Ptosis 12 year old girl.

[vernon52]

Hello everyone, looking for help and advice. My daughters problems started back in Feb, she came home from school unable to open one eye and the other was partly closed, this fluctuated for a couple of months and since April both eyelids have been permanently closed. Neurologist is still performing tests but our eye doctor has said she's certain my daughters problem is functional and accused her of "putting it on" . This has been extremely distressing for all of us and feel we are getting nowhere, any advice would be helpful x

[Hidden]

I've had fnd for over 12 months and my right eye closes when I get tired, I have a lot more symptoms as well, I've heard all the crap you are putting it on, it's all in your mind well believe you me it's not, in other words we don't know what it!!!! I've lost my job I'm in a wheelchair when out and about and crutches round the house I've worked for the last 32 years and im certainly not putting it on, but I'm very lucky as I've got a supportive network around me and a very supportive doctor, hope everything works out for you and your daughter.

[stegosaurus]

Hi, a friend of mine had a problem with closing eyelids and after months of going from doctor to doctor she was recently diagnosed with lupus, maybe it's worth looking into it?

[vernon52]

Thankyou for your replies, I too thought of lupus as we have this in our family but our GP just dismissed our concerns as usual. Feel like we are going round in circles and they have made their minds up that my daughter is putting it on, I think anything we say will now be overlooked. I appreciate your comments and its nice to know other people have experienced the same things or are going through the same things, we no longer feel alone xx

[cathys20]

it sounds like blespharospasm, has she been examined by an actual movement Dr. in dystonia? Sometimes in early cases that does not shine a whole lot of light onto things, but prayerfully you would be able to see a good one. Not sure where you are located, but there is a wonderful women in Chicago who specializes in movement disorders, I just cannot think of her name right now, but you could google it for sure. Hope she and you get the help you need, God Bless, Cathy P.S. I have hemi facial spasm it affects the right side of my face, my right eye closes shut completely, usually better in the am till I get a little fatigued, right side my mouth is pulled in constant contraction even in the am, but by night find it hard to even up it at all. Theres really weird movement disorders out there, botox would help definitely. Praying

[Dave_1]

Hi, how distressing for the whole family, especially your daughter and how unprofessional and darn right ignorant thoughtless of your neurologist.

It may well be FND but that DOES NOT MAKE IT ANY LESS REAL.

I take it they have tested for Myasthenia Gravis etc and ruled those out. I have Ptosis and double vision, both put down to FND. I found the Neuro Opthamologist more sympathetic and understanding and he tried other tests that the Neurologist didn't.

It took some time for me to come to terms with these symptoms as an adult, so how a child will respond I couldn't say. Children are very resilient and should it be FND stress/emotion seems to play its part, so try not to panic or she will pick up on this and compound things further.

Now in saying all this, if it was my own daughter I would ask for a second opinion. No neurologist is perfect (although many think they are) so take a deep breath and try again.

On a positive note it is good that nothing sinister has turned up on her MRI's etc.

Take care and I wish you and your daughter the best of luck.

[LindseyG]

You are in the thick of it. Keep your head up. Encourage your daughter and make sure you have people to encourage you. Answers often take too long, so don't give up with your doctors. I know how tough it is, I'm a few years out of the worst of it and I want just encourage you and your daughter to not give up hope. The brain is tricky, any neurologist should be willing to admit that. I'm glad you found this website. I didn't know it existed when I was diagnosed. Having other people share in you and your daughters pain is a powerful healer. Neither of you are alone. She will get through this and so will you. My prayers to speedy answers and a speedy recovery.

[angelite]

How very unprofessional of your daughter's eye doctor ( stronger words were considered ! ).

Are the eyelids able to be opened manually with fingers or resistant to this ? x