This list of products has been proven helpful for many EB patients.
If you want to share a special product or tip, or link to a supplier, please email us

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Are you in need of supplies? NaNa Grams is here for you.

Send physical address and any information on what the family needs and NaNa Grams will get it in the mail as soon as possible.  Usually if information is received before 3:00pm eastern time the items can be sent the same day. 
Contact: Cindy Guthrie
Contact email: cwg1@aol.com
Telephone: 888-503-6066

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	For Babies/Toddlers
	Because of their cloth-like look and feel, Huggies Supremes or Huggies Ultratrims diapers seem to work best for most EB babies. Cloth diapers seem to be the only other alternative. You may also need to cut the elastic out of the legs. Another parent of an EB Simplex child suggested the 'White Cloud' brand available at Wal Mart. This same parent stated that she buys jars and jars of Vaseline that she uses on his bottom as well as his stomach area to prevent blisters.  When her child first started walking, she would also put Vaseline on the top of his foot and his ankles before she put his socks on.  This would prevent blisters from forming.
	How to make Homemade wipes, courtesy of Delicia, mom to Ian, RDEB 1/8 - 1/4 cup baby bath...( baby magic ) 1/8 - 1/4 cup baby oil... ( Johnson's ) 1 1/4 cups water... Cut roll of paper towel, Bounty works best, cut it in half remove the center tube ( the card board) Mix Ingredients in container and place paper towel in, place lid on the container and turn up side down. Pull wipes from the center. We use  a rubber maid or Tupperware container for it and it works great. DO NOT USE COLORED TOWELS!!!!!!!   To cut the roll in half is a task but we use a bread knife..... Good luck they smell great and last longer than the ones you buy.
	To help babies drink, Liane, the mom of a young EB baby, found the "Soft Cup Feeder" By Medela very helpful. There is no sucking involved.... It's a very soft silicone spoon like scoop that attaches onto any size bottle. You squeeze the spoon and it fills with the liquid and can literally be poured into the child's mouth. Just like drinking from a cup.
	To alleviate friction caused by the nipples of the bottles, many parents have found KY Jelly and 'surgilube' particularly helpful. For those that try to feed a baby with many sores in his/her mouth, lidocaine was of great help as well, as it numbs the mouth.
	For bottle-feeding, EB babies do best with a Haberman Feeder. It is made by Medela. The top part is made with a very soft plastic and a disc in between the nipple part and the bottle ensure an easy suck and flow. Lorraine, the mom of an RDEB child, suggests that for those that cannot afford to keep buying those expensive Heberman, she has found that you can use the NUK nipples with the disc part still in the ring and it still primes just like a Heberman, but is so affordable. The shape is also really good orthopedically for their little mouths too. She does cut a little criss cross slot in the tip. You do have to have the ring and disc part from an old Heberman, but if you are like her and me (LOL), we have lots of discs and rings but no good nipples left. An alternative is a preemie nipple. Visit Medela @ BabyCenter
	An easy way to protect EB babies' elbows and knees is by using tennis wrist 'towels', the long ones. They are made of thick soft towel material and they work well.
	A parent of a simplex-moderate child gives us a help tip for infants and children's clothing for children with EB: turn the garments inside-out. This keeps the seams from being against the child's skin. Another parent suggested cutting all the tags out.
	EB babies do best if bathed in soft inflatable tubs to prevent their little legs and feet from bumping to the side of the tub and cause blisters or wounds. One good tub is made my Leachco. The link will take you to the product itself. Check their website for lots more soft stuff for baby!
	Scandishake calorie-rich shake mix is designed to assist patients who need to maintain or gain weight. You can also add 'heavy cream' to a bottle to increase calories, or butter to baby food. EB kids tend to have a problem in the weight dept., and these two products add quite a few calories.
