Every day seizures

[maraneda]

My 16 yrs old daughter has been diagnosed with FND. It's a hard time for my family. She is the kindest, brilliant girl. started with chronic pain at 12 when we moved from Canada to our home country. Last year she got a very high dose of tramadol at the emergency room because of the pain. 2 hours later, started to seizure.

Since then she has been admitted at ICU 6 times under epileptic status . But ...in the last 4 times there's no evidence of epilepsy in the EEG.

Since March she is having seizures every day. Had to dropped school off . Losing independence and struggling with depression.

Just need to know if someone has ever recovered from this.

[Keeponfighting]

Hi Maranda

It is heart breaking to know that a young person such as your daughter is going through this terrible ordeal . I’ve also been diagnosed with FND in 2010 but had symptoms since I was 11 years old. I am now an adult but my symptoms started to have an impact in 2010 . I was studying social work which with great sacrifice and faith in Jesus my Lord and saviour I concluded my studies. I have not been able to work as the symptoms were extremely disabling... However in 2017 I had a month and two weeks rehabilitation at UCL hospital where I was an in patient. Today my simptoms have gone better, i am no longer on pregabalim which I took 300mg per day but I do take multi- vitamins and vitamins B12 to promote my body with extra strength and elimane pan caused by fatigue. I have just been accepted for a job as i am able to manage my symptoms better.

My advice to your daughter, I know she is very young and it is even more confusing and scaring for a young person to go through symptoms of FND. However it is extremely important that she keeps positive for the future. It is important that she keeps on believing that one day this will go away. Because the trouble with FND is that it creates a cycle and acts on how you think. The depression will just make it worse. I am in a better position today but I’ve always believe that I would get better one day. It is said that there is 13% chance of a patient recovering from this so I always thought that I would be among this number. Maybe you might want to try the FND rehabilitation programme at UCL which you have to be referred by your GP if you ask them.

I hope all works well for you and your daughter and please don’t hesitate to ask me anything.

My prayers goes out to you and your daughter.

[maraneda in reply to Keeponfighting]

Thanks so much for you words. Give me hope

[moose1237]

My son started having terrible leg pain in November of 2018 and progressed into seizures as well--medical doctors diagnosed him with FND. We took him to a chiropractor in March of 2019 and after the second adjustment he no longer had seizures and no longer needed a walker. He was unstable for awhile -- he would be really good after an adjustment and then slowly get worse over the week before the next adjustment. He is now stable and doing well now that we have figured out that the cause of the whole thing was his lactose intolerance! His chiropractor uses the Koren specific technique. I hope this helps.

[maraneda in reply to moose1237]

Thanks so much for your answer. I'm very glad your son is doing better. I feel a bit alone because other parents do not understand what it's this about. Even my parents don't.

I feel also that this pandemic situation doesn't help at all, since we're been confinated since March, and the CBT therapy is online.

Thanks again!

[artmom]

Have you looked into it being a reaction to the tramadol? The previous pain could be relating to something else undiagnosed. Fnd a bit of a sham dx

[maraneda]

Adverse reaction to tramadol it was the first dx..but then epilepsy came out because of the EEG ,

And now .. she is having crisis every day and they aren't epileptic.