Tag Archive | eczema

Mystery spots…

It’s been a confusing 8 weeks in Mermaid’s world when it comes to her skin. About 2 months ago she had what appeared to be a black eye arise out of nowhere. As time went on the skin beneath her eye bubbled up and eventually peeled off. It has since remained rough and scaly, much like an older spot on her back. Then, a few small dots on her back turned into a round blistery patch and just like her eye, peeled off and has since remained rough and scaley. The presentation of both spots is not exactly like her normal nevus but has some similarities.

The timing was impeccable considering we already had a series of routine appointments set up in the coming weeks, so I didn’t worry much knowing we would have answers soon.

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Without knowing exactly what Mermaids new spots were and one of them being present on her face I wanted to be careful with what I chose to put on them as far as medication goes. With a few weeks to our first appointment I chose to just use a salve that we had made over the summer.

Mermaid’s Grandparents have bees so we have access to all the wonderful benefits bees bring us. Last summer we experimented with making some of our own products with beeswax. One of our endeavors was an anti-itch salve with Beeswax, Shae butter and a few other secret ingredients.

I was pleasantly surprised with the level of improvement our salve provided. Specifically, the spot on Mermaid’s back that she was asking me to scratch 8,432 times a day, stopped being bothersome during times of its use. I am happy that the salve has prevented further itching but we still didn’t know what we were really dealing with.

First up, we had contact with our dermatologist. He seemed pretty confident that what Mermaid has is not spreading of her Nevus but either Eczema or Seborrheic Dermatitis. He suggested we use 1% Hydrocortisone and let him know if it didn’t clear up. Honestly, I hesitated with the hydrocortisone because I had read about it not being the best for use on the face. Her Dermatologist even mentioned that too strong of a medication could potentially cause the pigmentation to stay, despite his suggestion I simply opted to wait.

Our next appointment was with our Primary Care Provider, once again he stated that he did not believe these were related to her nevus and agreed with dermatology that it could be Eczema but also thought it resembled Pityriasis Rosea, if that were the case she may develop more of a rash on her body and needed to let him know, though it is not contagious. He supported using the hydrocortisone 1% both on her back and face. With 2 people agreeing on its use I picked up a tube and for no other reason than being busy that evening I never got around to using it.

The following day we headed in for one last appointment with the eye specialist. The first thing she noted when entering the room was Mermaid’s face. I appreciated that it bothered her because it had been driving me crazy for nearly 2 months! She asked what it was, to which I replied honestly – I have no idea but nobody seems overly concerned. Seems like it might be eczema….? This particular day it was angry. Red, swollen, extra flakey, so she really got a good version of what it looked like. I shared the previous encounters and the plan to which she strongly disagreed. She felt that the medication they were suggesting was fine for her back but too strong for her face, as I initially felt concerned about. In turn she ordered a steroid cream to pick up and promised in 3-5 days we should see some improvement.

So really… what do we know? Mermaid has something that might be Eczema or maybe it’s Seborrheic Dermatitis or possibly even Pityriasis Rosea or maybe they are all off and its new scales developing as we speak! With the lack of a clear answer I decided NOT to use either medication advised by the Physicians and have stuck with just our “Bee honey” as Mermaid calls it. It truly keeps her from scratching and seems to keep it moisturized enough yet obviously fails to actually clear anything up. I trust all of our Physicians and we are not dealing with anything serious where my decision to not use the medication right away would cause harm but I truly want to be confident in what we are treating before treating it.

I am only confident in the decision to avoid medication therapy at this point because coming up in a few short weeks we will be going to Doernbecher Children’s Hospital, a unit at Oregon Health & Science University to see a Physician who specializes in Pediatric genetic skin diseases. With the variation of answers I would rather be certain about what we are treating before putting anything on Mermaid’s face. With the variation of “possibilities” and discrepancies in treatment we are sticking to our daily routine of  “bee honey” in hopes that the specialist has some concrete answers to what these new spots are.

Praying that Mermaid’s new spots are NOT Nevus and impatiently awaiting our big day at Doernbecher!

Does anyone have anything that looks similar to Mermaid’s pictures above or have a form of nevus accompanied by other severe skin issues? Looking forward to hearing all your thoughts!

Thanks for walking with us today!

Mermaid’s Mommy

 

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From hiding to Hollywood!

Mermaid’s disease has introduced us to all forms of Nevus, where occasionally we shed tears over the stories and difficulties everyone faces, we also get to celebrate.

