Tag Archive | linear epidermal nevus

Do frogs give you warts?

We have an exciting product to trial and are patiently awaiting its arrival. It’s called WartPEEL; an acquaintance and Mommy’s Mermaid follower turned us onto this exciting endeavor. WartPEEL is a wart removal product that treats planter warts, foot warts, and other warts found on skin. It is a compound medication available only in certain locations in the United States and is typically a cash product running $79.00 per 5 grams (0.17 ounces).

In 1997 MedCara’s pharmacist founders experimented with a compounded treatment using chemotherapy drugs which is marketed as WartPEEL. This compound has been used by medical practitioners to treat more than 50,000 patients.

WartPEEL is available as a compounded medication exclusively from MedCara, LLC and it’s contracted pharmacy, NuCara. Dispensing of WartPEEL requires that an appropriate doctor-patient-pharmacist relationship be maintained. NuCara Pharmacy will not fill prescriptions for patients that do not have a valid patient-doctor relationship.

What does an appropriate doctor-patient-pharmacist relationship mean? This means you cannot call NuCara and simply purchase the product on your own. You must have a physician complete a prescription form and fax it directly to their compound pharmacy.

Where Mermaid’s Nevus is not a wart she does have a problematic spot on her wrist that is thickening. This is a particular spot she picks and says hurts – so whenever it arrives we will start with a small trial on that one designated area. Considering the medication contains a chemo agent and typically isnt used in patient’s this young we will be more cautious about the usage.

We got so caught up in our busy lives we forgot to share the results of our last trial, we took pictures and documented everything and then dropped the ball. Like other Amlactin products tried in the past we saw little to no improvement but I will still post the picture and information on my “Got any secret solutions?” page with the others.

As a quick reminder we used AmLactin Moisturizing Body lotion and below is the decription from their website.

“AmLactin Moisturizing Body Lotion has a special formula with clinically proven 12% lactic acid that’s pH balanced for the skin. Don’t let the word “acid” concern you. Especially since lactic acid is a naturally occurring humectant for the skin with a certain affinity for water molecules to help keep skin hydrated. And the more moisture that can be retained deep within the skin, the softer and smoother your skin feels. In addition, by encouraging natural skin cell renewal through exfoliation and delivering intense hydration deep within the skin, this lotion creates a soft, smooth texture.”

Monday 8/17- Monday 8/31.

Monday 8/17/2015:

During this time I again noticed no change in Physical appearance, she continued to speak about it just as much as before. At one point Mermaid developed a skin rash which I do not believe to be corrolated with the AmLactin product in any way but added a small complication.

Ultimately we came to the same conclusion as the other AmLactin products, they work for hydration but moving forward we will opt out of trialing any other versions for the soul fact that we know the extent of their use.

Monday 8/31:

Stay tuned for results and more information on WartPeel!

Thanks for walking with us today,

Mermaid’s Mommy

Good things come in small packages…

Sep8

Nevus owners come in all shapes and sizes. The disease does not discriminate for race, religion or belief. Some cases are more severe than others but my experience thus far is that despite the subtype or severity, the owners and families of nevus owners alike, share the same levels of support for one another.

It gives me great pleasure to openly write about our journey and the journey of others on this platform to share not only our emotional struggles and human reaction to the disease; but to potentially offer knowledge to those seeking.

Today I am blessed to share a story about a little girl with ILVEN. Meet 9-year-old Rachael, a fan of literature – anything Bad Kitty by Nick Bruel is right up her alley. She has a healthy appetite and unlike myself, has blessed her family with not being picky!

Rachael was born with what her parents believed to be a suckling blister on the palm of her left hand and they thought it was adorable. However, by the time she was 6 months old it had spread halfway up her palm. The first dermatologist diagnosed Rachael with linear porokeratosis but he admitted he was way out of his league and sent them to a different dermatologist in Rochester, NY.

A punch bioosy was done and Rachael was diagnosed with epidermal nevus. The family was given a few prescriptions for creams but basically brushed off (ahhh… how I know the feeling).

At that time Rachael had growths on the bottoms of her feet that the same dermatologist insisted were warts. She attempted to freeze them off with liquid nitrogen but with no surprise to the family, failed.

