NOAH AOC

I found this site http://www.cosmeticsdatabase.com/special/sunscreens/summary.php which discusses sunscreens and which one's are best.  This is from the Environmental Working Group. This link talks about how far behind the US is in approving effective products.  They also mention products that are approved in the US that are not allowed in other countries.

I am interested in what everyone has to say about this.  In my searching on the internet, I find lots of contrary opinions and I am not sure what to believe.  Since as a community we are big sunscreen users, it is important that we are using products that are not harming us.  

Thanks for the websight, I enjoy learning new things.  I did find though that some of the data they had collected was on the older side.  However if you look at the ingredients of the Top sunscreens you will find two common ingredients, Zinc oxide and Titanium Dioxide.  What have you been using up till now?

My daughters dermatologist recomended Solbar Shield SPF 40  Zinc Oxide and Titanium Dioxide it was brand new in 2007.  They are the nano particles and the sunblock is still reasonably priced.  $10 to $12 per 41/2 oz.  I do have to special order through my pharmacy but they are happy to do it and it is cheaper than online anywhere.  Dr. Kane (dermatology childrens hospital Boston) told me not to go higher than 5 - 9 % of either the zinc or titanium otherwise it blocks all production of Vitamin D.  Our little blondies where the stuff too often to have it any higher.  As it is, my baby girl 15 mon. now and is already on Vit D suppliment.  This block is so far the best I have tried, not so goopy with the nano particles and dries much faster.  Plus it says its uncented but it almost has a citris smell instead of a medicine smell.  And it stays on great. 

I would love to hear what others use, I know only one rule, it has to be Zinc or Titanium because with constant applying you can become almost immuned to the chemical base stuff.  This is kind of like a wearing a metal coat and I use it on all three of my girls.   

Let us know what you have been told, this is a great thread for all of us who are fairly new.

Wonderful websight.. Great research

Tricia

 Gosh, sorry for the late response.  I have not been on for a while. 

I have used for many years Hawaiian Tropic Kids Sunblock SPF 60+ With Travel Size.   I liked it because it stayed on a long time through sweat and swimming, was a reasonable price, and had a fragrance that did not bother my son.  This past fall I have changed (before I found this site) because I felt that there was something too "chemical" about the product.  It was just me, not any particular information. 

I switched to  to  Vanicream Sunscreen for Sensitive Skin, SPF 60 * (2006).   I like it.  It is very light and does do a good job of projection.   I think I was able to get it for about $14 for 4oz.   However, looking at this site, it looks like there may be better choices.  

I just tried their #1, Badger SPF 30 * (2007), and I liked it but my son did not.  It is fragranced with Lavendar, has some graininess to it, and he did not care for the smell or texture.  Also, it was expensive $16 for 4oz .  I spoke with a rep from their company about pricing and they do offer bulk discounts.  This was before my son tried it. 

We have a dermatology appt in a few weeks.  I will print off your response and ask our doctor to prescribe this.  It sounds like a good option.

I appreciate your response.  I originally posted on the general fourm and got no hits.  I, like you, want to know specifically what people are using (brand, best pricing location {i.e. web site, store, pharm...}, what SPF level, how often they are applying and where.... For instance, we live in Kansas, so in the winter we don't got out much and if we do go out we don't stay out long, the sunny side of our house is on the opposite side of where we spend most of our time, our windows are treated with max uv/glare reduction, my son's clothes are heavy and washed with the Rit UV dye.  Is it really necessary to apply all over or can we just apply on neck and above and hands?

Finally, I stumbled on this web site and was amazed that all these cosmetics and sunscreens were ranked and their ingredients discussed.  I agree some of the information needs to be corrected and updated.  I would be interested in what others think/know about the credibility of this information.

Debbie

Hi Debbie,

I have tried the Vani cream as well and I loved it.  My derm.. sent me home with 10-12 different kinds to try, all of which were perfect for Kalli's skin.  I settled on the Solabar solar shield because of the ease to purchase and spf factor, price, and scent.  All in all, I am pleased and still continuing to use it.  Kalli also has a derm appointment comming up and I am anxious to see any new products and or news about her skin.  March 6th in Boston MA.  I also use the Rit up dye and I love it.  I wash about every 10 washings Per the doc instead of the every 20 that it says to on the box. 

I too have protected windows and only do exposed skin in the house.  This seems to be working just fine.  I will keep you updated with any new info after our appointment, hope you do the same.

