If you've already filled out this form and you simply need to EDIT some of the information, please send me an email with the subject: EDIT INFO ON PHP page and on the body of the message include the first name of the patient and form of EB, with the information do edit, such as:
Nicholas Z., RDEB
Itching Products: Benadryl - please chance to Allegra

Thank you!

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Filling out form: Parent/Caregiver

Email: ebmommie@snet.net

Country: USA

Patient name/age: Jonathan G. 3 years old

Form of EB: Jonathan has Recessive Dystrophic EB doctors believe it to be non Hallopeau Siemens. Jonathan has a moderate involvement mostly on his hands, elbows, knees, feet and back.

Used for Itching: Have tried Claritin in the past with little success. Currently we are using:
Atarax (generic version)1 to 2 tsp. 10 MG at bedtime
Doxepin 3 cc 10MG at bedtime
Promethazine 1 tsp. 6.25 MG at bedtime
all can be used during the daytime but may cause drowsiness I try to use distraction as much as possible.

Laxatives used: When Jonathan was an infant prune juice worked well. Have tried Lactulose with some good results for a while currently using Miralax which works very well for him I give him 2 tsp. but have to alter the doses at times.

Esophagus/Mouth: Jonathan currently has an oral aversions so he will not let me brush his teeth or do any oral care. We have been taking him to a pediatric dentist every 3 months and he has a speech therapist who is working on the aversion

Misc. Medicines used: We give Jonathan Prilosec 1 tsp. 2 times a day 2 MG for reflux

Important Hints: Keeping areas moist helps with healing and keeping the house cool seems to help with itching.

Hints for babies (diaper): As a baby and still we use Huggies Supremes. For cleaning I use wipes making sure they are pretty moist. For times when the stool is dried on I put baby oil on the wipes to help loosen the stool. Then put a heavy coat of Desitin over bottom, front and hips to help with any wounds and from friction.

Misc Hints for babies: Did not bath Jonathan often as a baby sponged bathed mostly until he could sit really well in tub' then we used a blow up tub you put in the regular tub and surrounded him with towels. I have always given Jonathan a bath with all bandages on then taken them off afterwards.

Hints for babies (feeding): As a baby Jonathan was on similac with iron we used a Haberman feeder bottle, at 4 months started on baby cereals did better with Rice others caused constipation. He later started on regular baby foods. At one years old Jonathan refused everything but his bottle so we started him on pediasure. He has not eaten any solid foods since one years old.

What patient eats now: At 2 years old we had to put in a G-tube for Jonathan to get proper nutrition. He gets in his Gtube 3 cans of Kindercal (250 cals) and 1 can Nutrifocus (350c cals) the only thing he takes by mouth is Water from a cup.

Misc Supplies used:
Nursing care ointment by smith and nephew (ref # 448200) used on scared areas, red areas to used for moisture.
Emu oil used for open areas, red areas, blisters and scars.
Desitin used for red raw open oozy wounds

Products used for Wound care:
Flexicon elastic gauze bandage 2" (ref # 2220) used to wrap arms and feet
1" (ref # 2210) used to wrap hands
Kendall versilon all purpose sponge (ref # 8044)
4x4's used for padding elbows, feet, and knees
Tubifast cotton tubular bandage sizes go by a color code. Green size (ref # 2436) used for arms, feet and hands. Blue size (ref # 2438) used for legs Brown size (ref# 2442) used for chest
Mepitel 4x8 (ref # 291010) used on blisters and red areas
Mepilex 4x8 (ref # 2942904) used on raw open and oozy wounds
Coban 3" 3m (ref # 1583) used for upper thighs
I make my own Vaseline gauze with the tubifast, I cut approx. size I need and coat in Vaseline. I use this for all wounds especially hands, elbows, knees and feet.

Wrapping Instructions:
I start with putting Mepitel on all red areas or newly popped blister then I apply Nursing care ointment and emu oil, on bad wounds that are oozy I use Mepilex coated with Desitin. I follow that by applying my Vaseline gauze over entire wound, then I start wrapping with 2" Flexicon starting at the wrist using a 4x4 versilon gauze sponge on elbow and wrapping up to the top of arm. I then put on the green colored tubifast to hold bandages in place.
Hands: First I apply Nursing care ointment and emu oil I then take my home made Vaseline gauze cutting a hole for the thumb. Slide it over the hand making sure thumb is through the hole. Then I start wrapping with 1" Flexicon starting at wrist to secure it then going around thumb 2 times then around each finger 2 times (I leave finger tips out) making sure to pull each finger back not forward with 1" Flexicon, I then go in-between each finger from top of hand to palm this takes 2 1" Flexicon bandages once I have done that I take a 2" Flexicon going around the hand to secure the 1" also making sure the palm is well bandaged and padded.
Chest and Back: I first put on Mepitel on any red areas or blister (Mepilex coated with Desitin for bad wounds), then put on nursing care ointment and emu oil after that I cut 1 small piece of the brown colored tubifast cut it so it fits from under the arm pits to below the belly button tucking them both into the diaper and cutting a hole for his Gtube to come out. After that I cut another brown tubifast so it fits from the neck down to past the belly button, I cut out holes in the sides for his arms making look like a tank top t-shirt also cutting a hole so I can get to the Gtube. The Tubifast hole on any Mepitel or Mepilex I use.
Feet: I first apply Mepitel to any wounds (Mepilex coated with Desitin to bad wounds) then apply nursing care ointment and emu oil to all wounds I then put on my own made Vaseline gauze around entire foot my Vaseline gauze is tubular so it goes on like a sock. I then take 1 versilon 4x4 gauze sponge to the top of foot and one to the heel and back of leg. I then use a 2" Flexicon bandage and wrap ankle and entire foot. I take a second 2" Flexicon started at the back of leg coming up over the toes then up to ankle and around ankle and foot.
Legs: I first start by apply Mepitel to all wounds (Mepilex coated with Desitin to bad wounds) then coat with nursing care ointment and emu oil then I cut a blue colored tubifast to fit from ankle to hip. then I wrap coban 3" around thigh to secure the tubifast. I then cut another piece of blue colored tubifast to go from toes to up a little over knee I put that on with two 4x4 versilon sponges on the knee. the tubifast secures the 4x4's. The tubifast secures bandages on the feet. I then put on a regular sock.

