and he has to be homebound. He was diagnosed Mary 2017 and it has significantly impacted his quality of life. No friends, does not go out barley mostly for appts. He is now depressed and it is to the point of having a very low self esteem of himself. I am trying my hardest to help him start managing his illness but he says he just does not feel like it. I try to encourage and go by everything on FNDhope. I now am going to have to push him. Is there any other advice you can give me to help him to start motivating him or should there be consequences of taking away internet time until a task is done?
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I don’t know what it’s like having a child with FND but I do feel like when kids are afraid or confused they start looking to us for boundaries. I know my kids have been through tough times and I feel like being easy on them or feeling sorry for them makes them act out and feel worse. Nobody really likes other people feeling sorry for them. Also we all need purpose and feel like we are contributing, chores are a great way to feel empowered. My kids 7 and 9 are in charge feeding/watering ducks, collecting eggs, watering the garden and also they do their own dishes, clean rooms, laundry etc. and yes they argue with me sometimes and yes I could do all their chores in half the time and with less energy, but in the end when their friends come over they talk about their chores with pride because they are “in charge” of something.
In my own experience when I first started struggling, I spent a lot of time feeling sorry for myself and avoiding my friends. My boyfriend really pushed me and wouldn’t let me give up, sometimes I would cry and tell him that he didn’t understand that I actually couldn’t do it but he would insist I try baby steps, start with what I could do and then he’d back off and even if it was a walk to the mailbox, with my body in tremors I would feel better and accomplished. He held my vision of getting better when I was to miserable to care anymore and I really benefited from that, even though it was hard. I would have never been able to do a triathlon without him pushing me, even though I hated him for it sometimes!!
Anyway that’s my two cents, I hope everything gets better for your son.
How old is your son as it sounds like a teenager? Where are you based? I am in 🇬🇧 UK. I was 26 when I was diagnosed with FND now 28 was bed bound for 6 - 12 months straight and now it happens in bouts along with my symptom cycles so everyday, every week and every month there is something affecting me whether that’s insomnia, loss of appetite, seizures, chronic fatigue, motor weakness/limb weakness, sensitivity to light, sensitive to touch or chronic pain which is constant... there’s always something.
I would cry almost everyday, sometimes I still cry very hard at the loss of all I had, a well paying job, a house, a dog, a fiancé (all no more) I reached out to my spiritual side for me that’s God for comfort.
It helps if he has friends you can talk to or cousins that could come over and play video games with him, cards, chat etc, or even take him out to the local park, pub, night out but this is where it would help to know his age....
although I had no one only my mum at the time. I had to stare at four walls then started to go for hydrotherapy, £40 per session, this helps as water encourages movement he’d enjoy it, coffee to sit in the sun, massages reflexology and full body once a week through a friend, a friend bringing dinner to my room to eat together... things like that.
You lose contact with the world so easily and my friends were built around those I found through acquaintances to help with my care. It’s very hard to snap out of it, but he has to keep trying to push himself out of bed even if it means it’s just sitting, and someone else or yourself helps put him in the wheelchair...the baby steps.
It all sounds easily said than done but take each day as it comes. My mother comes in every morning with my sisters popping in in the day then my mother again. The times I refuse to get out of bed, I’m told strict orders that I have no choice, I’m at least going to the toilet, washing my face and brushing my teeth then back to bed if I still feel poorly.
However, by the time I’m left to sit alone on the toilet I feel better for it to have people that love me enough to give me orders not to turn into a compete vegetable, because I suffer from motor weakness like an MS patient, in those instances I cannot grip, sit myself up but can balance on supported seating, cannot do anything for myself, I rely heavily on my loving family (mum, sister and extremely close friends) when that cycle comes.
So kindness kills if you just watch him helplessly because you may be frightened to invade his space or to feel like you’re abusing him by forcing him out of bed (I’m not saying you’re purposely doing this, people become hopeless sometimes and I understand) or to override him, but you’re his dad, do what you need to do to get him out of that bed. Don’t abuse your power just be gentle but firm... like you’re giving him house chores.
