My 11 year old.

[Mum06]

Hi, My daughter is 11 years old and was diagnosed 18 months ago now with fnd. We have been put infront of quite a few barriers and doctors who don't know or want to listen to anything about fnd they say they know about it and will go from what they know. My daughter suffers with non epileptic seizures, she cannot weight bear at all has been wheelchair dependent for 18 months now, she has chronic migraines, numnness, tingling quite a bit of pain, she has problems with sounds touch and has chronic fatigue she can sleep for up to 18/20 hours a day nearly every day. We have had doctors call her a liar threaten us with court and social services they keep saying my daughter isnt doing enough to get herself better as if she believes she can walk again she can. They said fnd does not cause people to sleep so much so they dont know why she is. She hasnt had any physio for 18 months its been changed from one person to the next so i took it upon myself to get her a private neurophysiotherapist who in 2 appointments had my daughter able to get from the floor to the couch with the help of cushions and she started equine therapy last weekend but we are still being told we arent doing enough to help her and i should be pushing her more as she has been like this to long and she should be back to her 'normal' self as they call it by now. I am forced to put her into school asleep while all her classmates look on she looses control of her bladder and is embarrassed but i am told i cannot take her out of school to home school her as they will take me to court or call social services as school is the best thing for her. She gets so upset at being called a liar all the time. Thanks

[Keeponfighting]

Mum06

I am sorry that your daughter is going through this. It is very difficult for people to believe us just because your tests results are negative. Have you thought of rehabilitation? I did rehabilitation for 6 weeks in UCL hospital and I believe it had some effect on my recovery. It is an inpatient programme in which you constantly see professionals like physio, occupational therapist, CBT, neurologists, speach therapy. It is very intensive programme but it worth a try. If you do speak to your GP so they can refer her. All the best

[Bailey09]

Hi

I'm so sorry everyone has treated you like this it's disgusting, the trouble is that there isn't much information on this disorder but even my gp hasn't got a clue they are need to be educated on this disorder. I am 4 years in with my FND and I have slowly got worse apparently I was told I would get better , yes some do get better but not to what they used to be sorry ,I hope your daughter improves a bit but it will take time

GOOD LUCK❤

[ClayKitten]

I'm so sorry that you aren't getting the help that you need. As if FND isn't hard enough, you must deal with people who don't understand. My daughter (14) has FND. She was out of school most of the 2019/2020 school year since she couldn't walk well. She had baby giraffe legs.

If you can, look into the Mayo Clinic at Rochester, Minnesota in the US. My daughter saw a neurologist there and was then sent to the Pain Rehab Clinic (PRC) - 3 and a half weeks . She went from struggling to walk to being able to walk normally. They also gave her tools to handle the chronic pain. The pain is still there, but its intensity has decreased.

She first saw Dr. Patterson - mayoclinic.org/biographies/... _He referred her to the pain clinic

mayoclinic.org/departments-...

mayoclinic.org/biographies/... - Dr. Weber leads groups with parents to give us insight on how to help their children.

We cannot say enough good about this program. There were several other kids there with POTS some had been out of school for years and left the program walking.

I pray that you get the help that you need. My heart aches for you and your daughter. Good luck with your search. Don't give up!

[eviedotty]

Thats a lot of threatening behaviour towards you in there and your daughter will be picking up, on this...am actually quite shocked at how you are getting treated as a parent and thats before we even get to what your daughter is going through there should be some recourse for families like yours the lack of support is just disgusting...sending love and hugs and hope you get something soon...xxx

[Pottsy1]

This must be absolutely heartbreaking for you and very confusing and distressing for your daughter. I care for a gentleman with very similar symptoms. It’s baffling and frustrating for him so goodness knows how it must be for a child. It took us a longtime to get any help at all. Is there any Medically Unexplained Symptoms Service in your area? We insisted on a referral and a neurologist and are now seeing a neuropsychologist. It has taken five years to get this far. If there is an advocacy service in your area they might offer additional support.

With regard to symptoms it appears exhaustion is a very common symptom due to the overload from the physical onslaught symptoms have on the body. It has been nothing strange for my friend to sleep for days on end. Try FND hope and neurosymptoms.org sites for information. Do not give up we’ve had to fight so hard all the way so keep on pushing.

[cspin]

hello mum06,came upon your posts recently. my daughter is 9 and was recently diagnosed with FND. We have been throught all those steps of been called liers, pediatrician who didn’t even look at her, only at the exames and said she could walk, since there was nothing wrong with her so she was supposed to stand up and walk. I would love to hear how are you all doing so far, and what have you done that was successful and share what was good for us as well.

Acupuncture: We have been taking things on our on hands for a while, and we took her to an acupunturist. he uses magnets and this seams to make an wonderful effect on the pain ( she is pain free now) and she comes home from the sessions walking, which is great, since she is walking with support for a few months now. Although it doesn’t last long, the acupunturist says that it will, her body will learn eventually. physiotherapy: we didn’t find the right one for her yet, still searching for a neurophysiologist, but we make her keep exercising, walking with support, biking in a still bicycle. she can’t stand long because of her fatigue, but a little bit every day.

diet: we put her and ourselves throught a diet. On my research I found lots of scientífic information that didn’t make much sense, but I also found a non scientific one that explained so much. One of them was the medical medium books. I usually rely on science, but many things this man wrote about mistérious illness and how severe epstein bar is and how many diseases are linked to that. there was something there. Started following some things, like celery juice, remove some things from her diet and the effect was really positive!During the first 2 weeks of acupuncture, the effect lasted for 1 hour/2 hour maximum. after the diet it started lasting for 24-48hours. impossible to say if it was really the diet, or the acupunture would last this much anyway, but I believe the diet has a lot to do with this.

psychologist: weekly sessions, have been working ok. it is not the cure, but it helps... helps her cope!

would love to hear your insights on that, your daughter’s progress and talk more!

happy new year!