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infant son just diagnosed with albinism

Last post 05-31-2008 10:38 PM by 937momof3. 28 replies.
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  • 03-14-2002 12:00 AM

    • Shani
    • Top 500 Contributor
    • Joined on 03-14-2002
    • Posts 26
    • Points 640

    infant son just diagnosed with albinism

    My 7 week old son, Akiva, was just diagnosed (yesterday!) with ocular albinism. My husband and are scared and overwhelmed, and we know absolutely nothing about this condition. I have been crying on and off since we found out. We would love to talk to/and or meet other people who have gone through this. I live in the New York/Metro area, but would like to hear from anyone who can help.
    Thanks so much!
    • Post Points: 230
  • 03-15-2002 12:00 AM In reply to

    • nanci
    • Top 25 Contributor
    • Joined on 02-21-2002
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    Re: infant son just diagnosed with albinism

    Dear Shani,
    Our daughter has OCA and is almost 1 year old. I live in NJ. Our pediatric opthalmologist is in NYC. I know what you are going through. Please email me, and I can give you my telephone number. This webboard has been incredibly helpful to me.
    Nanci Kane (nanci_kane@lycos.com)

    Originally posted by Shani Cohen:
    My 7 week old son, Akiva, was just diagnosed (yesterday!) with ocular albinism. My husband and are scared and overwhelmed, and we know absolutely nothing about this condition. I have been crying on and off since we found out. We would love to talk to/and or meet other people who have gone through this. I live in the New York/Metro area, but would like to hear from anyone who can help.
    Thanks so much!
    • Post Points: 20
  • 03-15-2002 12:00 AM In reply to

    • Wanda
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    • Joined on 03-15-2002
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    Re: infant son just diagnosed with albinism

    We just found out too...everyone was noticing his eyes going back & forth (nystagmus), so our pediatrician referred us to a neuro-opthamologist. He goes for a VEP (Vision evoked potential) test in May. The more I read, the less I am upset. Maybe we can learn together. It is amazing that it was diagnosed at 7 weeks. Hope to hear from you.
    • Post Points: 5
  • 03-20-2002 12:00 AM In reply to

    • Shani
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    • Joined on 03-14-2002
    • Posts 26
    • Points 640

    Update

    Okay, it's a week later, and my husband and I have learned sooo much since last Wednesday. We've found a fantastic pediatric opthamologist for Akiva and have spoken to some great people through NOAH (thanks for all the e-mails!)
    A side note - if you are reading this and have anything to say, please post a response, I go online every day, and it's a bit sad not to get any feedback. Thank you!
    • Post Points: 20
  • 03-21-2002 12:00 AM In reply to

    Re: infant son just diagnosed with albinism

    Hi Shani,

    I've been in the same situation with you 4 months ago. And joining this club has been a blessing for me. Keep contact with us, you will find so much information you won't find from your doctor!

    Devon was not giving any reaction to moving toys, my face or anything, though they are placed right in front of him until last March 8 ! ( he is 18 weeks at that moment ). I kept playing with him everyday because I don't want to miss his first 'attention' to things. And suddenly, on that day, he held my hands which is right in front of him, and took it to his mouth. It was the greatest day in my life, you know. Now he loves playing with his 'elephant' or 'phone' everyday.

    Don't worry, your daughter (?) will develop well. It just takes a little more time than others. But it will make you get closer to her, and you will wonder how wonderful she is in your life.

    Write me anytime,

    MEGA

    PS: Thanks for everyone who has supported me through this club. I will be lost without you, guys !!!!

    • Post Points: 5
  • 03-30-2002 12:00 AM In reply to

    Re: infant son just diagnosed with albinism

    Shani,

    We have two sons with Albinism, and when our first son was diagnosed at 3 months of age we felt the same way you and your husband did. Davey is now 13 years old and has participated in t-ball, soccer, basketball, karate, swimming, acting, and the school band. It is amazing how well kids adapt, and we provide his teachers with as much information and support as possible. The vision stuff is easy compared to dealing with his being a teenager! Good luck, and you can always e-mail us with any questions.

