Parents of Children with Albinism

Sensitivity to (sun)light

MonaP — Thu, 29 Jul 2010 17:22:09 GMT

Hi. I'm a new member of the site. My daughter has been in the care of a Pediatric Opthamologist since she was about 3 months old. On our last visit, my now 3 1/3 year old was diagnosed with Albinism. She has Congenital Nystagmus and Albinism was always talked about but now I guess its official.

My Dr stresses the need for a wide brimmed hat and/or sunglasses due to light sensitivity. A hat and sunglasses makes perfect sense for any child so I take the advice to heart but.....I have never noticed my child being sensitive to light. Nor is her skin any more sensitive to the sun than her older sister's.

Is it common for her not to be light sensitive? Should I expect her to become more light sensitive over time? I don't think I'm missing any cues from her.

I'm curious if others are in a similar situation and/or what others have experienced.

Thank you for your time.

Mona

Counseling for families

Ciji — Thu, 29 Jul 2010 08:14:33 GMT

Is there any counseling for families for families that are dealing with legally blind. My so has albinism, nystagmus and legally blind a vision of 20/400. And it's really taking a pull on me as a mother. my hubby I don't know what he thinks of every thing. He don't say much about it. and I was just wondering if there were counseling that would help us as a family.

Do people with albinism always have nystagmus?

AdelineEzraBaby — Fri, 14 May 2010 19:51:57 GMT

Just a question-I am going to start the process with doctors to try to figure this out. My daughter has strabismus, I don't think she has nystagmus though. I have not noticed either of these problems with my son. Thanks.

NOAH Chapter in Saint Louis and surrounding area

JessicaTraskReagan — Tue, 27 Jul 2010 18:29:03 GMT

Hi Everyone,

I'm looking for a NOAH Chapter in the Saint Louis Area or just to network with other families that have children with Albinism.

11 Month old Concerned about Daycare ??? need advice quick !!

AEH2009 — Fri, 23 Jul 2010 00:54:13 GMT

Hey there,

I am having a very hard time desiding if i should continue with my school as a medical assistant and then try for nursing or to give up my dream and work for a while and stay home with Hannah .... i want to provide a good career for my family and help out. Today i visited a local daycare center. it was nice. but my mother side is just telling me to stay home with her.... maybe im nervous and scared. i really could use some personal advice from anyone !

She is a great baby and i think that she would be fine with other kids. But for her vision and sun exposure..... i dont know if i trust people enough i guess.... ADVICE !!!!! thank you :)

Wraparound prescription sunglasses for kids?

provenance — Thu, 22 Jul 2010 18:59:41 GMT

Our daughter is almost 3, and we are trying to find wraparound sunglasses that will accept a prescription lense. She is very photophobic, and the wraparound will help with the glare. Has anyone found anything like this?

Our low vision doc did find a goggle like frame but it has a velcro band. We would like ear pieces. Because of our daughter's head shape, the elastic band glasses we've had in the past just haven't worked. I just thought I'd post here just in case someone had found something like this.

Any comments/suggestions would be much appreciated!

Amy

How do your kids get along socially?

AdelineEzraBaby — Sun, 30 May 2010 17:00:58 GMT

I think this is probably a good place to ask this question. I have been observing my daughter over the past year. She's 3 1/2, and she will be seeing the PO in a few weeks, hopefully he will be able to tell me more about her vision. She does well in familiar places, but when we go to the beach, the woods, hiking, whatever, she seems totally blind. She wants me to hold her hand, or carry her, or she will go very slow, or get down on the ground and scoot along down a hill. I did know a child who had huge visual impairments, and her behavior is even more extreme than his. I just feel so sad seeing her friends running around in the woods, playing hide and seek, and she just cannot keep up with them. I want to give her independence, but in order to keep up with them, I have to run along with her, hold her hand, coach the other children on their patience. But it just seems like she gets left out because she cannot keep up. Well, I think at this point it bothers me more than it bothers her. It is very hard to see my own little one go through this. What sort of adaptations have you made for your children?

Eye Surgery??

Jackie — Sun, 18 Jul 2010 01:36:25 GMT

My son Andrewis almost 6, he has moderate nystagmus. When I take him to his Dr. they always thing he is having a seizure because of his eye movement. He also has " lazy eye" and his left eye wonders. I have never been given the option of surgery for him, does the surgery work? I know that you can not "cure" the photosensitivity, but if I could get help for all the other things wrong with his eyes, maybe it would help him in school.

Any suggestions would be welcome.