My mother says something like this “looking out that window isn’t going to help you, today we’re getting you out of bed, come on...come on, she laughs whilst standing there....right are you ready, she asks, and I ignore, then lifts my bed on the controls, touches my shoulder for ore warning then arm and talks me through the movement steps she will take to a sitting position to the edge of the bed” you feel like a big helpless baby🍼 👶🏽 ... and tears fill my eyes due to feeling this way but I let her help me out of bed.
Just try to put your foot down a little with jokes incorporated through the things in his room what he is staring at when you talk to him etc as written above and you may be surprised he might call you to go to the park or pub.
Another thing, I get embarrassed about my wheelchair situation but I have no choice, best solution on arrival is to transfer to a seat if he can sit up and take the wheelchair far away not to fold and place next to him because our condition FND is funny like that - we look perfectly healthy and normal just like everyone else, and no one would ever know he is sic unless they chat to him and he decides to let them know - that’s the trick I’ve used to feel more confident when out 🤗... this will give him confidence. Good luck. With all my heart feel free to tell him about my situation that might give him food for thought
GentleFlower, actually i am mom, not dad. 😁😁😁😁 i guess Moses would make you think that. I think I will change it to MaMoses.🌟 ok, I figure that you have balance problems , correct me if I am wrong and forgive me to. Caleb is 15 years old. Unfortunately we have no extended family around because my husband is military. And as far as friends it's only online for the fact that he has pretty much been homebound since March 2017. He will start counseling soon which I hope helps to talk with someone and be in a therapy group with others . They do a lot of fun activities as to bound with one another with their struggles. I am going to encourage him to sign up with the group so he can know he is not alone. Caleb is lashing out at times and today was the worst coming home from the doctors because the fools are not understanding he is in chronic daily pain and never feeling good at all. Plus it seems with minimal activity like going somewhere else less then a hour triggers him into grand mal seizures. It's like he can not do anything , go anywhere, but I told him that we can get a wheelchair to go out and do stuff , like out to eat, a movie , when the weather cools doing things outside for the fall. but he says no wheelchair and the doctors make comments like, you don't want him to become dependant on that. Uggh😡! Not nice of them. I tell him things are going to take time to build up his stamina but he has to do the program with FNDhope.org to help manage his disorder. He also says his hopes of being a pilot are gone, driving a car, having a future, a family. Is there any advice you can give me to encourage him.
He says he has lost all hope. But I will still encourage him and I will have to push him to do his treatment plan daily. Such as getting up,daily morning routine,school (homebound),his therapy, his therapy group and activities he is comfortable at his pace doing. Maybe then he will start to see a change.
One of the major hurdles is trying to get his dad to understand on why he should not fuss at him on computer time as of now that is all he has as far as friends where he can talk and play a game He really enjoys together with them. He loves creating -building cities or other architects . He loves to draw so when his birthday comes he wants a digital drawing pad.
So this is one of the things we will talk about in therapy with his counsler regarding his time in computer. That's all he really can do as of now. Anyway, please tell me how your doing and once Caleb makes a account , y'all can connect. God bless GentleFlower🌷
So sorry mum lol... at least thats clarified. Nothing to forgive, I do have balancing problems at times, falling all over the place on and off when trying to get across the room or to the toilet or wherever in the house. But this is when I have over done it, after trying to be normal going out to enjoy the sun, meet new people, friends and family, clean, shower etc small things.
You have to take what the Dr’s say with a pinch of salt. I bought myself crutches when no one (the Dr’s that is) believed I was struggling to walk then was provided a manual wheelchair by NHS after borrowing for a while from British red cross as I had became bed bound but still wanted to go out when I could (this is a good place to start for Caleb because you only hire for free and he can have a feel), then I bought an electric wheelchair so that I wouldn’t have to wait on everyone to push me or just to go to the front door for fresh air and sunlight.
