Hi i am a mum of a 9 year old girl who last week got told she has fnd. We have never heard of this and was wondering if others could give us any advice of what it is and what it involves. My daughter last year got diagnosed with hypermobility since then things have started to go wrong. She has had dislocations of her shoulders elbows hips knees fingers and toes in august she started to have seizures which got investigated in february we are still waiting on the results. She has walked with a crutch since February but since 2 weeks ago she has been in a wheelchair as she has refused to weight bare says it hurts to much. We went into hospital for a week of tests which showed clear. Last week we got told she has fnd but were not told anything about it or what to expect and i cant find much about it online so would be very grateful of any helps from others. Thank you
My 9 year old has fnd: Hi i am a mum of... - Functional Neurol...
My 9 year old has fnd
Hiya, how worrying for you as a mum. I assume they have assured you that her neurological symptoms are nothing to do with the hypermobility?
I dont know if you are on Facebook but there is a group for youngsters with FND where you might find some other parents. FND Hope also have a group and FND Action.
facebook.com/groups/2596112...
Thank you for your reply. No they havent told me anything at all except for one doctor at a different hospital whi told her its all in her head to get up and walk
It's not in her head at all but there are some very outdated ideas still floating around amongst MOST members of the medical profession sadly.
I saw one of the top specialists in the country a few weeks ago and he told me he often sees these symptoms develop as a response to pain, illness and fatigue. That said, the jury is still out on why these problems develp but essentially, it is a problem with the brain's access to the body and there are many different ways this can manifest.
Are you in the UK? If so, I wonder if you can get a referral to one of the specialists, there should be a list on the FND Hope website.
Here is Professor Edwards talking about FND. youtube.com/watch?v=Lh7SCUl...
This young girl is 18 and hers developed after a course of antibiotics! youtube.com/watch?v=9_vXyHk...
Hi Mum06. I'm an adult. I was diagnosed in January this year. I'm still trying to get my head round it. I feel sorry for your child. It must be horrible. If you go on the internet and on sites. It does tell you things. Not everyone has same symptoms. They are worth reading.xx
Hi Mum,our son has this.his started at about that age. The best web-site to go to as i do also is FNDhope.org. they specialize in this Disorder. Is a major life changing disorder. They also have on their how to manage this disorder.our son has been homebound almost a year now because of how it impacts your quailty of life and the impact on your family. Please check out the web site because there is a wealth of information. You take care and i hope this site will help you tremendouslyBye💜 purple is the color awareness of Fndhope.org
You said she has been diagnosed with FND, but you didn't say why. If you wouldn't mind letting us know what symptoms they have attributed to FND then we might be able to give better advice. It sounded like she was diagnosed based on not walking, but she is not walking during to pain, so I am very unsure what on earth that has to do with FND.
If she is having dislocations that regularly, you need to start exploring treatments for that immediately, before she irreparably damages her joints. Trying to find physiotherapists that are well versed in hyper mobility is difficult and incorrect treatment can actually damage the joints even more.
You absolutely need to get referrals to rheumatology and then onto a geneticist who can explore a diagnosis of Ehlers-Danlos Syndrome. The most common type is a medically benign form called hypermobile EDS and due to changing diagnostic criteria, most will be moved to a diagnosis of hypermobile spectrum disorder. If you have heard all of this before then sorry, but if not this is something you need to get onto right now. Aside from the full dislocations, she may well be suffering multiple partial dislocations which are incredibly painful.
I would seriously beg you to try and get a second opinion about a FND diagnosis if she is not weight bearing because of pain. I find it absolutely crazy if I understood you correctly. Even if I am mistaken about the FND parts, you still need to address the hyper mobility as a matter of urgency
I second this opinion. This is a diagnosis that they will pin on your daughter and then no one will give her real help, for her real problems!
You are her only voice...do not let them keep her suffering! Do not accept this diagnosis!
Have they checked her for Autoimmune Encephalitis or Dysautonomia? Have they checked her antibodies for Autoimmune Encephalitis? It’s a blood test that any doctor can order and send to Mayo Clinic to have tested. Has she had a Lunbar Puncture? An brain MRI with contrast? Please don’t let them label her just because they aren’t smart enough to figure it out! There is a doctor out there that will help you but it’s not easy finding one.
My grown son was told he has FND because they didn’t know where his neurological problems were coming from. Because I would not accept this, they found a tumor on his thyroid that they think is cancer and he is having his thyroid removed. He also has many blood tests that are out of range and we are trying to FIND out why without labeling him with “the mystery illness FND!” That diagnosis is many times given, because they just don’t know! Please stand up for your daughter and FIND out what is really wrong with her!
Im sorry to hear about your son i really do wish him well. She has had an mri with contrast they said it was fine just a section if her brain where the grey and white matter merge together but says that wont cause her the problems shes having. She had 3 lots of blood tests done when we were in hospital a coupleof weeks ago which they said is fine but no she hasnt had a lumber puncture. I have just looked up and booked her in with a private hospital which she has an appointment now in 2 weeks. I also have an appointment tomorrow with her physiotherapist and 2 consultants to discuss this further after i called her today asking her to set it up.
