Mom of 16 yr old w fnd: Hello, my 1... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Mom of 16 yr old w fnd

Reinasofia profile image
8 Replies

Hello, my 16 year daughter who I call ReinaSofia was recently diagnosed with fnd, she is in a partial program and I am still just trying to take it all in. I am just looking for support and answers about this disorder.Thank you

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Reinasofia profile image
Reinasofia
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8 Replies
Mat08 profile image
Mat08

Gosh please contact me again look what ever advice I can give you i am here to help as much as I can

Hopeful40 profile image
Hopeful40

My heart goes out to your daughter as well as you.

Where are you from and what are her symptoms?

princessabi profile image
princessabi

Hi. I am the mom of a 9 yr old recently diagnosed with PNES. I was in contact with your daughter a few weeks ago. How are things? I know it's hard. My husband and I continue to try to find the right doctors and guess the best way to help out daughter. I keep track of her day. What meds, what time she does things, how she feels (headaches etc) to try to find patterns as to what her triggers are. We also do a lot of research to better understand and find who could be able to help her the most based on her symptoms. Don't lose hope. It's hard. Don't let her forget the things she enjoys. My daughter loves drawing and horses so I make every effort to see that she has those things in her life. I will happy to chat with you any time.:)

Chingona profile image
Chingona

Hi Reina sofia, welcome and I'm curious what is a partial program?

Reinasofia profile image
Reinasofia

My daughter has seizures that can last seconds up to forty five minutes. She has stomach pain, headaches, her legs and arms can go numb and won’t move. She just started with symptoms in April and she was admitted to a partial hospitalization where she goes during the day and they work on identifying what is causing the stress and how to manage it.

pickleweed profile image
pickleweed

I recommend reading or listening to the book Functional Neurologic Disorders, volume 139 in the Handbook of Clinical Neurology.

Reinasofia profile image
Reinasofia in reply to pickleweed

Thank you!

Hopeful40 profile image
Hopeful40

I would recommend being seen by a Lyme Literate medical doctor to rule out Lyme Disease and co-infections. If in the US they can provide you with the Western Blot blood test by IgeneX and give you proper guidance. Unfortunately the conventional medical does not recognize Chronic Lyme because they are following CDC guidelines which is leading many to be not diagnosed correctly. I share this as I was diagnosed with FND and felt lead to continue searching for the underlying cause. I had been tested at three hospitals being told that I did not have Lyme.

I realize now that I have Lyme, Bartonella, Babesia, Rocky Mountain Spotted Fever, EBV...none of these were tested for in the conventional medical except for Lyme which I was told me that I tested negative for and did not have. I did not realized at that time that there is Acute Lyme and Chronic Lyme( which they do not recognize).

This article will help with a better understanding.

Thinking of your family and remain hopeful.

rawlsmd.com/health-articles...

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