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Albinism
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amother


 

Post Sun, Sep 21 2014, 7:18 pm
Thank you so much everyone for all the info Smile
I also keep thinking that, that if he has to have something there are so many things that are a lot worse.
How do people find out about everything they need to do? I only had one appointment so far when we found out that that's what he has, but the ophthalmologist really wasn't helpful in giving us information. I actually left that appointment really confused until I did more research. We were supposed to have an appointment tomorrow with someone who is experienced in this, but it just got pushed off...
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amother


 

Post Sun, Sep 21 2014, 7:19 pm
amother whose husband has it - does he drive?
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DBW1




 
 
    
 

Post Sun, Sep 21 2014, 7:23 pm
You need to have a dermatologist to check your child’s skin. Ask your child’s pediatrician for numbers on various therapies and organizations.
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amother


 

Post Sun, Sep 21 2014, 7:31 pm
ok.
Also, do you think it's a problem to wait another two months for this appointment? What did they do when your daughter was this age? (6 months) I have to speak to them again tomorrow.
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DBW1




 
 
    
 

Post Sun, Sep 21 2014, 11:48 pm
Have you noticed any changing moles on his skin, growth or whatever? If not, it is not a big deal. Just use the suntan lotion (Neutrogena Baby or the alligator one) on all exposed skin (I don’t do fingers because she puts them in her mouth). They also make SPF clothing which does not let the sun in through the weave. I would use that for extended outdoor use in the warmer months. Buy a sun shade for the car. They also make clear SPF covers for windows, but we have not put those up (yet?) even though we have some old windows in our house. Though she seems to be fine w/o. They also make baby sunglasses with UVA/B protection because melanoma in the eye is scary.
You sound like a really good mom who is on the ball. Your child will be fine as you grow to understand his unique body and what he personally can handle. I never took my daughter outside much at first, now it is ALL she wants to do.
Btw- on the driving question. I saw this really cool telescopic glasses that enables people with just about 20/200 (legally blind) to drive. Not all albinos drive though.
Oh and on jobs- My husband has a friend who is an albino. He ended up staying on in yeshiva to learn and if I am not mistaken to give shir.
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DBW1




 
 
    
 

Post Sun, Sep 21 2014, 11:49 pm
I think her first dermatology appt was at around 6m
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DBW1




 
 
    
 

Post Sun, Sep 21 2014, 11:51 pm
On a funny note- ophthalmologist must not be very good at explaining information to patients because ours STINKS. He did tell us though that they are currently experimenting on injecting melanin in rats’ eyes. Could you imagine how awesome that would be if it worked!
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amother
Magenta


 

Post Mon, Sep 22 2014, 12:06 am
amother wrote:
amother whose husband has it - does he drive?


Yes. Legally he just needs to read the street signs. He has a special set of glasses with a monocle for this purpose. I just found a web site that explains it.
http://www.ocutech.com/bioptic-driving.aspx

My dh can't see the potholes even with the driving lenses. So when we are travelling together I try to drive. He also drives much slower. If it's raining or snowing he does not drive. The advantage of living in NYC is that he takes the subway to work. Very Happy
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amother


 

Post Mon, Sep 22 2014, 10:20 am
I heard about those glasses, I was wondering if anyone really uses them. another question - Does he have to use anything special for reading? Does he have to stop after a certain amount of time?

The melanin would be awesome, but would it help everything? I thought that the eye somehow doesn't develop correctly?
I need to start with more sunscreen, until now if I was outside I kept him in the shade with a uv protected cover on his stroller, but he doesn't really like to just sit anymore Smile
That's good to hear about your husband's friend. One of the things I am worried about is yeshiva - It sounds like some people get very tired after reading for a while. If he was able to stay I guess he worked it out! We'll keep on davening Smile
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DBW1




 
 
    
 

Post Mon, Sep 22 2014, 8:41 pm
There are people who use those glasses. There are also people who are too embarrassed to use them. Try to give your son self-esteem/confidence and he will hopefully use them if he needs them. It is too early to tell what is vision will be.
You do your part, the rest is in Hashem’s hands.
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DBW1




 
 
    
 

Post Mon, Sep 22 2014, 9:07 pm
Hashem gives people what they need in life. This is true personality wise also. This man was given the ability to preserver. Your son was given what he needs as well to complete his tafkid in life whatever that is.
just remember Lefum tzar hagra- if it takes someone longer to complete something or if he has to work harder to complete something or if he never completes something but TRYS anyways that is what is important in Hashem’s eyes.
Although I wanted to read the article, the doctor did not have it on him. I guess he was not expecting me to ask to see it! All I know is that the eyes of albinos are under developed. I tried googling it, but have not found the he was referring to.
I also had my daughter behind a UV shade in the stoller for as long as possible. When she got olde, Ii was SCARED to let her outside. Now it is all she wants to do.
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amother


 

Post Tue, Sep 23 2014, 11:00 am
Thanks - I meant that the glasses look very hard to use.

Thank you so much - it's a big help to hear from other people Smile
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DBW1




 
 
    
 

Post Tue, Sep 23 2014, 12:18 pm
OH!! Vitamin D!!! It is very important to give vitamin D to your son (as well as to every orthodox person who dress with modesty) since your main source of vitamin D is from the sun. Insufficient vitamin D is linked to weak bones and dementia.
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amother


 

Post Sun, Sep 28 2014, 12:28 pm
k thanks Smile
I'll ask the doctor about that.

Also, what do you do on Shabbos about going outside?
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newmom1987




 
 
    
 

Post Sun, Sep 28 2014, 12:45 pm
I had a professor in college who had albinism. I know that he did not drive, but other than that, he seemed to have a full life and was very accomplished.
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amother


 

Post Sun, Sep 28 2014, 12:56 pm
amother wrote:
k thanks Smile
I'll ask the doctor about that.

Also, what do you do on Shabbos about going outside?


No experience with Albinism b'h but I get sunburned easily and got a heter to use sunlotion spray on Shabbos. AYLOR. I'm sure there's a way 'round it for you.
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DBW1




 
 
    
 

Post Sun, Sep 28 2014, 9:56 pm
We have a heter given to us by two different rabbis (only because one was out of town and did not get back to us before Shabbos) that it was TOTALLY mutar to apply whatever suntan cream (because they do not make the suntan lotion with the physical barrier in a spray) to apply it on Shabbos as often as needed. I was told that she should go out on Shabbos (I was prepared to keep her indoors). The only stipulation I got on this heter was that I should rub the suntan lotion in as much as possible.
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