100% Guaranteed Vitiligo Treatment Without any side effect.

dree33 — Mon, 19 Jul 2010 07:24:28 GMT

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Vitiligo is a relatively common, acquired loss of pigmentation of the skin, affecting 1% to 2% of the population. Destruction of melanocytes, or pigment cells, occurs and the skin becomes white. The most common sites of pigment loss are body folds (like the groin or armpits), around body openings, and exposed areas like the face or hands. It can also develop at sites of injury: cuts, scrapes, and burns. http://www.supercareproducts.com

being called albino

Bailee Nana — Sun, 18 Jul 2010 05:10:43 GMT

I was just wondering if it bother anyone else when some one even family members said that your child was albino? I have a granddaughter and nephew that have albinism but they are not albino. To me that is just like someone makeing up a name to call someone that has down syndrome. It is a condition that they are born with. It is not what they are. They are normal kids that have a few precautions they have to take and may where glasses but are normal loving caring children. I just wish that albino was erased from the dictionary. I hate it if you can't tell. Does anyone else feel this way or am I just an over sensitive grand mother and aunt

NIH Study

Andrew's Mommy — Sun, 27 Jun 2010 22:38:45 GMT

Very excited. I signed my son up for a study at the National Institute of Health in DC for an albinism study. A lot of our friends in the Albinism comunity have done this and finally got some answers....

Preschool considerations?

mom to Peaches — Sat, 17 Jul 2010 14:48:34 GMT

Hi All,

We've just started looking at preschools and I'm wondering if those of you who have been down this road have thoughts/tips to share?

For instance, I had been thinking a coop preschool would be great (cheaper and I'd be involved), but just found out those near us are huge. I can't imagine trying to educate the 50+ parents that work there about albinism/my daughter's needs given the parents are not volunteering their time that frequently...So now I'm thinking a smaller school with just preschool teachers might be best. And, given my daughter is very cautious physically, wary of kids running and shouting, and she loves looking at books and fiddling with markers/papers, that maybe a more structured program where learning letters and numbers, where more of the day is inside, sitting, etc, would suit her temperament/needs better.

There are a few preschools that say they have spots specifically for children with special needs, but of course, these schools are much more expensive.

If you have thoughts to share on your decision making process, or factors you wish that you had considered, I would love to hear!

Thanks so much!

PO Advice, may be looking for another one, suggestions?

Nikki — Wed, 14 Jul 2010 21:03:15 GMT

The other day My daughter had her PO visit With Dr. Bloom in clevelands UH hospitals. I feel now that he is wasting my time. i told my mother i would give him another chance at her 3rd visit in november. However he has not told us anything new about her vision nor has he really even looked at her. the first appt he dialated her eyes and to me seemed very standard for a first visit. her second visit i felt i drove 40 miles and waited an hour for nothing. all he did was walk in ask me 2 questions, show how Kairi's eyes "glowed" to the resident doctor that has not seen albinism before, and tried to get her to look at some sort of spinning toy and it was over.

was any body elses 4 month appt this short? all he had to really say was yes she has nystagmus...im no doctor but i could tell she did already. its not like its that hard to not notice your own childs eyes. i just feel we are not geting the answers we want or need. all he has told us is she is not 20/20 ...but we knew that already as well.=( he also told us he is not willing to do the nystagmus surgey because it is not what he called a reasonable procedure because it is only an expirement? is it really only an expiremental surgry? he also told us he can not give us numbers for her vision till she can tell us. he told us which would be about 4 yrs old. but it seems to me other people have glasses and/or numbers for their children and are younger then 4 yrs. both my boyfriend and i agree that we do not care for this doctor especialy after reading some of the posts on noah about other PO's. and are wondering about the earlier visits for some of your children. how long were they and what they did exactly and about when you had an exact reading for your child's vision.

We are willing to go anywhere that would accept ohio's caresource insurance. even if i have to go travel to or pass the state line i feel my daughters vision is worth it. the nystagmus surgery is somethign we are very interested in if Kairi meets any sort of requirement for it.

Kids Conference: Red Crew 1

tvicoms — Sun, 18 Jul 2010 23:02:34 GMT

Attention parents: if your child was in my group, RED CREW 1, at the convention, please email me if you would like some photos of our group activiites. I will need your first/last name and your child's first/last name for verification.

tvicoms@gmail.com

Also, some parents asked about resources on my webpage, the URL is www.vipsight.org

Thanks!

Kim

Reglan in pregnancy

roylance5 — Tue, 20 Jul 2010 04:19:40 GMT

My 4 year old son is said to have OA1. We do not have a family history of it. I'm wondering if the medication I took during pregnancy(Reglan) could have caused his vision problems. Anyone else take nausea medication during pregnancy?

