My 12 year old daughter

[Mum06]

Hi I'm looking for advice on my 12 year old daughter. She's had fnd for 3 years now and was in a wheelchair she is now walking with the help of a crutch. Our problem is she is struggling to get into school she is being threatened by social services that is she doesn't go to school they will put her in care but she is saying this is really upsetting her and causing her fnd to get worse where she can't wake in the morning and has severe headaches and dizziness. They are as well as medical professionals saying that fnd doesn't work that way she is cured now she's walking so she is fine and is lying in what she is saying. She has a psychologist but she doesn't trust her amd won't speak to her which is going against us also. Do you have any advice on how we can get round all this? Thank you

[Orge]

Hi luv FND dosent be cured its will be in remission, we suffer alot and ppl think that we can just bounce bck quickly gs. Let her take her time get bck to ur neuro doctor and say to him to write a letter to social services, that's ridiculous that they are threatening you. I stopped using a crutch and use a simmer frame nii I'm only 40 but it's far better maybe that will help her more so she's not all lop sided and hurting her joints, get in touch with ur OT about that x

[maraneda]

Hi! As a mom of a girl with FND I really feel you. I have the Sense of girls gets better when they're older. Puberty is so difficult, for them and for us parents.In my country health services are all private , so we can choose ( and pay) for therapists..She has had at least 6 differents psychologist, and it's been the only way to help her.

She went to school with crutches, stayed at least 8 times in ICU room..many days. She had seizures every day, many times .( For two years) She started having Tourettes' like symptoms. But now it's been 8 month without any crisis.

Just trying to tell you, there's hope somewhere.

Right now my 18 yrs( started at 11 yrs) daughter is getting a Roschard test.. assuming there's a personality disorder behind all of this.

Big hug from another Mom, and stay strong!! She'll learn how to deal with this .

[Berlea]

Hello, I've got a 12yr old daughter with FND, who has previously been in a wheelchair unable to walk, but has recovered from that now and it's mobile again. Currently the FND symptoms she's struggling with is vision loss in one eye, and occasional dissociative seizures..... She used to have many per day, but these have reduced dramatically. She's also got Auditory Processing Disorder, which makes it difficult for her to hear in a classroom situation. She also has severe anxiety, and it's unable to attend school right now, and struggles with doing school work full stop. She is enrolled in a private school, and we are working with them to develop an online learning plan, so she can learn at home at her pace. I'm also trying to do as many fun enriching things for her, hoping it will help her overcome her fears socially. I'm taking her on an enrichment day once a week, to somewhere fun and relaxing. If it works we try to do some meditation while there.... Headspace is a good app to help with that. She's been referred to Riding for the disabled program, and we start that next term. I've also enrolled her in a dance class, as she loves that. It has already lifed her spirits now she's started these things, and I'm sure that's a powerful help towards recovery. Each day is a challenge for any one with FND, but I think it's key to keep positive, and try and find something fun and enriching to do to help recovery. My daughter is also under a very good psychologist, and it's very important to find one you can trust and connect with, and that also understands the condition.Not sure if this is helpful, but thought just thought to share.

[Mum06 in reply to Berlea]

Thank you for replying it is helpful to hear from others going through the same. My daughter does riding for disabled kids thru a private neurophysio and by doing tht is how she got out the wheelchair and walking with the stick it's an amazing therapy. Our psychologist is not good at all and my daughter doesn't connect with her but they refuse to let us change her they try to find other reasons why she won't talk to her other than the reason my daughter gives them is which she is a liar and keeps making up things about her. Once we get her into school she does great she does end up only doing an hour a day a few days a week but thats better than nothing but they don't see it like that. I just really wish they would listen to her and stop calling her a liar saying she's making it up as it's not an illness. Thank you

[Berlea in reply to Mum06]

I feel for your daughter, as there's nothing more detrimental to FND that not being believed by professionals, I'm sure all the negativity will be having an adverse effect on your daughter, this will be a blockage in her recovery process. I would recommend doing all you can to change the psychologist. If you can pay to go private, maybe you can choose a psychologist that is more understanding?If your daughter is managing that much school, she is doing wonderfully well, she needs positive encouragement to keep that up. If the school isn't supportive of her, can you change schools?