Thanks
Tricia

Wow,

I feel really clueless after reading all of what you all know about sunscreen!  This has really been helpful.  I've been thinking about stocking up for the spring/summer months and wondering which one is best.  Is there any over the counter sunscreens that contain zinc or titianium?  I've got to start looking at the ingredients better!  When and how were your children referred to the dermatologists?  Ryker, 17 mos, has never been.  Is that something we should do?  No one has ever mentioned that we should take him to a dermatologist and now I feel he needs to go.  Also, what is the Rit dye you are talking about, another thing I've never heard of! 

Thanks so much for the info.

Kelli

This is a topic that will be as hotly debated as any other on here!  Also, there will be as many differing opinions as there are dermatologists in the world!

First off, don't panic or send yourself on a guilt trip if you haven't taken your little one to a dermatologist.  here, opinions and recommendations vary.  Some say a child with albinism should be under constant care of a dermatologist, others say there is no need unless there is a problem, and that they should be seen about the time they hit puberty for a baseline skin check.  Me?  I'm 48, with OCA!, probably 1a, and didn't see one until I was almost 40! 

Sunscreen/sunblock.  Well, everyone has there own personal preference.  Obviously, there are certain chemicals to avoid, these have been well publicized over the years.  I can remember a time BEFORE sunblock, and the first one I ever used.  It was GOSS, didn't work in water particularly well, and according to my mom, expensive. Research does indicate that titanium dioxide is an ingredient to look for, and that many sunscreens/sunblocks do contain it.  However, there is some evidence it causes some problems in lab animals, but apparently this is irrevelant to its use as a sunblock.  FYI, titanium dioxide and zinc oxide ARE chiemicals, they just operate in a different manner than the others in sunblocks. 

Part of the ability of a sunblock to do it's job effectively is to use it properly.  Most people do not use nearly the recommended amount--read the bottle for instructions.  It will probably tell you about how many applications the bottle contains.  Also, many need to be appplied up to 30 minutes before sunexposure. 

I have never applied sunblock over my entire body just to stay in the house, or to cover most of my body up with layers of clothing in the winter.  I only apply where there is no clothes!  Sorry, maybe I am wrong here, but I personally could never afford that much sunblock!  I also am a very BAD albino--I do not use sunblock every single day just to walk the five minutes to the bus and wait the five minutes there.  I use it effectively when I am outdoors for any period--I can go to a waterpark from open to close and not get a lick of sunburn.  (One exception--the 4th of July!  I'm cursed on that day.  It doesn't matter the weather, how I dress, or if I am swimming in a vat of sunblock, I will get a sunburn to match the red stripes in the flag.  I have finally given up and stay home and do the cooking for everyone else!)

Sun protective clothing.  Other than a hat, I have never owned any.  Of course, never heard of them until a few years ago.  My  mom used to make me wear long sleeves alot and a Tshirt when I swam.  I know, they say you can burn through these, but I never did, thankfully!  According to the article I am attaching the link for, these aren't regulated, so it is hard to know whether they actually provide the protection they say.  Of course, this is one article, and from a couple of years ago.

Same article states the Sunguard rinse from RIT is not for use for those under two years of age.  Has this changed, has your derm. overridden this advice, is this stated on the packaging?

I know how important sun protection is and try to do what I can to avoid gettting sunburned, but I also try not to use sunblock any more than is necessary due to the chemical nature of it.  Since I can remember a time before sunblock, it would probably only be now that statistics on a lifetime of prolonged use will be coming out and what the effects are on a person.  I personally believe it is possible that overuse can be just as dangerous as underuse, as well as misuse!http://www.thegreenguide.com/doc/103/sunscreens

Here is the link I mentioned:

http://www.thegreenguide.com/doc/103/sunscreens

Again, an interesting topic.  My thoughts and opinions are in no way meant as insults to anyone elses.  There is just so much conflicting information out there.  Even doctors can't agree, although I think sometimes some of them just want to see us more often to fatten their wallets!

Joni

One more thing, and it is pretty well agreed upon...

Babies under the age of six months (all babies, not just those with albinism) should have no direct sun exposure and should not use xunblocks and sunscreens.

Joni

Oh Joni Oh Joni,

No one ever thinks that your opinions or information are insutling in any way.  I think that it is fantabulous that you provide all of us newbee's with invaluable information and I LOVE IT.