Starting school, how does your child cope?

bernice — Sat, 10 Jul 2010 12:32:14 GMT

Hi all

My daughter is OCA1b and will be 4 yrs 9 months when she starts mainstream junior school in Sept. All very exciting and at the same time a bit daunting. My older boy will be in the boys school next to hers and I also have a one year old. We are in Dublin. As part of the preparation for her going to school we have worked with the school principal and have secured a classroom Assistant through our Dept of Education who will shadow our daughter within the classroom and facilitate her needs as they arise ie. enlarge font on worksheets, accomodate her in yard, sport etc. Basically this assistant will make all the accomodations that our daughter will need on a day to day basis in a subtle and discreet way. The good thing is that no one in the class will know that this person is assigned to any one child - they will all just think she is the teacher's helper. That's the concept behind these types of Assistants here in Ireland and by and large it seems to work well as it doesn't hilight the issues attached to one child over another. Here's hoping it will work out for us too.

What I am interested to know (and I realise that different countries have different systems in place for such things) do you all have extra help for your child at school? Do you all have "an assistant" type person or equivalent within a mainstream classroom? I know my daughter's requirements will change as she progresses through school and when she is bigger and in secondary school she will of course need the use of a lap top, cctv etc. But for now I would love to hear how you all manage with regard to junior school and what accomodations / support you have had to make for your little ones.

Many thanks

tips for super sensitive hearing?

mom to Peaches — Wed, 21 Jul 2010 18:22:52 GMT

My daughter is super sensitive to noise, and while we finally have polarized sunlgasses that let us go outside...she gets upset if we actually talk to people or if there are lots of kids/voices at the playground. Any tips? She doesn't have any other signs of sensory integration dysfunction as far as I can tell (in terms of food/texture) but in terms of noise, she does get upset if I cough, when the garage door opens (even if I give her the button to make it open/close), if my husband or I shout to one another up/down the stairs, etc. Will she just grow out of this or is there something we can do to help? She's almost 19 months. I'm dying to socialize with other kids/moms more especially now that we have the freedom to leave the dim house behind!

Thanks for any suggestions!

Sunscreen at school?

philamom — Tue, 01 Jun 2010 17:49:46 GMT

My son will be starting 1st grade and full day next year. I am trying to decided if I put sunscreen on him in the morning before school does he need to apply it again to go outside for a 20 minute recess? Thoughts?

Bear Crawling?

momtomonkeys — Mon, 12 Jul 2010 17:17:01 GMT

Whether your child has albinism or not, did they Bear Crawl between crawling and walking? Braeden has taken up bear crawling and that is a new one for me...neither of my girls did it. While it is quite cute it doesn't look very comfortable or efficient! I wonder if its because he can't quite see as well as he would like when he is standing up and trying to let go of the furniture to walk? I can tell he really WANTS to walk but nope its a bear crawl!

Ouestions Revisited

Torrie29 — Thu, 15 Jul 2010 18:32:34 GMT

My 9 month old son has nystagmous and a pale fundi. He has blonde hair, hazel eyes. He does not look like a classic picture of albinism. He looks like a dutch boy. He is half dutch and half latino. My other two children are darker than him. He is a little sensitive to light, but not much more then my other son. He is using his vision well for learning. He has just started to bear crawl! :)

He has also had some other issues such as torticholis, feeding issues, reflux, side assymatries and uncoordination, and spantanous sweating. He is meeting his mildstones at slower then my other two kids at a rate still concidered normal but slow. He has had a ton of help from theropy to meat theese milestones though.

We went to the geneticist. She looked at him and said given his coloring and nystagmous, she would just assume he had albinism. She gave us a paper from noah and said she wouldnt do any testing because it wouldnt change anything. I was fustrated because i have had so many questions. I think it does matter.

If we got a diganosois, is there help available if needed?

Also could all this stuff be related?

Is it all tied into albinism?

Could it be something else?

How sure could the geneticist be?

I have theese questions because i fear that if i loose help from the theropist, I may not get him the help he needs.

Should I push for the test or let him be?

Any answers or oppinions are welcomed! Thank You so much!

Ocular Albinism with absolutely no family history...

T-Mobile636 — Tue, 06 Jul 2010 16:18:13 GMT

I'm just curious if there are others out there that have a new onset of OA1 without any family history of it. My wife and I have 4 children, number 3 is Chris and he is 4 years old and has OA1. We have had the surgery by Dr. Leuder at St. Louis Childrens to help with the nystagmus and strabismus and it has helped a lot, however he still has quite a noticeable head-tilt to the side. I'm worried about how that will affect his growth, so every day I have him touch each of his ears to his shoulders 10 times...

