8 doctors weighed in:
Is there an effective treatment for seizures linked to mecp2 duplication syndrome?
8 doctors weighed in

Dr. Johanna Fricke
Pediatrics - Developmental & Behavioral
2 doctors agree
In brief: As stated, seizures
in boys with MEC P2 may not respond to treatment with anti-epileptic medications.
Find information on http://ghr.nlm.nih.gov/condition/mecp2-duplication-syndrome. The contact for the MEC P 2 annual family conferences is Pam Albert, mecp2dup@live.com. If she is no longer coordinating them, she will give you contact information for the person who is. Don't keep going without information & support.

In brief: As stated, seizures
in boys with MEC P2 may not respond to treatment with anti-epileptic medications.
Find information on http://ghr.nlm.nih.gov/condition/mecp2-duplication-syndrome. The contact for the MEC P 2 annual family conferences is Pam Albert, mecp2dup@live.com. If she is no longer coordinating them, she will give you contact information for the person who is. Don't keep going without information & support.
Dr. Johanna Fricke
Dr. Johanna Fricke
Thank
Dr. Olav Jaren
Neurology
2 doctors agree
In brief: May be difficult but
It may be difficult to stop the seizures related to this syndrome, but several medicines and treatments may help.
Valproate and the ketogenic diet may be recommended, Sometimes vagal nerve stimulator is recommended. http://www.ncbi.nlm.nih.gov/pubmed/23583050

In brief: May be difficult but
It may be difficult to stop the seizures related to this syndrome, but several medicines and treatments may help.
Valproate and the ketogenic diet may be recommended, Sometimes vagal nerve stimulator is recommended. http://www.ncbi.nlm.nih.gov/pubmed/23583050
Dr. Olav Jaren
Dr. Olav Jaren
Thank
2 doctors agree
In brief: Standard AED
Seizures seen in~50% of affected individuals.
Generalized tonic-clonic seen most often, atonic and absence also seen. In some, especially boys, seizures refractory to therapy. Onset/severity of seizures correlate with neurologic deterioration(loss of speech, hand use, ambulatory status) seizures usually respond well to standard antiepileptic drugs, need eeg to determine seizure type(s) for drug.

In brief: Standard AED
Seizures seen in~50% of affected individuals.
Generalized tonic-clonic seen most often, atonic and absence also seen. In some, especially boys, seizures refractory to therapy. Onset/severity of seizures correlate with neurologic deterioration(loss of speech, hand use, ambulatory status) seizures usually respond well to standard antiepileptic drugs, need eeg to determine seizure type(s) for drug.
Dr. Jonathan Dissin
Dr. Jonathan Dissin
Thank
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