new and looking for support

Hi, I've read this forum with great interest as my baby has just been diagnosed with DVM. We've been to the pediatric opthamologist and he said that everything is normal with the eye except for a sluggish dialation. He does not thing it is Leber's. However, since Milo was only 6 and a half weeks at the time (he is now 8 weeks) the doctor wanted us to wait 2 months and then come back for reevaluation -- at that point if there is no change he will do an ERG and an MRI. We have also had an EEG done because his eyes do wander and shake sometimes and our regular pediatrician was concerned that it might be seizures. Fortunately brain waves were normal so hopefully it is just DVM. The opth did not see nystagmus but his eyes definitely shake and move weirdly sometimes -- i don't know if that just has to do with the immature system or if it's possible that he missed the nystagmus. Hopefully we will find out more at the next appt in Oct. But it is sooooo hard to wait.

Your group seems so wonderful and supportive and it seems like the only place to turn. I am having such a hard time dealing with this although i try to remain optimistic. It seems like bizarre things just keep happening to us -- following my labor i was unable to walk for about a month because i had compressed the nerves in my legs during the pushing phase. It was also strange and no one seemed to know what it was, and just as I recovered from that we've been hit by this. My husband says that I just need to stop worrying and that all will be fine but it is so very hard and my heart is breaking.