Every EB patient is different… no, really!

When my son was born and later diagnosed with Recessive Dystrophic EB I thought the only difference with him and the other patients was the degree of severity. Actually, I take that back. I did not know there was a degree of severity either, I thought that, like most diagnoses I had known in the past, either you have it or not, like cancer. You either have it or not, there was no ‘worse’ or ‘better’ cancer, it just was. It wasn’t until my first trip to Stanford that the Doctor put a label on severity for me… ‘mild to moderate’ was his opinion. Oh… OK. We were happy with that, gosh, we don’t want to hear ‘severe’ ever. 6 months later, after Nicky started vomiting skin and blood and could no longer eat any baby food, he told us he had to ‘upgrade’ his diagnose to moderate to severe. Joy.

Even so, when Nicky was little, I felt that RDEB followed a specific set of guidelines, certain areas of the body were bad or worse depending on severity and that patients were all pretty much the same. I even said and gave advice I have since apologized for because I realized something that a lot of people are unaware of. Every patient is different. No, really!!! Each and every patient is different. They really, really are. I feel SO uncomfortable giving advice nowadays I rarely do it, and when I do, I do it only if I feel I can honestly contribute and truly help in some way. Oh, and the patient has to have at the very least the ‘same’ RDEB diagnose. I would not dream of knowing how to care for a Simplex/Junctional patient and I always refer those questions to other patients or parents with children with similar¬†diagnosis.

So… how do these patients differ? I can only speak for RDEB patients, of course, but I noticed many differences, not only in the skin and how it heals and where the wounds are, but what matters to one patient that does not to another.
Some patients, for example, like to air dry their wounds, they feel it works better for them. Others simply need to be covered, end of story. There truly is no need to argue about it or tell a parent who does not wrap to wrap or the other way around it. Every patient is different. We know what works for us and that’s the way it is.
Some other patients are adamant in keeping their hands, some don’t. This is a very personal decision, to mock one for doing surgeries or to mock another for not doing them serves no purpose. We need to support one another.

Nicky with his chest covered and his high collar shirt :-)

Nicky when he was 2 years old with his chest covered and his high collar shirt ūüôā

Here’s a personal experience.¬†Nicky often gets kudos for having a neck and chest that is wound free. Of course I’d like to think I have something to do with that because when he was little I wrapped his chest a lot and kept his hair long (not too long in this pic, he was basically bald until he was 2, ha ha) so his head and neck would be protected by the hair. Furthermore, I would always buy him high collar shirts to protect his neck even more from any little possible injury. Little scratches can grow and become huge problems with EB as I found out early on. As he grew older, areas that never got wounds became a bit tougher, harder to wound. I don’t know if my protection¬†techniques¬†helped or not, but I’ve met many patients whose necks were one of their worse problem… but, unlike Nicky, can walk just fine. Nicky’s feet have been a big problem for him as long as I can remember. I tried every which way to protect them, but from the time he was 10 or so they got worse and worse, almost like a spiral. Once the got wounded bad it was the end of it. He can barely walk now and I have to help him most of the time.
I even met patients who can barely walk but can eat pretty good all things considered, and some that could not eat anything but walked just fine. Some patients do very well with g-tubes, for others it’s a nightmare. I remember meeting this fine young man, with beautiful, normal looking hands, who could not walk at all. Another who claimed he had no wounds on his body¬†because¬†he had mentally mastered itching. Another could barely walk, but went rock climbing. I met patients that can drive and others that could not even imagine driving. I even saw some patients with tattoos or piercings and others who would think these things are simply crazy talk. No, really, I’ve seen it all. Every patient is different, I can’t say that enough. Every patient is different!

So… next time you might feel the urge to judge, please remember this blog.¬†Every EB patient is different… no, really!

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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How to find Individual State Programs

These programs help low-income families (usually) or/and children with special needs.

When you click on the link for YOUR State’s Department of Public Health, search for (if it’s not immediately evident) ‘Children Health’ or ‘Children Medical’ services.

If the NAME of the State Program and information it is known, that information will be below the state and link.

Another resource for all states is your local Social Security Office. If a child can be declared disabled, they would be covered by the local or state Medicaid program.

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State and Local Health Departments

Want a link added? Do you have the NAME or any information about a Children’s State program that is not listed? Are any of these links old or outdated? PLEASE LET US KNOW!!! Just fill out the SURVEY below and I will edit the list.

THANK YOU!

Fecal Hoarding and Constipation

Written by an Anonymous RDEB Patient

I have had these issues since birth and have tried a myriad of medications that have been prescribed or suggested by prior physicians. The list includes mineral oil, senna products (liquid and herbal tea) ex-lax, milk of magnesia, dulcolax, docusate sodium, Metamucil, Miralax, Benefiber and many others that I don’t remember the names of. Ultimately, none of them worked in a manner that was consistent, or the side effects were to severe so outweighed the benefits, or they didn’t help at all.

For anyone who may not understand why constipation and fecal hoarding is such a prevalent problem for EB patients it is because our skin does not have the same elasticity that others do. Therefore, during a bowel movement, the skin of the rectum/anal area is stretched which causes blistering, tearing, splitting, shearing and detaching of many layers of skin. This is EXCRUCIATINGLY painful.

