EB Info World

Supporting families dealing with Epidermolysis Bullosa.

EB Info World - Supporting families dealing with Epidermolysis Bullosa.

Tag Archives: bandage changes

Caregiver Poll Results

Around 2004/2005 a poll was posted on this website to ask various questions such as where they get bandages, if they have help etcetera. Here are the results of that survey.

The vast majority of people that have answered the survey stated that one of the parents is home full time and does all the bandage changes. Others tried to get the State to help, but they exceeded the income requirements (which in many states is 30k a year, no matter how many other children they have). Others tried to find daycare so that the children would have interaction with other kids, but most daycare centers did not want to accept that kind of liability. For those that either had hired help or had the state pay for the help, or had interesting tidbits about the care of their children, here’s what they said…

Here’s what some of the parents have said!

  • We have 2 nurses (for 2 RDEB children) and they both are allocated about 45 hours a week. They can do their whole bath and bandage change. The nurses are paid through the state of Ohio under the Medicaid Waiver program. The nurses go everywhere we go.
  • I have two boys with EB and live in state of NJ we also have a Medicaid waiver program and I was able to have nurses to help. They were allowed to do everything except the IV and they went everywhere with us. My youngest has a nurse to go to school with him in which the school pays for it.
  • We do have a pediatric nurse 35 hours a week that can do limited wound care. When I say limited I mean that she can apply ointments and change bandages. When it comes to draining blisters she will get one if it’s large, but she can’t do feet (they are the trickiest and most painful) and doesn’t get the smaller blisters. Insurance pays for her completely. She also goes to school with him.
  • We have a nurse from the hospital comes once a week to be sure our son has no infections, and a nurse “helper” who comes 4 times a week. They help with the bandages by holding him, I do the bandages and burst the blisters myself. They come 1 hour and a half a day for now. They are flexible. They bring all the bandages, that’s the best part, we really can’t afford those. We live in Canada.
  • We are very fortunate we have grandma to take care of our daughter 3 full days and 2 half days during the week. The other half days she is in pre-school. We pay her $200 every two weeks which is cheap but the most she would take. Our daughter needs are not severe just the mending of falling wounds and blister popping and grandma does great at this. Her preschool teacher has been notified and trained on wound care by me and I supply all of the bandages.
  • I am the sole caretaker of both my EB children. One of my girls is on SSI, and for her many needs, I receive 283 hours a month (California State max of a program called IHSS-In Home Supportive Services) I can choose to have someone else come in and help me, or I can do it all myself. At present, I do it all myself. It works out to 9.5 hours a day every day, throughout the month.
  • We took care of our daughter (JEB) ourselves. I did have friends watch my toddler (EB free) so I could do dressing changes in peace.
  • My son is 17 now. He has RDEB. I have always done the dressings myself with him helping as he got older . Now that he is pretty much a man, he doesn’t want my help. The only thing I do is put water in the tub for him and set out all his bandages and supplies. He does the rest. He is very independent!! He is truly my hero!
  • I do receive 25/week of skilled RN nursing and they are able to do bandage changes and popping blisters but my child still prefers MOM to do it. My child gets SSI and Medicaid through the state of Rhode Island and they pay for the nursing also he attends pre-k and has a CNA that rides the bus back and forth and also cares for him in the classroom, she does not do any bandaging and will take him to the school nurse if he needs any and the school department pays for that.
  • I have a LPN that comes 1 or 2 times a week to give my daughter her bath and do her dressings. She is paid for by Children’s Special Health Care Services, an extension of Medicaid in the state of Michigan. It was hard to bring her in to do this since she was 4 1/2 when she came. At first she didn’t like it at all that someone else was doing it, but now she looks forward to the nurse coming – she gives longer and more fun bathes than I do.
  • We live in the Philippines and we hired 3 certified Nurses, they each spend about 14 hours a day. They can do everything, they trained with us at the hospital so they are as familiar with dressing changes as me and my wife. We pay them about $500-800 a month.
  • Here in New Jersey the school system pays for the nurse and they hire who they want (for school). NJ Medicaid pays for the supplies.
  • Here in Florida the local hospital informed me of a special medical daycare in my city of residence. The State Program from Medicaid and Children’s Medical Services (CMS) pay for the caregiver to come to the house 35-40 hrs a week and for the bandages. I do most of the bandage changes myself at home but I personally trained her nurse on how to do dressing changes. She does full changes if they become soiled or if my child takes her bandages off.
  • My daughter has RDEB and we live in Florida, both of us work but mom only part-time. A Nurse takes care of her, we found her through our Insurance, although insurance only pays for one visit a week, and we pay for one more visit a week out of our pockets. We do dressings every day, but full blown bath and bandages every other day. Our insurance is Aetna HMO, right now they pay for supplies with a $5000.00 out of pocket then they pick up the rest, with one nursing visit per week. The nurse comes twice a week to assist me, it takes us 4 to 5 hours per dressing change. Everything the nurse does, he has to do with me. He is not comfortable doing any of it without me. He is a RN also not a LPN.
  • Our grandaughter, which we care for, has RDEB and we live in Oregon. The State pays me 20 hrs a month to care for her from (HMO) DD SERVICES. Our HMO Insurance pays for the bandages. We get whirlpool treatments 3 days a week, 20 minutes in the whirlpool.
  • We live in Washington State and in our situation both parents work, one part-time. I found our caregiver through a Girl Scout Troop. Our daughter is on SSI and they pick up the tab for the supplies we need. Our caregiver does not do any bandaging.
  • We live in Mississippi and thankfully our insurance is paying for the bulk of things at this time. We are on Medicaid. Mom does all the dressings, baths etc for our son. Before mom decided to stay home from her full time job we had a full time baby-sitter/caregiver, however the extend of care she could do as far as wound care was a quick patch up job and draining of blisters.