Does the Insurance pay for supplies: Yes

Name of your insurance company: Anthem Blue Cross Blue Shield of CT

Who pays for supplies: For things not covered by insurance Title 5 Children with special health care needs covers most other things.

Do you know of local Doctors familiar with EB you could recent: Yes ebmommie@snet.net

City and State of where these Drs are: New Britain, CT and Hartford, CT USA

Comments: Give your child alot of love, don't be afraid to touch your baby you most likely with cause a blister or torn skin in your child's life don't let it get you down you are doing your best. Let your child be themselves and let them set there own limits don't force limits.

Filling out form: Parent/Caregiver

Email: lanaesq@msn.com

Country: USA

Patients names: Corey C. 9, Alex C. 8 and Brandi C. 7

Form of EB: Recessive Dystrophic - Hallopeau Siemens
Corey and Alex are very severe while Brandi is not as involved.  See clinical pictures.

Used for Itching: Atarax at prescribed amount and increased dosage of 10cc during bandage change.  Seems to help with, but does not eliminate, itching.

Laxatives used: Miralax at less (about 1/2) than prescribed amount due to stools becoming "too soft"

Esophagus/Mouth: Have used Carafate in the past, but with no success. Chlorhexidine Gluconate, oral rinse used twice a day.  Teeth are wiped with cotton applicator to remove buildup. Dental surgery has been required to fill cavities (Corey) and removed decayed baby teeth (Alex)

Misc. Medicines used: Lortab for pain, DuoCal for extra calories, Scandi Shakes for nutrition, Pediasure for liquid nutritional supplement, LacriLube for lubrication of eyes (and periodically the nose to prevent nose bleed due to dryness)

Important Hints: Baby Oil has been among the best hints we have been given.  It helps in removing scabs from ears and sticky bandages from wounds.  The kids ask for it.

What patient eats now: Primarily Pediasure, although all three will eat just about anything else that is not too difficult to chew or too spicy.
Favorite foods include: Lots of milkshakes (with supplements)and ice cream, Cottage cheese, Cheese (cream and cheddar), Apples dipped in caramel, Cheetoes and other chips.
Foods liked but difficult to swallow: Nuts, Watermelon, Macaroni and Cheese, Meat

Misc Supplies used:
Cosmetic sponges to apply topical medications (very soft and can be tossed to eliminate spread of infection)
Disposable 2oz cups used for medications and lotion to avoid contamination of product (scooped out with tongue depressor which is then tossed)
Vaseline and Neosporin blended by pharmacy until very fluffy (heat slightly with blow dryer for even easier application).  Pharmacist has recently begun to add color "just for fun."
Blow dryer used to dry and warm kids after bath
Baby Oil to remove scabs and sticky bandages

Products used for Wound care:
Underpads for changing dressing
Pull-ups for both lack of bowel movement control and as disposable underwear that can be cut to remove.
Kendall Conform, 3"  for wrapping arms
Kendall Conform, 4"  for wrapping legs and torso
Webril  used over Vaseline gauze and under conform
Kerlix  used as padding on legs and torso between conform and SOF Kling (currently not using do to extreme heat of summer)
SOF Kling, 4"  used as final layer of gauze over Kerlix
Elastomull, 1" used to wrap hands
Vaseline Gauze, 6"  first layer used on all wounds and areas prone to breakdown.
Vaseline Gauze, 3"  "   "
Vaseline Gauze, 1"  used on Corey's hands
Tubegauze, Size 6  final dressing layer for legs and arms to hold dressings in place
Tubegauze, Size 11  final dressing layer for torso to hold dressings in place.
Mepitel, 4x8  used on severe wounds as needed
Mepilex, 6x6  used on severe wounds as needed
Coban, 2"  used to secure gauze on feet and upper arms
Coban, 3"  "       "
Coban, 4"  used to secure gauze on thighs and torso
Cowrap, 2"  used to secure gauze on wrists/hands

