My 16 month old niece was recently diagonosed with Rasmussen's Encephalitis. She was developing normally until she had a seizure on October 2, 2005. She was in the hospital for 2 weeks, had numerous EEG's and MRI's which didn't show anything wrong. Since the seizure she doesn't talk, her right side is partially paralyed and she doesn't recognize anyone. She seems to be more alert now than she was right after it happened but she still isn't even close to how she was. She had a 24 hour EEG last week which showed she is having small seizures in her sleep and that is when the doctor made the diagnosis of Rasmussen's Encephalitis. The information I've read about this doesn't sound very promising. I would like any information or advice about how to deal with this diagnosis. Has anyone known of someone that had this but went to on to live a "normal" life? The doctor suggested that because she is so young, her right side of her brain might take over and do what the left side should be doing. All information, advice and prayers are welcome. Thank you.
Rasmussen's encephalitis is thought to be a viral related disease (although no specific virus is known), causing progressive malfunction of one hemisphere of the brain. There are usually frequent partial seizures, and loss of function of that side. Sometimes loss of fuction can be from seizures itself from whatever other cause, so you need to be careful about whether this might be a cause of the 'loss of function'.
IF Rasmussens indeed is the diagnosis, and this may need to be confirmed by a brain biopsy, although sometimes the clinical picture is diagnostic, then there are some treatments to slow the disease such as steroids and IV immunoglobulin, howevere results are mixed. The main effective treatment is surgery to remove and disconnect that side of the brain - a hemispherectomy. As it starts at such a young age, most patients can have a normal life with only mild to moderate disability, and can walk, talk fairly well. If less than this surgery is done, the likliehood that seizures will return is high, and if untreated the other side of the brain can become involved also (over years). The best opinoin to get is from a major pediatric epilepsy center like the Cleveland Clinic, to make sure what the diagnosis is, and assess for surgery if appropriate.
I am no doctor but from what I know the sooner you remove the defective part of the brain the better the outcome. Here are some links which may be of some use to you, one is even from the Cleveland Clinc.
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