I have a little bit of advice I'd like to share with new parents and other parents with a child with OA1. First of all, it's not the end of the world. Chris is an absolutely awesome son and can do everything his older brother and sister do. The biggest detriment to his vision in my opinion is bright sunlight. My advice to everyone is to think of how your eyes feel when you go the eye doctor and get those drops put in that makes you light sensitive for the rest of the day. My son wears sunglasses most days of the year, but he likes the spiderman and batman ones that you can get anywhere. Also, with swimming, make sure you buy the swim goggles that are tinted, the darker the better! And finally, when purchasing a vehicle, buy the one with deep tinted windows for in the back, and if not tinted already take your car to get the windows tinted. That increases the comfort tremendously for the little guys that don't know any better.

It's nice to meet you all,

Tony

Really need some help!!

NickiHail — Fri, 09 Jul 2010 20:39:25 GMT

So I'm new to NOAH and just need someone to talk to. I just feel so alone with having my daughter who is 1 with OCA. I also have a son who is 7 who does not have OCA and it is so hard to try to keep both of them happy at the same time and I don't know what to do anymore!! My daughter does not like it outside during the day cause she is just so sensitive to the sun that she can't even lift her head up due to it being too bright out for her, not to you she has transition lens in her glasses so they get dark and my son wants to spend all day outside. I have no idea how to keep them both happy. Plus I was wanting to try to find people close to our area.

all 3 of my children are albino. any parents out there in the same boat?

girlknoxx — Tue, 13 Jul 2010 17:57:16 GMT

Im new to the forum. Just had my 3rd child and it didnt really shock us when we saw he was albino too. We are quite the spectacle when out and about.

sun exposure

Elliesmom — Mon, 12 Jul 2010 21:16:42 GMT

Hi Everyone! I am new to NOAH, I read a lot, but have never posted until now. I have a four month old daughter who was diagnosed with OCA at 21 days old. The news was tough at first, but she is such a "normal" baby that we have all adjusted well:) I do have some questions or concerns regarding being outside in the sun. I have read many other posts, and the issues are similar but not exact so I thought I would go ahead and try posting. I have a 3 year old daughter who loves to be outside. Like many of you here, I struggle with taking Ellie outside so that her older sister can play. Things are much better at four months than they were at six weeks however. Her photophobia seems to be getting better, now Ellie opens her eyes outside. Actually she loves it outside, it is a great way to calm her. We go camping on the weekends, and she is very content at the campground. Like most babies she doesn't care for the heat though, so we tend to go outside during the morning and evening hours. My first question is about sunblock. I would like to add that I RARELY have her in direct sunlight... it is just impossible to keep her constantly in the shade. I have made the decision at four months to put sunblock on her. She has not had any adverse reactions to the sunblock, but I don't like the oily feeling (although the bottle says it is non-greasy) and "tropical" smell. I was hoping to find a sunblock that was just a lotion (I have seen Neutrogena and Aveno, but they are in bottles that are about 3 oz. is there anything larger?). No odor, no residue. Anyone have any suggestions? Another question I have is about how often to apply sunblock. If we are going to be in the car and her foot gets some light on it should she have sunblock on? Should I just get in the habit of applying sunblock anytime I leave the house? Does anyone have a sunblock that lasts longer than 90 minutes? I am also curious about sun exposure in the fall/winter/spring. I live in Illinois and am wondering if the sun is still too strong say in the winter for her. Will I need to apply sunblock in December? I go back to work in August and will be sending Ellie to daycare. Is it important to keep her out of the light entering a window there, can she get burned that way? It is a daycare center, so I don't think that closing the wall of windows will be an option. Ellie tolerates sunglasses and hats well now (or at least she doesn't have the coordination to pull them off yet!) but not the heat, so long pants and shirts don't seem like the best options. Any feedback you could give would be greatly appreciated. Lisa

Family of Owen in MN?

Samantha — Thu, 08 Jul 2010 02:09:11 GMT

Hey everyone. My ex was up visiting his mum in Northern Minnesota and he was at a parade in Ely, Mn and there was a little boy standing next to him who had albinism...Rob realized the visual issues of the little guy and saw that he couldn't see the candy being thrown out so Rob picked up some candy and held it where the little guy could see it. Rob thinks his sister had albinism too but wasn't as pronounced as Owen. Rob didn't say anything to his parents but kinda wishes he would have. I was curious to know if anyone knows of an Owen and his family in Northern Mn. Thank you Samantha