Meet Marika Nagy from Manchester, a fellow member of one our support groups who got her chance to tell her story.

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My favorite line…

“My birthmarks make me special. The world would be a very boring place if we all looked the same.”

With Marika’s blessing we share her story, she is such an inspiration to all of us!

Click below to read her story on the daily mail!

http://www.dailymail.co.uk/femail/article-3809507/Girl-coverered-birthmarks-bullied-looking-like-cow.html

Marika – we look forward to seeing you on the big screen!

Thanks for walking with us today!

Mermaid’s Mommy

Lean toward happy…

Those of you that know me personally, know that I am a huge baseball fan. Where my team’s season is about over with basically no shot in the series I will still be glued to what’s happening all October. I recently read an article rooting against the Cubs to take the World Series and before everyone in Chicago gets upset at me for agreeing, let me tell you why. You see, the Cubs haven’t won a world series since 1908. Yes, they deserve their moment in the limelight but if they win, we lose one of the last connections to old-time baseball. To me, the time of the greats. The time where players were heroes, before other sports dominated the world and baseball was the leader. If they win, what will they grumble about for the next 100 years? I love this writers perspective, but win or lose, I love the sport.

There is a special little boy named Dylan who also has a love of the sport and right now, he needs you to help him hit a home run this October. October 3rd Dylan will be going in for his 27th… yes, you read that right, TWENTY SEVENTH surgery.

Dylan was born with Giant Melanocytic Nevus. A rare condition found in 1% of infants. Additionally he has Neurocutaneous Melanocytosis (NCM) which means he has it in his brain and spine as well.

Dylan’s form of Nevus runs the risk of melanoma and to help prevent that he will yet again, be undergoing another surgery.

In the photo on the right, Dylan is holding a picture of his friend Christian wrapped in the Lord’s arms. Christian and Dylan became friends when Christian was only 6 months old. This week marks Christian’s 2 year Angelversary. Christian lost his battle with Melanoma that was present in his Nevus at 19 months of age. I speak frequently about the potential side effects and our fears, our family has also endured the loss of a friend to Melanoma but Dylan’s fight reminds us all too much of those painful realities.

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(Dylan and Christian a few short months before Christian’s passing)

Christian’s Mom shared with me that the two boys and families became fast friends, following Christian’s passing Dylan even stood in her wedding. His Mom wanted me to share with everyone reading this that even in his darkest times, Christian was always happy. A doctor on the palliative pain team at children’s hospital said he’d never seen a baby so good spirited. He said ” no matter what gets thrown Christian’s way, his natural inclination is to ‘lean toward happy’… its remarkable, really!” That stuck with Christians Mom and has been a huge piece of her grieving. When things get tough, she remembers Christian’s resiliency and leans toward happy.

We NEED a cure for Melanoma. No family should endure what either of these boys families have, whether it’s in the form of loss, or prevention.

I was talking with one of Dylan’s parents today and I felt silly for my worry surrounding Mermaid’s nevus. She gently reminded me that we are all on a different journey, and she is right. We all have struggles and concerns valid to our lives. Some bigger than others, but in no way, shape or form, does it make any of them less.

As I’m sure you can imagine, with surgery comes cost and time off of work for his family. He has an amazing family that has done everything they can, and will continue to do everything they can to ensure his wellbeing. Right now, it’s our turn to help ease their burden, just as they have done for Dylan his entire life.

Dylan’s family has put together a fundraiser where they are selling water bottles and shirts to raise money to help offset some of the cost following surgery. You can donate or order using the link below.

http://fnd.us/01ASMb

I know we can’t always give by way of money and sometimes the biggest gift is that of prayer. So as October rolls around, keep this little slugger in your thoughts, give the family some encouraging words and tell them Mommy’s Mermaid sent you!

You can read about the specifics or follow Dylan’s story on his own personal facebook page at:

https://www.facebook.com/DylansAmazingJourney

To follow Christian’s mom on her path of recovery and learn more about his short but meaningful journey you can go to:

https://www.facebook.com/ChristiansSpecialSpots/?fref=ts

To Dylan, you are stronger than most people I know, you will heal and once again amaze us all. I have no doubt that Christian will be by your side through your entire process. You will be back on the ball field before you know it, and think of it this way, while your home healing, you can enjoy the world series! You will be in our thoughts and prayers before, during and after your surgery.

