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Newborn diagnosed with Albinism

Last post 04-01-2010 2:34 PM by Brittany Griffin. 18 replies.
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  • 01-03-2010 3:32 PM

    • Blessed
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    • Joined on 01-03-2010
    • Posts 4
    • Points 125

    Newborn diagnosed with Albinism

    Hello Everyone,

    I have a healthy week old baby boy who was diagnosed with albinism at the time of birth.  The doctor, however, didn't provide any details as to the type of albinism my son has.  Not sure if this is in part to him being so young, or the lack of knowledge of the condition on my doctor's part.  In any case, this is all very new to me, and I wanted to get some advice.  This is my second child; the first, a boy also, is 21 months and doesn't have the condition.  What can I expect these first few months of life?  My son currently has an eye infection.  Are antibiotic opthalmic drops okay to use in his eyes?  Any advice is greatly appreciated.

    Sincerely,

    Blessed

    • Post Points: 110
  • 01-03-2010 4:40 PM In reply to

    • Adalynn
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    • Joined on 12-26-2008
    • Posts 3
    • Points 90

    Re: Newborn diagnosed with Albinism

    HI and welcome to Noah. These forums are great. At first with my daughter I noticed that she wouldn't open her eyes at all. Then three months later I noticed that she was have her eyes move back and forth quite a bit. I took her to the pediatrician and he said she nystagmus. Then I immediatly took her to a opthamologist and she said that she has albinism because of the no pigment in the eyes. I was devastated I thought that she wouldn't be able to see me face or anything. I was completley wrong. her vision is 20/200 but acts like she can see far beyond that. If I didn't tell people she had a vision problem then you wouldn't even be able to tell. We have a lot of other issues though. I don't know if they are related to her albinism, but this is what we are trying to figure out now. If you have any questions just let me know.

    • Post Points: 20
  • 01-03-2010 5:14 PM In reply to

    • Jad SAAD
    • Top 150 Contributor
    • Joined on 01-02-2010
    • Beirut Lebanon
    • Posts 65
    • Points 1,015

    Re: Newborn diagnosed with Albinism

     Blessed the best way to have a proper answer to your question is to seek n eye specialist different from the one you have visite

    as for you adalynn i have analysed (with the help of my psychologi docter) my own past so i may be of help so don't hesitate to ask me questions

    • Post Points: 5
  • 01-03-2010 5:22 PM In reply to

    • Kelli
    • Top 50 Contributor
    • Joined on 02-11-2007
    • South Dakota
    • Posts 215
    • Points 2,945

    Re: Newborn diagnosed with Albinism

    Welcome and congratulations on your new little boy!!  You have definitely come to the right place.  My son is 3 years old and doing wonderful.  This is a great site because we have all been in your shoes and know the uncertainty of things to come.  Just know that this is a place that you are welcome to ask any quesion you want, we've all asked all sorts of questions!  Please know that your son is going to be just fine.  My son, Ryker, didn't give me direct eye contact until about 3-4 months old, so that will take awhile and was very hard for me.  From 3-4 months, you can expect your son's vision to continue to improve.  He may develop nystagmus, most people with albinism have some sort of nystagmus.   Ryker continues to amaze me with everything he can do and your son will too!  Please contact Lori at NOAH, she will be able to get you in touch with others in your area.  I would also recommend looking into early intervention in your area.

    Congratulations again!  Kelli

    • Post Points: 35
  • 01-03-2010 7:30 PM In reply to

    Re: Newborn diagnosed with Albinism

    Hi and welcome!

    My son is also 3 like Ryker and doing just as great! It is very hard in the begining. I cried for months. Had good days and bad days. Andy also did not give us any eye contact until about 4 months old. It was the best day ever!!! What I was told the early you try to get the child to track (follow) objects the better, Out Early intervention (EI) teacher told us to bring Andy in our half bathroom that had no window and turn the light off. Get a flashlite and shine it on the wall, so that is the only thing he sees is the light.He was abled to learn how to track. Early intervention can help, call your local commission for the Blind and county and ask about EI, We got lots of free toys from EI! It is tough in the begining, but now it is is wonderful. Andy is awesome, he is like a reg kid, he knows he has to wear sunglasses and a hat outside and look at things closer thats all!

    • Post Points: 5
  • 01-04-2010 12:31 PM In reply to

    Re: Newborn diagnosed with Albinism

     Hello-

    My second son, Zachary, was born with OCA and diagnosed at 4 months old.  My oldest son, Andrew, does not have OCA and is only 17 months older than Zach.  The first 6 months were the hardest for me, but I feel that was due to my lack of sleep from having a 17 month old and a newborn with NO family around to help.  