If you have any hints or tips for other parents regarding help or how you get bandages, please leave a comment below! Thank you!

Helping Kids Cope

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Epidermolysis Bullosa, EB, is a very difficult condition to live with, even with the mildest forms.

These are things of outmost importance in helping your child coping with EB:

  •  Accept the EB and accept your child for who he is.
    This sounds simple, but it’s not. There is a certain degree of loss and mourning when a child is not born healthy, and it takes parents different amounts of time to learn to accept things how they are. This may take months or years, depending on the circumstances. The amount of time will depend on many factors… such as if this is your first child… or last, your age, and who you are and your upbringing. But, remember, the more accepting you are of your child’s EB, the less of a ‘big deal’ you make of things, the happier and comfortable your child will be.
  •  Remember, your child is #1, EB is to be treated separately and “secondly”.
    This is also easier said than done, especially when the children are small and there is so much care involved. But it’s important for the kids to grow up not thinking EB is all they are, because their little brains are working just fine, and they can do so much! Remember, most EB kids are straight-A students!! Skin care is important, as their health and life depends on it, but it is important for their mental well being, to help them be children, and you need to help them enjoy all the things in life a normal child enjoys, to play, to laugh, and to learn, with all the potential and need for joy as any other child.
  •  Don’t be afraid to consider your child ‘disabled’.
    This is one of those things no Dr will ever tell you, and parents are afraid to consider, but it’s the truth. Go ahead, get a wheelchair (it will save your child’s feet on long walks), get SSI (for financial help if needed), apply for help (Dept. Of Developmental Disabilities), get disabled plates (for extra wide spaces to get in and out of the car), it will make your child’s life much easier.
  •  Teach your child to explain EB
    There will come a time where you might be a breath away and not hear someone ask if your child got burned or has chicken pox. But your child heard and wants to answer. What is he going to say? This will happen often once he/she enters school, so, better be prepared. They can say something as simple as ‘I was born with a skin disorder’, or they can even hand out cards that explain what EB is (my favorite Option). Whatever you decide, make sure to instill in your child the notion that EB is not ‘who’ they are, just something they have.

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Coping with Baths/Bandage Changes

Bath and bandage change times are hardly fun times for either the patient nor the caregiver. The kids are scared of the ‘upcoming’ pain and they scream and holler in discontent. My son even hyperventilated-always did. He will do just about anything to get out of it, even take a nap (which he will always resist in taking otherwise).

Bandage change time is probably the only time EB kids get to release their frustrations, using it as an excuse to complain and cry about the whole situation, the powerless feeling of the condition, perhaps how they are treated by society etc. This, however, is not healthy. For kids with RDEB it’s a known fact that hollering and screaming hurts the throat-my son always throws up after a fit.
So, what do we, as parents, do to help the kids cope?

These are some suggestions that came forth from adult EBers.

  •  Diverting their attention AWAY from the wounds and the pain during the bath and/or bandage changes really work, such as watching a particular video, having someone else play with them or read them a story, or have them fiddle with a particular toy. Making a game out of bandage changes has worked with some kids too.
  •  IF your child loves a particular food, try to reserve it for bandage changes. My son *loves* M&Ms and Skittles, so I do not give them to him except during those times where he really needs the distraction. It does not always work, but it’s worth a try.
  •  Try to involve your child in his care as early as possible… the sooner the better. Whether that is letting them take the bandages off, having them hand you a needle or gauze, have them decide what limb to start with, etc. Basically, anything you can do to give them “a say” in what’s going on.
  •  Teach your child breathing techniques. Breathing helps control pain (and I know this one from having gone through 2 labors, lol), and once your child gets the hang of it, it will become second nature.
  •  Have your child pick a soft toy, they can beat, bite, punch, pull or whatever they need to do to channel their pain.
  •  Try saying things like, “I know it hurts.” or “this is going to hurt.” or, “Mommy does not like seeing you in pain but, we need to do this.” Be honest. And tell the child what you are doing as you are doing it. Instead of using the word “I” use the word “We” so, that the child hears he/she is part of what is going on and not just having this stuff done to them. Like, instead of saying “I need to pop this blister.”, say “We need to pop this blister.”. And so forth…

Helpful websites:

If you have any other helpful hints to share, please leave a comment below. Thank You!

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