Tanya, Kara and Nikki – your strength is far from unnoticed. To Tanya and Kara, I want to thank you for trusting me with you stories, emotions and lives. I think I will forever remember to “lean towards happy” when I am having a rough one.

“Our wounds are often the openings into the best and most beautiful part of us.”
David Richo

Thanks for walking with us today,

Mermaid’s Mommy

A threenager’s thoughts…

Most days our lives mimic other people’s with a toddler, trying of our patience, astonished by the next big accomplishment, mortified by the new sentence or phrase they picked up, tiring as we fight sleep, attitudes, messes and defiance, and quite possibly the most beautiful experience we will ever have. I find myself constantly in awe of what my little being is teaching me and often forget what life was like before she was here. I joke that I want quiet and moments of solace but when I get them, I feel partially empty. I have learned that the pure chaos she brings me, is just what I always wanted.

Then there are times when I am reminded that unlike other people’s lives with a toddler, our journey is slightly different. Where her disease in no way, shape or form prohibits her from anything in life, it occasionally rears its ugly head and forces us to face it dead on. Sometimes that’s in the form of an appointment or treatment, but tonight, it was in the form of words.

As we were finishing bath time I asked her to lift her arm so I could use our special soap on her scales and very matter of fact she said “My scales are disgusting.” First of all, disgusting? Big word for a little girl. Second of all, how, why, where would she have heard something like that? but lastly, ouch. That hurt Mommy to hear. I replied just as matter of fact by saying “No they’re not, your scales are beautiful.” To which she replied “Thank you Mommy, but they’re disgusting.”

I opted not to argue or acknowledge her second statement and just moved on. I told Daddy what she said and he frowned. It seems harmless but it’s so far from that. My two biggest fears are of course, cancer, be it in the form of a wilm’s tumor or melanoma and her being embarrassed or uncomfortable in her own skin. Were blessed that for the most part, her nevus is hidden beneath her clothes and the ones that aren’t are hard to spot with the naked eye unless you know it’s there or are looking, so to this point we have had very little interaction with the public making much of a fuss. So where did she get this idea? Yes, she is three and they come up with the craziest things, half the time she doesn’t even really know what she is saying, but she was so matter of fact about it.

I think back to our first days after being diagnosed and how plagued I was by the thought of this very scenario. That one day, I knew she would resent her disease. That one day I would be trying to reassure she was beautiful even with a few blemishes, but not at THREE. My hope is that by not engaging in it, telling her I love them and moving on it gets out of her head, that she sees I don’t fuss about it.

As her Mom it completely ruins me inside. There are so many other things life she will have to overcome, things she will have to give all her attention to overcome that I never want this to be one of them, though I know that is only wishful thinking. It’s hard enough as a woman to live up to what society thinks we “should be” that I fear the additional hurdles she will face as her nevus continues to spread. I suppose at some point it was bound to happen, I just wasn’t ready for that time to be now.

Her timing is odd considering right now, it looks the best it has in months. I think the cooler weather is limiting the irritation and amount of flare-ups we have had. She has complained maybe once recently that it was bothersome.

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So to all my parents out there, nevus or other skin conditions, what do you tell your little one’s when they say stuff like this? How do you address their remarks about themselves? I look forward to hearing your expert advice!

Thanks for walking with us tonight,

Mermaid’s Mommy

New adventures…

This past week we said our farewells to our favorite Physician who has chosen to depart our health care organization and explore other options in this crazy thing we call life. Where selfishly we are sad, we are excited to see where his next adventure leads him. It feels like we have been saying a lot of goodbye’s lately but it’s not completely surprising. We are home. Most physician’s take jobs far from their roots and eventually life leads them back home. I have long thought that any decision that puts your family first, is never the wrong decision. Medicine is a tough world to be in, appointment times are getting shorter, enrollment increases, demands skyrocket and all the while we try to do what we can in the given time, but its never really enough time. It’s stressful to say the least. There are a million reasons one chooses to leave, we are just sifting through the emotions of seeing another fantastic person go.

I had to ask myself why I am so upset about his departure, yes – we have been with him for many years now and he has been with us since day one with Mermaid, but it’s not the length of the relationship that brings me down. I’m not one to feel overly impressed by a degree or status. knowledge is helpful, but even in the beginning he let us know he would be learning with us when it came to Mermaid and I respected that honesty. You can be the best scholar, have rotation experience beyond your coworkers, years under your belt, but is that all that matters? So what is it? It was a different relationship, I never felt like I was a number, he listened, understood where I was coming from and trusted my thoughts that weren’t always traditional. On our last visit he mentioned me wanting someone who would think outside of the box and he nailed it on the head. I have a daughter with an unconventional rare disease, with little to no treatment, it forces me to think outside of the box when it comes to treatment. With little knowledge in the medical world I lean on all of you along with extensive research to help guide us and he respected that.