I am going to try to answer all of the comments.  First off for Ryker I agree Joni, don't panic....... Kalli has been going to the dermatologist since she was three months of age.  I was extreamly lucky I was put in contact with Dr. Catherine Nowak a specialist in rare genitic disorders at the National Birth Defect Center (NBDC) in Mass.  They are affiliated with The Genesiss Fund.  Seeing her at 3 months of age was a blessing in disguise, Dr Nowak not only is her genetisist but she oversee's all of Kallis appointments.  The NBDC  gets copies of every report and every Dr. appointment.  They call if I forgot to schedule with any doctor, or they did not get a report for a specific appointment.  They are amazing, She was able to give me a complete list of Doctors to pick from, her recommendations, when, where, who and what should be done and not done. 

 As many of us know there are not many if any doctors that know much about Albinism, ther derms know about skin the op knows about eyes but no one knows about all.  Well Dr Nowak knows enough about all to know who and where and when.

 At the dermatologist, they really have not done much of anything but do a base line check and mole check, mostly information on sunblock, sunexposure, protective clothing.  Joni, yes she did mention that RIT says not to use on children under age 2, however there really is not side effects know.  She highly recommended using it starting at age of 6 months.  Joni you are correct again, no child should have direct sun exposure before the age of six months any ways. 

The RIT wash in is a chemical you wash with the childs clothes and turns the material into a chemically base UPF of 30 -50.  My personal belief is, if I can so one little thing now that gives even a 2% chance of assistance in her skin when she is 60 years old, why not.  Isn't that a moms job, to do what ever necessary to help our kids to be the best they can be, well that is all I can do.

Kalli's dermatologist has asked to see her at 3mo.  6mo  then 15mo.  after that it will a yearly check.  At 3mo appointment, it was to get a base line of what her skin is like.  They took pics to put in her file to know down the line of any changes.  At six months we went over twenty or so different sunblocks talked about the least expensive sun clothes and checked her skin.  We go to see her again this week, also to see Dr. Nowak.  I will keep you updated on how it goes. 

From what I have been told, any precautions you take now as a young child will benefit them when they are older.  I don't put sunblock on in the house unless it is very sunny and we are in the sunny area, then it is only on the exposed skin.  I do put sunblock on all over her body when we leave the house.  As far as Titanium and Zinc being also a chemical, yes it is, now I can only share my opinions and what I have been told, so From what I know, Titanium and zinc have minimul absorbtion into the body and almost form a protective barrier over the skin not absorbed.  They do fantastic in the water and in longevity.  You do need to apply 10 to 20 min prior to sun exposure for the best results and they do take longer to dry.  The difference between this one and regular sun block is that over time with the absorbtion af the typical sun block, your body grows almost used to it and when the child hits the 20's because of the constant use, they no longer work properly. 

You can buy these special sun blocks over the counter, I find that they are cheaper when ordered through the pharmacy rather than on-line.  I just order them 3 or 4 at a time and they are about 10.50 or 11.00 per 4oz bottle.  I just keep one in the car, one in the bag and one where i get her dressed.  Neutrogina has one that is Ti and Zinc but I can never find it.  Earths Best organic has one out there, they sell it at walmart but it is 10 -12 dollars and I don't like the texture or smell.  I prefer to find the ones with Nanoparticles, they are not as sticky and go on with out rubbing the babies skin off.  Every one has a preference all I can do is mention mine. 

I would call a derm about Ryker and just have him checked out for a base line but I also personally feel that the earlier the better even just for information and knowledge.  I stay sane with information that is why I love you notes Joni. 

Mashawna found UPF material, for those who can sew.  I am going to give it a shot this month.  I have made jammies before but no clothes.  I was told to be causious with the UPF clothing lines.  There are two different things, there is material that is so tightly woven that it is UPF due to the weave, this is the good stuff.  There is also UPF clothing lines that just chemically treat their clothing and charge you a million dollers for it.  The RIT dye does that same thing for about $2- $4 per load of clothes.

OK I think I am done, hope this helps..... Remember this is just my opinions

Thanks Tricia

Hey Tricia,

I agree it is a mom's job to do everything they cna--whether your kid has albinism or not!  (On a sid enote, anyone want to borrow a thirteen year old girl?  Just to see what it is like?) 