    By 6 months, I had a grip on being a mommy to 2 boys and I had a good grasp on the albinism.  It took 6 months to understand the condition, sign up for EI and start talking to everyone about Albinism.  Yes, I was sad alot but once I put it all into persepective, my life become easier.  Everyone is different and every child with Albinism is different.  Zach had no delays (except speech at 2 years old--not related to albinism) and was a normal baby--good sleeper and happy child.  We treated him just like Andrew (same toys, same routine) but just made sure the sun protection was used outside.  

    One thing I have STRESSED to my oldest son (again, he is only 17 months older so they are very close) is that the nystagmus and albinism/low vision is not something Zachary can control.  My son is NEVER to make fun of Zachary because he can't see something or because of the nystagmus.  He is stick up for his brother and answer questions if someone asks him--not be embarassed by his brother.  I am a firm believer in family and I can not have one son who makes fun of his brother.  Now, if he wants to make fun of something else--fine--but not the albinism or nystagmus.  We help each other in a family--if you can't depend on your brother--than who can you depend on in life?  My oldest son is aware of the albinism and understands it--especially now since so many people comment on Zachary or they hear talking to teachers about accommodations.  Andrew is 7 and Zach is 6 years old now.  Those questions didn't start until Andrew was around 3 or so.  Whenever anyone asks, I am honest and open.  Zachary has heard me tell the Albinism line a thousand times and just says "Whatever".

    Jo

    • Post Points: 20
  • 01-04-2010 6:07 PM In reply to

    • Blessed
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    • Joined on 01-03-2010
    • Posts 4
    • Points 125

    Re: Newborn diagnosed with Albinism

    Kelli,

     Thank you for your post.  Your experience is very encouraging to me.  I noticed you suggested I contact Lori.  Who is Lori, and how can I get in contact with her?  Do you have an e-mail address for her?

    Blessed

    • Post Points: 5
  • 01-05-2010 2:31 PM In reply to

    • SVenn
    • Top 150 Contributor
    • Joined on 06-20-2009
    • South Carolina
    • Posts 77
    • Points 1,280

    Re: Newborn diagnosed with Albinism

    Hi Blessed!

    I have a 7-month-old little girl with OCA and a 2 year old without albinism. Caroline has a blocked tear duct and was also on drops for a week or so when she was about 3 weeks old. Then she got a double eye infection (pink eye) a couple months ago and was on them again. She did fine with both of them.

    The only sure way to determine what type of albinism is by genetic blood tests. Our insurance would not cover the testing so we do not know hat type Caroline has either. We are guessing she has OCA type 1 since she has white hair. But knowing which type your son has will not change treatment. 

    Caroline was very sensitive to light when she was born. She did not open her eyes much at all the first couple of months and slept most of the day. She has gotten better with light as she has gotten older. We use lots of shades, hats, and sunglasses. She also did not show any obcious signs of vision until she was 4-5 months old. She rarely made eye contact, did not track, and had little to no interest in toys. However, once she was about 4 1/2 months old she started "seeing". She made more eye contact, track toys, reached for toys, etc. She has been within a few weeks of reaching milestones as her older sister was. She is now reaching and tracking for toys, sitting up some, cooing and babbling. She isn't crawling yet but is rolling all over the room and gets in plenty of trouble that way :) She does best with objects right in front of her. Anything out of 18-24 inches away she doesn't appear to see or pay any attention too. Bright, high contrast toys (black/white, red, yellow), and toys with lights are the best.

     I would also recommend the book "Raising a Child with Albinism". You can order it through NOAH and it is a wonderful resource.

    Best of luck!

     

    • Post Points: 5
  • 01-06-2010 7:03 PM In reply to

    • Blessed
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    • Joined on 01-03-2010
    • Posts 4
    • Points 125

    Re: Newborn diagnosed with Albinism

    Thank you for your response.  Your experience is encouraging to me.  If you will allow, I have another question for you.  Did your son go to daycare?  I'm trying to decide whether or not to put my newborn into daycare.  I wonder if they will accomodate him.  Any advice?