    Rick and Marcia

    • Post Points: 20
  • 04-05-2007 10:33 PM In reply to

    • glorias
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    • Joined on 04-04-2007
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    • Points 65

    Re: infant son just diagnosed with albinism

    I know how you fell.  Our son was first thought to have a form of albinism at his 2 week visit to the doctors office. He had the white hair and the fair skin and when the doctor looked into his eyes that is when it was basically diagnosed.  The doctor referred us to a eye doctor  and is was nerve racking.  I wondered what I did to cause the problem.  The eye doctor explained some information about his eyes and did confirm that it was albinism but what type he was not sure and he sent us to a genetic specialist  to test him.  Jordan's eyes had not started the nystigmus until about 1.5 months old.  We were told to protect his eyes and much as possible with covering him up.  South Carolina is way too hot for that.  My husband has had a hard  time with the situation at the beginning and but has adapted to it.  This forum has been wonderful.  I just started reading and talking to other parents with older children than mine and it has helped me a lot.  Keep your head up for you and your son. You will do wonderfully.
    • Post Points: 5
  • 04-15-2007 3:38 PM In reply to

    • darcy
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    • Joined on 12-09-2006
    • Posts 26
    • Points 205

    Re: Update

    I'm new to this forum, but  I had to reply as I know quite a bit about growing up albino. 

    From the perspective of a child,  the first few yrs,  I didn't notice.  My parents loved me,  nothing else mattered. 

     But then I hit school.   Children tend to be cruel to anyone who is different.   An albino child,  a mentally handicapped child,  a black child in an all white class, or a white child in an all black class,  anything that is different.   The key is to minimize the differences.   You have an infant,  you're not thinking about this yet.  But when he is a child, who has to interact with other children,   please try to help him as much as possible by helping him fit in.  

    I was very much loved,  but my mother didn't understand how painful 'not fitting in' was.   The mistakes she  made were;   not dressing me in clothes as much like the other kids as possible,  my hair style was old fashioned and long, bushy,  and very white.   It should have been cut in fashion for that time,  preferably short, and colored.    The white skin you can't do anything about,  but the hair can be minimized.   And the out of fashion clothes and hair made the problem worse. 

    I don't know your culture, but I met a nine yr old black boy once.   I was an adult and had never met another albino.   His mother came up to me in a resturaunt and asked if I was an albino, explaining that her son was also.   Afterward I have kicked myself, as I didn't think fast enough to tell that mom things that could have helped him. 

    They had his hair in a large long bushy afro.   Blinding white and large.   Not necessary.  His hair could have been  very short, and dyed.   It would have helped him so much.  

    Also,  all of my childhood was not painful. I made lots of friends, and once they were friends they ceased to notice the differences.  School came easily to me, and even if it doesn't an albino child needs to understand from the first that an education is even more important, as driving may be a problem.   We need a job skill! 

    My parents underestimated me,  they thought,  'she's going to get married and have children,  why does she need college."  I did marry and have children, and have loved being a mom.  But oh how I wish I had finished college!

    Also, remember that once your child is an adult,  it gets better.   Yes there are adults who are jerks, bigoted, and cruel to anyone who is different.   But they are a lot further apart.  Most adults will judge him by what he is able to accomplish, by his social skills, and his own self confidence.  The 'different look' will not be as much of a hang up.   Or only a tiny one at first meeting and soon passed. 

    Yes albinism is a pain.  And can be painful.  But in the parade of handicaps that children are born with,  IMHO  it's one of the least painful.   Your son can live a good normal life and do just about whatever he wants to.   

    Also,  as far as glasses.  I had many pairs of glasses as a child.   I managed to 'accidentally sit on, step on, or lose most of them.   Because they didn't change my vision.   The opthamologists kept saying their glasses improved my vision.  And my folks believed them.   But they didn't  It wasn't until I was fifty two yrs old,  I happened to try on my husbands glasses and was amazed.  His prescription works better then anything given my by a long line of Dr's over the yrs. 

