16 year old daughter has been diagnos... - Functional Neurol...

Functional Neurological Disorder - FND Hope

3,940 members2,120 posts

16 year old daughter has been diagnosed with FND

carrickgirl1
carrickgirl1

Hello

My 16 year old daughter has been diagnosed with FND. We know very little about this and would love any help and advice anyone can give.

She is very down over this and finds it very difficult to concentrate and retaining lessons in school. We were told Physio and CBT was the treatment for FND

Please HELP.

14 Replies
oldestnewest

From what I’ve heard and read the earlier you can start help eg physio etc the better the outcome could be. I found physio fantastic and I teamed that with OT and speech but it depends what symptoms she has. It’s not fair at that age! My kids are that age so it must be horrible for you. FND Hope has some great info and like all these sites offer support and encouragement so that she knows she is not alone... please remember no one has exactly the same symptoms so tell her never to be discouraged if something works for others and not her.

Thank you

I second the OT. OT has helped me immensely. I don't think I would be back to work without it.

What kind of stuff did the OT do?

I learned techniques to help my stay focused and on task. We also worked a lot on hand-eye coordination, fine motor skills, and cognitive skills. The OT hadn't worked with anyone with FND before, but she was able to use techniques that are used to help other ailments.

Hidden
Hidden

Keep asking questions on this site and keep searching online for TREATMENT AND THERAPIES. Lots Dr.s like to educate but they never really explain where or how to get better. Nuerosymptoms.org and nonepileptic siezures.com.

You and her are in for a tough ride so I suggest you and her start becoming proactive in learning to deal with this. Not being negative just being real. Please ask many questions and you will get answers.

There is a book called Functional Neurologic Disorders, volume 139 of the Handbook of Clinical Neurology, that may be helpful. The Kindle edition can be listened to. There's also a book called Overcoming Functional Neurological Symptoms (A Five Areas Approach).

What symptoms does your daughter have?

Very little power in her arms an legs. Terrible shakes in her legs, she is unable to walk unassisted. She is in pain all the time and traditional painkillers do nothing for the pain.

Are her symptoms less during some times of the day but more during other times of the day? If so, she can try using a medication (amitriptyline, Lyrica, diphenhydramine, chlorpheniramine) to keep her mildly drowsy during the bad times of the day; the drowsiness might reduce her pain. Listening to calming meditations on Youtube, meant to induce sleep, may reduce pain. Getting into one of the motor retraining programs in the USA or Australia may help, like at the Mayo Clinic in Minnesota. For walking, she can try grabbing onto objects with as little grip as possible, walking with her hands on the floor, walking sideways, walking backward, taking very small steps slowly, and walking like Frankenstein's monster by moving the hips forward, one at a time, twisting the body.

Thank you so much for taking the time to reply.

We are in Ireland and a lot of Practioners don't seem to know much about FND

She is using crutches to get around but this is very tiring and painful.

She has just started a CBT course.

It's just so upsetting watching her trying to do anything. She plays a lot of music but all that is gone.

It's heart breaking.

Not sure your 16 year old daughter will understand initially, but I would highly recommend Mindfulness. To the uninitiated it can seem 'a bit up there in the clouds' but it works. Find a good local practitioner, your GP or consultants should be able to refer you. Really does offer relief.

Thank you so much, someone also recommended CBT but I will find out about the mindfulness. Thank you

CBT practitioners will be very aware of Mindfulness. Another link. Talking on forums can result in tremendous results.

Make sure she had antibodies tested for the many causes of autoimmune encephalitis and also have her thyroid checked for nodules and bloodwork. Make sure they also test thyroid antibodies.

You may also like...