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  • Nystagmus?? Please Help!!

    I have recently noticed that Jathan has a constant sweeping motion with his eyes from one side to the other (very frightening for a parent to see). I am assuming that this is the beginning of his Nystagmus. Is this correct? Also, for those of you that have experienced your children doing this, at what...
    Posted to Forum by Jathan on 07-02-2008
  • Re: Questions about waveform recording

    Well, Marc, in my TOTALLY unqualified opinion, the test will probably record the rate and range of movement. I guess by knowing the rate and range of movement, your doctor can better diagnose the nystagmus. This site has some information about waveform testing: http://www.dizziness-and-balance.com/practice...
    Posted to Forum by DadInKS on 04-19-2008
  • nystagmus????

    I have only known for three days that my daughter has some type of albinism. I was told by her doctor that she has OA but from what you all have said I believe it is OCA. Now my question is about her nystagmus. Does it get better or worse as she gets older? Is there any treatment or surgery suggested...
    Posted to Forum by angie on 03-22-2008
  • Babies with Albinism focussing

    Hi, I have a four and 1/2 month old with OCA. He has blue eyes and his opthalmologist says the eyes are fairly well pigmented. He is only just starting to develop Nystagmus over the last few weeks. We don't see the opthalmologist until 17th December. My son still doesn't appear to focus on things...
    Posted to Forum by smeb01 on 11-29-2007
  • Re: TONS OF QUESTIONS!

    Sam's hair is light, but not very different from anyone else. Adam (the 17 month old) is actually a little lighter then Sam so we don't really have the whole attention thing. I generally don't tell people that Sam has OA or Nystagmus. No one in my Mom's Clubs really knows, I am sure they...
    Posted to Forum by samandadamsmommy on 10-28-2007
  • Re: Nystagmus Surgery

    Anna, check out the post in the Adults With Albinism forum titled " I've just had eye surgery and WOW!"
    Posted to Forum by Morana Crawford on 10-10-2007
  • tanning beds?? and surgery? and more questions??

    Well, I'm 20 years old and only recently started researching my ocular albinism. I always knew that I was albino, but never understood much about it and why my eyes "shake" because nobody really bothered to explain it to me. I drive with a binocular aid so life is pretty much normal, although...
    Posted to Forum by andrewlambert on 08-27-2007
  • Re: teaching visual "engagement"

    I have albinism and the associated nystagmus, It, and the ability and desire to make eye contact, improved greatly with age (I'm 37 now). It's actually easier for me to concentrate when I'm NOT looking someone in the eye, so only do so when in professional settings. As others with albinism...
    Posted to Forum by Julieanne on 08-15-2007
  • Re: Albinism and nystagmus

    Several years ago, they had a corrective procedure for nystagmus that they were developing over at Hadassah Hospital, in Israel. It involved injecting botulin toxin (yup, botox!) into the muscles around the eye to paralyze them temporarily, until they could sort of catch up and gain strength. However...
    Posted to Forum by tikva on 12-22-2006
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