Generally, what happens is the fear and anxiety of having a bowel movement causes a behavioral habit called fecal hoarding which is when a patient deliberately avoids going to the bathroom when the body is trying to naturally expel the matter in an attempt to avoid the pain. What happens then is the matter becomes impacted and the intestines become stretched as more and more matter becomes impacted, thereby causing the size of the feces to become too large to be expelled naturally, as the skin simply would not be able to accommodate its passing. Because of the impaction, the matter becomes very hard and gas builds up in the body, causing painful cramping, as the gas cannot be released from the body, as it has no room to move past the matter.

At this point, the only thing that is going to alleviate the impaction is a series of laxatives, stool softeners and enemas. This is a painful and humiliating process that can sometimes take a few days to complete. The best way to keep this from happening is to make sure that you are ingesting enough fiber and water to allow the fecal matter to be soft so there is less pain when having a bowel movement.

What can also happen is some of the matter can become fluid and is able to slip past the harder matter so there are small bowel movements that are generally very messy but do help relieve some of the painful pressure of the matter that is bearing down on the inside of the intestines and rectum. This can give a false sense of security as one may think that they are having a bowel movement regularly; however, the case may be that only a small amount is being released during these loose movements.

It is a trial and error process of trying different medications or fiber supplements. Either they don’t help, or they help a little but not enough or you spend all your time running back and forth to the bathroom, an sometimes not quite making it there in time, which is humiliating for a person of any age.

When I was in my late 20’s I decided to try something different as I was frustrated by the lack of control I had over my bowel’s and it angered me that this skin disorder was making such a simple action so complicated. I decided to try a more natural approach of simply increasing my fiber and liquid intake. I began eating prunes and drinking more water every day, and it worked! After a day or two, I began having regular bowel movements that were very soft, and while it was still painful, it was not as painful or traumatic as I had been enduring.

After a few weeks, I got tired of prunes so I started looking for other foods or products that would have the same effect. The other benefit of eating foods high in fiber was that there were no side effects like when I was taking the medications.

Please remember that I am simply relaying information that helped ME. I strongly recommend discussing any diet change with your or your child’s doctor before making any serious changes. Also, continue taking medications until discussing any changes with the prescribing physician.

Below is a list of high fiber fruits and veggies and snacks

Please remember that FRESH fruits and veggies have much more fiber, vitamins and minerals than canned.

Prunes  РPeaches  РCantaloupe  РWatermelon  РAll green veggies
– Plums – Nectarines – Grapes – Grapefruit – Honey Dew Melon –
Apricots – Apples – Pears – Oranges – Mandarin – Oranges

  1. Salad (darker lettuce and baby spinach has more fiber, vitamins and minerals than iceberg lettuce)
  2. Pretty much ALL forms of BEANS are high in fiber (they are effective although they do create more gas)
  3. Whole wheat bread (Brownberry whole wheat has 3 grams per slice and is the best tasting whole wheat I’ve found…It has a sweet taste and is yummy : )
  4. Weight watcher brand muffins and dessert cakes (generally found in the bread aisle)
  5. Slim fast brand muffin bars
  6. Polaner all fruit with added fiber
  7. Shredded wheat cereals (Fiber One brand has a shredded wheat cereal with a higher fiber content than regular brands)
  8. Oatmeal (several brands have many flavors with more fiber or added fiber)
  9. Fiber One pop tarts
  10. Fiber One brownies
  11. Boost Plus supplement shakes

For infants and those that are not crawling or walking, it is helpful to massage the abdomen as well as pushing the legs up towards the abdomen area (as if riding a bicycle). This helps move the fecal matter through the intestines. If the matter is firm or hard it can hurt as it moves through the intestines (cramping) as the tissue is sensitive. It best to limit milk intake as it does not provide as much hydration as water or juices. You can water milk down or add ice to it and add a touch of sweetner to make it taste better. I recommend using stevia or Agave Nectar sweeteners as they are all natural, do not raise blood sugar levels or cause chemical reactions (mood swings, hyperactivity etc…)

It is imperative that you increase your water intake (fluid) if you increase your fiber intake as the body pulls the water into the intestines to allow the fecal matter to soften. If you don’t drink enough water then your body is not hydrated enough to complete this process and the matter will become harder.

Below is a photo of the rectum of an RDEB patient. It depicts the trauma caused to the rectal area by the stretching of the skin from passing fecal matter. There is a permanent tear in the rectal wall from repeated ripping of the tissue during bowel movements.

 

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

CLICK HERE for the Spanish version

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!

Hints From Grandma Shirley

Grandma Shirley holding Nicky

Shirley, grandma and caregiver of Jennifer, an RDEB patient, shares her hints and tips and her knowledge about EB care with us.

Constipation

Hi all, I found this article in a pamphlet put out by dEBra International in their Nutrition section. Thought it might be helpful:

Constipation in babies and young children is often the result of an inadequate fluid intake, due to a reduced intake of feeds and/or increased requirements in hot weather. An EB sufferer with extensive blistering may have fluid requirements considerably above normal.
Constipation can be aggravated by iron supplements. It may also occur for no apparent reason. The frequency with which the bowels are opened is less important that the degree of discomfort felt. Provided the motions are soft and painlessly passed, it is not essential that the bowels are opened every day.
For an EB baby, straining to pass even a moderately bulky motion may cause pain and blistering of the delicate skin around the anus. Fear of pain on passing further motions can quickly lead to withholding the motion and before long a vicious cycle is set up as he becomes more constipated and appetite is reduced.
Because regular bowel movements also depend on a regular intake of food, a poor appetite and irregular feeds can lead to harder, drier motions.

