Suggest Treatment For Landau-kleffner Syndrome In A Child

Dear colleague . I m Dr . Motaz Abu Zaiter. I work as a Head doctor at PICU in El-Dura Pediatric Hospital in Gaza strip , Palestine . My daughter Ameera Who is 9 years old suffers from a scarce disease Landau-Kleffner Syndrome ; electrical status epilepticus during slow-wave sleep. The conditions of disease started at the age of 2.8 years She started as follows ; attack of convulsion. The convulsion used to happen in different shapes like hypotonia , simple partial ,or twitching of the mouth during sleep or early morning sometimes it happens with nausea and vomiting . At that time EEG was done and showed brain discharge on the left occipital focus and brain CT was done and showed normal . At that time we started treatment with valoporic acid only and during this treatment the attack of convulsion was once or twice in the year . We continued the treatment uptil the age of 5 the growth and the developmental was normal she was able to speak very well two languages Arabic and Russian and a little of English After the age of 5,she started regression of the language slowly that it was difficult to notice but by the passing of the time we started noticing her loss of speech . And due to the continuing of the convulsion which was not severe we add Lamotrigine with valoporic acid and at the age of 7 the regression of the language became more and notable . At this time we did EEG during sleep and it showed us spike wave with generalization ,ESES-Electrical Status Epilepticus during slow sleep and due to the duration of the convulsion which was not changed we changed the treatment of Lamotrigine to sulthiame (ospolot) and continued with valoporic acid . Since that time no any attack of convulsion or up normal movement during sleep happened . after two months a new EEG was done and showed no Electrical Status Epilepticus during slow sleep but still a lot of Epileptic activity especially left focus with some generalization . Due to that we continued treatment and add high dose of Immunoglobulin 2g/Kg one dose per month which was given for 3 times . But Unfortunately, there has been no any change. At the age of 7 years she stopped speaking any clear understood word and can t understand what is said to her . We did all tests for hearing and she can her well but can t understand what she hears. we continue to treatment of sulthiame (ospolot) and valoporic acid for 1,5 year . But because of the recent war in Gaza I could not do new EEG , then I did new EEG for her , But regrettably did not find any change in EEG On the last time we did EEG , and maybe it is worse than before , there is sever epileptic activity and continuous generalization. Duo to that I decided to add corticosteroid to her treatment , I gave her in the first week methylprednisolone 2 mg/kg daily , and because of not being able to obtain it has completed prednisolone , However, at this dose I observed some side effects of treatment . The treatment I continued about two months during that we did new EEG but unfortunately there is no any improvement , due to that I stopped corticosteroid . After that we decided to stop treatment of sulthiame (ospolot) and change it to Frisium (clobozam) and continue Valoporic Asid , it was about seven months ago . after two months of treatment I did new EEG It was the best of all what has been done before , but there are still of the Electrical brain discharge but not generalization . Now she is on treatment of Frisium (clobozam) and Valoporic Asid . Now I d like to inform you about the latest condition of Ameera . After all these treatments, there is no any improvement to speak any word or understand anything of what we say to her . There is no attack of convulsion or any abnormal movement for more than 2 years . I think that there is no problem with her behavior ,or mental state , sometimes I feel she is intelligent but she tormented because she can t speak any word or understand anything of what we say to her. Our problem in Gaza strip is that there is no awareness of my daughter s situation since I sent her to the centers which are called to deal with the signs language or language therapy but to my deep sorrow they don t know or understand their job because the dismissed her after a few days. They said that they can t accept her because she could hear . Although I explained the situation to them many times, they proved to me that they don t know anything about their real job . after more than seven years of treatment, and using a lot of treatments I do not know how we could help her ,because we always suffer from a lack of treatment and abilities . After all, I want to ask for your help as a father and a colleague to show me the best way for treating my daughter . l will be very grateful to hearing your recommendation and advise . Yours sincerely , Dr. Motaz Abu Zaiter Tel.0972 8 0000 Mob.0972 599 155973 E-mail. YYYY@YYYY