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I am the mother of two children – Christo is 15 years old, Stephany is 14. My deep grief and suffering is that my son is ill with Hydrocephalus.

He was 6 months old when this serious disease was discovered. The doctors categorically denied operation as they had classified him as “a hopeless case”. They told us that he would never walk and talk. Although they had given him up, we began struggling for him. He was 3 years old when we heard about a doctor who had been importing and selling the valves, exactly needed for his operation. The valve should have been provided by the hospital, but they refused to pay for it and although it was extremely late /the circumference of his head was 63 sm./ we managed to collect the sum of $ 1000 and bought the valve. After having done that they told us the child had to be examined by a psychologist who could say whether to put the valve or not. Mentally the child was very well developed. However, the doctors judged only by the scan check they even refused to talk to the child. Finally, after many difficulties, they decided to make the operation. Two days after the operation the wound opened. They told us that Christo has very thin skin, which was splitting while being sewed. That led to infection and the child was treated with powerful antibiotics for over a month. There was a second operation, this time made by another doctor, in another hospital, as we had insisted. To our relief everything went successfully and quickly there. We came back home. The child was extremely weak. He couldn’t even sit up in bed. I began massaging him three times a day. After that we started doing exercises. For him it was a very painful period. He was crying and suffering but I went on, I didn’t give up. He started crawling though with difficulties. He was 4 when he made his first steps with me supporting him. It took him a long time to start walking by himself. We bought him a tricycle. He loved cycling and I always ran after him. At 8 he was cycling by himself. Now he is a student class 8. He is a very good student and has good results at school. He can remember easily and quickly. We are deeply impressed when he tells stories about things having happened long ago.

With him we made a miracle. We are proud with him. Our great sorrow is that the doctors know nothing about that. And they don’t want to. It is because nobody here cares about him. I’m afraid that he could be isolated and rejected by the society. He feels quire comfortable at school mainly because of his sister. She is his support he is safe with her. I stay in the school building all the time, too. I wait for him after each lesson and take him to the next classroom or floor. And all the time I’m in fear that something might happen to him because the children at school run push themselves and they can unintentionally hit him. 



   Aneta

Hallo,

bin erst gestern auf diese Seite gestoßen.

Im Oktober hatte ich Sprachstörungen und eine taube Hand. Nach dem CT hat sich herausgestellt, dass es ein Hydrocephalus ist. Ende Oktober wurde ich dann operiert. Es wurde kein Shunt gelegt sondern nur durchstossen. Es folgten 4 Wochen REHA.

Seit 1 Woche gehe ich wieder arbeiten aber mir ist ständig schwindelig, ist dass normal?

Die Kopfschmerzen sind etwas besser. Vor diesem Vorfall hatte ich nie etwas mit Kopfschmerzen zu tun. Da die Ventrikel immer noch geweitet sind gehen die Ärzte davon aus das ich den Hydrocephalus schon seit der Geburt habe?

Hat jemand ähnliche erfahrungen gemacht?

Bis dann 

Dany  

'Menschen zu finden, die mit uns fühlen und empfinden,ist wohl das schönste Glück auf Erden'

Hallo,

am 03. März um 19.30 Uhr findet in Göttingen eine Fragestunde rund um das Thema Hydrocephalus, mit PD Dr. Ludwig von der Uniklinik Göttingen statt.

(organisiert vom Erwachsenen- und Elterntreffen der ASbH-Selbsthilfegruppe Göttingen)

Anmeldung und weitere Infos unter schlungast@aol.com