The importance of preventing constipation cannot be overstated. Try to ensure a generous fluid intake i.e. at least 150 ml per kg ( 2 – 3 ounces per lb.) per 24 hours, for young babies who are not receiving fluid from foods. If your baby refuses plain, cooled, boiled water, offer well-diluted fresh fruit juice (i.e. 1 teaspoon juice diluted with 100 ml water) or give ready-to-feed baby juice diluted with an equal volume of water.
If extra fluid makes no difference to the constipation, try adding a teaspoonful of sugar to all baby feeds for several days. Alternatively, try giving the diluted juice from a tin (can) of prunes or the water in which dried prunes have been stewed. Once you baby is taking solids, try to include fruit and vegetable puree daily. From about nine months, offer wholegrain cereals such as Weetabix (English cereal – don’t know what the American version is), and from 10 – 12 months, include baked beans and sweet corn. The fiber in these foods, combined with adequate fluid (about 100 ml per kg. (1 – 2 oz. per lb), will help to keep the motions soft and they will be more comfortably passed. Unprocessed bran should not be given. If constipation persists despite these measures, a gentle laxative may be required. It is important to give this regularly as a preventative measure rather than waiting until he is very constipated. Discuss this with your doctor also.

Eye Abrasions

Here is the information I have learned from Jennifer’s experience with eye abrasions. Please discuss it with your doctor.

Jennifer has had eye “blisters” for many years. Before she came with me they were untreated and she has ended up with scar tissue on her left eye cornea. If this isn’t treated it can cause blindness. I took her to an optomologist who just happen to be familiar with EB, as he worked at St. Jude’s hospital and said there were children there who had EB. We were very lucky to have him. He did a thorough exam of Jenn’s eyes. This is what he told us:
EBer’s have a great tendency to “dry eyes”, as they are mucous membranes. He prescribed “Isopto Homatropine”. This is a drop that you put in the affected eye, and it dialates the pupil and relaxes the eye taking away the pain, and giving it a chance to rest and heal. They should be in a dark room as the pupil is dialated and light will cause damage. About five – ten minutes later eye OINTMENT should be put into the eye to keep them very moist. We use Refresh Plus Eye Ointment. The dosage – one drop three to four times a day – and the ointment as often as needed, even if it is every hour. After the eye begins to get better, use the eye drops, not the Isopto, again we use Refresh or Celluvisc Lubricant Eye Drops (I like this better – it is a little thicker) as often as necessary. When Jenn is on the computer I keep a box of Celluvisc right next to the PC and remind her often to use them, even if the eye feels good.
While she is going through the initial beginning problem it is VERY painful, swollen, red and VERY feverish. I put a few ice cubes in a clean white face rag and she holds that on her eye. This keeps the fever down and she uses MANY ice cubes, as they melt fast from the fever. Both of us dread this problem, as it is so painful for them.
I have no problem keeping her in a dark room, as she usually stays in bed for the three days, and sleeps…. Dr. Tether said the reason this happens is that EB will cause very dry eyes. When they sleep and go through the REM eye movements, their eyes blink and that scratches the eye lid and cornea, which cause the blisters. Also, as we all know they sleep with their eyes open slightly. Also, I keep Jenn’s hair back with a twister, especially at night, cause a little piece of hair that can get in the eye will also irritate the eye and cause a blister.

Prenatal Diagnose

There is now a test that can be done to see if the baby has EB. Then if he/she does, you will have to make a decision that of course none of us even want to think of – to abort or not. You will need to contact Dr. Angela Christiano – email addy: amc65@columbia.edu to get the details. She is the Dr. who invented this test. She is also very active in research for EB at a hospital in Philadelphia, Pa. It has been done and it works. There is another EB mom who decided to have more children and had this test done. Fortunately the baby did not have EB and all went well. Good luck.

Infections and Wound Dressings

A friend, Nancy has twins, 21 yrs, Katie and Kelley and shared this with me. Since it is for the good of all I want to share it also.

Regarding infections: Nancy suggested it is better to rotate topical antibiotics – gentamycin for about 3 wks to a month, then bactroban, and areas with a lot of discharge/seepage silvadene. She feels it confuses the bad bacteria, and I agree.
Some of the antibiotics you may want to mention to your Dr. are: Cipro, Cephalexin, Rifampin, Sulfa, Minocyclene, Augmentin, Vancomyacin. Cipro does not work for Jennifer. Some of these may not work on your EBer. A bath soak with epsom salts – half a quart size container to a tub of water. When there is a very stubborn infection that does not want to respond, try a vinegar bath – about a gallon of vinegar in a VERY full tub of water. Thanks to Nancy for this info.