	The Grandma of an RDEB child suggested to pad things with eggcrate foam and cover with silk like material. WALMART sewing dept has bargain bins usually $1 or $2 per yard. Sewing machines from elderly relatives, pennysaver mag, yard sales, goodwill ect.
	If your child has a feeding tube in the nose, ask your nurse or doctor to tie it with a ribbon or string instead of using tape.
	Very soft shoes for babies and toddlers are available at the http://preschoolians.com/ website.
	Soft clothes are also essential in every EBer wardrobe. Some of these can be found at Hanna Andersson, Kings and Sages, The Rag Lady, Baby Lane & Amber Rose Fleecewear. Other good places for Baby items are: BabyBazaar.com for unique products. Babies Online.com Here you can get a web page for your baby! WebClothes.com A great site! CWDkids.com dresses kids like kids!
	For All Patients
	Knee pads can be purchased at Right Start or KneeTogs (888)377-4511. Tammy, the mom of 2 JEB children, suggests that if you can't find knee pads you can wrap w/ a gel pad on the knee for protection. They come in 8x8 or 4x4 sized sheets and you can cut them. They also have a website http://www.silipos.com and there you can purchase #15235 XL Heel/Elbow slipover for the knees, elbow or ankles. Alternatively, knees can be padded by using extra kerlix gauze.
	Brenda, the mom of a RDEB child, found where you can find the blue goo (nursing care protective ointment) that works so well with scar tissue at Egde Park surgical in Ohio the number is 1-800-321-0591. The cost for her was 6.50 shipping and there was a special on the cream: it cost 4.26, normally it is 5.32. the item number for the cream is 448200.
	For potty trained little boys what seems to work best are 'boxer briefs' underwear. They have a long leg that covers until mid-thigh.
	For older children and adults that cannot be potty trained, here's the link to a couple of websites that a patient suggested: http://www.lovingcomfort.com/ http://www.viproducts.com
	Sheepskins shoes or soft shoes are essentials in every EBer wardrobe. Some of these can be found at Ambulatory Footwear, Golden Fleece, Frenchcreek, Acorn, & Frumps. Many Sheepskin Products can be found at the U.S. Sheepskin website
	EB patients need vitamins and supplements to make sure they get the necessary nutrients. Nicky, for example, gets a multivitamin, iron and protein supplements each day. Some of these can be found at: ImmuneSupport.com has nutritional supplements and they claim to be the 'chronic illness' experts. Vitamin Lab Web Vitamins eVitamins
	Common challenges due to Hand Limitations: Due to contractures and mitting of the hands many patients with EB began having difficulty grasping and or retrieving objects (i.e. door knobs, opening lids from bottles and jars, retrieving coins from vendor machines, etc.) Listed below are a few tips which some adults have found quiet useful: The following website has many rehab ideas. For the adult who desires their independence yet require assistance. You'll find many helpful products here. http://www.rehabmart.com/contractures.asp Helpful hints: Difficulty retracting coins from a vendor machine? Insert eraser side of pencil into coin return slot to retrieve change. Difficulty grasping rounded door knobs? Many suggest the replacement with lever style latches which are much easier to maneuver.
	Personal care Hair coloring tips:  Due to the involvement of the skin the scalp also is affected in many patients with EB. This can create difficulty when trying to chemically treat the hair ( i.e. perms, hair coloring, highlighting). Some patients can successfully use hair coloring which does not contain ammonia and low peroxide. One popular product is Natural Instincts temporary hair coloring. Remember to always check first with your own physician before using any products. Natural Instincts: http://www.clairol.com/brand/naturalinstincts/about.jsp
	Bandage hint To secure bandage pad without the use of adhesive tape or when gauze can not be purchased. Cut the top portion of a long tubular (preferably white) sock. You now have a soft tubular cuff to secure bandage or protect knee/elbow or wrist areas.
