About three weeks ago an 11 year old girl in my family was not feeling well (having pain in her neck) and went home from school because of it. Later in the day her father found her in the washroom on the floor having a seizure. He called an ambulance right away and had her taken to the hospital.
It has now been three weeks that she has been in there and doctors have not yet found a cause of seizures. They have her on medications to keep her asleep because when she wakes up she goes into seizures again. She did not talk when she woke up for the little time that they let her.
They have given her an MRI and CAT scan and have tested her for epilepsy, meningitis, encephalitis, west nile, mad cow, herpes virus, some blood work (I don’t know what they tested her blood for), and have taken a brain biopsy to test for fungus.
The doctors say they are leaning more towards a virus but still are clueless as to what is going on with her.
If any doctors are here or anyone who has experienced anything like this could you please PLEASE reply to this post with some ideas or names of what causes things like this to happen? That way I can look up information and maybe ask her doctors if they have not yet tested for something they should have.
Dr. Joshua’s Answer
I’m sorry to hear about her difficult situation. Prolonged seizure (status epilepticus) is a very serious situation. I’m sure her doctors are doing all they possibly can to find out the cause of seizures, and I probably cannot add anything of significance over the internet. Many times, the cause is not found despite extensive investigations. However, I’ll try to provide you with some information of possibilities that are not mentioned in your message, even though her doctors have probably taken these into account already.
Has she been treated with acyclovir? Our neurologists usually administer acyclovir i.v. even when there is no evidence of a herpes infection. Has she been treated with wide spectrum antibiotics? Often such “empirical” treatment is initiated when no cause of seizures is found. When there is no evidence of tumors or other abnormalities in MRI, infection is a common (though not the only) cause of childhood status epilepticus (prolonged seizure) - infectious agents should be aggressively tested from serum and CSF (cerebrospinal fluid), throat and stool. A repeat MRI after a week or two, or several repeat MRIs, can be informative - has a repeat MRI been done? Also, sometimes, an angiography is done if there is suspicion of a bleed or vasculitis. If a brain biopsy is done, everything, not just fungus, should be tested from the brain biopsy - bacteria, fungi, viruses, pathology sample, samples for PCR and so on. THe problem with a brain biopsy is that if there are no visible changes in the brain tissue on the MRI, the biopsy may not be representative of possible infection, if the infection is not disseminated everywhere in the brain, as is often the case.
Human herpesvirus 6 may be often present in children with status epilepticus. Some possible less common viral causes for childhood status epilepticus include human herpes virus 7, parainfluenza 3, adenovirus 1, echovirus 22, rota, influenza A and Mycoplasma pneumoniae.
Reference: Juntunen et al
Eur J Pediatr 2001;160:37–42
It is interesting to note that she had neck pain before the seizure occurred. Sudden onset pain could signal, among other things, a bleed, or an arterial dissection, and gradually worsening pain may be more suggestive of meningitis or other infection.
Good luck, and please keep us posted on the forum.
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