For those of you anticipating Apligraf surgery. Jennifer had this done, and it worked about 70 % – better than nothing – right. Of course it will slough off as normal skin does, and then the bad gene will produce more bad skin – a catch 22. Here are some other options I have learned about:
We are planning to use one of these new options when the next skin graft is necessary – which appears to be soon – on her chest… : Oasis, Cook Manufacturing Company, Andy Cron, General Manager, 800-468-1379, EXT 3456, Fred Roemer, V.P.,800-457-4448 EXT 204. Mention Gary Cummings from Winfield Labs referred you – I will tell you about that in a minute.
There is a Silicon Gel Sheeting called Duo Dress manufactured to put over scar tissue to make it more soft and pliable, and possibly invisible. The only information I have regarding this is: Mark Dillon, President, BioMed Sciences, www.Silon.com I am not too familiar with this. It was mentioned to me by Gary Cummings and I have not had a chance to research this as yet. When I do, I will get back to all of you.
Of course there is the Ortec product called CCS (Composite Culture Skin), which FDA has just approved for use in the U.S. That is the product I am leaning toward for the next graft Jenn has.
I have been introduced to a wound contact dressing called N-terface this summer. I find it as good in a lot of ways as Mepitel, and cheaper. I am not saying Mepitel is not the best, it is just when you can’t afford it you take the second choice. They make several products and if you contact Gary Cummings, President, Winfield Laboratories, 800-527-4616. They make the N-terface and also Breakaway, which is a pad to go over the N-terface to absorb the excess seepage. Gary will send you samples I am sure. Please tell him I referred you. They are also working on a “vest” to cover a much larger area for those who need it. It is new, being introduced at the next meeting in California next week or two. He is sending me a sample. It is manufactured in China and is VERY inexpensive. These products work for Jennifer very well.
I just feel it important to share this with you all – it may work for your EBer also. Please let me know…. As most of you know Jennifer is just ending the Accutane Study at Chapel Hill – our last visit is Oct. 1 – 3. 2000. The Study will end in November. The results will follow a bit of time later as some are not finished for sometime. It does appear that FDA will approve the 5 year study. Soon as I can I will post from the results from the start of the Study in March to the end.

Blisters on the bottom

For Blisters on the bottom I suggest using a product called MEPILEX. It does have a sticky side which goes onto the wound. It will not stick to the wound, but will around the “good” skin. It comes off very easily with no damage. It will absorb the “seepage”, and can stay on until it is completely saturated. If it becomes saturated it will come off by itself. Instead of wrapping between the legs like a “vest”, we now use HYAFIX. It is the only type of tape we can use. It will come off very easily if you take a 4 x 4 (non-sterile), saturate it will alcohol and ease the tape off. The little bit of alcohol will not hurt the skin, just don’t get it on the wound. Place the MEPILEX on the wound and surrounding area about 1″, place about 2 – 4 x 4’s (sterile) over that, take the HYAFIX tape and criss cross it over the 4 x 4’s, just enough onto the “good” skin to hold it in place. Leave it on until the seepage comes onto the 4 x 4’s. You can also put your topical antibiotics onto the MEPILEX. Just keep it away from the outer edges so it will stick to the skin. If you put the anti close to the edges the MEPILEX will slide off the wound. The MEPILEX will act like a cushion and protect the wound. Try it, you’ll like it… ūüôā Also, for those of us who do not use MEPILEX, or prefer to use something else: in the past we have also used VISCOPASTE (this is gauze saturated with zinc oxide, and also MEPITEL. In this case, we cover the MEPITEL and/or VISCOPASTE with a sort of sponge called ALLEVYN, before we put on the 4 x 4’s. This absorbs the exudate. This is also a good method. The VISCOPASTE was especially effective. Zinc is good. There is another product called BREAKAWAY, that has a built in padding. It is also good. The diaper will also hold the bandage in place. Also, if it gets wet or dirty, just change the 4 x 4’s, that is of course if the MEPILEX is dirty also. Gee, I don’t mean to insult your intelligence.. Well I hope this helps. When Jenn was a baby and until she came with me in 1997, she had this problem. Now she has the scars to prove it… We do keep a nursing ointment (we call it BLUE GOO) on the scars if they look like they are starting to breakdown, and it works…. another thing that we have found as far as this is concerned has to do with bedding because it can be quite uncomfortable to sleep. We have found that babies sleep better on a sheepskin blanket.

Jennifer’s Experience w/Anemia

Jennifer had been going to Chapel Hill, NC to the EB Registry as she was on the pilot study for Accutane. We go every three months via Angel Flights. They do thorough lab reports on her each visit, and she is seen by Madeline Weiner and Dr. Jo-David Fine. In June, 2001 we all noticed that Jenn’s RBC (red blood count) was really dropping. At that time her Hematocrit was about 26, which is low. Originally it had been at 32, which was do-able. Normally the Hematocrit should be between 35 – 45. However, in EBers trends are very important. For example, when Jennifer’s Hematocrit was at 32, she did very well, but the Hematologist wanted it higher as there is a “leak in her bucket”. Will explain that later.