Six months later they returned asking for more literature on Epidermal nevus but were given copies from a medical journal, that I’m sure many of us can confirm, means little to nothing without a medical degree.

Being that the family was military there same search and struggles for information continued with each move to a different state and new Dr.

Rachael struggled crawling because her ILVEN had spread at a rapid rate and would snag on the carpet as well as place pressure on her lesions. They were so thankful when she started to walk and passed that point of despair.

In 2011 the family was transferred to Virginia Beach and yet again, had to establish care with a new physician. At this point Mom, Lauren, was more Internet savvy and had determined on her own that what Rachael had was ILVEN. Mom printed everything she had found and presented to Portsmouth Naval Hospital with her findings.

Their new dermatologist was riveted by Rachel, completely and utterly charmed by this blue-eyed blondie. Unlike the past the Dr. Listened to everything Mom had to say and ordered a second biopsy. The results? ILVEN. it was such a relief to have a diagnosis and course of treatment began to change.

After being diagnosed Mom felt the struggle and knew she needed support. Thats when she decided to start a Facebook support group, which is where I came to know this angel.

Rachael’s ILVEN continued to grow. In February 2015 she had her first surgery to remove the ILVEN from her hand, knee, toe, finger, wrist and bottom of her foot.

In July 2015 she had a second surgery to correct a keloid scar ; an overgrowth of granulation tissue at the site of a skin injury, on her left hand. She had a pin placed in her hand/finger to keep it in place.

Rachael is a fighter. She has never been ashamed or embarrassed of her ILVEN. She explains it to people who ask or stare in her own child like innocence and even keeps a stock of band aids on hand for when her ILVEN cracks or bleeds.

Rachael, you are an inspiration. I yearn to teach my Mermaid to go through life with your candidacy and courage in the face of adversity.

My very first post spoke about staying up at night searching for a family like mine, someone to understand, that was the birth place of Mommy’s Mermaid. I later found the support group Lauren had created and will forever be grateful. We are 7 years behind their struggle but thanks to Lauren’s diligence and command, we are making headway.

Our families share a bond unlike others. Lauren and I share that need to find a sense of belonging and teach others through our own experiences. We sincerely hope that through the ILVEN support group and Mommy’s Mermaid we can be a place for others to find companionship and strength.

Thanks for walking with us today,

Rachael, Lauren, Mermaid

and

Mermaid’s Mommy

Back to the drawing board…

Aug19

We have been so constant about using our One with nature dead sea-salt soap that we haven’t tried anything new lately. I am so excited that our local New Seasons carries the soap as a staple so it’s always there for us but I think it’s time to mix it up again. The pigment has begun to darken on Mermaid’s arm and it seems to be thickening, it may be cyclic so we will note this. Perhaps it environmental as well, we have hit the dog days of summer her in the Pacific NW and are regularly in the 90’s so perhaps the weather plays a role. We will go ahead and try something new for a few weeks to see if it makes a difference.

As we continue our path to find just the right product we go back to a Dermatologist recommended product. Amlactin makes multiple different products and we have previously tested several others. This time around we are going to give the Amlactin Alpha-hydroxy therapy moisturizing body lotion a whirl. Below is the description of the product from Amlactin’s website.

We will give this product a 2 week trial, running Monday 8/17- Monday 8/31.

Monday 8/17/2015:

Stay posted for results and please, as always, let me know if you have a specific product you want to share results about or see us try!

Thanks for walking with us today,

Mermaid’s Mommy

Ivy leagues of the sea…

Aug12

On our journey to navigate through Mermaid’s disease we have learned that the statement “It takes a village” could not ring more true. We have found that the knowledge base and research surrounding LEN/ILVEN can be very limited at times so we tend to rely on the experience of others with the same condition to learn and share from one another’s experiences. When a fellow member of our support group reached out to me after reading my blog about a potential opportunity to aide in research of the disease, I was elated!