You can get a reclining electric chair that will enable him to have his seizures if that is the case. I used to have have exactly the same problem of seizures constantly throughout the day but now I only experience non epileptic seizures at night. The electric chair may be a good idea only when he can control the seizures better or with supervision on the house only on the lowest speed mode.
There are ways to sometimes channel out of them, distraction techniques.. feeling your surroundings, the fabric imagination, focusing on a picture and let these things and your imagination take you far away from the current problem.. to think about what you’re touching etc. Easily said than done and doesn’t always work even for me. But worth a try.
I too suffer chronic pain everyday and generally I have times I feel like superwoman and feel like I can do everything myself which I have to try hard not to abuse but that doesn’t last long because I always end up abusing it by going out or doing a lot of small things I usually cannot. Instead of bed resting.
The only way past this is to get a wheelchair preferably electric for him and I’m getting an Airwheel HS3 as opposed to an enigma which has batteries the size of car batteries only good for local use where no car is involved but rubbish when you want to use a car. Just have a look on amazon for ideas on the Airwheel about £2,800 as you do not want one that will give you grief to put in the car or cause a scene for him to feel embarrassed. I had to learn the hard way as I am outgoing. Do a fund raiser, or cake sale to raise funds towards this chair if finances are difficult. This chair folds itself and when he can gain control of seizure and on transferring himself out of a chair he can go out alone and make friends.
Also get a watch with GPS tracker with a help button in case he ever gets in trouble as I have this too. The watch would call you straight away mine is called a pebble watch through NHS but I’m sure you can buy.
All this is for positive thinking all things possible... talk to him like this build the excitement then execute slowly. He will get there. Just need to have all things in place. I have everything from urine devices, pads for when I can’t get out of bed, wheelchairs, walking aids, pain medication, adapted car (so he will be able to drive once he has better control on those seizures), everything set in place so nothing can take me down. Although at times it still does I’m only human.
I know I sound well above my station right now, but I get depressed sometimes, cry a lot sometimes, shut the world out sometimes, but I have set my disability world up in preparation for the worst days. Chronic pain daily is no joke but the trick is to manage the condition. I will never ever accept my condition because it stole my fiancé from me, my house, my dog, my well paid job, my planned family life and future, but I have to deal with it and so does Moses. There are people out there who will look past the condition and marry you for you, your personality etc. The more he goes out the more he will realise there is more to life than FND.
He will get better (if not fully then at managing FND) I can promise that (but maybe it’s just my optimism and all about the brain and the fact that he is 15 and hasn’t lost anything tangible apart from his independence and freedom which he can win back ) BUT... he needs to start thinking positively, aims and goals to become a pilot how he will get there....because he will. To do as best as he can everyday even if it’s just chatting on the FND site once a day for 1-5mins
I am going back to study in September and thats determination after suffering so damn hard and I still have very difficult times. I’m 28, want a family too, to get married to have a life and make money to look after myself and my family not rely on a husband or my mother and family. So he too can do it with the right support around him.
Sometimes I whale up with tears in public holding the tears back in fear of humiliating myself whilst in a wheelchair...for example when trying to get into london because of the difficulties with transport links sometimes it’s not always smooth even after booking assistance in advance with connecting to places where it would be easier walking.
I get extremely depressed just going out because upon arrival at the station I am told I cannot get on the train arriving because of safety reason that need clarifying so I will need to wait to get on the next one because I’m in a wheelchair it’s frustrating. However, myself and my mother make jokes about the way my life has turned out and how I’m coming back strong even as a disabled person and going to put my stamp in the world and make a statement.
He can do anything he puts his mind to.
Please Contact me privately on messaging when he has his account and is ready for a chat... And we can fight this FND together. Lots of love and encouragement for his bright future ❤️
Part of his depression may be the fact that he is not getting any daylight. It helps form vitamin D and serotonin. I know how it feels to be so low. I used to look at the FND Hope website and see smiling faces and just be totally put off by it.
