Child worries of fnd mother

[Granimmy1]

My daughter diagnosed with fnd is so unwell with symptoms that she is no longer able to look after her child. This is heartbreaking. Does anyone know of this happening and has got through this?

[Nansea]

So sorry for your daughter. Don’t give up in the search for answers. Just because she was told FND by one doc does not make it so. Do your own research. Have it confirmed by another doc if you are able. I want to help others. I have been sick for almost 5 years now. I have seen 8 different neurologists. Was told it was FND by no. 3 after 30 min. appt. I woke up one day and was unable to stand up r/t severe vertigo,nausea and vomiting. Pressure headaches every time I tried to be upright. Imaging and labs were all normal. A couple of months in I also started with jerking movements of my extremities, mainly my neck and arms. I have pulsetile tnnitus, sensitivity to light and sound. Turns out I have a rare connective tissue disorder called Ehler Danlos syndrome, with craniocervical instability, and have a cerebral spinal fluid leak. If you look up the symptoms for a CSF leak, mine were classic. The leak can be fixed with an outpatient procedure. The rest requires PT. I finally found the right doc. One of the previous docs basically told me I was crazy when I asked about possible CSF leak. Another told me, just take meds for symptoms, you don’t need a diagnosis. I never believed in the FND diagnosis for myself, always felt they were missing something. I cannot say FND is not a correct diagnosis, but do your own research, listen to your gut, not all docs want to admit they just don’t know. There are too many rare conditions out there, they can’t be responsible for knowing all. My prayers go out to this community. It is a very tough road. If this post helps just one person out there be it patient or provider I will be so happy.

[Granimmy1 in reply to Nansea]

Thank you for your reply and for your valuable insights.

[Lady4 in reply to Nansea]

I agree, don't just take one persons word for it. There was another lady that posted on here struggling to look after her young child. FND presents a whole lot of symptoms (apparently over 200) that are said to mimic other conditions and vice versa, so like Nansea says they could have got it wrong and when they do get it right, help should follow.

How did that diagnose FND, what was their rationale?

[Willothewisp81]

Hi, I am so sorry to hear that your daughter is suffering so badly.

I was diagnosed with FND 4 years ago after 5 years of increasing symptoms, tests and investigations. I have two children who were at the time 7 and 10. It has been the most heartbreaking experience for me to not be abe to be the parent I dreamed of being for my children but there are a few things that have helped me along the way.

Firstly I pushed for referrals for as many assessments I could to help me better understand my symptoms and how to manage them. The neuro physio and Neuro OT were really helpful for practical support. I found the OT advise extremely helpful as she helped me to find hacks for many of the practical things that I was no longer able to do and made me feel so dependant on others. This has been vital for me to regain some independance and improve my mental health.

I also found the referral to Neuro Psychology really helpful, it gave me a space to process the reality of my situation and grieve all the things I was finding it hard to let go of, in particular the image of the mother I wanted to be.

I also found it helpful to know that I could apply for a social services assessment to get support with and for my children. I didn't end up applying for this as after the other referrals my quality of life improved enough that I didn't feel it neccessary.

Every day is different and on a bad day I still cry that there is much of my children's lives that I miss out on. But on a good day I am now able to celebrate the progress I have made and I appreciate all the precious moments with my children so much more.

I wish your daughter all the best.

[Granimmy1]

Thank you for your reply. A neurologist diagnosed fnd and professor edwards concurred. It started off as tingling and other sensations and fatigue now severe spasms. Awaiting appointment from Rosa Burden.

[Lady4 in reply to Granimmy1]

I believe Rosa Burden have a multi-disciplinary team and an inpatient programme for extreme cases, so should help with recovery.

My sons started off with foot dragging, leg weakness, numbness and drop attacks followed by other symptoms throughout the years.

Its a worrying time but stress and anxiety can heighten the symptoms. As Willo above says. encourage her to celebrate the achievements and if things are bad, let her rest and them wash over her, tomorrow is another day and she will get better.

Hugs xx

[Chicken49]

Im very sorry to hear that its so hard when you have children your trying to look after them. My husband is a great support. they are 10 and 12 so if i get confused or falls they understand. does your daughter under NDIS unfortunetely they didnt think my condition was bad enough even though i banged into thing legs wouldnt work or move sometimes confusion and falls. I am a lot better now thank god. but i get homecare clean my house fortnightly. you should look into that. my cognitive is not great thinking words muddle up gets really bad when my hormones are fluctuating. has your daughter seen a neuro phycolagist, Ive had to do. i hope things get better.

[MummytoM]

hi I’m waiting to see neurology as I’ve been experiencing some symptoms of fnd it’s that bad that I struggle to also take care of my daughter she’s 2 I have good days and bad but if it wasn’t for her dad I don’t know how I’d cope when I’m really bad he takes care of her and takes her to nursery everyday as I can no longer walk long distances without my legs feeling funny and the dizziness is too much it’s the most difficult thing I’ve ever had to deal with and really depresses me as I feel I can’t be the mum I want to be to my little girl I really feel for your daughter I’m so sorry she is going through this sending love🥺❤️