    I'm sure there are better methods for eye exams now.  I hope.  I hope that the eye Dr's that you take your son to are better at finding a prescription that works.  But if his glasses consistantly dissapear,  you might consider that to him,  they're not worth bothering with.

    This is probably more info than you wanted.  I hope that the main message is that it's not a terrible tradgedy.  Most ppl have some limitation.  Even non albino.  And your son will have advantages that some other children will not have.  Accepting and lovling parents.   Whatever natural talents he was born with.  Have fun watching as he grows and finding out what his talents will be.

    Anyone wanting to talk about albinisim please email me at  dryfishy@yahoo.com

    Let me try! Don't put fences around me. My eye sight will put up enough limits without you, my family and friends building more. Let me try and cheer me on whatever the outcome.
    Filed under: , ,
    • Post Points: 5
  • 04-16-2007 8:17 PM In reply to

    • midwestbug1
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    • Joined on 05-07-2006
    • omaha nebraska
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    Re: infant son just diagnosed with albinism

    Shani,

    my son Austin is now 13 months old and he is doing better than I ever thought he would!!! when he was newborn I thought he was blind, I was so scard. now that he has grown he has improved so much, he can track objects and see small items, like those tiny clear plastic tags that connect socks, he can find them and pick them up off the carpet, I can barely see them. he does wear glasses and has since he was three months old, but his yearly check up with the opthal. is next month and Im wondering if he even needs the glasses any more. I see no differece with or with out them. I remember when we found out that he has albinism (OCA) I cried for a week straight, but then I found this web site and everyone here re assured me and it really helped.

    • Post Points: 20
  • 04-16-2007 8:29 PM In reply to

    Re: infant son just diagnosed with albinism

    Hi Shani,

    My daughter is now 4.  She has Occulocutaneous albinism whcih affects the eyes and pigmentation.  Sp she has white hair and blue eyes.  At first, when she was 4 days old, a  misinformed eye doctor told us that our daughterwould be totally blind.  Needless to say, i cried for weeks. Until i discovered NOAH and albinism_international, a yahoo group.  The support was just great and it still is today.To see her today, she is extremely bright and although she has low vision, she functions EXTREMELY well.  She ice skates, she does ballet, she rides her bike, etc.

    I wish you all the best.  Good Nachus.

     Kelly's mom

    KELLY'S MOM
    • Post Points: 5
  • 04-23-2007 12:51 AM In reply to

    • MomInKS
    • Top 25 Contributor
    • Joined on 07-13-2006
    • Kansas
    • Posts 240
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    Re: infant son just diagnosed with albinism

    Hi Shani,

    Welcome to the AOC.  I have an 11 month old daughter, Lyra, who has oculocutaneous albinism. We live in the Kansas City metro.  I can definitely remember having those same feelings in those first few weeks and even months.  It has been an emotional roller coaster to say the least.  I can't believe we are getting ready to celebrate her 1st birthday.  It's gone by way too fast.

    The information I've gained and support I've received from NOAH and Albinism International has been incredibly helpful.  Let me know if you ever have any questions I might answer.  I have a website set up dedicated to Lyra and our experiences over the 11 months.   I  tried to design it to be a resource for new parents of children with albinism.  Please take a look if you think it might be helpful.  www.parentofachildwithalbinism.com

    Thanks,

    Mashawna Thompson 

    http://www.parentofachildwithalbinism.com

    • Post Points: 5
  • 04-24-2007 3:01 PM In reply to

    • Cheryl
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    • Joined on 12-26-2006
    • Tx
    • Posts 263
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    Re: infant son just diagnosed with albinism

    welcome to NOAH!!!  My son is 10 months old... and I dont know what I would have done w/out this site!!!  I suspected Albinism immediately when he was born.  HE had a head full of white hair.. and he wouldnt open his eye's for the first few days.  I guess everything was too bright for him.    He is doing well..... no glasses yet... although he does have a developmental delay. (which is normal.. and due to the vision)   Email me anytme!
    Mommie2AwhitehairedPrince










    [IMG]


    http://www.myspace.com/lovecadencash
    • Post Points: 5
  • 04-28-2007 1:51 AM In reply to

    • jacobsmom
    • Top 75 Contributor
    • Joined on 05-22-2006
    • West Jordan, Utah
    • Posts 97
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    Re: infant son just diagnosed with albinism

    hi Shani

    My DS was diagnosed at 3 months. He is now 8. He loves soccer and loves to read. he also drives our go kart anywhere he can and is also on his bike when he can be! His vision isn't that bad. he doesn't wear glasses except to read. It is very confusing at firstwe wer elost for words when we found out! I'm glad you are feeling more comfortable with it now and getting so informed!