I have spoke briefly about my rough pregnancy and struggles that followed after birth but not a lot of detail, saving that for a different avenue I’m working on, but he was there through what feels like the roughest 3 years of my life, physically and emotionally. When Bailey was diagnosed, I was heartbroken, when her specialist declined to perform a biopsy, he did it. It may have been a first on such a little one and he did amazing. When I needed a signature for one of our unconventional treatment ideas he signed it, and again to hold onto at our last visit for future use, despite recently being denied by someone covering because they felt uncomfortable with it. When I felt crazy after having Bailey and cried every single day from the pain I was in, he helped me through it. When my options ran out and it led to my hysterectomy, he was there for anything I needed leading up to it and after as we sift through the last leg of remaining symptoms. The thought that I have to start at ground zero with someone who won’t fully understand the level of despair and need we had been at is hard to swallow. Yes, I cried in our last visit.

We are nearly the same age and did  lot of life events close together, marriage, kids… it gave us more to talk about than just “what can I do for you today” and I always appreciated that. No, I have never been one to be overly impressed by a degree or status, but I AM impressed with how someone treats you. We spent most of our last visit talking about life, where we hoped both our paths would lead in the coming years and it was bittersweet.

Mermaid was snapping pictures with her tablet as we talked, it was borderline creepy, but she was entertained and honestly, it’s probably my fault for taking pictures literally 24/7 so I couldn’t blame her. Now, I’m glad she did, where she really needs to work on her skills, I suppose this is how a 3 year old views her visit.

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Don’t get me wrong in reading this. We have an amazing support system. Immediate family, extended family, work family, friends, my amazing husband, we truly are blessed, but there are some things your support sytem can’t do for you. You know, like the medical side of things. To so many people reading this I know you understand what it means to find that right Physician, someone who you trust, in our case, someone who felt like a friend, I know you are keen to how important it is in our world, and when it goes away, we all feel a little lost.

To our favorite Physician, may you ever lay eyes on this… and don’t feel like I made it clear,  Thank you. Thank you for being our rock, our advocate and always treating us like people. Whether you feel it or know it, you are an amazing Physician, as you know, I have been around a long time and I put you in that handful of exemplary people to walk into my Kaiser world. Whether you choose Medicine or a different road, keep that bedside manner. Continue to get to know people and truly show them you care. It will take you far.

To all our readers, so much of my knowledge never would have happened without that biopsy, it led us to a true diagnosis and the Yale study, without that signature we never could have shared the incredible results of our wartPEEL trial and without his helping hand I personally never could have gotten to the place I did to start this whole adventure. Wish us luck on our journey to find our next cohort on this wild ride.

Onward and upward to our next chapter.

Thanks for walking with us today,

Mermaid’s Mommy

Scrub a dub dub…

A good body scrub can be spendy; and let’s face it – if your like me, you might treat yourself only to use the product once, forget you have it, and find it months later when it’s all dried up and useless. Sunday afternoon we were longing for a soothing bath time treatment and decided to make our own.

Here’s what we were working with: Some Lavender body oil, Epsom salt with lavender, Sea Salt and pure Coconut oil.

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  The health benefits of sea salt and coconut oil in the beauty department are endless, we have discussed some of these in past posts but always separately. We have yet to combine the two for a single treatment. Add in the Lavender oil and Epsom salt and it’s sure to be just the small little wonder we were looking for.