Wrapping Instructions:
Following are instructions sent with the kids when they attended Camp Wonder:
Dressing to be changed a minimum of QOD with the following procedures:
Pain Medications:
        Brandi:  rarely needed.  Children&#8217;s Motrin if requested by her.
        Alex:  Children&#8217;s Motrin and Atarax ½ hour prior to dressing change
        Corey: Lortab and Atarax ½ hour prior to dressing change
Handling:  Lift by placing one arm/palm under back of legs (above knee) and the other on the upper back.  The idea is for them to lay in your arms like a chair to avoid friction.  The skin can tolerate pressure, but not friction.  NEVER grab under or by the arms.  In fact, avoid use of your fingers in lifting as they are often the culprits that cause blisters.
Removal of Dressings:  Remove old dressing using scissors and/or unwrapping gauze.  Be careful not to pull any areas adhered to skin (Alex and Corey will be very anxious about this until they trust that you will not).  If dressing is adhered, gently cut around area and generously apply baby oil to area.  Let soak for awhile and then attempt to remove.  If still stuck, apply more oil and then soak in bath.  If still stuck, cut away as much as possible and leave stuck portion on skin.
Bath:  Soak in tub of mild Dakins solution (2 tbsp. bleach : 1 gallon water) for 20 minutes.  Pour water over any area not submerged in water.  Use fresh water for hair, face and final rinse.  Gently lay towel over shoulders, but DO NOT rub dry.  Pat gently with towel and use blow dryer to dry all areas (keep dryer moving or it will burn!)
Note:  do not leave them sitting on towel for very long.  Terry sticks to open wounds and is very difficult to remove.  Sit them on pads provided or put Vaseline gauze under their bottoms.  Give the children warning before lifting from tub and table, so that they can get &#8220;unstuck.&#8221;
Wound Care:
1. Using fine scissors gently trim dry, flaky, dead skin that would irritate or poke under new bandages.
1. Using fine scissors and/or needle, puncture any blisters in a way that will allow the blister to drain.  The children know where there blisters are and can tell you which need to be popped.
1. Beginning with upper body, generously apply premixed Vaseline and Neosporin ointment to all open areas and areas where gauze or pull up may adhere to skin.  (Put ointment into plastic cups with wooden tongue depressor and for the child&#8217;s comfort and easy application, warm ointment with hair dryer.  Use soft make-up sponge to apply on skin.)
Dressing Order:
1. Apply a layer of Vaseline gauze to all open areas (including Corey&#8217;s fingers).
2. Follow with Webril, Conform, Kerlix and Sof-Kling.
  a. Arms:  Use Webril from wrist to armpit.  Put extra on elbows while at same time allowing movement.  Next, use 3&#8221; gauze starting at wrist working up to underarm.  Add precut padding (with sheet of 6&#8221; Vaseline gauze over Webril), Webril side up, to underarm and secure with 3&#8221; gauze around upper arm (middle of pad should lay as smooth as possible in the armpit).  Work back down to wrist (will secure after hands are wrapped).
  b. Brandi and Alex&#8217;s Hands:  Do not require Vaseline gauze unless they have a fresh wound.  Use 1&#8221; gauze.  Start around wrist and then proceed to thumb.  Wrap several times around and then go around wrist again.  Move to next finger and so on until each finger is wrapped.  Finish by wrapping between each finger, wrapping around wrist in-between.  Secure both arm and hand gauze with Cowrap around wrist.
  c. Corey&#8217;s Hands:  Wrap a strip of 1&#8221; Vaseline gauze over tip of finger/thumb.  Use additional piece (or two) to wrap around finger/thumb.  Use additional layers as needed to cover palm and back of hand.  Next, place layers of precut Webril over tips.  Finish with 1&#8221; gauze as instructed  for Alex and Brandi above. (Corey&#8217;s hands are very difficult!! Hang in there).
  d. Torso:  Start with 4&#8221; soft gauze over Webril.  Figure 8 around shoulders and work down torso (requires 2 rolls).  Follow same pattern with Kerlix and &#8220;hard&#8221; gauze.  Be careful not to wrap too tightly under arms &#8211; leave room for movement.  Secure with 4&#8221; Coban around torso and 2&#8221;or 3&#8221; around upper arm.
 e. Legs:  same order of bandages as torso.  Start at toe leaving extra which can be folded down to protect toes.  Work towards thigh as far as you can go.  Extra Kerlix can work down again towards knee.  Be careful too leave dressings loose enough to allow bending of knees.
3. Final layer is tube stretch gauze (precut).  Small gauze with cuts for thumbs over the arm.  Longer small tube gauze is for legs.  Larger pieces crisscross over the torso (open like a sock with spilt side up.  Insert arm through tube, head and other arm goes through the spilt, pull down.  Do same with other side)
4. Place Vaseline gauze on exposed wounds around waist and legs before putting on pull-up.
5. Often the children will have difficulty walking after a change and may request a &#8220;boost&#8221; (carried to next location) as they are sore.

Does the Insurance pay for supplies: Yes

Name of your insurance company: Medical and California Children's Services

Filling out form: Parent/Caregiver

Email: sly@silviaskingdom.com

Country: USA

Patient name: Nicky Z. 10 years old

Form of EB: Recessive Dystrophic-Hallopeau Siemens, medium to severe. Involvement includes esophageal dilatations and hand surgeries.

Used for Itching: Benadryl / Atarax / Hydroxizine

Laxatives used: Milk of Magnesia, Senokot, Miralax, Enulose

Esophagus/throat medicines used: Prescription strength Zantac

Other Medicines used: multivitamins, iron, zinc

Important Hints: using bleach in his bath. I do not take his bandages off until he gets out of the bath, and I take them off and replace one at a time. Because of the Bleach Nicky has never needed to be on antibiotics, the bleach kills all.

Hints for babies (diaper): Huggies Supremes, then Huggies Ultratrim

Misc Hints for babies: basically lots of sheepskins

Hints for babies (feeding): We exclusively used Haberman Feeder nipples, we tried others, but they were the only ones that did not give him mouth blisters. I pumped milk until I could, then I gave him formula with extra powder for calories. We then started to add other things to the formula, such as heavy cream, oils etc.

What patient eats now: Nicky's throat is so compromised that he has to be tube fed. I give him 4/5 cans of Nutren 1.5 by Nestle' overnight at 100 cc an hour. He can eat mushy things by mouth, puddings and yogurt etc.

Misc Supplies used: I used knee pads for Nicky when he started crawling and also for his elbows. I also used those tennis wrists for his elbows, they worked great. Pedors are the shoes he wears, or misc. slippers that are easy to put on.

Products used for Wound care:
Vaseline Gauze: used on all wounds and healed wounds that are still 'red'

Xeroform (R#433500): used on all wounds that smell as possibly infected

Molnlycke Mepitel: Used on wounds that seem to have a hard time healing
Molnlycke Mepilex: Used on nasty wounds that seep a lot and wounds that need extra padding, such as knees and ankles.

Kendall Conform Stretch Bandage 2in (R#2231): used to wrap feet and hands because of softness over Vaseline gauze, and on some areas, over Webril.

J&J Soft-Kling 3in (R#6993): Used over Vaseline gauze or over arms and armpits to cover wounds or to protect skin from injuries.

J&J Soft-Kling 4in (R#6994): Used over Vaseline gauze or over legs and chest to cover wounds or to protect skin from injuries.

Kendall Webril Undercast Padding 4in (R#3175): used over Vaseline gauze in areas that need extra padding-such as feet, knees and elbows.

Kendall Kerlix 4.5in (R#6715): Used over regular gauze for padding on chest.