Is he getting at least vitamin B12 and D? Vitamin B6 also helps form serotonin. He may benefit from an SSRI if he can tolerate them. If not maybe try light therapy through a blue light box if you can afford one if he can't get outside. Even if he just sits out for half an hour a day then it gives his body a chance to heal. Getting boys to get enough daylight is hard enough at the best of times.
Distraction through playing games is not harmful, but too much light from screens won't help, it interferes with sleep and can trigger migraines. Maybe see if you can download blue light filters to his devices. If it is messing with his sleep then that will make his FND worse. Books or talking books in the evenings. I stop the screens at 9pm. Depending on his age that could be problematic, but if you can agree a plan with him. Maybe think of rewards rather than punishments.
Pushing him won't work when he is tired and it will make his symptoms worse. You cannot push through this. If someone with FND has fatigue it is very dangerous to push more physical activity than they can comfortable manage. The advice on pacing is to do 75% of what you can comfortable manage.
Perhaps target his mood first. If he can tolerate an SSRI get to see his doctor. SSRI's usually fail if you are low in vitamin B6 in the first place. Try him with supplements and daylight - they can take up to a year to work, but some can work faster, but it's never overnight. If he has gut problems or gastritis then use vitamin sprays under his tongue. They will absorb through his gums straight into his blood stream.
Targeting his sleep will be difficult without his co-operation. It makes such a difference though if you can persuade him to get into a routine. FND can be a vicious cycle.
I'm afraid progress can be like water wearing away a stone. He will have set backs. He is not himself. This is part of the FND. His brain is undergoing a lot of neurological stress and he will need lots of rest. If he gets an infection it will make things worse further still. I'm afraid it's a long journey, but they all begin with a single step. It's taken me almost a year to start to see the beginning of the end. He needs to know that he can improve his quality of life.
Get some help and support for yourself too. It must be so frustrating for you. I know I haven't been easy to live with. Especially when I was so depressed and I'm a grown up. Remember you are not alone. He is lucky to have someone who cares so much.
Fnd is a horrible condition and it affects ever part of your life.
ive had it now for a couple of years and im so called home bound my outaide time is sainsburys with aid of wheelchair or walking using trolly ' fall into everyrhing ' its hard to go out as for one deep down inside its tearing u apart you want to be your old self and for some reason you cant and for 2 you think every one is judgeing you or looking at you which there mostly not but it really does not help. but try to be patient with him and please dont false the matter my mum has tried and it just makes things worse on the other hand my wife is brilliant and does get me out to a shoping centre not often but it has been done but she knows if i cant take it we leave and thats a good thing but she does not false the.
please dont cut back internet time thats his only escape and a way to be socail if he plays online games but i can see it from your point of view you dont want him stuck in internet world i do get it
its still really early days still after 2 or so years i struggle with coping and im 39 with a child of my own so i get where your coming from as a parent even thoe i got this horrible thing i still have to be a dad and fight but its hard
try helping your son to break down his days into chunks and never set things in stone as things change fast. im not sure ive really helped and im sorry if ive not
i can see the hurt and frustation
try to keep him as postive as possible without over hypeing stuff
I am sorry you and your son are dealing with this. Taking things away or giving him tough love probably will only make him feel more hopeless. You can try tactics such as let’s go for a drive today and get some fresh air....let’s pick something to do today that is outside... let’s get you ready to do something with your friends today. If you word things like this in a way that is a sort of statment and a question it makes him still feel like he has control over what he does, and makes him feel like he is not alone bc you are using “let’s.” His depression may start to have less of a hold on him if you try this tactic. Once he is out of this mental state he will be able to challenge himself more physically and start to return back to a more normal level of function. While dealing with his depression he really will need to know he is not alone, so do not give up on him when he pushes you away, because even though he is pushing you he really just wants you to be close. I would make sure he is in the FND Hope support group and you may also consider a counselor. If he doesn’t talk to you, at least he will be talking to someone. Best of luck.