    Blessed

    • Post Points: 5
  • 01-08-2010 1:53 PM In reply to

    Re: Newborn diagnosed with Albinism

    I would like to congradtulate you on your new little blessing. And you are on the right track with joining Noah.  My daughter is now 8months old, 2nd child 1st child did not have this condition . Let me start out by telling you that I am in a biracial relationship . So when my child came out with bright blond hair all the doctors thought she had jondis I asked if she had albinism every doctor told me no At her 3 month appointment I had noticed that her eyes moved back and fourth rapidly so I asked my ped. and she reffered me to an eye specialist who diagnosed it and then I was reffered to uic for further diagnosis and then to a genetics specialist to confirm what type of albinism she has.  It is a little difficult at first getting to the right people with the right answers. You can contact Easter seals early intervention and they will also help . My daughter has a vision specialist out once a week to my home to work with her and they will help you also when it is time to go to school with helping you set everything up for classroom help.  I was told to keep her  covered with sun block when she older and goes outside and to cover her head with a hat and something to protect her eyes.

    but besides that nothing out of the ordinary she is healthy and happy and very smart .  but if you have any questions feel free to ask away . i will help if I can. again congradulations lynne

    • Post Points: 20
  • 01-12-2010 9:19 PM In reply to

    Re: Newborn diagnosed with Albinism

    My son has OA and is 2 1/2 .  He sees about 20/70 and does great.  His nystagmus appeared at 3 months and i thought something was up at birth when he never looked at my eyes.  he only ever stared at my forehead.  my husband and i knew he couldn't see more than a few feet away when he was a few months old.  we constanly played hiding games with him (hiding behind the kitchen island and popping up at different distances) to build his vision and gage where he was.  his vision improved the most from about 6-10 months.  his nystagmus also slowed down.  he is just now realizing that sunglasses and a hat help so he is starting to request them.  we are in the process of trying to see dr hertle and are not believing our current PO that glasses will not help him.  There is such great advice here.  i just found this site in Nov!  You seem to have it together and you know you are Blessed!

    Congratulations!

    • Post Points: 5
  • 02-05-2010 1:46 PM In reply to

    Re: Newborn diagnosed with Albinism

    Hi,

    Does anyone know about any NJ chapters for Occular Albinism.  My second child, Eric, is 4 months old and was diagnosed yesterday with Occular Albinism. I am  so curious how other kids symptoms presented and how much did they improve, what interventions people tried, does everyone go to CHOP (Childrens hospital of Philly) to get more info?

    • Post Points: 50
  • 02-05-2010 10:39 PM In reply to

    • Roxanne
    • Top 10 Contributor
    • Joined on 11-09-2007
    • Posts 475
    • Points 6,645

    Re: Newborn diagnosed with Albinism

    Hi Congratulations on your son and welcome! There are many families in NJ with albinism! We went to Dr. Hertle in pittsburgh but he is changing his location. We also go to Dr. Appel at the Feinbloom center for low vision in philly. Andrew's mom and dad are in NJ and have lots of great info as well. My daughter had nystagmus by 6 weeks old, over the next year and half that improved but during growth spurts, illness, teething, when tired, etc. their nystagmus seems to increase. By a year in a half she developed a null point. My daughter had surgery for nystagmus, strabismus, and null point. She wears glasses and sunglasses. My son does not have many of the eye problems but is starting vision therapy because his eyes do not work together and he is photophobic. My kids both have blond hair with some pigment. We will eventually go to CHOP for genetics since they can tell you what type of albinism my kids have but I am assuming ocalb. The eye doc can only really tell you that the visual impairment is due to albinism but not really what specific type. Unless the mom has mottling in the back of her eye which is a good sign that it is ocular albinism. (I only say that because many kids were misdiagnosed as OA and actually had oca of some type) I have got most of my info through NOAH and all the wonderful people I have met on here. Everyone on here is very helpful and would be happy to answer any questions you have!! Roxanne mom to Matthew and Alexis with albinism
    • Post Points: 5
  • 02-06-2010 9:45 AM In reply to

    • kaysmom
    • Top 75 Contributor
    • Joined on 10-05-2005
    • PA
    • Posts 105
    • Points 1,640

    Re: Newborn diagnosed with Albinism

    Hi and Welcome!  We are in PA, but close to Trenton.  We take our 10 yr old daughter to CHOP.  They have an office in Princeton that we go to when we can which is easier than driving to Philly.  We see Dr. Davidson.  Kay actually has her next appt with her on Tuesday.  We did genetic testing with Kay in November at CHOP (in Philly).  Everyone expected her to have OCA1b, but she does not.  Now they are testing for OCA2.  We are still waiting for results.  Good luck with your baby and feel free to ask any questions you have.

    • Post Points: 5
  • 02-07-2010 10:52 AM In reply to

    Re: Newborn diagnosed with Albinism

    we go to PCO in Philly. I am in Central NJ, we are you? My son is 3 with OCA, we were told OA, but testing came back normal.

    • Post Points: 20
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