Ronald McDonald House

                   Ronald McDonald House


Everyone has heard of the Ronald McDonald House's but how many of you have ever actually seen or visited one?  I know when I was growing up I would hear about them but I never saw or heard any real information about them except they were a place for families to stay who had children in the hospital.

What no one talks about is how wonderful they are.  Several years ago I went to my first EB Center clinic visit at Cincinnati Children's Hospital and Medical Center.  Even though I am an adult with no children, because I have EB and was being seen at CCHMC I qualified to stay at the Ronald McDonald House.  At that time I was going through a very difficult time physically, emotionally and financially and I had absolutely no money to pay for anything so I was nervous about staying there as I felt I would be looked down on or made to feel unwelcome since I could not afford to pay the miniscule fee they ask for.


I could not have been more wrong.  The staff at the house was so friendly, kind and welcoming.  They treated me with dignity and respect and it did not matter to them that I could not afford to pay.  One of the staff members took me into a comfortable office/conference room to go over the registration process.  When the subject of the $25 nightly fee was brought up I explained my situation and that I was not able to pay.  She simply gave me one financial aid form to fill out, which was the proof they need for their records explaining why I could not pay, and it was never mentioned again.  After the papers were signed she gave me a canvas bag filled with goodies.  I was so surprised!  It was filled with toiletry items, puzzle books, a handheld electronic massager (with batteries included!), notepads and pens, a small handmade blanket, a soft, fluffy bunny and much more.  I was overwhelmed with gratitude and near tears when she handed me the bag.  Everyone I met there treated me with compassion, dignity and respect and I was made to feel so welcome and loved.  Ronald McDonald House's are not just a place to sleep at night and store your belongings while you are at the hospital.  It truly is a home away from home. 


Ronald McDonald House by most Children's Hospital's.  The Ronald McDonald Houses (RMH) are amazing.  You never hear about them or how much they help people.  Their general nightly rate is $25 (it may be different in other states but it shouldn't be much more than that) and if you can't pay that much then you pay as much as you can, even if it's only $5 a night.  If you can't afford that, you fill out a financial aid form and if you qualify you pay nothing.  There are other ways to help raise funds for the RMH.  They have yearly 5K runs, there are the boxes at every McDonald's inside AND at every drive thru so if you aren't able to pay for your stay there are other ways you can help :)

They have a large kitchen/dining area that has, within it, 4-6 full kitchen areas (counter, dishwasher, stove, oven, microwave, sink, dishes, utensils etc...) that you can you use for cooking your own meals.  You get your own pantry, refrigerator and freezer space for your groceries, however, there are volunteers that cook dinner every day of the week (included in your stay) and often volunteers that cook lunch as well.  They have a pantry with dry and canned foods that you can use and cook for yourself or if you want to make a special treat for the other guests.  You are just asked to clean up after yourself.  They also supply dairy products (Milk, eggs, yogurt, butter, cheese) and basic staples like bread, peanut butter, jelly, condiments and applesauce and juices.  There are always leftovers from a previous meal and you are encouraged to eat leftovers so they don't have to be thrown out, but you don't have to.  I bought groceries but honestly, I never used any of them during my stay.  I didn't need to.  

They also have laundry facilities, multiple entertainment areas with TV, VCR/DVD and a movie selection you can borrow movies from.  Their is a PC and Internet station, library and craft room.  They offer free tickets to local attractions (Zoo's, Aquariums etc...) and also have outdoor play areas.  The only thing is that rooms are on a first come first serve basis.  You call the RMH 24 hours before your appointment and they put you on the waiting list.  Normally, by the time you arrive or later that day they may have a room for you.  There is a possibility you might have to stay a night in a hotel while you are waiting for a room to open up, but they will get you in as soon as possible.  I only had to stay one night in a hotel, but I know many others who didn't have to.  It just depends on how full they are.  There is no time limit for your stay.  As long as you or your child is either in the hospital or being treated out patient by the hospital then you can stay as long as you need to.