Oh, I saw you put in there once he is out of his mental state he will challenge himself more. Great, I have his 1st appt. With his counsler soon. And I know this will involve our family as a whole. So as of now I think getting homebound going, his therapy and him going onto this sight to give him understanding about his disorder is the 1st step. I want him to at least walk around the block but he does not want to. Says he does not feel good. What should I do ? Let him just start first with other steps above then work up?
Sorry to be annoying but I am wanting the best for him in his treatment and to get better to were he can then know how to manage.
I do think that starting with seeing a counselor is a great first step to helping him come out of his depressed state. So, yes I would start here and then work your way up. I think this disorder is especially hard to deal with because doctors don’t have definitive answers as to what even causes FND, and so how can you understand it yourself when they don’t even understand it....and if they don’t understand it then how is there hope to get better? These sorts of negative thoughts are ones that sometimes still linger in my mind. Mindfulness/meditation, and my faith in God has really helped me focus on the positive. I focus on what I can do and what I have rather than on what I can’t do and don’t have. So, maybe these things would help him as well. I use the Holy Bible App to do daily devotionals...and also use the Calm App for mindfulness/meditation.
Sorry for interfering again. I've just seen you write the bit of how your son is in daily pain. Recently I came across magnesium oil. Not really an oil, but a concentrated solution of magnesium chloride. It relaxes muscles and can even help increase magnesium levels in the blood which is good for FND sufferers as we are usually low.
I've found it relieves my pain sometimes instantaneously (though I'm not sure how it works so quickly, but it does so I won't pick holes in it). It's also great for cramp type pain too. I get excruciating chest pain if I over do things and it even works on that. You can even buy magnesium chloride salts to make up a bath too. It works well with massage and people say it helps them sleep. Readily available on-line. It can sting some people so always do a patch test.
It can help you too if you have period cramps, just spray on the area on your abdomen where you feel cramping (avoiding hairy areas if possible as it's more likely to sting there).
I hope you give it a try. It certainly has increased my quality of life.
I wish I had a mum like you. Mine goes around telling everyone I'm mad not ill and I deserve to be in a wheelchair because I'm a bad person. Well they are not all locked up!
The main vitamins to take for FND are Vitamin B12 and Vitamin D. These need to be higher than in the general populous. 550 or higher until symptoms resolve for B12 and about the same for vitamin D (if they have been checked then ask for the levels as they tend just to say "normal" when they are 200 which isn't good for us). B12-vitamin.com has a lot of information on B12 and which supplements are best and how best to take them.
Magnesium is important too. If your son has gut problems or has tried tablets and felt no benefits from them then try through sublingual spays. These tend to come with less additives than tablets. B12 is light sensitive so it needs to be kept away from direct sunlight. I keep my sprays in the fridge (except magnesium oil). There is a list of various supplements that people have found useful on the FND hope website:
From the HOME page click on the FND Living and choose Healthy FND Living. There's a list of them on there in the section on nutrition.
Personally I take the whole range of B vitamins as they work together as a complex, but they are not all available through sprays. I take a high amount of B6 as people with thyroid problems like me have a higher incidence of B6 deficiency and I was symptomatic. Interestingly enough B6 deficiency is the main cause of fitting in children where there is no known cause - not sure if that refers just to epilepsy though. So if he has any other medical conditions or problems look into how to optimise them too.
They do not work over night. It can take up to a year to start seeing benefits. There is other help too on general advice, pacing etc.