This week we received an invitation to participate in a research study of people with skin disorders at Yale University School of Medicine/Yale-New Haven Hospital. The goal is to find out how inheritance of specific genes causes some people in families to develop skin diseases. This is done by analyzing DNA molecules. Some studies may take years to complete and they may never find the true cause of the mutation, but if they do, they may be able to develop better tests and treatments in the future.

There are several steps coming up that we will share with you along the way including a skin biopsy and a biological sample. The biopsy can take 2- 6 months to get a final result on but we are excited to be on a path to having it done as we have asked about the necessity of having one from day one. Where LEN/ILVEN dont seem all that different they really are, so the more I learn about the different types of nevus the more it becomes relevant to me that knowing the pathology will pave our journey moving forward.

Coordinating care between physicians can be a slippery slope. It goes back to my experience thus far that each physician has a different level of knowledge & comfort, a different idea of what is and isn’t necessary and a different opinion about treatment. One piece of advice I have received from many other parents is to get a second opinion, the more eyes the better. Which means, we have a busy few months ahead of us. As we seek to get a second opinion, coordinate our biopsy, perform the biological sample and sift through our stack of paperwork I can’t help but be thankful for how far we have come.

When I started Mommy’s Mermaid my intention was to build a place I could chronical our journey and others could stop by to find common ground and support. It felt like a long shot but this is just one example of how it has served it’s purpose. Thank you Lauren McAdam for recognizing our eagerness to be a part of the bigger picture and reaching out to us. We are eternally grateful and proud to call you our friend.

Thanks for walking with us today,

Mermaid’s Mommy

Nature’s Miracle

Jul23

Feels like we have been out of order for a while! Our last trial ended 6/11 and I was so excited to begin the next with an eczema cream from an Oregon company named Wild Carrot Herbals. Unfortunately, Mermaid came down with a mystery rash and spent about 4 weeks fully recovering. We never did get a clear diagnosis of what it was but it cleared, so were happy! Within that time, Mermaid decided she enjoyed the eczema cream SO much, she used it in her hair, her bunny’s fur, slathered up her pillow and even shared with her pajamas! Needless to say we need to order another tub of it and moved forward with a different product.

I have spoke about the health benefits of sea salt before but not Dead sea salt specifically. So what’s the difference? Well, to start, one is better for your skillet and the other for your skin.

The Dead Sea is located between Jordan and Israel. Evaporation has shrunk the body of water over the past 10,000 years much faster than the rains can replenish it, leaving behind vast, concentrated salt deposits.

The concentration of salt in the Dead Sea is 10 times that of ocean water (29 percent as opposed to just 4 percent), making the Dead Sea salt much richer in mineral compounds, possessing high concentrations of magnesium, potassium, calcium chlorides and bromides.

It has been said that the therapuetic qualities have been sought after for thousands of years. Research has demonstrated that skin disorders such as acne and psoriasis are relieved by regular soaking in water with added Dead Sea salt. One study^[concluded that the high concentration of magnesium in Dead Sea salt was instrumental in improving skin hydration and reducing inflammation.

While shopping recently at a local market I stumbled upon this simple little gem.

A company by the name of One with Nature creates this soap and distributes it in a bulk type setting in multiple scents.

This unique soap combines pure Dead Sea salt, argan oil, shea butter and essential oils in a natural vegetable base. Triple milled* right at the source — The Dead Sea. Absolutely nothing artificial. Delightful and relaxing lavender scent. Unwrapped, with no label.

*Triple milling creates a higher quality, longer lasting bar.*

As I was focused on Mermaid’s Rash, I forgot to snap a beginning photo of our trial but we ran from 7/1-7/22 a bit longer than normal as we healed.

What I discovered over time was such a pleasant surprise. Several other trials have provided additional hydration but this product seemed to reach deeper than the surface. Aside from her Nevus being less flakey the pigment lightened as well.

Mermaid’s nevus is largest by far under her arm which is a difficult location to prevent infection. We are contantly fighting inflammation, redness and soreness as a result. I can without a doubt state that as a result of using this product Mermaid’s nevus has improved. You can note the lack of swelling and redness in this picture taken a few days ago.

I can also specifically note that Mermaid has not been saying owie or picking at her arm.

At the same time I purchased this bar I bought the shae butter one as well for a friend who’s child has severe eczema and she too noted a new found softness to his skin. These bars are ultimately the same product.