Fecal Hoarding and Constipation in EB

                 Fecal Hoarding and Constipation in EB  


“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 products

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

Prunes      Peaches         Cantaloupe    Watermelon    All green veggies

Plums        Nectarines    Grapes         Grapefruit     Honey Dew Melon

Apricots   Apples           Pears           Oranges         Mandarin Oranges    

Salad (darker lettuce and baby spinach has more fiber, vitamins and minerals than iceberg lettuce)

Pretty much ALL forms of BEANS are high in fiber (they are effective although they do create more gas)

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 : )

Weight watcher brand muffins and dessert cakes (generally found in the bread aisle)

Slim fast brand muffin bars      Polaner all fruit with added fiber

Shredded wheat cereals (Fiber One brand has a shredded wheat cereal with a higher fiber content than regular brands)

Oatmeal (several brands have many flavors with more fiber or added fiber)

Fiber One pop tarts   Fiber One brownies    Boost Plus supplement shakes

For infants and those that are not crawling or walking, it is helpful to massage the abdomen, with extreme caution so as not to traumatize skin, 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 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.

Breakthrough in Gene Therapy

           Breakthrough In Gene Therapy = HOPE for Those With EB

After years of research, clinical and human trials, Dr Jakob Tolar, University of Minnesota, and his team, have finally made the breakthrough they have been working on, which is finding a way to allow those with Epidermolysis Bullosa, often referred to as EB, to be able to grow their OWN collagen VII protein.  This protein is what those with EB are genetically unable to create and is what allows our skin to adhere to itself.  This breakthrough in gene therapy gives HOPE for those with EB that soon they may also see the benefits of FINALLY being able to grow healthy, durable skin.

Below is the article that focuses on Charlie and his journey through multiple  Bone Marrow Transplant's and the medical, personal, emotional, mental and financial highs and lows of his and his families journey.  Thank you to Charlie and his family, and all those who underwent this process before him, for having the courage and strength to make this journey which has made it possible for future generations of those with EB to finally have HOPE that their futures will not be filled with pain, bandage changes and everything that comes with having Epidermolysis Bullosa, which can also often be fatal. 

http://www.startribune.com/lifestyle/health/218242151.html?page=all&prepage=2&c=y#continue 

 

National Epidermolysis Bullosa Awareness Week 10/25 - 10/31

National Epidermolysis Bullosa AwarenessWeek 
                   October 25 - October 31

What is it like?
By: Jennifer Lyric Bolles
Rdeb, Inversa

What is it like?

To wake up, hop out of bed, throw some clothes on and run out the door to complete errands or just have fun?

What is it like?
To NOT be in pain and no matter how you move, or how many pills you take, that pain is always there.

How does it feel?
To NOT be stared at, whispered about and openly judged by the ignorant masses.

How does it feel?
To ONLY go to a dr appointment because you have a cold?

How neat would it be?
To eat whatever you wanted and not worry that you may cause blisters in your mouth or choke when you swallow.

How neat would it be?
To take a bath and...ENJOY IT!

How much would I love?
To spend a day having fun and NOT worry about being too exhausted to enjoy it.

How much would I love?
To be seen as a person and not someone who bails on most social events b/c "I'm just too exhausted, or in too much pain"

How great would it be?
If I could be free. Free to run, free to play, free to be me.

How great would it be?
If there was a way, to take away pain, at least for a day.

What is it like?
For you to be...you?

Written by: Jennifer Lyric Bolles
RDEB, Inversa

The above is why we need awareness. So that EB is NO LONGER the "worst disease you've never heard of" and one that is a commonly discussed medical issue like Autism, ADD/ADHD, MS, Down Syndrome etc...Let's add EB to that list. The list of medical issues EVERYONE knows about, even if it is only explained with 2 letters. PSST!!!! Pass it on...National Epidermolysis Bullosa Awareness Week October 25 - October 31 :)

Vicks Vapor/Mentholated Rub

                        Vicks Vapo Rub OR any generic Mentholated Rub

Is AWESOME to help with Itching and pain.  It also has healing capabilities.  This tip was given to me by a friend who also has EB.  She has been using it her whole life for the above reasons.  When she posted about it I was skeptical.  

