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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.

Replies

  • oops, sorry -- meant to post this to another forum.
  • Thanks for answering even though I meant to post elsewhere! I actually had a question for you that I asked in the DVM forum -- just wanted to know how your kids who had DVM got their eyesight, if it was gradual or all of a sudden and when it happened.

    With the nystagmus -- the pediatric opthamologist says he didn't see it, but the baby was fussy that day and I'm worried that he might have missed it. He did a test for light and the drops in the eyes, though, so I feel like he should have seen it.

    But I definitely notice that sometimes Milo's eyes make jerky movements and wobble which is what the regular doctor noticed. It doesn't happen all the time, though, so not sure what kind of nystagmus that would be.
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