Kendall Kerlix 2.25in (R#6720): Used over regular gauze on bottom of feet for padding.

Tubegauze (R#58076 for size 4): used over gauze to keep everything in place in arms and legs, a larger size for torso.

Precisionglide Needle (R#305125): to burst blisters

Zinc Oxide 40% (various, found mostly in diaper rash creams): spread over wounds that have a hard time healing

Aquaphor: Used for extra moisture under Vaseline gauze on wounds

Smith & Nephew Protective Ointment (R#448200): I use this blue cream a lot on all healed red areas to get the skin to regain some strength. It also helps to get rid of scars.

Wrapping Instructions:
HANDS: I follow the instructions on this website.

CHEST AND ARMPITS: I follow the instructions on this website.

LEGS & ARMS: I start by putting Aquafor on wounds, protective ointment on all red areas and zinc oxide over Mepitel if there are areas that have a hard time healing. I then cover all wounds and red areas with Vaseline gauze. I then take some Webril and cover elbows/knees and any area that Nicky might be prone to scratch so the softness will make it hard to open a wound, and then cover everything with J&J gauze, 3in for arms, 4in for legs. I then cover with the Tubegauze.

FEET: I start by putting either Aquafor, Zinc Oxide (on bad wounds that are not healing) or Protective Ointment, on all the red or raw areas. I follow by covering the entire foot with Vaseline gauze (Xeroform on areas that might be infected or smell bad) I then cover entire foot with one layer of Webril, except the ankle part, where I usually put the Mepilex. I then pad the bottom, toes and ankle with some 2.25in Kendall Kerlix (not a whole roll), wrap the entire foot with one roll of 2in Kandall, Conform 2in stretch bandage. It might seem like a lot, but with all this padding Nicky can run and even jump, and rarely has any new blisters!

Does the Insurance pay for supplies: No

Name of your insurance company: Aetna, California

Who pays for supplies: CCS-California Children Services

Do you know of local Doctors familiar with EB you could recent: Yes sly@silviaskingdom.com

City and State of where these Drs are: Bakersfield/Lancaster, California

Comments: More information on Nicky's website: http://silviaskingdom.com/nickymain.htm

Filling out form: Patient
Email: bgunn33@tiptontel.com or nascar3324@yahoo.com
Country: USA
Patient's name: Bruce A. Gunn, 35
Form of EB: Recessive Dystrophic-Hallopeau Siemens
My involvement would be scarring all over my body, fingers are webbed together, except for my thumbs, keeps me very independent & functional to be able to do my own dressings, normal daily activities, from dressing myself to cooking & driving. I have sores mostly on my arms, hands, knees, legs, thighs, back, waist and feet. Occasional have sore on my neck & shoulders.
Used for Itching: I do itch at times, but not as bad as some of my fellow RDEB/HS EBers who are worse off in itching than I am. If I use an cream is Benadryl Cream and usually on my face for a rash or I get redness.
Laxatives used: I don't have very much problems now, but did as a child. Now if I take my Upper B complex and my Liquid Vitamins (Biometics), then I stay regular without having to much problems.
Esophagus/Mouth: I take Nexium for my reflux and for my esophagus / throat on a daily basis. I use Crest Toothpaste for brushing my teeth, and Scope for mouthwash, and Prevent by Colgate for plaque use prescribed by my Dentist.
Misc. Medicines used: I take Biometics, which is a liquid vitamins that makes swallowing easier and absorb the vitamins alot more than pill forms. The usual vitamin A,B,C. If interested in liquid vitamins, you would need to go through me to get it & if you want information. Not sold in stores.
What patient eats now: I ate soft food, but really ate a normal diet, always high in calories, I never had a g-tube in my life. I have had throat problems swallowing in 1980 that put me in hospital. There time I couldn't eat anything, but could eat Pizza King pizza. I had lots of milkshake & drink Jello (warm) is my favorite. I drink boost from time to time, but not as much, only when I'm in the mood. Been drinking alot of milkshakes lately, because they taste good to me. I eat red meat, chicken, veggies, fruits, and anything soft, tender and good!!. I have a steak recipe on my website: http://www.geocities.com/bruceandeb
Misc Supplies used:
I use my own judgment to wrapping what ointments & dressings, depending on the areas. I use the Mepilex dressings on my back, butt or hard to wrap areas. Seem to stay in place without wrapping the areas, specially my neck, and upper things. I cut Mepilex into pieces if need me depending on the area, like my shoulder blade or my back. I use the Mepilex Border the same way. I use Xeroform alot, and really works well for me. I double it to keep it moist, been using Xeroform for about two years now, and it helps keep my infection under control and prevents anymore serious problems.
Products used for Wound care:
I use all sorts of dressings & ointment now. Before my mom made my dressings out of top sheets on beds and used Bacitracin Ointment & Sayman Save for 30 years, until I started getting non-healing wounds & ended up getting skin cancer (SCC). Now I use, Xeroform (yellow dressing), Vaseline dressings, the Mepilex & Mepilex Border products are been out for couple of years now. I use Telfa pad, sizes 3x4 in. and 3x8 in., Adaptic dressing made by Kendall or Aquaphor Gauze, sizes 3x4 in. or 3x8 in. Ointments: I use Bacitracin, Triple Antibiotic ointment, Bactroban, and Aquafor Ointment. I never stay with one ointment very long, I alternate and use Bactroban for one week and go off of it for awhile. I use good judgment and very careful not using it for very long. I use soft-kling gauze for bandaging my arms, hands, and feet. I use name brand Ace's to wrap my legs, knees, and thighs. You can re-wash them and reuse them. Ace Brand hold up much better and longer in the washer and dryer. I use the 6 in. for my thighs and knees, cover a wide area. 4 in. size for lower legs & my feet, and use 3 in. as protection on my right arm & hand. Hold better in place. I have mom split them in half and sew the ends up to get two out of one ace for all sizes. I love the Versalon Gauze sponges for protects & padding.
Wrapping Instructions:
I keep everything simple when wrapping and everything else in general. I buy things for convenience, may cost more but well worth it.
Does the Insurance pay for supplies: Yes
Name of your insurance company: American Community Ins. Co. in Indiana
Do you know of local Doctors familiar with EB you could recent: Yes bgunn33@tiptontel.com or nascar3324@yahoo.com
City and State of where these Drs are: Indianapolis, Indiana

---

Filling out form: Parent/Caregiver

Email: dawnhirt@hotmail.com

Country: USA

Patient name: Anthony 6 months, Michael 29 years, Veronica 5 years

Form of EB: Dominant Dystrophic, AJ and Michael Are medium , Veronica is mild

Used for Itching:  I use the Aveeno baby lotion. Sounds silly, but it works on all of them, it moisturizes the skin for a full 24 hours, and helps keep itching away really well. And you can use as much as you want, it won't hurt them.