	Desitin Creamy Ointment The benefit of this product is commonly known for treating diaper rash. Many patients with EB however have discovered when applied to wound sites promotes more rapid healing as well as aids at decreasing bacterial infections. Some patients have experienced a decline of these infections by as much as 25% or more.
	Mouth Blisters For those who suffer with oral problems (mouth and esophagus blisters or trauma) your physician can write a prescription for magic mouthwash. This product will temporarily numb the area. Contains Maalox, Benadryl, Lidocaine.
	Cooking Ideas 1. A natural meat tenderizer is vinegar. Place on your choice of meat for several hours before cooking. 2. Substitute veal for ground beef it's much easier to swallow. COOKBOOK Easy-to-Swallow, Easy-to-Chew Cookbook: Over 150 Tasty and Nutritious Recipes for People Who Have Difficulty Swallowing [E-Book] http://www.wiley.ca/WileyCDA/WileyTitle/productCd-0471283363.html
	EB patients always need comfortable padding. Check out Spenco and Silipos!
	EB patients need the aid of potions and lotions to help the skin regenerate properly. Some of these can be found at: Bath-and-Body.com PureaSkin Lotion & Cream Medically proven to correct even severely dry, wrinkled skin
	EB patients always need comfortable shoes... these are hard to find because seldomly these shoes with a wide sole and soft can be found at a regular shoe store. Pedors is making shoes for EB kids called Weebors, and for each sale, $1 is donated to the EBMRF. Please Note: You will need to ask for this line as it's not advertised. More EB friendly shoes and slippers can be found here: slipperfactory.com buskins.com footwearbyfootskins.com markellshoe.com Robeez Footwear Another tip is shoes, for those who have mild EB, such as DDEB or simplex. Nike Pico's work for alot of toddlers, with no bandages needed. They are toddler shoes and many a Mom has told me their kids feet do not blister when wearing these. They can be found at Sears and most Nike outlet stores carry them. Another shoe that works great for mild-moderate EB feet, is soft leather moccasins. A great place to order these from is http://www.pueblosouthwest.com. They have many styles to choose from and carry infant through adult sizes. Their prices are way below what leather stores and such, normally want for these mocs. For older children, people can try New Balance sneakers/tennis shoes.  Quite a few Mom's have told me their kids wear these with no bandages and are fine. For infants/toddlers with severe feet problems - there is pattern you can get from Paula Slavin at Molnlycke health care. It is made out of the thick foam mepilex and provides a bootie for children who need the whole foot/ankle area bandaged, and it provides alot of padding for the foot.  People can e-mail Paula at: paula.slavin@molnlycke.com she can also help people get mepilex/mepitel products, if need be.
	EB patients have found Emu Oil very useful in taking out the redness and scars. Emu Oil info and product can be found at the following websites: www.emusonline.com www.gdkemuoil.com  GDK gives a discount to those whom  have EB, or EB kids.  You need to know that when calling to order, you should identify yourself (or your child) has EB, and you will then be given the  discount.  www.aea-emu.org (American Emu Association) www.emu-oil.com (EMU OIL INSTITUTE) www.gentleridge.com www.bluestuff.com/ (Thank you Cristina for this link!) 7kidsfarm.com
	This suggestion came from a mom with an RDEB son. Contact her here: seelly@aol.com My son's belly button is extremely susceptible to blistering from diapers, pants, swinging on the swing on his tummy, etc. I purchase white 100% cotton top quality tee-shirt fabric at the fabric store. I wash & bleach it then cut it into bands that go around his waist.  For example, he's 2 so I cut the fabric to be 10" tall by 22" wide then fold in half for a nice soft belly padding that is 5" by 22". I keep it secured with an ace bandage. I use the 4" ace bandages, cut them to a length that goes around my son's waist, I sew the toothy part of velcro on the one end & it will secure itself to the ace bandage. I use these over & over again for months. I just wash with bleach and laundry soap in the washer. The tee-shirt fabric also works nicely for other body parts if you don't have any kerlix gauze on hand.