I am going to acquire another bar of this same soap, maybe a different scent to mix it up and extend our trial. As she remains guarded with her hand I want to continue our quest in this same direction and see if we can gain even better results with more time.

It’s a struggle because each day that passes her Nevus seems to spread or thicken so to look back at photos from 6 months or a year ago is no comparison. To note that most all my recent photos show inflammation and this one doesnt gives me hope.

I will post more pics and an update of this trial in a few weeks. In the meantime….

I highly encourage you to check out the companies website @ http://www.onewithnature.com and give some of their products a whirl. Can’t hurt right!

‘Beauty is how you feel inside, and it reflects in your eyes. It is not something physical.’

-Sophia Loren

Thanks for walking with us today,

Mermaid’s Mommy

Car candy for breakfast…

Jul16

I knew the day would come that someone, somewhere, would comment on my Mermaid’s nevus. I mentally prepared myself for how I was going to handle it and my plan was full of grace and couth. It’s my intention to show my Mermaid that other people’s reactions are just that, reactions. Things we aren’t familiar with spark people to stare, not always to be malicious but out of curiosity, and other times the unknown sparks fear. Having a level response to that will help build confidence and I need to be the foundation of that.

Well… the day had come, and my “plan” failed to say the least.

Mermaid and I were in the store bright and early on a weekday morning. I needed to pick something up for work and Mermaid was perusing the candy. A woman had been in the aisle with us for several minutes and looked directly at us multiple times and all was right. Mermaid was in a sundress which showed a lot of skin but unless you are looking for a problem or she lifts her arm, her Nevus is a well-kept secret at this point in time. Well what is a 2-year-old to do when the treat they want is higher than their little arms go… they reach for the sky right?!!?

As Mermaid’s arm went up, exposing her Nevus the SAME woman who had been standing next to us for several minutes with no problems at all, gasped, not a meek gasp, a LOUD, attention drawing gasp as if she hadn’t had air in days and projected “OH MY GOD” as she stared at my Mermaid.

Mermaid, being 2 and not understanding what the woman was reacting too, jumped – startled, and began to cry. I didn’t even think, I don’t remember there being more than several seconds between her gasp, Mermaid’s cry and my response but it wasnt nice. I must have turned a deep crimson and shot beams at her with my eyes as I watched her stare with slight disgust at Mermaid’s arm as I yelled “YOUR A DISGUSTING WENCH!”, grabbed Mermaid’s hand and basically drug her from the store. No treat, without what I came for, heart pumping, baby crying, obscenities flying the whole way out and knowing myself, I was probably stomping. There is no doubt in my mind I looked a certain level of crazy.

Sigh. Not my finest moment. I don’t even use the word wench so where that came from I can’t say. My preparation to handle that moment with grace and couth was a fleeting thought and I failed my first test. I was just down right mad.

I have now had a few days to think about everyone’s reactions in that moment. I don’t blame that Woman for being a bit shocked. The reality is, that until my child had it, I knew nothing about this disease and would be caught off guard myself if presented so closely with it. Did she need to gasp and yell to the extent of drawing attention and scaring my daughter, No. Then again, did I need to yell and draw attention? No. It seemed to be a chain reaction of good ole’ fight or flight responses. The Woman felt threatened by something unknown, Mermaid felt threatened by the unknown Woman, and I felt threatened by the response to the unknown. The perfect storm for a convenience store debacle at 6 am on a Wednesday morning. The cashier probably thought we were in a spat over a kit kat!

I feel like every situation, every appointment, every new bit of research I come across adds this whole new layer I need to understand. Bigger than that is getting the people who are NOT familiar with the disease to understand some of it too. At 2 years old my daughter isn’t hurt by a strangers stares or gasps, but her Mom is. To be reminded that what I have accepted as normalcy is seen as a flaw to others is hurtful. To be shown the response people may have to her disease when she is old enough to understand is hurtful. To know that it may continue to grow and thicken and be even more noticeable creating more opportunities for those encounters, is hurtful. If people were better educated on the disease perhaps it wouldn’t be such a scary moment when they were faced with it.