Laxatives used: We use a couple of different things for BM.  First we try a Collace suppository, only half is needed for AJ and Veronica. If that doesn't work we use Prune juice. Be careful, only use about 2 ounces on babies, or you could have a mess on your hands. If that doesn't work we use Senokot for kids, the chocolate flavor. 1 teaspoon is good for 4 year old Veronica.

Esophagus/throat medicines used:   Anthony has very bad acid reflux, the doctor put him on 2ml of Zantac. As he gains weight the dosage increases. It works very well. It also helps with their kind of EB to add cereal to the formula to make it thicker. It's easier to hold down. AJ has been on cereal since he is 2 weeks old. That will explain why he is 25 pounds at 6 months old.

Important Hints: Wrapping the thigh is a hard thing to do, because the wrap rolls down.  Cut off the top of your husbands sock, and slide it on to the baby's thigh, it holds the bandage in place!!

Hints for babies (diaper): When Veronica was a baby we used Huggies Supreme diapers, they seemed not to bother her skin, but AJ huggies didn't work, so he is in pampers cruisers, they are soft, and tend not to tear his skin, not always though, sometimes the better choice is cloth diapers.  My suggestion would be to try it all, see what's best for your child.

Misc Hints for babies:  Be so careful bathing babies with EB.  A normal baby bathtub is not a good idea. I found out the hard way that they get their feet caught and fingers caught, and end up with lots of tears in the skin. A bleach bath is good for them, takes away infection. I use a capful to every bath. Be careful not to get it in the eyes. Never lift a baby with EB from under the arms, that can tear the skin. always lift with one hand under the head and the other hand under the butt.If your afraid the baby will get hurt from others holding it, say no!! Babies can get hurt and probably will.

Hints for babies (feeding):   AJ had a bad case of constipation, so he was on Similac with low iron until he was 4 months old. But because of the acid reflux, he was on cereal in every bottle. One teaspoon of cereal to every ounce of formula. But only oatmeal or barley. the others tend not to be thick enough, and can sometimes cause allergic reactions.

What patient eats now:   AJ eats any type of baby food, and even snacks on the Gerber cookies. He won't take it if he's got a blister or sore in his mouth. Veronica can eat anything, but when she has sores or blisters we stay away from anything that can make it worse, like something hard to chew, or any drinks with acid in them. Sometimes it's better at that point to give them soup with water or milk.

Products used for Wound care:
3M nexcare compfort strips 1 7/8in x 4in, for knees and elbows. Or any big blisters that hard hard to wrap.
3M nexcare comfort strips 1in x 3in used for small blisters or toes and fingers.
Johnson & Johnson triple layer non-stick gauze pad used to cover large blisters and wounds.
Mueller foam wrap used to wrap bandages. Very good product, easy tear makes it easier not to wrap to tight.
Phizer neosporin used to treat infected areas.
A&D ointment used to treat areas without infection.
Johnson & Johnson baby oil used to remove bandaids.  It is never good to use bandaids on EB children, but when it is a must, before removing the bandaid, saturate it in baby oil and let the baby oil remove the adhesive. DO NOT ATTEMPT TO REMOVE THE BANDAID WITHOUT THE BABY OIL, YOU WILL TEAR THE SKIN!!
Small pair of sharp scissors for cutting the blister. With DDEB popping the blister with a lancet can make the blister worse.

Wrapping Instructions:
I use this method for hands, elbows, knees, and feet:
I start by sterilizing the blister by taking an alcohol swab and gently wiping the blister with it. Then I sterilize the scissor with alcohol. I put a triangle shape cut in the blister and use a paper towel to carefully drain the blister. I put some A&D or neosporin, if it's infected, on the blister area. Then I cover it with a gauze pad (non-stick). Then I wrap it with the foam wrap. Then I change the bandage and start over the next day. If there is an infected or open wound, I use peroxide instead of alcohol. Keep pouring the peroxide on it until it stop bubbling, then rinse with water.

Does the Insurance pay for supplies: No

Name of your insurance company: Medicaid, NY

Who pays for supplies:   All supplies are paid for out of pocket. Although i am fighting medicaid to cover the costs, at this time they are not.

Do you know of local Doctors familiar with EB you could recent: Yes dawnhirt@hotmail.com

City and State of where these Drs are: Stonybrook , NY  USA

Comments:   Any type of EB is horrible for a child to live with, but we as their parents have to teach them to be strong, and don't let anyone critisize them. Never limit your EB butterfly unless it is absolutely life threatening. They will learn their own limitations. Teach them to believe in god, and know that he made them this way because they are special to him, not because they are bad children. Teach them to believe in themselves, and always have hope for a brighter tomorrow!!! God bless all of us families and patients!!!

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Filling out form: Patient

Email:  

Country: New Zealand

Patient name: Trevor  28/ 12/ 45

Form of EB: Recessive Dystrophic
Misc. Medicines used: Healthy Diet (vegetarian) 

Important Hints: Linseed

Misc Hints for babies:  When my brother and I was sent home from hospital to die (no big deal we all do it) aged two and three we were put on a very strict diet. Fruit and vegetables etc. No lollies soft drinks junk food, white sugar white flour. Good diet is a bonus.

