My 7 year old daughter has been diagnosed with DPG on march 14/2005. We have just finished the first set of treatments with Radiation/Chemotherapie (temzolomide)/decadron.
The weight gain has been a very big issue and the mask had to be replaced once, by the time of the
last radiation treatment even the second mask had
become too small. We are slowly decreasing the
decadron with hopes that none of the symptoms get
worse, in which case the decadron would be increased again.
I would love to hear from other families that have children diagnosed with DPG and find out about their experiences with treatment.