I would like to say that if presented with the same situation down the road, I would respond differently, more of a serene approach opposed to attack mode, but it hardly seems fair to make a promise I don’t know I can keep. I can say this though, I am not proud that my response was somewhat aggressive and to that Woman, I apologize. I also apologize that after leaving I imagined myself attacking you like a wild animal and settling the score right then and there, but I AM proud that in a matter of seconds I felt the need to protect my Mermaid without any hesitation. I’m sure Mermaid would also like to thank you for the fact that as a result of being drug from the store she got to eat the random candy from my car for breakfast. (Mom of the year award right here).

With it now out of my system I am moving forward with our journey and hoping my next response is a bit more tactful! Live and learn right!

“If you use tact you can say anything, then make it funny.”

-Dane Cook

Thanks for walking with us today,

Mermaid’s Mommy

Dermatologist recommended

Jun16

Next up on our menu of trials was Amlactin Ultra Hydrating Body Cream. We have used Amlactin in the past when Mermaid was first diagnosed, but not this specific line. We were given this product by Mermaid’s dermatologist who strongly supported it.

Below is the information provided by the product’s website.

The #1 moisturizer brand recommended by dermatologists for rough, dry skin¹
Restores lost moisture and softens severely dry skin—apply twice daily for best results
Works to exfoliate dead skin cells—returns dry skin to its natural, healthy state and improves overall appearance
With rich humectants and creamy emollients—delivers the kind of smooth skin texture you’ll love

AmLactin Ultra Hydrating Body Cream is specifically formulated for severely, persistently dry skin areas needing extra attention. With our patented ULTRAPLEX formula, this clinically proven cream gently exfoliates and intensely hydrates for long-lasting moisture and serious relief.
AmLactin Ultra Hydrating Body Cream provides triple action alpha-hydroxy therapy. Simply put, alpha-hydroxy therapy combined with rich humectants and creamy emollients creates a cream for dry skin that not only repairs but also softens.

5/28/15:

Throughout our trial I noticed no change in either appearance or physical irritation. In fact, during this time the thickness of the nevus on Mermaid’s hand increased. No corolation to the product, simple coincidence, and once again, she declined to let me photograph it. However, there was also an increase in dryness beneathe her arm and slight thickening.

6/11/15:

It’s note worthy that the Oregon weather has been warmer than usual so it’s more difficult to hydrate at this time. If Mermaid had it her way she would be living in the pool day and night. That being said we probably wont choose to add this product to our bag of wonders because it was applied multiple times a day, difficult to remember at times and didn’t seem to mesh with Mermaid’s skin type, but that doesnt mean it wont work for you! We are all different so your skin may take to it very well.

I am REALLY excited about our next product we are going to try.

Another local Oregon business so generously sent us this to give a whirl on our journey. Thank you Wild Carrot Herbals!

DON’T FORGET… I want to hear what you have tried, are trying or stepped away from.

Stay tuned!

Thanks for walking with us today,

Mermaid’s Mommy

Salty sweetness for the soul

May18

If you placed a sweet and a salty treat in front of me 100% of the time I would go for the salty one. 100% of the time my Mermaid, like most 2 year olds, would go for the sweet. So today I decided to combine the two for a treat to benefit us both.

Sea salt has been used for many centuries for health benefits. Did you know when you add sea salt to warm water it opens your pores? It is known to aide in chronic inflammatory skin diseases by helping your skin maintain hydration. It may also decrease bloating and help muscle aches.

Ahhhh, the red rose, an international sign of love. Does it really add benefits in your bath? Of course it does! Aside from the pleasant aroma the natural oils in rose petals put off it can leave you feeling relaxed, sleep better and lower anxiety levels. I opted to pour boiling water on some cut petals and allowed them to soak several hours to reap the benefits of the sugars. Rose water acts as a mild astringent reducing inflammation in the skin and aiding in hydration.

We all know chocolate is delicious but it can also improve brain function, act as an antioxidant and increase blood flow to the skin. Add the sea salt which has other benefits when ingested, such as maintaining healthy levels of electrolytes in the body, and poof, a beneficial treat.

