Advice for my daughter with FND

[Sarahlaw1]

I knew on this FND website. I have a daughter age 13, that has been recently before summer diagnosed with FND. Starting back at school this term has been a struggle. Today she nearly collapsed at school, and had to be escorted out of the school in a wheelchair. We are on the waiting list for CBT at St George’s. Until then, I have been trying to encourage my daughter to be positive and help keep her mind of the pain. She loves doing Art at home too. Wondering what else to do at home? Also, have asked the school to help doing half days instead of the full school day. Any help would be great. As it is heartbreaking to see my daughter feeling like this everyday day.

[abb356]

Sarah,

I'm so sorry for your daughter and fur you and your family. Having a child who is in pain and you can't do anything must be so worrying.

You say your daughter has recently been diagnosed. Is she being put in a programme? If not, push for it. It will really change her life. The specialists will not only help her but also you and your family. They will give you all srategies for day to day living and help understanding what she has, why and how to overcome it.

I've recently put my experience up in a reply so feel free to read it.

In the meantime you say it is hard going back to school. Did you talk to the teachers? Are they aware of her condition and what it entails. If telling them has been a struggle, talk to the FND specialists. They can help with this too.

Now let's talk practicalities. Keeping her entertained and engaged whilst out of pain.... I'm not a doctor. I have no children but I do have niece's, a nephew and great niece's: who incidentally have Hereditary Spastic Paraplegia so energy management for them is key.

My advice?! is this. Little and often. Tap into her interests but don't go overboard. If she enjoys painting/art. Restrict her time to begin with then increase it.

If you drive take her out and do something a little left field ie go to the park with a bird book and try and see how many English birds you can find. Maybe get her to photograph them and then on another day, get her to draw one of them, paint it in different mediums ie water colour paints, then charcoal then felt tip then finger paints. Maybe do it together. Have a laugh, be silly, maybe you could paint her face and then she paints yours.... That's just one thing. Anything to take her mind off the pain. What subjects does she enjoy at a school? Tap into those. Has she friend's? Is she being bullied? Restrict social media. She doesn't need negativity and frankly when I see the news and hear stories about what children experience, it disgusts me.

Art... Sewing? Computer art? Writing a book perhaps and publishing it on Blurb perhaps? I'm going to make some jewellery for Christmas... Maybe she could too? Just a few things to get your creative juices going. Or making Christmas Dec's out of dough?.... Now you've got me started.

I've decided to help with the girl guides. It's that something she can do?

Can I also suggest something? Do something for YOU. Being a carer isn't easy and having been on both sides, I really feel for you. Grab a coffee with the girls. Go to the library and chill for a few hours. You will be surprised how energised you feel. Thinking of you Sarah and if you need to talk, we're all here.

[Sarahlaw1 in reply to abb356]

A huge thank you for the kind words and support. Your story has really made me feel their is a lot of hope. So nice to hear something positive. Your advice and support will help me with my daughter.

Your journey in your life has been a struggle at the start, but with the right help, and determination from yourself, you are now in a much better place. You should be proud. Thank you so much, I will keep you posted. Yes, my daughter is on the waiting list for therapy. School, been great at first, but now getting stricter due to being in Year 9. She has managed 2 full days last week. Today not a good day, when she is like this, She will not talk to anyone as much, as just wants to sleep.

I am sure we will get their.. thank u again Sarah xxxxx

[abb356 in reply to Sarahlaw1]

I'm pleased to help Sarah. Your daughter will have ups and downs but maybe doing two full days is a struggle. The teachers can give her work to do at home. If you are at work with a debilitating illness, they have a duty of care to look after your needs. It should be the same in school. Maybe a way to get back to school full time is a structured way. An hour each day until she can cope with more. It will take months to get back full time. For her, she must have the stress of getting ready whilst in pain, the books, the journey, the teachers and her peers...her homework! That's without being 13 year old who - going from my experience - would get out of any homework if I could! Even talking is tiring. That 90% subconscious has a lot to answer for!

Baby steps Sarah. She'll get there but don't forget to push hard at the NHS. I was able to pay for my initial consult because I wasn't prepared to wait the inordinate length of time. Once I had the agreement to go on the programme, I rang them to enquire when I was going on it. And again. And again. People drop out because they either do not believe they have the condition or its not viable at the time. Thinking of you all. Let me know how she gets on xx