They told me all my son’s test were fine too but when I got a copy and looked, there were many blood tests out of range slightly and a few that were way out. When I asked the doctor, they said it had nothing to do with his problems. That was not the truth! Keep going till you find a doctor that will help your daughter.
My son also had T2 intensities in the mri and they told me the same thing as they told you...not the right area to cause those problems! Really? They think something showing on the mri of a 9 year old is normal? Keep searching for answers!
Hi, she sees a physiotherapist every week for her hypermobility as she has very low muscle tone which causes her to dislocate so easily. She has muscle spasms, jerks, tics she has lost strength in her lower half of her body from the waist down, she has non epileptic seizures. She has real bad headaches has blackouts. She has poor concentration and fatigue. She has an appointment with rhumatology next wednesday for further blood tests. She got sent to a child psychologist who has said she has fnd but will discuss it more when we go back next week. Thank u
I'm glad to hear she is having the appropriate physiotherapy, it is so vital to dealing with the issues caused by hypermobility. Was she diagnosed by a psychologist or neurologist? Psychologists are involved in the treatment of FND, but in no way should be diagnosing it.
It might be worth asking for a referral to the royal national orthopedic hospital for help treating her hypermobility, but I am not aware of whether they take paediatric patients. It is certainly worth bringing up at the rheumatologist appointment.
Thank you i will bring it up when i see the consultants tomorrow. She was diagnosed with 2 neurologists and the psychologist as they were all in the room at the time and all agreed at same time.
It sounds like she has been diagnosed properly, based on positive signs, rather than the often incorrect diagnosis of exclusion that has been an issue for so many people. That is a good thing, you can move forward with that.
Whilst FND can come and go, change and evolve, the hypermobility will be causing her issues for the rest of her life, so you may need to accept that some changes to your home will be necessary. Don't feel afraid of asking for practical help with adapting your house, getting adapted vehicles, funding wheelchairs etc. The physical toll that having to carry someone (even if they are relatively small!) is very real and you need to protect your own joints and back from damage and injury too. There is help out there if you need it.
Thank you i will look into all that as they said she will need a chair lift and other things put into my house for her to function easier for herself.
You may want to look into the disabled facilities grant. It is paid by local councils for adaptations to your home.
I’m so sorry to hear that you and your girl are going through this. You must be feeling quite distressed. I highly suggest you check out the websites FNDhope & neurosymptoms.org first of all.
Secondly, I want to throw a few things at you which are helping me through my diagnosis of FND - the first one is CBD, which can be very helpful for youngsters. I’ve also been using cannabis which helps tremendously and while I understand it is illegal, many parents have started using it to treat their children’s seizures. I have no idea if this is helpful for FND related seizures, but it may be worth looking into the CBD and doing some research into cannabis (THC) and if you feel it could benefit your daughter for the future. Personally, I don’t give a damn about the law, if something helps that dramatically I will use it - especially for my loved ones.
Secondly, I’m currently recommending Antony William/Medical Medium to everybody here, as he offers a lot of information about chronic and mystery illness that is currently unknown amongst our doctors and other medical professionals. I’ve been following his protocol, and many of my symptoms have become much more bearable and I am functioning much more highly compared to before when I was bed bound and in constant pain/discomfort/distress. I can’t promise that your daughter will benefit the way I have or the way many others have, but as a mother, I recognise that you will likely be willing to do whatever it takes to improve your daughters wellbeing and life in general. I can’t recommend Medical Medium enough.
I have benefitted a lot from coming away from my doctors (don’t get me wrong they’ve been very helpful, but their knowledge is sadly currently very limited on treatment for FND) and decided to do my own research. I’m eating foods that reduce inflammation in the body which is having great results for me so far. I am by no means cured, that will likely take a very long time, but I feel a bit more like my old, well self already.
Good luck and much love to you both.
Thank you very much i will look into it all i will do anything to help her shes went from being a dancer and model and extra on tv to being in a wheelchair in constant pain being carried everywhere. Thank you
Look Medical Medium up on Instagram, he is constantly sharing stories of people who have gone from being disabled to having their life back. I don’t want you to lose hope because after all the research I’ve done since my diagnosis, I truly believe that recovery and healing from FND is possible. Sometimes we have to take our health into our own hands. Don’t allow any doctors to make you feel that all hope is lost. Medical Medium has podcasts you can listen to on his website and has books that have important dietary changes to make to help the body heal and improve its functioning - but if you can’t get the books, so much info is online anyway for free. However I would be more than happy to purchase the books for you and send them to you.
Again, do not lose hope. I’ll be making posts here more regularly to share my progress with people. I want to get better from this so that I can tell everybody else they can get better too. I absolutely know it is possible. If I come across any other important info I will let you know. I have an appointment with professor Mark Edwards this June 11th for a second opinion on my diagnosis which I feel is important (because you never know truly if you’ve been diagnosed incorrectly with this - it’s so similar to many other neurological disorders/diseases) and perhaps it would be wise for you to look into receiving a referral for him at St. George’s in Tooting as he helps many people recover their motor function, helps people learn to walk again etc. This may hugely benefit your daughter. I’m trying to explore a balance between both medical based recovery and more natural, which includes dietary and lifestyle changes as well as changing the way that I think and feel about FND - the mind is very powerful, so do your best to keep your daughters spirits up during this difficult time. Take care.
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