We got in touch with her doctor here in Indialantic, Fl. Doctor suggested we have her kidneys checked. Kidneys produce the erythropoietin which stimulates the bone marrow to make the red cells. The kidney doctor did a thorough exam and found the kidneys are functioning properly but we needed to see if they were producing the Erythropoietine. He referred us to a Hematologist and we saw him sometime in July. When they drew blood the first time her Hematocrit was down to 23. Very bad. The Hematologist ordered a “mid-Line” and she was given intravenous iron (ferritin) every day for two weeks. A mid-line is actually a line that is introduced through the blood vessel and goes up the arm to the shoulder area. A pic-line is the same thing, except it goes past the shoulder area and down close to the heart. With a pic-line you also need an x-ray to be sure the line is not too close to the heart. This is all done on a out-patient basis. You should not have them draw any blood from the mid/pic-line as it will clog up the line and cause a blood clot. This is not a blood transfusion. However, a blood transfusion works for some EBer’s; in this case it was not what Jennifer needed. This was done at the I.V. Therapy Lab. At the end of two weeks they drew blood again, and the Red Blood Count (RBC) had gone up, slightly, but not enough. The Hematologist then prescribed Procrit Injections (Erythropoietin) to be given – I believe this was done once a week, with blood drawn every two weeks. Procrit is a pharmacological erythopoietin and is usually used in patients with depressed bone marrow function. This is not the usual cause of anemia in EB patients and a hematological work-up should be done prior to treatment with this drug. Other causes of anemia will not be corrected with Procrit and there are risks involved with this treatment. Jennifer’s RBC and Hematocrit was coming up and the doctor suggested we continue once a week with the Procrit Injection, with blood drawn once a month to keep checking the hematocrit and rbc. Jennifer’s hematocrit is now at 37.5, which is good. There is a pronounced difference in Jenn’s energy level and her skin is really looking good. Jennifer still gets Procrit every Friday, and we see the Hematologist and have blood drawn once a month. A great description of why Jennifer may need the Procreit for a long time – maybe not every week – but every two weeks or once a month – picture a large bucket full of liquid, with a tiny pin-hole leak in the bottom of the bucket. If you do not take measurements to keep the bucket full, eventually you will empty the bucket. EBers bleed constantly – as their wounds always have some seepage, being blood or some other liquid, usually blood. So it is very important to keep that “bucket full”. ūüôā

As we all know, each EBer is different. This was extremely beneficial for Jennifer and that is why we want to pass it on. It may be a good thing for your EBer. Anemia is very prominent in EB and it is so important to keep up their Red Blood Count and Hematocrit.

Anemia is caused by a various number of different causes. First you must establish what is the reason for the Anemia through a Hematologist, and then follow the advise of that doctor.

Cradle Cap

We soak the scalp for 15 minutes with Acidic Solution, and it consist of 8 O.Z of saline and 2 O.Z of White Vinegar. And then we put the Olive Oil on the scalp and below is how we do that.

We bought Olive Oil and I part Jenn’s hair where I can see the areas that are dry and I take a 4×4 sterile pad and puts some Olive Oil on it and rub it GENTLY to massage the Olive oil in her head & hair. We put it in my hair every day. If you want it to work leave the Olive oil in the hair for about One day to Two days.. Check for Order, this will give you an idea when to wash the hair or if you can leave it for another day.. If you smell an order you NEED TO WASH hair, and then put the Olive Oil in the hair again.. The scabs that form with come off, but you need to help me a little bit.. If it doesn‚Äôt come off will just a LITTLE force then leave it and put Olive Oil on it.. This method has worked for me and I am sure that it will hopefully work for you all.

Love to all

Dealing with Insurance Companies

By Melanie (Logan) England
(this information formerly on the EBmommas website)

Ignorance is not bliss. 90% of Epidermolysis Bullosa related claim denials from insurance companies are due to ignorance of this rare disease. As if you did not have enough to do, it is now your job to educate them on EB. People who have never seen a child with EB simply cannot fathom why we need all these bandages. Here are some steps to take to get your insurance company to work for you:

-Ask your doctor to write a plan of treatment that details the types and amounts of bandages needed for each dressing change and how often dressing changes should be done. Send a copy to your insurance company. Often since mom or dad knows the family routine best the doctor will allow you to write this yourself then they will review and “sign off” on it.
-Insist that your insurance company assign you a case manager. Having one person who can become familiar with both EB and your individual case can be invaluable. Send the case manage pictures of your unbandaged child. Pictures speak a thousand words.

Getting your claims processed

-Keep a copy of EVERYTHING! It’s much better to deal with piles of papers that to find you are missing an important form or piece of documentation.
-At each doctor’s appointment or hospital stay ask for at least two itemized copies of your bill. One for you, one for the insurance company. Almost all insurance companies will require an itemized bill rather than a receipt.
-If you have to complete your own claim forms, ask your insurance company to send you a stock of forms so you don’t run out. Make a copy of each form you fill out for your personal records, recording on it the date you mailed it in.
-Deal with a pharmacy that uses a computer system that allows them to make you a printout of all your prescriptions.

What to do when a claim is denied

-Ask your insurance company for a claim rejection in writing specifying why the claim was denied.
-Immediately file an appeal. Ask that your claim be examined by the companies’ medical review board.
-Ask each and every doctor or therapist who follows your child’s care to write a letter to the company on your behalf. Ask that they detail why the treatment or prescribed item is medically necessary and the possible complications of your child not receiving them. Keep a copy of these letters for your records.
-The best way to get a timely response for your appeal is to politely state in your letter that you will expect a response within a set period of time (ie;30 or 60 days), or you will contact your state insurance commission.
-Keep a phone log of every phone call to and from your insurance company. Note the date, time, who you spoke to and a summary of the conversation.
-Provide the insurance company with as much information as possible that supports your claim. Photographs, medical records, medical articles, and names of insurance companies that do pay for the same services or supplies.