Im chris..my wife has fnd....diagnosed oct. 2016..ive been taking care of her..she's doing a lot better right now(a lot)..i study everything about fnd i can(to the extreme)and I've learned tons..do u might telling me your sons symptoms
Yes, of course seizures are the main thing . A lot of pain daily, the more he does actively the more pain he is in and the more seizures he has. Muscle and joint pain, headaches everyday , stomach nausea on just about everything he eats. I noticed one are meats and heavy breads. He can be in bed and feeling somewhat ok , not much but then suddenly he starts going downhill into the level of pain increasing and seizures. My heart is breaking because of the toll it takes on him A lot and then my husband and I because I do not agree with the computer issue. But tonight when he comes home i will show him the comments and hopefully see. Please we are going to do family therapy on this. It impacts the family as a whole. It really don't eat much because of his stomach issues. I also have a question? It hurts me through my soul that doctors are so cold in having empathy on him. I hate the word conversion disorder, psudeoseizures , pathogenic seizures. It does not help him. And then the stigma of medical staff looking down on us. How do I tell the doctor to not use those terms around us. It's offensive and embrassing. Caleb wAlked out of the doctors office so angry and hurt because he is so dissmissed. Is there any advice you can give on that problem also? Thank you for taking the time to respond and help. MAMoses
I don’t know the laws where you live but last year I was having three seizures a day, though I’m not sure if they are epileptic or pnes ( one abnormal eeg and one normal) maybe I have both? Anyways the keto diet and low thc and high cbd basically saved my life. I went from being a miserable blob to driving and working again. It’s been two months since my last seizure!! It’s easy to feel depressed when you’re having seizures constantly, honestly it’s not living and I hate to think of a young person dealing with that and then dealing with er doctors and neurologists who treat you like badly. I had doctors treat me like a drug addict and drug test me, or say things like I just need to eat more and say well next time you feel a seizure just try to make it stop! Really? It’s just horrible then they want to experiment with seizure meds which have horrible side effects ( including suicidal thoughts, which I had, very scary.)
I don't think I'd turn to punishments (he's already feeling punished enough, I'm sure, just dealing with life in general). A wonderful thing you could do for him to not only encourage him, and bond with him, but also make him feel "alive" again.... paint with him. Most craft stores sell packages of 4 or 5 canvases for $20 or less, and it could really improve the way he feels about himself. This kept me from seeing a psychiatrist ($40 a visit - I can buy a lot of paint with that!) With my self-provided paint therapy, I was able to cope with the mental side of FND quite well. It also helps to talk to a therapist - BUT, if he's feeling bummed as it is, a therapist can invoke a sense of "I have a problem", vs "I have a life despite having a problem". To combat that feeling, have friends or family come and visit with him - share pizza, bake cookies, watch movies as a group. He probably feels as though his whole life/world revolves around FND. Sometimes, it's nice to not talk about it at all.... and just share stories and jokes. Just make him comfortable, and encourage confidence. These are things that REALLY help ^
I am so sorry your son is sick. I do not believe in Functional Disorders unless they rule everything out and most Doctors will not do further testing, it’s easier to just label you. I had that done to me at the Mayo Clinic. I have Autonomic Failure, not Neurological Functional Disorder. Please get an other opinion and don’t even mention FND to the new Doctor or otherwise they will not do any further testing because your son has a label. I was so disappointed in the Mayo Clinic.
Just before I finished my degree in social work but I haven’t been able to practice due to this condition. As many with FND can identify FND symptoms works in circles meaning that some of these symptoms temporarily disappear and other appears and vice versa. However, since the past years my symptoms have improved drastically. I used to be bedbound due to episodes of completely paralysis but I haven’t experienced episodes of paralysis since April 2017. My life has improved since I started to accept and understand this diagnosis. I did a 6wks inpatient rehabilitation programme at the UCLH in London and I can say that it made a difference, in the way that i see this condition and how I managed today. subsequently, thought the process of my recovery has been slow, I’ve noticed improvements. You can ask moses’s doctor to refer him to UCLH for the programme. It is quite intense but you really learn a lot. Well like Gentleflower has said God has been an important part for my recovery in a way that you always have hope and the will to fight. As a Christian, My beliefs in Jesus helpes me to keep depression away. Anyway I hope all goes well and tell moses to try not to panic or feel anxious cause these two makes the condition even worse. All the best.
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Stepping back into the light...update, new dxs and lots of new directions. Long, 
confused
Please help...
Friend with FND. Lost hope in life
