New here. Looking for answers...
 

I posted in the new member section and was directed here. I thought I would post my story here too:

Hi everyone,

I am here posting in behalf of my 10-year old daughter. She has been struggling with emotional issues for several years now, and has recently developed hemipalegia on her left side. One neurologist thought that she was having strokes, but a new neurologist thinks that she is experiencing brain atrophy. She has had significant damage to her right frontal lobe, which is the cause of her severe emotional difficulties. We have ruled out almost everything that can cause this in children. She is undergoing testing for mitochondrial disease (specifically MELAS), which is very rare and difficult to diffinitively diagnose. Her symptoms have undergone a rapid progression lately, and we are frustrated because several diagnostic tests have come back negative. She had a MR Spectroscopy that showed elevated lactic acid levels in the right side of her brain, but DNA tests came back negative, and she just had a muscle biopsy that has come back negative except for some biochemical testing, which we have not gotten back yet.

The last couple of weeks have been especially difficult. She is getting increasingly violent as she gets older, and her rages are getting longer in duration. This is difficult because we have two other small children (4 and 2). She hears voices that she talks to all the time, and she does not seem to respond well to many medications. We think that her raging might be connected to her inability to tolerate stimulation (such as crowds, noise, too much activity, etc.) This has also gotten progressively worse. When raging, she goes into a trance-like state until it runs its course (kind of like a seizure). Then she becomes extremely remorseful and scared. She is able to hold it together at school most of the time, but then often rages when she gets home and before she goes to school.

She was a normal, smart, outgoing child when she was younger. This has crept up on us until we no longer recognize our child much of the time. We are desperate for some answers. If there is something to be done, we want to do it. Unfortunately, if she does have MELAS, there is no real treatment other than vitamin supplements, which she is currently taking.

I could add more, but I will not bore you with the details.

I hope that some of you have some advice for us. I hope that none of you have had to go through this, but if you are or have in the past, I hope to learn something from you.

Thank you for listening,

Ann

{{{Ann}}} I am sorry I am of no help. But sending hugs, and hoping someone with input on the matter will come along soon. I know a few who frequent here have kiddos with mito. Hope you find some answers
Tracy

hi ann. welcome to neurotalk.

don't worry about every boring us. post as much info as you want. it will only help us in trying to help you.

:hug:

i'm short on time today, but will try and do some research for you tonight.

Mitochondrial Disease
 

Ann (and anyone else):

Please know that there are many others out there in the same boat. We have a little girl w/Mito (likely complex I) and have become active with the Mitochondrial Disease Action Committee www.mitoaction.org. This non profit hopes to empower parents, caregivers, patients and clinicians w/concrete tools and is on its way to a whole new website, set of tools, etc.

Also, check out the UMDF www.umdf.org, the MDA www.mdausa.org and other related organizations listed in the various links sections.

Lastly, there is a Yahoo group for mito at mito@yahoogroups.com .

Wishing you luck and strength -- Susan Zelenko www.mitoaction.org

Hi, I'm Donna and I'm sending you some hugs.

I really am afraid I have no answers.

Just a ear to listen when ever you need to talk.

Donna

Ann
I just wanted to give you a :hug: and check to see how you are doing

Have they thought of Rasmussen's Encephalitis??

http://www.encephalitis.info/TheIlln...Rasmussen.html