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Albinism and DVM

Hello Ladies,
I'm tentativley saying hello in this corner of the world. It's been a busy busy week for me. I don't really know where to start.

The best thing I can do is quote what the doctor has written today in my 13 week old babies red book-and go from there.

'Lillith has ablininsm and this is affeccting her eyes. She has nystagmus and Delayed Vision Development. Her visual potential is unknow at the moment.

I'm in shock I think-this has gone from a question at doctors monday night to this. I am so happy at the speed but don't know where to start.

Can anyone advise me please.

and Hello! Thank you for reading

Lydia xx

Replies

  • Hi tink, I'm so sorry things have not gone the way expected for you. I know we all have concerns through pregnancy but sight doesn't tend to be one of them, or Albanism for that matter. I'm afraid I don't know much about Albanian but my son was diagnosed with dvm at 6 weeks ( we have a thread on here with several mums of visually impaired children each with different reasons, but it has been great to have people to talk to about it- feel free to join in )
    To find out anything isnt 100% perfect is a shock to the system and I am sorry to say if there is one thing I have learnt about dvm it is a very long waiting game. My son zachariah is now 13 months and we still don't know the full extent of his vision but it all began with a diagnosis and then we were referred to an optholmologist who put drops in the eye to check the back of the eye to see if any damage. Since then we have had MRI EEG vep etc, I don't know if these will be necessary in your case as the cause is known. Are you in the uk? If so you will be able to have a vision teacher who will come to your home and assist you in finding ways to motivate your little one and help assess his vision. It is wonderful that they are being quick with you and I hope that it continues at a fast pace as I know in the beginning you are just desperate for answers. I am replying on my phone right now so I know I have not been as in depth as I could be so please if you would like to know anything from me despite our situations being slightly different feel free. I also have an email account attatched to here so if you'd like to be less public just click on the email tab under my message and I'll get back to you.
    Look after yourself and your little one Lydia and I'll be thinking of you and your family, wishing you all the best
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