I may try the RIT wash for myself.  Then again, I only use one kind of laundry detergent--Tide--because everything else makes me itchy.  We'll see.  I think the over 2 years recommendation may just be kind of a standard thing.  Like on almost all over the counter meds.  I had a couple of instances where my pediatrician had me give mone of my daughter's something before they were two, actually in those cases it was based on weight and my daughter qualified.  Same as with adult Tylenol and such.  It says age 12, but it really is based on weight.  I think six months for the RIT wash is probably reasonable, and in line with the labels of most sunscreens.

If my understanding is correct, most of the chemicals work by absorbing the energy of the sun's rays, whereas zinc and titanium deflect the rays.  A different process.  (I actually took four semesters of cheistry in college, but that was a LONG time ago!

I guess I would be most wary of the term sunblock, as nothing is 100% effective.  In fact, they are trying only to use the term sunscreen, as people get a false sense of security from the word sunblock, thnking they can stay out forever and not receive any harmful rays. 

I am fortunate to live in Wisconsin where the sun isn't nearly as potent as when I lived in southern California for ten years.  I am going to Florida to visit my middle daughter on the 21st--I need to stock up on sunblock!

One ounce is considered the amount needed for adequate full body protection.  So If you are going to the beach or the waterpark or Disney for an entire day, a four ounce bottle will be used up if you reapply every two hours.  I think I need to find a way to get rich!

Can you hook me up with the SPF fabric Mashawna found?  I do sew!  I could make myself some hats thwat I like,. instead of buying ugly ones all the time.  (Although I work at Kohl's and work in accessories sometimes--usually I am in men's underwear and dress shirts.  I unpacked a box of Vera Wang hats the other day and am actually going to buy one.  Considering most of her stuff is not to my taste, I can't believe she has some normal looking hats.) 

I am actually enjoying this discussion.  I have always had some issue with the use of sunscreens, just feeling like putting too much chemical on myself.  And then needing bugspray, too--mosquitoes LOVE me!! 

I know your kids are little, but there are lots of threads on here about self tanners and the like.  I have the same philosophy about them.  They are OK, but again they are chemicals.  While intermittent use is most likely OK, I don't think they are intended to be used full time year round.  And then you still need to apply sunscreen over them!  Ewww...

Do you get the picture that I don't normally wear makeup, either?!!!  I guess I am not overly ladylike, or so my daughters tell me!

It sounds like you hit on a really good person to help you coordinate all of Kalli's appointments.  It almost sounds like she is in some type of study if they are getting all of the reports.  Or at least she is being entered into some sort of statistical database about albinism.  This would be a good thing for all of us in the long run.  How fortunate you are!

I do have a good dermatologist, though.  He is in his late fifties.  He uses the word 'albino', but that is how it is taught.  He knew I was one and what the ramifications are.  He also has told me he has seen others with albinism, some who are having lesions removed every three months due to poor skin care and carelessness.  Many people, with and without albinism, develop some growths that need to be removed, even cancerous ones--usual basal cell carcinomas, as they age.  It is when it becomes excessive that there is evidence of a lack of proper skin care.  I look at it like this, you can still get lung cancer even if you never light a cigarette, so you can get skin cancer even if you never let the sun's rays hit your skin.  The sun elevates the chances, just like smoking does for lung cancer. 

As for what brand of sunscreen I use.  I've tried lots and continue to.  I won't use sprays as they don't work very well.  I do look for those containing zinc or titanium.  Other than that, I don't worry about the exact SPF, as long as it is over 30.  If I don't like the smell or feel, I won't buy it again.

I hope this thread continues and more people chime in.  It is indeed a topic that should be of immense interest to everyone, whether we agree on how often to see a dermatologist or not!

Joni 

 Hi Jonella,

Here is the website where you can find the sun-protective fabric.   I really like the fabric because its very light weight and breathable.  Lyra can wear long sleve and long pants in the summer w/o it getting all hot and sticky. At $10 per yard, its kind of expensive, but it ends up being A LOT cheaper than the already made sunprotective clothing.  

Sungrubbies 

I have more info on the other stuff in this discussion...I will try to get back on here later to write.

 Mashawna

 Also, Here is an articleI wrote about the fabric on Lyra's website last year and also a picture of one of the outfits my mom made.   I found the clothing a lot easier than slathering on half a bottle of sunscreen....which I HATE doing. :)

http://www.parentofachildwithalbinism.com/2007/08/11/sun-protective-clothing/ 

 Mashawna

Thanks Mashawna!

