» Therapy

There is no therapy for SSPE. It is generally fatal. There have been very rare cases of spontaneous remissions, which have not, up until now, been proved scientifically, where the children recover, however in different ways. There have even been reports about spontaneous recoveries, these can be found via the Internet. They are real, Max’ family personally knows one of these cases: Samuel from Vienna, Austria, who is currently eleven years old, who seems to have survived or at least temporarily overcome SSPE. However, there is no medical explanation for that.
The problem is that SSPE is relatively rare, the number of unreported cases is high. There are even countries where SSPE is being declared as non-existent (USA, Scandinavia), in other countries - Japan, Turkey and India for example - a significant number of cases are known. In Germany as well, the number of SSPE cases is rising due to the increasing number of measles epidemics. Fifteen cases of SSPE in children are registered at present.

However, there is hardly any research, the development of a special medicine does not appear profitable enough. There have been attempts with Interferon, combined with an anti-viral drug (Isoprinosine). However, this is just intended to extend life but not to be a cure.
In Turkey, where there are supposedly several hundred cases of SSPE in children, doctors have founded an SSPE committee which intensively researches possible ways of treatment. Results so far look hopeful: a combined therapy of immune globulin, doses of vitamins, change in nutrition and other measurements clearly show some good results. However, all of this has not yet been proved.
Japan, Canada and India are researching the subject too, but it still seems to be a long way until the day when there might be an effective drug.

Help from all over the world

It is a blessing that angels exist everywhere: people who help, who support us and just want to help because they are driven by their trust in life and good things: just like Nilgün, our dear friend from Turkey, who has spent day and night on the Internet researching to find help for our Maxi. Our pediatrician Dr. Harald Rickert from Besigheim and Dr. Jens Plünnecke, senior physician at the Ludwigsburg Klinikum, who have both known Max all along since the days when our boy was still healthy. They have accompanied us through the darkest hours during the past months, day and night. Dr. Gunvant Oswal from Pune, India, who has dedicated his professional life as a doctor to people who were born with or have acquired cerebral damages. He has built a clinic and has promised Max and his family lifelong support. Mohan K. from Bangalore, India, who made it possible that we can get medicine from the other side of the planet. And last, but not least, our dear nurses from the mobile children's nursing MOKI who are supporting us many hours per week to secure the 24-hour monitoring and medical care Maxi needs.

These people are the real heroes amongst us.
We do not know where we would be today without them. We are infinetely grateful for all they have done for us and our boy.

SSPE Committee

Upon the sudden increase of SSPE cases in Turkey, a committee was formed in 2005 by the Health Ministry. The task of this committee is to work on further reaearch in the field of SSPE and to potentially come up with more promising therapies for curing SSPE. The committee consists of renowned pediatric neurologists from the universities of Ankara (Hacettepe) and Istanbul
(Koç). It is governed by Prof.Dr.Banu Anlar.

Prof.Dr.Banu Anlar            Hacettepe University Tıp
                                Fakültesi Çocuk Nörolojisi B.D.

Prof.Dr.Sabahat Tezcan
        Hacettepe University Tıp
                                Fakültesi Halk Sağlığı A.D.

Prof.Dr.Sabiha Aysun
          Hacettepe University Tıp
                                Fakültesi Çocuk Nörolojisi B.D

Prof.Dr.Mehmet Ceyhan
         Hacettepe University Tıp
                                Fakültesi Çocuk Enfeksiyon A.D.

Prof.Dr.Ufuk Beyazova
         Gazi University Tıp
                                Fakültesi Çocuk Sağlığı ve Hast. A.D.

Prof.Dr.Firdevs Aktaş Gazi    University Tıp
esi Enf.Hast.ve Klinik Mikr.A.D
Prof.Dr.Gülbin Gökçay         University Çocuk
                                Sağlığı Enstitüsü
Prof.Dr.Levent Akın           Hacettepe University Tıp
                                Fakültesi Halk Sağlığı A.D.

Medical care

The medical care and treatment of Maxi has undergone numerous changes since his breakdown in March 2006, as it needed to be continuously adapted to the course of the illness. Supported by our German doctors we have included findings in the treatment of SSPE gained from abroad, specifially Turkey, where hundreds of SSPE cases exist. We believe that this helped alot to achieve unexpectedly positive changes in Maxi's condition.

Maxi's parents and friends have spent weeks and months to gather these bits and pieces of information, as the common knowledge on SSPE and its treatment turned out to be rather limited, at least in Germany.

Therefore we encourage all affected families who are seeking additional support in this difficult situation to contact us for further information and experience exchange. Please send an email to aktion-max@online.de.