My husband said it looked like we were going on a romantic date and I am just fine with that. Here’s why, when Mermaid walked into the bathroom she lit up and squeeled “flowers and chocolate Mama!” if I create one special moment in my Mermaid’s day, its been a success. If that special moment is not only good for her soul but for her skin as well, its been a triumph.

Whether your looking to find a soothing solution from your cupboards or prefer to purchase a product there are millions of options. Perhaps start by visiting another Oregon bloggers site at https://harmonizenskin.wordpress.com/ and check out some of their products.

“Childhood is the world of miracle and wonder…as if creation rose, bathed in the light, out of the darkness, utterly new and fresh and astonishing. The end of childhood is when these things cease to astonish us.”

Thanks for walking with us this evening,

Sweet dreams,

Mermaid’s Mommy

From sea to land – a tale of scales

Apr4

Below is the first post I ever wrote, I choose to keep it up as a reminder of where this all started. I now love to share other people’s stories and learn about all forms of nevus. By no means am I an expert but have come a long way in understanding what our future holds. When I start to question if I should continue this blog I come back to this post and remember the place I was in at the very beginning. Welcome, and if your new… start here!

Hello there, however you got here, I’m glad you made it. Welcome to Mommy’s Mermaid, let me tell you a little about our journey.

In 2013 our family was blessed with a beautiful baby girl. From birth I noticed this odd spot on her arm, multiple Dr’s assured me it was nothing, just a tiny birthmark and home from the hospital we went. As she grew, so did this tiny birthmark. Eventually filling her left armpit, around her ribcage and down her arm onto her hand. Now it didnt resemble a birthmark at all, more so a fungal infection. Multiple creams and a perplexed primary care Dr. Later we landed in dermatology.

I will never forget how calmly I was told that what my daughter had was called a nevus and it had no cure. A type of birthmark that could potentially take over the left side of her body and to be conscious of something called a wilms tumor. Keep it moist, avoid harsh soaps, see you later. I was so fixated on the fact that it would be there forever that I didnt ask the questions I should have.

We left and went for lunch, I got out my paperwork and googled the diagnosis shown of “melanocytic nevus” and a wilms tumor. If your not familiar with either, as I was not, take my word for it, what begins to pop up is a parents worst nightmare. Cancer, cancer, cancer. I felt sick, confused, sad. Why was it taken so lightly? Whats going to happen now? I immediately emailed the Dr. Who said a modifier didnt populate and what she had was not melanocytic but a linear epidermal nevus. Better but still not good.

I cried a lot in the following days. Sometimes with my family, sometimes alone. I thought about what the kids would say in school, would she wear a swimsuit when she was older, what about her prom dress? Would she develop kidney cancer, how would I know? Will she be tough enough to handle the vain criticisms I knew lay ahead? My anxiety’s plagued me. I searched night and day for anyone like me. Another Mom who felt sad or scared, a positive story about someone in adulthood with this disease and time and time again I came up empty handed.

I researched and did my due diligence on the disease and made a decision right then to start raising my daughter not to be ashamed of her “birthmark.” I jokingly said they were special scales she got to keep from when she lived in the ocean as a fish. Hey, she does love water! A friend said can’t you at least make it something better than a fish? Like a mermaid? and it stuck. Her special scales from when she was a mermaid. Mommy’s Mermaid.

I wanted to create a place for people to come for support. A place we can talk about products that have or have not helped, challenges and successes. A place where we can help eachother understand more about the disease and feel safe. A place where families like mine can find eachother just as I needed so badly in the beginning and am sure I will need again throughout our long journey. I pray for those who’s nevus has resulted in surgery and or cancer or left them feeling alone or insecure. Please know, you have a friend in us.

I hope in time to gain followers, strength and knowledge as I publicly share our walk down this road.

Your Truly,

Mermaids Mommy

Mommy's Mermaid

Our Journey

Tag Archive | linear epidermal nevus

Do frogs give you warts?

Back to the drawing board…

Ivy leagues of the sea…

Nature’s Miracle

Car candy for breakfast…

Dermatologist recommended

Salty sweetness for the soul

From sea to land – a tale of scales