Lyra is sooo cute!!

A quick question about the fabric.  Is it sunprotective just because of the tight weave/high thread count, or is it chemically treated/have chemicals in the fibers?  From what I have been able to determine, the tightly woven/high thread count fabric is better, as the protection doesn't wash out and there are no chemicals involved.  Also, unless it is a real recent happening, the sun protective clothing is neither tested or regulated by any real agency, so they can pretty mcuh make any claim they want, and they may not be all that accurate. 

Just wondering--the fabric looks great to me--I like the pink and blue!

Joni

Thanks Joni.

Okay...here goes... 

As I've said in the past on this site, I am a researchaholic.  I encourage everyone to do their research when it comes to any of this stuff and don't assume that any given website, book, or even doctor is the one and only truth.  Compare the facts from the various sources and hopefully you can come up with an overall consenus.  

As far as the sunscreen goes...I find it a huge pain in the butt.  Unfortunately, there are going to be many many times when I absolutely have to use it, so I think it's important to understand it.  I found the website that Debbie mentioned very helpful.  I actually found that 2 of the brands I had been using in the past were some of the high risk brands....Huggies (which I loved), and most of the Neutrogena formulas. They covered A LOT of brands on that site, and it was interesting to see that price wasn't that big of a factor.  I was happy to find a few less expensive brands like Aveeno Baby and Hawaiian Tropic in the lower risk range.  I'm excited to try some of the new ones I discovered through my research on that site.  

As far as seeing a dermatologist, I tend to agree with Joni's view.  I think it is more a matter of personal preference.  We took Lyra when she was around 10 months old to see a "pediatric" dermatologist.  That doctor knew less about albinism than I did and was rather offensive overall.  She knew a lot about about skin care and sun protection, but didn't tell me anything I didn't already know.  

I've never gotten a prescription for sunscreen, however I might look into that since in many cases my insurance copay would be less than the full price of the sunscreen.

I really like the sunprotective clothing, mostly because I hate applying and reapplying sunscreen.  The big negative with the clothing is the price.  $30-$50 per clothing item is incredibly expensive.  I really love the Solumbra brand and anything from the Sungrubbies website.  In another thread topic on this forum, a mom mentioned an idea for parents to post items their kids had outgrown to resell, trade, or give away.  I would LOVE to do that with sunprotective clothing.

I've heard of others using and having success with the RIT UV wash, but I haven't tried it.  I keep saying I will, so maybe this year.

Finally...I want to add...my daughter Lyra has NEVER had a sunburn, so I guess so far everything I've been doing has worked.  In the end, you really just have to go with your own best judgement and personal opinion based on YOUR childs needs. 

Here is something I've been working on for a few months, but just hadn't put it "out there" for everyone yet.  I set this up because it is something I would have liked to have been able to find when I first had Lyra.  Here is a link to my Amazon store where I have compiled a TON of sunprotection products.  The sunscreens I chose were all in the low risk categories from the website in the first post of this discussion.

Sun Protection Products 

I will continue to add products over time. 
Please email me if you have any questions or if you have any suggestions for products to add.

Thanks,

Mashawna 

I need to make a correction to something I said in my last post.  When I said that the Aveeno Baby sunscreen was in the low risk category, I was referring to the Aveeno Baby Continuous Protection Sunblock Lotion (SPF 45).  You can see the review and rating info here: Skin Deep- Aveeno Baby SPF 45  That formula is actually no longer available.  Tonight I realized that the version I have been using is the SPF 55 version, which is in a slightly higher risk group. You can see the review and rating info here Skin Deep- Aveeno Baby SPF 55.

Mashawna 

I think it's useful to note that sun exposure is not "evil" or anything.  Excessive exposure is bad, yes, but sun exposure is the primary and most efficient way the body gets vitamin D, a well-known essential vitamin.  I think it's unfortunate there don't seem to be guidelines specifying a useful balance between exposure and protection, but I think it obviously is greater than zero (exposure).  5-10 minutes can produce a lot of vitamin D (especially in those with albinism, since melanin, through solar absorption, depresses production in the skin) and still not produce worrisome UV damage, in my experience.

 That said, we generally prefer to use sun protective clothing over sunscreen, to reduce the inconvenience and any worries about chemical exposure.