Coping Tips from an EPP Dad
My name is Kevin Gore, and my wife Cindy and I have a 3-year old son with EPP. He was diagnosed last year, so we are still learning about the disease and how to deal with it.
We have spoken to other EPP families, and the consensus is that it is virtually impossible to get younger children to take Lumitene. We have found that, for our 3-year old son, mixing Lumitene in with Spaghetti-Os has proven very effective. The color hides the fact that the Lumitene is in there, and he doesn’t mind the taste when mixed in.
Also, we have found a Compounding Pharmacy that was able to come up with a way of mixing beta-carotene with flavored syrup to make it easier for younger children to take. Our 3-year old son Grayson is now taking the recommended 2 capsules a day, whereas before, he could not or would not take the Lumitene capsules. He is unable to swallow them at his age, and the flavor of the beta-carotene mixed with most foods is not very palatable with few exceptions (i.e. Spaghetti-Os, above). The pharmacist looked up the manufacturer of the beta-carotene used in Lumitene, and confirmed that the manufacturer he is using is Hoffmann-LaRoche (Roche), and it is the same 10% beta-carotene beadlets used in Lumitene. This is the manufacturer that supplies it for Lumitene. He then mixes it into capsules with sugar, and as you take each dose, it is mixed into a flavored syrup type mixture, which dissolves the beadlets. Our son prefers a Tutti-Frutti flavor, but the pharmacist can also use other flavors such as bubblegum. Even better, since he makes the capsules at the pharmacy, and uses prescription-grade beta-carotene, he was able to submit it to my insurance company and get it approved, whereas Lumitene could not be approved. I talked to the pharmacist and told him he may get requests for mail-order as people find out about this. He said that would be fine. If you are interested in looking into this – here is the information:
Matthew Buderer, R.Ph., FIACP
Buderer Drug Co.
26611 N. Dixie Highway, Suite 119
Perrysburg, OH 43551
Phone: (415) 873-2800 or (800) 259-6662
FAX: (419) 873-0494.
Also, we had our car tinted with a yellow automotive film from Llumar Window Films. The Yellow Deco is great for the wavelengths that affect EPP people. Light transmission for 470 nm on down [to 400 nm] is virtually nothing. This is an adhesive film that can be used in automobiles. Our car came with factory tinted windows already, so the yellow isn’t terribly obnoxious (like driving around with blue-blocker sunglasses on), but putting this on your windows alone might be annoying. The yellow tint film is a dyed film, and is subject to fading. With the “protection” of the existing factory tint, it is expected to last around 5 years or so. I also asked about first installing a normal dark tint, and then the yellow, and was told that tint-on-tint applications are a little more tricky, but not impossible.
The information on tints was obtained from:
Llumar Window Films
CPF Films Inc.
P.O. Box 5068
Martinsville, VA 24112
Phone: (276) 627-3000; FAX: (276) 627 3032
Attn: Technical Services Group
Hopefully this information will benefit some other people out there as it did us. As I find out more about EPP, I am ambitiously looking for ways for us to deal with it. As I figure out more stuff, I will continue to post the information.
Kevin Gore
k.r.gore@buckeye-express.com
A Generous Offer from Coolibar
We have been contacted by Coolibar, a Minnesota based manufacturer of sun protective clothing, with an offer to donate UV protective swim-wear for children with EPP. These are infant, toddler, child and teen sizes, available in long-sleeve swim shirts or sets that include shorts, shirt and a hat. These are brand new items in the original packaging with UPF Rating tags on each garment. These are items that for one reason or another (e.g. ran out of one size and have to pull the remaining line from sale) Coolibar is unable to sell through normal channels.
The first 20 EPPREF members to e-mail Alan Higley at ahigley@coolibar.com will be sent one of the available items (please indicate boy or girl and approximate size information). For more information about sizing, sun protective clothing and sunAWARE sun protection tips, visit their website, www.coolibar.com.
As we have previously pointed out in notices about other brands of sun-protective clothing, these clothes are made for people with sunburn-UV sensitivity, but they also offer some protection against higher wavelengths of light, such as the ones causing EPP.
We are very grateful to Coolibar for their kind offer.
More Tips and Offers
A lady with EPP has several items of Solumbra clothing – pants, shirts, jacket, hat – in women’s large size which she would like to pass on to another EPP lady. Contact her at abhurst@aol.com if you are interested.
An EPP Mom tells us that her daughter found that Solbar 50 sunscreen and sun-protective clothing from Orvis Outfitters gave her good protection during the summer, even while hiking in Colorado at 12,000 feet!
Another EPP Mom wrote to tell us that the sunscreen “Ozone 70” by Hawaiian Tropic worked well for daughter. It can be purchased at Walmart, or from the company’s website, www.hawaiiantropic.com.
Pen-Pal Requests
The mother of a 6-year old boy with EPP would like to correspond with other EPP families who have a child close to her boy’s age – her e-mail address is Lafeber6@charter.net,
A lady with EPP, whose kids don’t have it, would love to correspond with other EPP people, especially moms of EPP kids, as she can give tips from personal experience with EPP. She also served in the Army for 20 years in spite of EPP, so she can certainly give lots of tips on living with EPP. You can reach her at chancit2003@yahoo.com.
Correct Protoporphyrin Tests
As we have said before, it is important for EPP people to keep an eye on their blood protoporphyrin levels, by having them tested on the average once a year, or more often, if your doctor thinks it is needed. The important thing is to get the proper test done. Plasma porphyrin levels, or “zinc protoporphyrin” levels are not appropriate for EPP. Red blood cell (RBC - scientific term for them is erythrocyte) porphyrin levels need to be measured. Mayo Medical Labs does the tests – your doctor should call 800-533-1710 to find out how to ship them the bloods. The tests that they do are: 1) Porphyrins, Fractionation, RBC (unit code 8735) and 2) Porphyrins, Total, RBC (unit code 8536). Both tests will measure protoporphyrin. The porphyrin fractionation test measures all the different kinds of porphyrins present in the red blood cells in addition to protoporphyrin, but usually there are none other that protoporphyrin present in the cells. The total porphyrin test just measures all present in a lump sum – as there is usually only protoporphyrin present, this figure represents the amount of protoporphyrin present.
In addition to Mayo Labs, Quest Labs will draw blood and ship it to Mayo Labs for analysis. Your doctor can call 800-377-8448 to find the nearest Quest Lab in your location, and get directions on how to collect the blood. Last time I called them, they only collected blood for the Mayo “Porphyrins, Total, RBC” test - their number for that test is SO 4857.
Measuring the Light that Triggers EPP
An EPP guy asked if there was some way of measuring the amount of light rays that triggers EPP in daytime sun on any given day. I checked with an optical instrument company, and they suggested using an ordinary photographic light meter fitted with a blue photographic filter that transmits light from 360 to 480 nanometers, the triggering wavelengths for EPP reactions.
Such a filter is the Kodak Wratten filter, number 47, Blue Tricolor, 3 inches square, Kodak catalogue number 1495787. This filter is made of gelatin, so it is a good idea to put it between two pieces of glass to preserve it – window glass transmits light from about 340 nanometers and above, so the important wavelengths will get through it.
So, that’s the news
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