What to do if none of the above works

-If you don’t receive a timely response or your appeal is denied, do contact your state insurance commission. Send copies of all the denied claims, all the documents you provided the company, a copy of your phone log and all of their written responses to you. State in your letter that you are filing a formal complaint about the company. The commission will document your complaint and ascertain if any further action can be taken against the insurance company. Below is a listing of the address and telephone number of all 50 states insurance commissions. We also recommend to check out information provided from the Insurance Partnership company, which is one of the best companies you could rely on now a days

Alabama Department of Insurance
135 South Union Street
Montgomery, AL 36130
Phone: (334) 241-4126…..Licensing Manager
Phone: (334) 269-3550

Alaska Division of Insurance
Anchorage Office:
3601 C Street, Suite 1324
Anchorage, AK 99503-5948
(907) 269-7900 (phone)
(907) 269-7910 (fax)
Juneau Office:
9th Floor State Office Bldg
333 Willoughby Ave (99801)
PO Box 110805
Juneau, AK 99811-0805
(907) 465-2515 (phone)
(907) 465-3422 (fax)

Arizona Department of Insurance
INSURANCE LICENSING SECTION
2910 North 44th Street, Suite 210
Phoenix, Arizona 85018-7256
Phone: (602) 912-8470
Fax: (602) 912-8453

Arkansas Insurance Department
1200 W. Third St.
Little Rock, AR. 72201
Phone: (501) 371-2600

California Department of Insurance
License Bureau
320 Capitol Mall
Sacramento, CA 95814
E-Mail: General Information
Phone: (916) 322-3555

Colorado Division of Insurance
1560 Broadway, Suite 850
Denver, CO 80202
Phone: (303) 894-7499

Connecticut State Department of Insurance
LICENSING DIVISION
P O Box 816
Hartford, CT 06142-0816
Phone: (860)297-3845
Fax: (860)297-3872
Director: Raymond Claytor

State of Delaware Insurance Commissioner’s Office
Wilmington Office:
1st Federal Plaza
710 North King Street
Wilmington, De. 19801
Phone: (302) 577-3119

Dover Office:
841 Silver Lake Blvd
Rodney Building
Dover, De. 19903
Phone: (302) 739-4251

Florida Department of Insurance
200 East Gaines Street
Tallahassee, Florida 32399-0300
Phone: (904) 922-3100

Georgia Insurance Department
716 West Tower
2 Martin Luther King Jr. Drive
Atlanta, GA 30334
Phone: (404) 656-2070
Phone: 1-800-656-2298

State Of Hawaii Insurance Division
250 S. King Street, 5th Floor
Honolulu, Hawaii 96813
Phone: (808) 586-2790

Idaho Department of Insurance
Licensing Division
700 West State Street
P.O. Box 83720
Boise, Idaho 83720-0043
Phone: (208) 334-4342
Fax: (208) 334-4398

Illinois Department of Insurance
320 West Washington Street
Springfield, Illinois 62767-0001
Phone: (217) 782-4515
FAX: (217) 782-5020
TDD: (217) 524-4872
or
Illinois Department of Insurance
100 West Randolph
Suite 15-100
Chicago, Illinois 60601
Phone: (312) 814-2427
FAX: (312) 814-5435
TDD: (312) 814-2603

Iowa Insurance Division
Lucas Building, 6th Floor
Des Moines, IA 50319
Receptionist: (515) 281-5705
E-mail: General Info.

Kansas Insurance Department
420 SW 9th St.
Topeka, Ks. 66604
Phone: 913-296-3071
Fax: 913-296-2283

Kentucky Department of Insurance
Agent Licensing Division
Post Office Box 517
Frankfort, KY 40602
Toll Free: (800) 595-6053
Phone: (502) 564-6004
Fax: (502) 564-6090

Louisiana Department of Insurance
Office of Licensing & Market Compliance
950 N. Fifth St.
Baton Rouge, LA 70804-9214
Phone: (800) 259-5300
or 5301 / (504) 342-5900

Maine Bureau of Insurance
Department of Professional and Financial Regulation
Bureau of Insurance #34 State House Station
Augusta, Maine 04333-0034
Phone: (207) 624-8475
Fax: (207) 624-8599

Maryland Insurance Administration
501 St. Paul Place
Baltimore, Maryland 21202-2272
Phone: (410) 333-6300
or 1-800-492-6116
Michigan Insurance Bureau
Mailing address
For US Postal Service mail, use this address:
Michigan Insurance Bureau
P.O. Box 30220
Lansing, MI 48909-7720
Delivery (street) address
For overnight services, UPS, or freight deliveries, use this address:
Michigan Insurance Bureau
611 W. Ottawa
Lansing, MI 48933
Receptionist: (517) 373-9273
General Information (Recorded Menu) (517) 373-0220
Licensing – Agents/Agencies (Recorded Menu) (517) 373-0234
Fax: (517) 335-4978

Minnesota Insurance Division of the Department of Commerce
133 East Seventh St.
St. Paul, MN 55101
Phone: (612)297-7161

Mississippi Insurance Department
P.O. Box 79
Jackson, MS 39205
Phone: (601) 359-3569
Fax – (601) 359-2474

Missouri Department of Insurance
P.O. Box 690
Jefferson City, MO 65102-0690
(573) 751-4126

Nebraska Department Of Insurance
Terminal Building
941 “O” Street, Suite 400
Lincoln, NE 68508-3690
Phone: (402) 471-2201
TDD: (800) 833-7352
Voice: (800) 833-0920

Nevada Department of Business & Industry Division of Insurance
Carson City/Reno
1665 Hot Springs Road, Suite 152
Carson City, Nevada 89706-0646
Phone: (702) 687-4270
Fax: (702) 687-3937
Las Vegas
2501 East Sahara Avenue, Suite 302
Las Vegas, Nevada 89158
Phone: (702) 486-4009
Fax: (702) 486-4007
E-Mail: Department Mailbox