I thought it would BURN and I was hesitant to try it however, one hot, itchy day I was desperate and I tried it.  I was AMAZED!  It instantly stopped the itching, providing a cool, tingly effect that stayed for hours.  I was not itchy all day!  

I have never taken medications for itching, only used hard plastic ice packs, which are an amazing help but not very practical for daytime use unless laying down.  I still use ice packs while I sleep to help keep my skin temp lower to help prevent night time itching BUT my itching (overall) has been reduced by about 80% since I started using mentholated rub.  

I use a very small amount, about the size of a pea for a 4x4 in area.  I also tried it directly on an open wound and it did NOT burn!! (when using on kids they may mistake the cooling effect as burning so maybe ask them if it burns or just feels really cold). Short post today but wanted to share that with everyone :) 

Here are some comments from other EB patients/caregivers who have tried the mentholated rub:

Mother of child with EB: "Vicks VapoRub totally worked! After a year of M's scratching keeping a spot on his neck open and raw, it's almost healed. AMAZING!!

Jessica G: "im so glad someone else is having the same success with the itching relief i did"

From Chrissy W. whose son has EB, "I tried the vicks on Z. last night. He said it burned when I put it on but I did touch an open sore that I didn't know was there so I don't know if the vicks really did burn or if I just hurt him when I touched the spot. I put it on all the spots that he is most itchy and this morning he woke up with all his bandages in place. He said he didn't itch last night and was so proud of himself for not pulling any bandages out :) I'm going to continue to use it and see if it really does burn at first or if I just hurt him. I put it on again tonight and he said it burned (this time I put it on the bandages, not actually him) so I asked if it burned or just felt really cold, he said really cold. Thanks again for the info."


Love, Light and Blessings!

Medihoney and Hibiclens

                     Medihoney and Hibiclens

Hibiclens is an antimicrobial skin/wound cleanser.  It is effective in killing bacteria/infections like Staph, pseudomonas and MRSA.  When used properly Hibiclens continues to keep these bacteria from growing on the skin for 6 hours after using it.  For those that do NOT deal with wounds it is recommended to cleanse with it at full strength, 

HOWEVER, for those with EB I would NOT recommend using it at full strength.  Full strength Hibiclens can cause stinging, burning and intense itching BUT if you dilute it before applying you should not have any of these issues.  Hibiclens is comprised of 4% w/v Clorhexadine Gluconate (chemically unique cationic bisbiguanidewith inactive ingredients of: fragrance, 4% isopropyl alcohol, purified water, Red 40, and other ingredients in a mild sudsing base adjusted to pH 5.0-6.5 for optimal activity and stability as well as compatibility with the normal pH of the skin). Ingredient info provided from Hibiclens.com

Many pharmacies, like Walgreen's and Cvs, offer a generic version of Hibiclens with the same ACTIVE ingredient of Clorhexidine Gluconate HOWEVER, I have found that the generic forms actually cause severe burning and itching, even when diluted, as well as smell very strong and unpleasant.  It is better to spend the few extra dollars for the name brand.  Also, National Rehab, as well as most pharmacies (speak to the pharmacist) sell 64 ounce bottles of Hibiclens for under $20, which is an awesome deal so I strongly recommend purchasing it from them as you get much more for your money than by buying smaller bottles.  I believe they do have smaller sizes as well if you don't want such a large bottle.  There is also a 16 ounce bottle that comes with a pump (which I love and makes dispensing much easier, especially when bathing young kids).  You can get the 16 ounce pump bottle and purchase the larger 64 ounce bottle and use it to refill the pump bottle :)

I have stated above that when using on wounds it is best to dilute Hibiclens.  Let me clarify that by saying you don't want to dilute it so it is not as strong but to add something to it.  I use Hibiclens in two ways.  The first is to add about a teaspoon to a bath puff along with 2 or 3 pumps of Dial Antibacterial Shower Gel (or whatever cleanser you use) and then suds the puff and wash entire body EXCEPT raw wound areas (If using the pump bottle I add 2-3 pumps to the puff and 1-2 pumps for hand washing as well as the same amount of shower gel and follow sudsing directions).  

