she gets when she feels like her symptoms will get really severe (non-epileptic seizures, paralysis, etc.)
She is seeing a neurologist for the first time this week since her FND diagnosis. Fingers crossed, hopefully, we are headed in the right direction.🤞
Again, thank you for sharing your insights and experiences. Your empathy and compassion shine through, reminding us that we're not alone on this challenging path. I'm sending you and your son warm hugs and best wishes😊
Hi, watch the podcasts by the FND experts too, give you a better understanding by member: 210272.Maybe help identify any patterns or triggers (if any) of your sister whilst you are awaiting professional help.
Hi I only know about adult FND having Motor FND and done the UK Rehab program.
However, they did recommend a book which does more or less cover the same topics as Rehab, which was mainly based on Cognitive Behavioural Therapy several years ago.
Non-Epileptic seizures are common and usually stress reduction does help. One sufferer I knew, used self-help general stress reduction apps on his mobile (cell) phone while out and about - to calm himself down if he noticed his stress levels getting out of control to avoid a seizure.
And you should know that just because a symptom is not listed or mentioned in the FND medical information, there are a huge range of individual symptoms which different FND Sufferers have; and they are still all diagnosed as having the same condition - FND.
You can buy the book Online and it is helpful, with worksheets to try and find out your individual triggers and symptoms frequency etc.
'Overcoming functional neurological symptoms a five areas approach'
authors inc. Professor Christopher Williams.
ISBN 978-1-444-13834-4
The UK also have Professor Jon Stone who is well renowned and provides an advice website:
There is also FND Hope (now with branches across different countries) which has live and recorded podcasts and keeps more up to date (especially the USA original website):
I hope you get something reassuring sorted soon, in the meantime remember there are 3 main stressors for FND, Physical = body and limbs activity, Mental = concentrating and thinking about tasks and Emotional = stress, worry, fear, anger inc. social interactions.
So pacing each day and not taking things too seriously when things fail or do not go to plan, even end up not getting done that moment - know they can be achieved just maybe later on. Its important to keep an open mind and positive attitude. Aim for bite sized achievable goals but will much bigger timescales.
The school should be asked to consider longer assignment timescales to ease the stress levels and or provide similar support as they would someone with Dyslexia, which is a very common educational need in the UK which also involves the brain getting mixed overloading signals.
Thank you so much for sharing your insights and the valuable resources you've recommended. It's incredibly helpful to hear about your experiences and the strategies that have proven effective, particularly in managing non-epileptic seizures and reducing stress.
The book recommendation, 'Overcoming functional neurological symptoms: a five areas approach,' along with the online resources you mentioned, is a treasure trove of information.
Pacing each day, setting achievable goals, and maintaining a positive attitude are valuable lessons that we are working on with our journey.
Luckily, her school has made some accommodations for her that has really helped reduce her stress levels.
Thank you once again for your kindness and guidance during this time😊
Can I ask what adjustments the school have made? My son's school gave him access to a room that was accessible from outside, no stairs etc, walking around and previously a toilet and lift pass but he didn't like it in there and when he could walk, well everything was normal, so no need.
Since recent falls, I am struggling to see what I can ask them to do. I will just see what Monday brings (tomorrows another day) but with missing nearly a year and final exams next year, a bit at a loss.
Glad you found all resources helpful, do checkout the latest Podcast on member 210272, I listened to it over and over and made notes.
I bought my son a book on emotions as recommended on a Podcast on the Migrane website, will find the details for you. Barely been touched, so think I may check it out too.
Yes of course. My sister's school made some specific adjustments to help her manage her condition effectively. Since she's in her senior year of high school, she had a pretty demanding schedule with eight class periods each day. Her school is quite large and has multiple stories, which initially posed challenges for her. Prior to accommodations, her classes were scattered across the school, and the short passing periods (only 10 minutes) made it very stressful for her to navigate between classes, especially on days when her mobility was compromised.
To address this, the school adjusted her schedule so that all her classes are now on the first floor and in close proximity to each other. This change has been a game-changer for her because it accommodates her varying mobility challenges—some days her movement is slow, while other days it's more normal, but it's difficult to predict.
Additionally, the school provided her with a quiet room where she can retreat to whenever she feels overwhelmed or experiences sensory overload. Having this safe space has been really beneficial in managing her stress levels.
The school also allocated two free periods within her schedule. These free periods give her the opportunity to rest and recharge with the purpose of reducing stress and allowing her to better manage her condition.
Navigating the complexities of FND and finding the right adjustments can definitely be challenging. I’m sorry to hear about your son’s recent falls. Tomorrow is indeed a new day, and I hope Monday brings positive developments for your son. I wish him a smooth transition back to school.
And thank you so much for sharing your insights and the resources you've found, such as the podcast and the book on emotions. If you ever want to share more or if there's anything specific you'd like to discuss, please don't hesitate to reach out.
Sending you and your son warm regards and positive energy,
Thanks, I wasn't sure if I gave the title and author to you but guessing you accessed the Migrane Summit website too.He always says he is fine at school when able to go in but a quiet room is a good idea and a break between sessions too but knowing my son he will think thats as he is at school he should do the lessons while he can.
I was discussing about helping with schoolwork at the weekends when head pain had eased but not interested. I am trying to help but can't help but think am I giving him more to stress about.
Let me see what I might be able to tell you that might help.
The fact that you have a diagnosis is great. Secondly, the fact that you understand FND is also great and finally that fact that you care and are able to provide support and reach out for it yourself is awesome.
From my perspective and experience:
As you can see there are not a lot of healthcare organizations and professionals that specialize in this disorder, but don't be discouraged. I think many do Telehealth and it has shown to have positive outcomes so far vs. in person so geographical location may not be as much as an issue, but the providers will advise what is best not me.
Also, FND Hope has a provider map on their website with providers all over the world. Did not see anything in Texas.
There will be several options for care and this is all based on my experience with providers. With constant seizing daily you don't want a fall resulting in a TBI or a sever injury (brain injury) that becomes a serious long term issue. So safety is super important and number one everywhere until the system calms down and less seizure type events occur.
There are residential providers, outpatient providers and hospitals if someone does not have a caregiver. Many will say they have experience treating FND, but many do not so if it is an acute case they will not have the staff and safe facility to handle it which is very important.
From my experience I personally would not seek help from providers that are not experienced or trained in FND. Very similar to EMDR work of which I did a while back. It usually involves trauma work and it requires special training.
Cheers!
Pat
Take a look at this from FND Hope Provider Search CA. Sorry nothing in Texas.
Thank you so much for your thoughtful response and the wealth of information you've shared.
We'll definitely explore the FND Hope Provider Map and keep searching for experienced professionals who can provide the best care in our area. We'll be vigilant in seeking out those who can offer the necessary care and support.
Thank you once again for your kindness and for taking the time to share your knowledge. We're grateful to have people like you in our corner.
Michelle, we are in Texas also, and my child (elementary school age) was diagnosed with FND in January. We've also struggled with finding resources for her, and specialist appointments are particularly hard. Dell Childrens seems to have shorter wait time than Baylor Scott & White, if you're in Central Texas. We're also looking at a practitioner in Dallas, who would be partly telehealth and partly in person .... haven't seem him yet, so can let you know once we do.
Thank you so much for reaching out, and it's comforting to hear from someone in Texas who's going through a similar journey.
If you get a chance to see the practitioner in Dallas and have any feedback to share, we would greatly appreciate hearing about your experience. It's always helpful to have recommendations from others who are on a similar journey.
Take care and wishing you and your child the very best,
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