New Hampshire Department of Insurance
Carol Beaudoin, License Supervisor
NH Insurance Department
169 Manchester Street, Concord, New Hampshire 03301
Phone: 271-2261 Fax: 271-7029

New Jersey Division of Insurance
20 West State Street
P.O. Box 325
Trenton, N.J. 08625-0325
Telephone: (609) 292-5360

New York State Insurance Department
New York City
25 Beaver Street
New York, NY 10004
Phone: (212) 480-6400

North Carolina Department of Insurance
P.O. Box 26387
Raleigh, NC 27611
Phone: (919) 733-7343
Fax (919) 733-6495

Ohio Department of Insurance
2100 Stella Ct.
Columbus, OH 43215-1067
Phone: 1-800 686-1526

Oklahoma Department of Insurance
3814 North Santa Fe
P.O. Box 53408
Oklahoma City, OK 73152
OKLAHOMA CITY AREA (405)-521-2828
In State Toll Free (800)-522-0071
Fax Phone Number (405)-521-6652

Oregon State Insurance Division
Phone: (503) 947-7984
E-Mail: Insurance Division

Pennsylvania Insurance Department
1326 Strawberry Square
Harrisburg, PA 17120
Phone: (717) 787-2317

Rhode Island Department of Business Regulation
233 Richmond Street
Providence, Rhode Island 02903
Phone: (401) 277-2246
FAX: (401) 277-6098
TDD: (401) 277-2223

South Carolina Department of Insurance
P.O. Box 100105
Columbia, South Carolina 29202-3105
Phone: (803) 737-6095
Fax: (803) 737-6232

South Dakota Division of Insurance
118 W Capitol
Pierre, SD 57501
Phone: (605) 773-3563
Fax: (605) 773-5369

Tennessee Insurance Division
500 James Robertson Parkway
Nashville, Tennessee 37243-0574
Phone: (615) 741-2693

Texas Department of Insurance
333 Guadalupe
Austin, Texas 78701
E-Mail: Elton Bomer
Phone: (512) 322-3503
Fax: (512) 322-4380

Utah Department of Insurance
3110 State Office Bldg.
PO Box 146901
Salt Lake City, Utah 84114-6901
Phone: (801) 538-3800
Fax: (801) 538-3829
TTY: (801) 538-3826

Vermont Division of Insurance
89 Main St (City Center)
Drawer 20
Montpelier VT 05620-3101
Phone: (802) 828-3303
Fax: (802) 828-3306

Washington State Insurance Commissioner
P.O. Box 40255
Olympia, WA 98504-0255
E-Mail: Kacy Brandeberry
Phone: (306) 407-0341
Fax: (306) 438-7629

West Virginia Board of Risk & Insurance Management
4501 MacCorkle Ave. SW
300 Ghannam Bldg.
South Charleston, WV 25309
Phone (304) 766-2646
Fax (304) 766-2653
toll free inside WV 1-800-345-4669

State of Wisconsin Office of the Commissioner of Insurance
121 East Wilson Street
Madison, Wisconsin 53702
Phone: (608) 266-3585
Madison: (800) 236-8517
Statewide: (800) 947-3529
(TDD) (ask for 608-266-3586)
Fax: (608) 266-9935

Wyoming Insurance Department
122 W. 25th Street
3rd Floor East
Cheyenne, WY
82002-0440
Phone: (307) 777-7401

Helpful Words for New Parents

Taken and adapted for EB from the Down Syndrome for relatives page website

I cannot stress enough how important it is for family to support the new parents at this time. This is a frightening time for the new parents and they often wonder how their family will treat the new baby. Showing how much you love them and their new baby will help to alleviate these fears; “gently” pick up the baby, fuss over the baby, play with the baby. Sometimes you may not know the right thing to say or what you say, is in fact, the wrong thing.¬† The following suggestions are based upon the input of many parents of children with EB and Down Syndrome.

Things NOT to say
These are the things that parents have said really upset or angered them:

“I’m sorry”, “Poor___” (either you or the baby) or any form of pity.
Pity is not what parents want or need. What they need is love and acceptance of their baby.

“God gives special parents special children” or any variation.
The new parents probably don’t feel very special right now. Also, some parents may be a little mad at God. Trying to make them feel better with words like these might be appreciated by some parents and not by others. It is best to avoid this.

“Do they know how serious it is?” or any variation.
This is a demonstration of a lack of knowledge about Epidermolysis Bullosa. Some parents may be angry and want to reply with, “How serious is it? Well, every part of his body can and will blister… he can die at anytime… is that serious enough?”

“You are handling this better than I could.”
This is an invitation for the new parents to say something like, “No, you would be wonderful.” Suddenly, the conversation has switched to you instead of the parents and their new baby. Plus, you don’t really know how the new parents are handling it, do you?

 Things TO say
These are the things parents have found comforting or made them feel good:

“Congratulations.”
They just had a baby! What better response to show that you love them and their baby than to say congratulations. It made us feel like ‘normal’ parents when someone said that to us. If the hospital allows it, a bottle of champagne could be greatly appreciated.

“He/She looks just like you.”
Or similar comments you would have said to the parents if the baby would have been born healthy. This tells the parent that you can see the child behind the disability.

Friends and family who actually ‘did’ something like read about the disability (or find information on the web!)
This really means something to the new parents. It shows love and concern for the baby.