For wound areas I put about a half teaspoon in the palm of my hand as well as 1-2 pumps of the shower gel and suds together and gently wash/pat the wounds with the mixture, allowing it to sit on the wound for about a minute.  You don't want it to stay on the wound for longer than 5 minutes and really a minute or two is long enough.  One way to do this without having a clock, if you have more than one wound area to cleanse, is to cleanse each area and then once you have covered all areas with the suds mixture rinse it off by starting with the wound that you washed FIRST.  Or u can just do a mass rinse with the shower or a cup of water if bathing smaller children.

It is NOT recommended to add Hibiclens TO the bath water but it is OK to sit in a bath and wash with the hibiclens and have it rinse off the body and into the bath.  By the time it is rinsed off it is broken down and not strong so should not cause irritation.  The reason it is not recommended to add to bath water is that it can cause irritation in genital areas.  Again, if you're bathing with it, it is OK to do so in a bath as once you rinse it off it is no longer as strong and shouldn't cause any irritation issues.  You do not have to rinse off with clean water after bathing with Hibiclens like you do if you take a bleach bath.

Below are two sites that will give you all the info you need on Hibiclens :) 

http://www.hibiclens.com/

http://en.wikipedia.org/wiki/Hibiclens

 

Medihoney

Medihoney is AWESOME!!  When I began using Medihoney I had 8 non healing wounds.  They were deep and angry and they HURT.  When I went to my first EB Clinic Visit at Cincinnati Children's Hospital and Medical Center in Cincinnati, OH I learned about Medihoney.

Medihoney is lab created honey.  This means it was made in a completely sterile environment.  Honey has been used for hundred's of years (probably longer but I didn't do the research) for healing.  It DOES NOT allow bacteria to grow as well as gently dibriding wounds and killing the bad bacteria that is causing infection.  It comes in a few forms and I will detail those further down.  I use Medihoney gel, as that is what insurance's will pay for and it comes in a tube.  I used Medihoney, Mepilex Bandages and Mepitel and within about 3 months 6 of the 8 non healing wounds were healed!  It took a bit of time but it was because they were so deep and raw.  

On my first use of the Medihoney i found out really quick that on a raw, fresh wound it BURNED and would cause the area to be red, inflamed and irritated.  SO, I had to wait a day or two after a new wound or large blister (turned wound) appeared before using the Medihoney.  You can mix a small amount of aquafor with the Medihoney to help keep it from burning and irritating the fresh wounds.  After a day or two it wouldn't be as 'fresh' and I could use the honey straight.  

At first, using the honey was messy, and sticky and itchy and difficult to wipe off if it dripped or soaked through a bandage.  I wondered if there was a way I could keep this from happening and mixing aquafor with it eliminated these issues.

There are still two areas that are issues.  One of which will never heal as it is traumatized daily (no, I can not keep the area from being traumatized).  The other area heals and re blisters on a weekly basis BUT the medihoney keeps each area healthy with no infections.  The reason it will not completely heal is that it has simply been traumatized too much for too long and the skin is just not strong enough.

Another trick I learned to help keep the mess to a minimum was to put the honey or honey/aquafor mixture on the bandage first and then apply the bandage to the wound.  When trying to put the honey on the wounds it would get warm (from my skin temp) and would start to drip everywhere and it was just a mess so when i put it on the bandage it stayed room temperature and did not drip.  

If I am mixing aquafor with the honey then I cleanse my hands and put the desired amount in the palm of my hand and then add a bit of aquafor and mix together with my finger.  Some people will do the mixing in a disposable cup but I have found this is the easiest and most convenient way for me to do it.  Once it is mixed I apply the appropriate amount to the bandage, apply to wound and cover.  Since I began using LESS honey and also adding aquafor for some of the wounds I have not really had any issues with messy, sticky bandages!  It can take a few tries to get it right so you  don't have such a mess but it's definitely worth the effort!!

http://www.dermasciences.com/products/advanced-wound-care/medihoney/inside-the-u-s/ 

http://www.bing.com/images/search?q=medihoney&qpvt=medihoney&FORM=IGRE

http://www.nasdaq.com/article/derma-sciences-receives-ce-mark-for-medihoney-hcs-20120710-00293