What patient eats now:   Healthy diet first and foremost. Being a vegetarin has had its most positive rewards.

Products used for Wound care:
Linseed and lots of positives. Linseed is dirt cheap and can be bought from the health shop or bin in in the supermarket. Lady from the health shop tells me organic is the best but I know both work. Her recommendation was that all people should take it E.B. or not as it's just a natural product. Personally I always look to improving the scenario with E.B. with only those things that are natural from nature.  

Wrapping Instructions:
When I need to dress any wounds I keep it simple. Paraffin gauze on wound covered by sterile pad and bandaged with a crepe bandage. I avoid plasters like the plague. More trouble than they're worth and if going into hospital I put it on my list of allergic to. Breaking blisters at their earliest stages.

Does the Insurance pay for supplies: No

Who pays for supplies:   In the last ten years or so the government has picked up the tab

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Filling out form: Patient

Email: UnicornGirl1983@aol.com

Country: USA

Patient name: Cristina P. Age 21

Form of EB: Recessive Dystrophic Hallopeau Siemens form. Moderate to severe. Includes hand webbing, esophageal strictures, anemia..

Used for Itching: I currently use Claratin Redi-tabs, mostly because they are so easy to take, they dissolve. But I'm not sure it works all the time. I have tried many itching meds when I was young and have kind of gave up now. I've had a problem with hives recently and the Claritin also has prevented those. When I am itchy I try to cool down, turn the air up, eat a popsicle, etc. I also have this thing called a Chillow. It's filled with water and when you lay on it, it cools you down. It's meant to put on your pillow so your pillow doesn't get all hot when you're sleeping.

Laxatives used: I have not needed laxatives. If I'm having problems I usually eat canned pears, they're usually pretty soft and easy to eat.

Esophagus/throat medicines used: For days where my esophagus is really hurting because of a sore or blister, I sometimes suck on Get Better Bear pops by Dimetapp. They help numb the throat. For oral care I use Scope mouthwash but used ACT mouthwash when I was younger because it doesn't sting. I look for the smallest toothbrush I can. I recently found one made by GUM that is meant for hard to reach areas. I also chew Trident gum to help clean teeth.

Other Medicines used: Sometimes liquid vitamins such as Biometics or regular multivitamin and zinc and iron. Any lubricant for eyes, I don't have a
favorite. Regular ear drops to help loosen wax when needed.

Hints for babies (feeding): I believe my mom said she used a regular bottle but cut the hole bigger.

What patient eats now: I drink Ensure. Sometimes I drink Scandi-shake. I can eat most anything that is soft, pureed, or crunchy enough to chew up really tiny. This does NOT include potato chips because they leave pointy edges even when chewed. I used to have a G-tube but had too many problems with it so I don't anymore.

Misc Supplies used: gloves, scissors used to cut blisters, I don't know what they're called but they're blue underpads I use to sit on while doing dressings. Paper tape to secure bandages. I like wearing silky pajamas, it reduces friction when I roll around. I prefer tighter clothing, makes me less itchy. The softest shoes I had were made by Hanes but I can't seem to find them again. 

Products used for Wound care:
Kendall Conform or Sof-form
Mepilex - used on almost every sore, absorbs well, and very soft for painful sores. 
Mepitel - used on new, large, oozy sores. I then put mepilex over the mepitel 
Bacitracin - used on almost every sore. I know that's bad but that's how I've done it my whole life so it's probably more of a lubricant now but it still seems to work because as bad as my sores are they rarely ever get infected and always heal well. I almost never needed to use anything stronger than Bacitracin. 
A&D - used on healed skin that just needs some moisture.
Alwyn cream - used on sores that have just healed to try to keep it healed and used on granulated (puffy) sores. 
Telfa, Mepilex transfer, Mepilex Lite - all used in random places where nothing else will work. 
Surgilast - to hold everything in place.

Wrapping Instructions:
I am only bandaged usually on my torso because my back is very bad, but rest of me is usually good. First I shower. I don't stand under the water but the steam helps get my back wet and I gently rinse and cut off any dead, loose skin. I use Softsoap Bodywash to wash face and other healed areas. I like the milk and honey kind. I'm usually in the shower for a very long time, then I get out and pat dry. I sit in front of a little electric heater while doing dressings so I don't freeze. First I apply lotion to everywhere that's healed. This is very important to keep my skin from getting really dry and flaky. My driest spots are my elbows, hands, knees and feet. I love using Jergens Ultra Healing lotion best. For my torso I start out applying any Mepitel if needed. It is important to put mepitel on before the ointment, it works better. Then I apply bacitracin to all my sores except I put Alwyn cream (not available yet) to any granulated sores. Then I put 3 of the largest size Mepilex going down my back and a few small ones in the front and Telfas or Mepilex Transfer or Mepilex Lite to other places that are harder to cover such as around the neck. Then we wrap and do a criss cross up and over my neck. We use tape to secure the ends of the wrap. Then we use surgilast, and cut holes in it for armholes. The bandage and surgilast covers from the top of my hips to my neck and the back of my neck is completely covered.

Does the Insurance pay for supplies: Yes

Name of your insurance company: Medi-Cal California

Do you know of local Doctors familiar with EB you could recent: Yes UnicornGirl1983@aol.com

City and State of where these Drs are: San Diego, California

Comments: Please visit my site for more information and tips. There is also information on Anemia, esophageal problems, and EB Friendly recipes.
www.ebinfo.homestead.com

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Filling out form: Patient

Email: MrtnzEnterprise@aol.com

Country: USA

Patient name: Paul L Martinez - age 21

Form of EB: Recessive Dystrophic Moderate. Includes hand webbing, esophageal strictures, anemia (had to hand surgeries on both hands as child at Stanford Children's Hospital.  
Used for Itching:  Hydroxyzine HCL - its liquid and helps prevent itching but mostly insomnia as well. Lot of EBers might have trouble sleeping because it's un comfortable at times depending on wounds. I take it once a day before i go to sleep.
Laxatives used: Docusate Syrup Laxative - It isn't really a laxative nor makes you go to the bathroom fast such as a enema or something like that would. It's basically a stool softer and used sparingly, not everyday, this is because EB's take a lot of iron and iron can cause constipation problems sometimes.
Esophagus/throat medicines used: Nothing at this time. I chew my food very very well, but have choked as a kid a lot and sometimes I still do, however I know how to handle the choking very calmly and manage to spit it up. I can always still breathe if I choke, however I do plan to see a doctor soon to do an x-ray or something. .