Let’s talk about some of the benefits of these 4 products.
  • Sea salt can help push all toxins out of your body, the skin becomes soft and healthy. It has been seen that regular sea salt baths can enhance the skin tone to a large extent. The magnesium present in the salt can prevent the retention of fluid from your skin keeping it supple, firm and youthful.
  • Sea salt is full of vital vitamins and minerals, which are required for providing proper nourishment to the skin cells. These nutrients can improve the cellular energy metabolism, keep the tissues hydrated, boost blood circulation throughout the skin surface and increase the strength of cell membranes.
  • The calcium content of sea salt can help in cleaning up clogged skin pores. If you have an acne-prone skin, go for the sea salt pore cleanser. It keeps your skin clean and clear by reducing the chances of skin infections.
  • You can also use sea salt as a natural exfoliator. The texture of this salt helps remove the upper layer of dead skin cells and reveal a fresh one underneath that.
  • Epsom salt is very beneficial for the skin. Application of this salt on moist skin gives it a soft and smooth appearance. It also acts exfoliates and removes all the dirt and dust accumulated on the skin making it fresh and young.
  • The anti-bacterial effects of coconut oil can aid in acne treatment. Actually, this skin oil comprises of high amounts of lauric acid and capric acid, which are antimicrobial agents that treat acne. Using coconut oil not only treats acne, but it prevents further outbreaks as well.
  • Coconut oil can benefit those with dry skin through acting like a skin moisturizer. A study explains that coconut oil is a highly effective moisturizer for flaky and dry skin.
  • Lavender oil benefits for the skin can be attributed to its antiseptic and antifungal properties. It is used to treat various skin disorders such as acne, wrinkles, psoriasis, and other inflammatory conditions. It is commonly used to speed up the healing process of wounds, cuts, burns, and sunburns because it improves the formation of scar tissues. Lavender oil is also added to chamomile to treat eczema.
We pilfered our cupboards for a jar and some craft supplies and went to work.
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Some scrubbing of the jar, a few artistic touches from Mermaid, a bit of a mess and….
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 VOILA!
Mermaid and I’s homemade body scrub.
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Happy relaxing!
Thanks for walking with us today,
Mermaid’s Mommy

Did “It Work?”

1/3/16 – 1/17/16

Well, our 2 weeks is up and it’s time for results…

Remember we trialed the “It Works” exfoliating peel. We used this product two times a week, for two weeks, on Mermaid’s largest nevus area beneath her arm. During this time we stopped all other treatments; including lotions and soaps.

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Mermaid’s disease thickens, in time it is almost inevitable that it will become warty to the point that we will not be able to manage it with home care and that’s when surgery comes into play, if she chooses, or if it effects her joints on her hands. Over time you can see below that it begins to thicken. Even with moisturizers, this will happen. My hope with the exfoliating peel was that we could flatten the thicker areas and help prevent some of her “picking” and itching. Hydration is the most important factor in lessening the itch but the thicker it becomes the more painful it becomes.

Here’s where we started….

Day 1.

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and ended….

I am happy to share that yes, the exfoliating peel did just what it was suppose too.

Day 14.

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Let’s take a closer look side by side…

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To be honest I took NO pictures along the way and paid little attention to the effects aside form making sure Mermaid was not having any kind of negative reaction to the product. I am so pleasantly surprised to see the side by side this morning.

Mermaid’s skin is flatter and currently, is not scaling.

I would have to deem this trial a huge success!

As a loyal customer we paid $36.00 for this product ($60 retail) which seems to be on the higher end of most products we try, with the exception of the WartPEEL ($80) but it lasts. I too, used the product all 4 times Mermaid did on a patch of eczema (wish I took pictures) and we have well over 3/4 of a bottle left. If your weighing out the cost, I expect this product to easily last us 3 months for 2 people.

I will move this trial to our permanent page so you can easily locate it if looking for something to try.

Product Highlights

  • The Exfoliating Peel uses microbeads to quicken the process of skin turn over. By rubbing these microbeads on the skin you’re helping to exfoliate and rid the body of old skin cells, allowing the new skin cells to surface faster than they would naturally.
  • These microbeads are encapsulated with aloe, a super healing nutrient for the skin. The process of exfoliation can sometimes cause irritation, but the presence of aloe helps to avoid that. Aloe is a natural anti-inflammatory. As the microbeads are rubbed around, aloe is released to sooth, calm, and hydrate the skin.
  • There are NO HARSH CHEMICALS! The contents of the Exfoliating Peel are derived from fruit and are botanically based active ingredients.
  • The peel takes it all off revealing healthier skin and a more natural healthier you!

If you are interested in purchasing or just looking at any It Works products feel free to contact either friend of mine who will guide you through the uses and any information you could ever imagine wanting.

April Backwell

503-314-9348

Backwellfamily@gmail.com

or visit her website at:

http://www.aprilbackwell.itworks.com

or

Alicia Richardson

503-957-7126

Lishadawnn@gmail.com

or visit her website at:

http://www.dreamingwithalicia.myitworks.com

Thanks for walking with us today,

Mermaid’s Mommy