    Sheri-

    Mommy of: Jacob (OCA), Corinne, Owen & Sadie
    • Post Points: 20
  • 04-28-2007 11:06 AM In reply to

    • Meghan
    • Top 25 Contributor
    • Joined on 02-23-2002
    • Providence, RI
    • Posts 272
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    Re: infant son just diagnosed with albinism

    Hi Shani!

    I'm 24 with OA...right? that's right..the full blown kind of albinism hahhaa. Anyway, the best thing my parents did for me was treat me like any other kid. If I wanted to do something they said "ok, gofor it". THey supported me, and still do! I didn't have any special privledges because of my condition. You should get in touch with the Commision of the Blind. They were amazing for me. I had meetings every sic months with them, and around college time, they gave me a free computer with zoom text and helped pay for some of it! When we had our first meeting, the cousoler told my mom that I was never going to be able to walk to the mailbox by myself. After she left my mom asked me to go get the mail. She walked about ten feet behind me. I went and got the mail and was totally confused as to why she followed me instead of walking with me. I remember this day too! After that, mom knew that I was going to be just fine.

    Albinism isn't the end of the world. It's not as bad as you may think. I need to wear SPF 10000 when I am outside, and I have bad eyes. The low vision part really stinks because it keeps me from driving, but I get by with public transportation. I have spent the past two years traveling throughout the US with my job, and I have done this myself. There will be teasing because kids are mean, but kids find anything to tease about with others albinism or not. The way I got past it was by laughing at myself. Once I became comfortable with my conditioin, things were jsut fine.

    The one thing my parents stopped me from doing was gymnastics because they felt my glasses were going to fly across the room doing a flip.... I'm still mad at them hahahhaa.

    If you have any questions feel free to contact me.

    ~Meghan 

    • Post Points: 20
  • 04-28-2007 11:40 PM In reply to

    • Debby
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    • Joined on 08-16-2004
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    Re: infant son just diagnosed with albinism

    Hi Shani and Family,

    First, let me just say congratulations on your new son.  I have two boys one 3 1/2 with albinism and one four months without.  I think the hardest part of finding out your child has albinism is the unknown- does he see me? will he drive? will he have friends? can he see my face?  It is natural to worry -you love him and the fact that you are on this web site trying to soak up as much knowledge as you can tells me that you are great parents.  My three year old son is constantly on the go.  I laugh now to think that I had concerns about him learning to get around because I can barely keep up with him. 

    We had early intervention and a teacher of the visually impaired come to our house monthly to track my son's development starting at about five months.  This was nice because it kept me from worrying about his development and gave me a clear picture of his progress.  My best advice however is that even though every part of you is wanting to do something proactive to help him- just take the next couple of months and enjoy your son. Baby him like any baby- his vision will develop and he will astound you.  There will be obstacles but you and he will find your way around them or if he is like my son bulldoze right through them.

    One of the best things that happened to my family in the early days of the diagnosis was going to the Perkins School for the blind where they had an albinism group and we met parents and kids that were around three.  I was so scared and then I saw these great kids running and playing and I swear I knew things would be ok.  I strongly encourage you to find some people in your area to meet.  Nobody understands your concerns more then another parent of a child with albinism.  The wonderful thing about this forum is that there are parents of children of all stages here to help you out. 

     And as an aside I do not know why but the kids that I have met with albinism seem to be some of the smartest coolest kids I know.

    Best of luck to you and Akiva

     

    Deb Santoro

    • Post Points: 5
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