Other Medicines used: I take iron pills called Ferrous Sulfate - film coated 325 mg. I take this 3 times a day after every meal I eat. The pills are very small and manageable to swallow. However if you are unable or scared to swallow as I am sometimes, just let the pill get mushy in your mouth for awhile, then crunch it , it will break up, drink some water or apple juice and swallow it whole and that's it, theirs no after taste or anything. It really beats taking the nasty liquid form of iron minerals!

Hints for babies (diaper): my mom used Huggies when I was a baby. Tape is fine as long as the tape is not close to the skin, and don't put it real too tight.
Misc Hints for babies: bathing, use a non perfumed soap, pure soap like ivory, the perfume soap is not that good for the skin. If your baby has a fresh skin wound, cold water would hurt a lot, I can't speak for all EBers but warm water feels a lot better on the wounds than cold water. 
As their toddlers and kids, cut all their food up real good like meat. Raw products such as lettuce and tomato often irritate the throat and may
choke. Make sure no tape touches baby's skin when bathing never have high pressure of water, high pressure can tear skin. Warm water is best, even if its 100 degrees. We have thinner skin so are normally very cold after a bath/shower even if it was warm. Never use pointy scissors cutting bandages, use the one with the edge at end, special scissors. And never cut the wrappings FAST you never know when it might stick and you can tear a whole thing of skin, real painful! If your child does not trust you with scissors or has A LOT of wounds, take them off slowly by hand, unwrapping.  BEST ADVICE I think is BE PATIENT, I know you might get frustrated at times doing this everyday for a long time until your child is a teenager and can learn his/her self hopefully. 
What patient eats now: I can and do eat anything I want from meats to chips to lobster to tacos, however some products I avoid because of higher risk of choking, stuff like lettuce. I chew my food very well before every swallow. I never used a g-tube in my 21 yrs of life. As a kid I took ensure plus, I hated it! and still do, it's so nasty, however the best way to deal with ensure is make a milkshake out of it! Then its drinkable. Today though I drink boost or carnation, anything in high vitamins and taste good will work.

Misc Supplies used: Shoes - any kind of shoes I can wear however I put a dr scholls foot pad (think that's the name) in my shoes, to make more
comfortable and soft. Always when shopping for shoes remember to get a good withy.
Bed - sheepskin, very comfortable
Clothes - I can wear any type of clothes
Underneath - Sometimes I do wear an adult diaper called Attends (also covered by insurance) Mainly if I have a wound on my bottom. I don't want
to wear underwear because cotton will stick bad to it worse than a diaper would. If there's no wound I wear regular boxers.

Products used for Wound care:
1. Xeroform dressing, I have used this all my life and it works very well on the open wounds.
2. kerlix gauze
3. elastic net (to hold gauze in place)
4. aquafor (its an ointment to help dry skin, also rub on dressings to heal better
5. non stick skin tape, I use tape if my shoulder or back is wounded, i never used elastic net for shoulder/back, that would be very un
comfortable, tape does the job. But even if it is non stick tape always be weary and make sure tape cannot touch skin at all. .

Wrapping Instructions:
I take showers and have one of them sit down bathtub chairs things. My tub and shower are one. So I place the bath chair middle of the tub, enough room where i can stand in front of it and shower. I sit on the chair and take all of my wrappings off. The chair will be hard so what you do is, get a old pillow, put a plastic grocery bag on the pillow so skin wont stick to pillow and when water hits it, it will flow off the plastic. Then the chair isn't hard. After I take a long shower, if tired of standing up I simply take a rest on the bath chair right behind my knees. I use ivory non fragrance soap and put it on one of them wash balls (don't know what their called lol) has a string on end, its easier than holding the soap. Also I don't put the water pressure high because this will cause tear to skin.
After shower I get out, step my feet on the bathroom rug so wont slip. And dry self with towel. Then I drain out any water from pillow on bathroom chair into bathtub, sit on it and wrap myself there. If my back and shoulders are fine I put my shirt on first. I start with hands first. I start by putting Aquaphor on the Xeroform dressing, and apply to any wounds on hands, arm , elbows. If I have a wound inside the finger, I cut a small long strip of Xeroform dressing and apply dressing gently inside of finger. I then fold the Kerlix gauze once over, and wrap around palm of hand 3-4 times then make my way down to hand. If there's a wound in finger cut thin long strip of the gauze and place gently in wounded finger on the dressing. Then go over palm and wrap hand with gauze. If nothing is on my arm I do not wrap it, and let the skin breathe. If there's a wound I wrap gauze from hand to up to elbow, if the wound is a big wound and is known to bleed I wrap over it extra. Then I apply elastic net to hold gauze, cut a small whole in elastic net and place over thumb.
Next i do my feet, again I cut the dressings, apply Aquaphor on dressing and apply on any wound on feet, legs , knees. When wrapping feet I always
make sure its wrapped real good, covering toes 3-4 times and around foot, and cover the back heel up to legs. If no wound on legs I do not wrap and let it breathe.  I then wrap my knee ALWAYS wound or not, for protection. After I cut the elastic net and apply on foot/legs/knee. Again if a wound is bad, always wrap extra, for less or no blood to appear. And again if theirs a wound inside of toe then repeat process as a wound from finger.
Thighs I wrap the same way if theirs a wound on a thigh, usually theirs not but sometimes they are.
Shoulders and back - very difficult to wrap alone and I suggest getting help with the shoulders and back from family member once your done with
wrapping everything else. To wrap back take gauze and start from upper armpit and wrap around a few times up to shoulder and around shoulder and close to neck, then take more gauze and wrap around shoulder once then start your way under armpit rolling gauze around back and chest (not too tight!). Shoulders and back is the hardest and will take practice. Then apply non stick skin tape around shoulder and making your way under armpit and wrap around back and chest. If the gauze is high up on neck, cut and trim it with scissors.
For wounds on buttocks or side of hips or lower back, there isn't much you can do wrapping besides applying Xeroform dressing on buttocks and side of hips and then applying underwear over. However most likely it will stick because of cotton, making it painful to take off if you have to hurry and go to bathroom. So my suggestion is wear a diaper, apply baby powder. It will most likely not stick. Then if you don't have any wounds on buttocks/hips then wear regular boxers/underwear.
Also for blisters on anywhere on body, I pop them first with a sterilized blister needle, and drain good. And I think that's pretty much it.
It will take some getting use to wrapping up yourself but over the months and yrs you will get faster at it, and find your own way to do things. On
a good day, if i don't have any wounds on my shoulders/back. it will take me a good 45 mins to an hr from getting in shower to finishing wrapping.
If wounds are bad and I just feel drained that day, it could take up to 2 hrs.
Also I never had a major problems on my face and never needed dressing or bandaged. I have a pretty strong clear face. And ears.