Offer to baby-sit.
It is a fear of the new parents that their family will not accept the new baby. Especially with babies with EB, most people are afraid to hurt the child. By saying something like, “Well, when are you going to let me baby-sit?” you are showing the new parents that you want to be part of the baby’s life. This will be a great relief to them. Of course, due to the fragile nature of and EB child, you will probably never baby-sit this child, and it’s important that you do not get offended by this. But knowing that you care enough to offer means a lot.

“He/She will do fine.”
The new parents are probably pretty worried. They might not know much about EB, and they may be concerned about possible medical problems. Having a positive attitude will rub off on them. They don’t need pessimism or negativity from their loved ones.

“We’ll all learn from him/her.”
This is another good way to show that you intend on being part of their lives. After all, how can you learn from their new baby if you are ashamed of him/her? Their new child will be an opportunity to learn about love, acceptance, and respect for the disabled.

“We will always be here to help.”
Another very good way to show that you are going to be there. Let the new parents know that you intend on being part of their lives. But don’t just say it without doing nothing afterwards, actually plan how you’re going to be there for them, otherwise they are just meaningless words, and the new parent will resent it.

 FOR DOCTORS/NURSES

Disability Etiquette: Some Do’s and Don’ts-from the Parents’ Perspective
Tips to Make the Office Visit Better for Everyone

The following suggestions have been compiled from parents of children with special health care needs across the country:

DO respond positively to our children in your initial interaction. Tell us they are cute, sweet, cool, that they are wearing a neat hat. Let us know that you value them even if you can’t cure them.

DO ask questions of our children, even if the child can’t speak. Show your recognition and respect. Don’t worry; his parent will find a way to facilitate the communication.

DO look at our children when you are talking to them. Please make every effort to establish a personal connection.

DO get down to our child’s level. For example, if our child is in a wheelchair, kneeling or sitting down will help make him feel more comfortable.

DO realize that sometimes parents are very tired of telling their story over and over. Even though you may have your own personal medical interest, don’t ask if you don’t need to know. Be understanding if the parent shows frustration at telling the child’s story yet again.

DO notice and be attentive to brothers and sisters. They have grown up in a situation where their sibling, by necessity, has received lots of extra attention. They don’t understand why they shouldn’t be just as entitled to a sticker or balloon.

DO be aware that our grief and sadness may recur at any time and often does at transitional times-beginning pre-school or high school, the day of the senior prom, an anniversary of another loss. It’s never resolved entirely.

DON’T ask questions or raise issues that could be painful for us (and our child) in front of our child. If you need to understand more about the birth history, for example, find a way to talk separately with the parent. You should never assume our child doesn’t understand or doesn’t have feelings.

DON’T refer to our children by their diagnoses (e.g., “EB kid,” “Downs” kid); it’s a good habit to develop no matter with whom you’re talking.

DON’T judge parents; we are doing the best we can often under difficult circumstances. If we are impatient or rude, it may be that we are under particular stress.

DON’T be surprised if we need instructions, procedures or explanations repeated several times, especially if the information is complicated, upsetting or unexpected. We are often thinking about a million other things and we are trying to synthesize what you have to tell us at the same time.

¬†Silva, TJ, Sofis LA, Palfrey JS. 2000. Practicing Comprehensive Care: A Physician’s Operations Manual for Implementing a Medical Home for Children with Special Health Care Needs. Boston, MA: Institute for Community Inclusion/UAP, Boston

Plane Trip Tips: Flying with EB kids

By Sheri Coil

Reservations:
When making your reservations, explain about your situation and EB and ask to reserve the bulkhead seats where there is more room.

Pre or Early Boarding:
Most all airlines provide for early boarding for the elderly, babies and the handicapped, but not all do this automatically. With some airlines you have to ask for them to let you pre-board. So ask while you are checking in.

Soft Stuff:
Take a sheepskin or fuzzy blanket (especially handy in case of turbulence), cuddly lovies, stuffed toys.

Snacks:
Be sure to take food and drink that your child can and does eat. Things like pediasure, juice in small travel containers, finger foods. The airline offerings are often less than perfect for our EB kids to eat.

Busy Things:
Pack appropriate things that will keep your child entertained on long trips or if you may have long layovers or waits in airport lounges. Things like coloring books and markers or crayons, books to read or be read out of, hand held games (that are silent or have a sound off button) are good to take. Another idea is to bring some new small toys they have never seen.

Carry On:
It is a good idea to carry on two bandage changes and at least one change of clothes for your little person. Also, be sure to have at least several days worth of any medications. Lost luggage is a fact of life with the airlines today. Be prepared for it by carrying what is most important, like medical supplies for a couple days. If you are going to be staying somewhere for any amount of time, send excess supplies of bandaging and a few favorite toys ahead

Mobility:
Make sure your wheelchair or stroller is designated “gatechecked” at the ticket counter.¬†You will be able to take it right into the door to the plane, get out and then they will stow it for you, to be returned upon landing at the door of the plane again.

Not So Nice:
Unfortunately not everyone is kind and open-minded or understanding.¬†In fact some airlines have been known to be downright nasty and suspicious of people with EB.¬†They have been refused boarding because someone takes it upon themselves to decide that the innocent is guilty of having some sort of contagious pox disease until proven innocent.¬†Thus, it is advisable to carry literature on EB and a Dr’s clearance that your child is not communicable and has a genetic condition.¬†As much as it does not seem right to have to do this sort of thing, it could save a lot of heartache at the gate.