	This suggestion came from a Junctional mom: I found a cream called silvadine to be extremely helpful for healing and pain. It is a cream used for severe burn patients and is a must for soothing pain. I also found that coating nonstick pads with this cream and putting them on entire butt area helped with pain and irritation.  Please feel free to contact me if you need anything at all. My email is jodypierce@peaknet.net
	There is a sterile,  all natural, anti bacterial, hemostatic gauze currently used for tooth extractions (dental), cervical biopsy (Ob/Gyn) and acute trauma (Emerg Medical Service & Emerg Room) applications. It's for topical use only and easy to apply in three sizes (2x2, 2x4 & 4x4). Contact with moisture (water, blood, body fluid) turns the gauze into a glucose and saline gel. The gel fills open and bleeding vessels and stops bleeding. It dries into a hard coating that begins to dissolve when it becomes wet such as pouring water on it or soaking in a bath tub. So it doesn't have to be removed which I thought may benefit people with EB and their wounds or may provide protection to areas that are likely to be aggravated likes elbows, knees, fingers. Please see www.actcel.com for more info and feel free to contact me at 818-865-0951 with questions! I'll make sure anyone interested in trying our product (ActCel) will get free samples.  I hope this helps kids and adults! Jon Tamiyasu
	This suggestion came from a RDEB mom: This is a form you can fill out to get FREE eye gel, if you qualify from one of the eye gel manufactures. We use around 40 to 50 tubes of eye gel a month, to keep Samantha from getting cornea abrasions due to her eye lids not closing all the way at night time now. So in doing my homework, I wanted to share with all that I thought would benefit from this information. This is a huge expense for many, so please take advantage of this wonderful benefit this company is offering. Click Here to print out the form
	Medical Supplies
	Ross products (Pediasure and Ensure) Vistapharm (product: Epulor) Johnson & Johnson Medical Division of Ethicon, Inc. , Arlington, Texas 76004-3130, USA Products: Sof Kling, NuGel, Adaptic, and Topper dressing sponges The Kendall Company 15 Hampshire Street , Mansfield, Massachusetts 02048 Phone: 1-800-962-9888 Products: Kerlix, Conform, and Telfa Molnlycke Health Care Molnlycke's wound care products are under the umbrella brand name of Tendra. Tendra stands for Gentle Care(TM) with a holistic and caring approach to the patient. Visit www.tendra.com 826 Newtown-Yardley Road Suite 300, Newtown, PA 18940 contact is :  Paula at paula.slavin@molnlycke.com @ 1-800-882-4582 X2089 Products: Mepitel, Mepilex, Mepilex Lite and Mepilex Border, and new product Mepilex Transfer. Biocore 1605 SW 41st Street, Topeka, KS 66609 1-888-Collagen (toll free) 1-785-267-4800 1-888-689-5655 (Customer Service Direct) Products: SkinTemp and Medifill Smith & Nephew To find a distributor in your area: Customer Care Department at 1-800-876-1261 11775 Starkey Road PO Box 1970, Largo, FL 33779-1970 Products: ExuDry wound dressings, FlexiGel Sheets (like Vigilion) and AlgiSite M (like Sorbsan) Bard Medical Division C. R. Bard, Inc. 8195 Industrial Blvd. Covington, Georgia 30014 USA 800 526-4455 Products: Vigilon Dow Hickam Pharmaceuticals is now BERTEK Pharmaceuticals A division of Mylan Pharmeceuticals, 1030 Century Building, 130 Seventh Street, Pittsburgh, PA 15222 Products: Sorbsan calcium alginate wound dressing Coloplast Skin Care Products Eucerin  Products: Aquaphor Pfizer Products: Zyrtec, Benedryl, Desitin, Neosporin Western Medical Ltd. Product: Surgilast For More information regarding Medical Supplies, please visit the following pages at Cristina's EB Website: -->> Gauze and Bandages -->> Ointments and Creams
	Where to Buy Medical Supplies
	http://www.surgicalsupplyservice.com/ http://directmedicalinc.com/ http://www.firstaidproductsonline.com

More Products and Services

www.melaleuca.com
Has products made with natural oil that came from an Australian paper-barked tree.

 

   

 

 

  
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