Does the Insurance pay for supplies: Yes

Name of your insurance company: Medical - was on CCS (California Children's Services) until age 21. Now medical pays for everything. I never had to pay for anything.

Do you know of local Doctors familiar with EB you could recent: Yes MrtnzEnterrpise@aol.com

City and State of where these Drs are: Stockton, California

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Filling out form: Parent/Caregiver

Email: ab4uscw@yahoo.com

Country: USA

Patient name: Abriana "Abbi"  W.  5yrs old

Form of EB: Recessive Dystrophic - Hallopeau Siemens unable to diagnose

Used for Itching: Atarax - 1 tsp at bedtime

Laxatives used: Miralax - 1/2 cap full every other day.

Esophagus/throat medicines used: Abbi uses a very soft toothbrush provided by her dentist. This help prevent any damage to the gums and works real well on the teeth. She uses Act mouthwash to brush and rinse. Abbi had most of her baby teeth pilled when she was two yrs old because her gums were not doing well. Her permanent teeth are coming now and she seems to be doing much better.

Other Medicines used: Prilosec - 1 1/2 tsp twice a day.  not working real well for her reflux. Multi vitamin - 1/2 oz. once a day. Omega three oil - 1 tsp every day. Noni Juice - 1/2 oz. once a day. protein bars - 1/4 of a bar once a day. Abbi dies very well with her vitamins.  they really do help with her energy and healing.

Hints for babies (diaper): the first year i used cloth diapers with a disposable diaper over.  After the first year I used huggies supremes and they worked great.

Hints for babies (feeding): Abbi could not latch on for breast feeding but I did pump and Abbi used a Haberman feeder.  She did great with that I after the breast milk she moved on to Similac she gained very well on just that and did not need any supplement until after the first year and then she was placed on pediasure with fiber and has been on that since.

Does the Insurance pay for supplies: No

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Filling out form: Parent/Caregiver

Email: trishknuth73@yahoo.com

Country: USA

Patient name: Shane G./4mths

Form of EB: Shane has a severe form of RDEB.

Esophagus/throat medicines used: Magic mouthwash, about .5ml before feeding. I just squirt it in and let him kinda swish it around and swallow it. Magic Mouthwash is a combo of Benadryl, Maalox, lidocane, and a steroid. It has made an unbelievable difference. His pain has been dramatically decreased because the majority of his pain was coming from in his mouth and throat.

Other Medicines used: 5ml - 1ml morphine with dressing changes. Not working that well, he has become so tolerant.
..1ml multivitamin
..35 ml zinc
..5ml prevacid for reflux.

Important Hints: YES, the hospital sent me home after he was released with Vaseline and gauze. His dressings fell off a couple times a day, plus dressing changes were everyday and very painful for him. We now use Mepitel, Mepilex, Mepilex lite, and Tube fast instead of surginet or pronet. His dressings can be changed every 2-3 days instead, his healing is so much faster, his skin looks so much better, and he is so much more comfortable.

Hints for babies (diaper): We use FuzziBuns cloth diapers. They are incredibly soft. At night we just cut the tabs off a disposable diaper and stick it right inside the Fuzzibuns diaper instead of it's liner and he stays dry all night. His diaper area is completely clear. In the morning when we know his is going to have his a.m. bowl movement we just cut the elastic out of White Cloud diapers (at Walmart)

Hints for babies (feeding):   We use the Haberman Nipple. We also make sure the nipple is wet or we lube it up with KY jelly. He drinks Good Start formula and is on a high calorie recipe.

Misc Hints for babies: Tubefast is by far my favorite product. Before I discovered it I was cutting up tights. Mepilex works great for knees and elbows.

Products used for Wound care:
Mepitel - cut 1" wide to wrap each finger
Mepitel - 3.5 x 8 cut with 4 slits to slip each finger through to protect web spacing in hands
Conform - 1" wide to ABC wrap fingers and hands
Mepilex light - cut to make a "boot" to protect feet and heals
Mepitel - cut 1/2 " wide to wrap toes
Mepitel - cut 3" wide by 6" long with 4 slits to slip toes through to protect webbing
Mepilex- cut in squares or circles for knees
Mepilex lite- for underneath arms down to elbows
Mepitel- cut to protect all wounds
Tubefast- over dressings on feet all the way up to past knees to keep all dressings in place and to protect, also smaller size on hands with a small hole for thumb up to passed his elbows to keep dressings in place and to protect skin.

Does the Insurance pay for supplies: Yes

Name of your insurance company: MA - Shane is our Foster Child

Who pays for supplies: For things not covered by insurance, we do.

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