Good things come in small packages…

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!

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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.

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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

Operation scales complete!

Exhale. Its done. Nearly two years after first asking for a biopsy it’s finally complete. Just knowing we will soon have a difinitive diagnoses brings a sense of calm.

We battled to have this done through specialty care and in the end I am ever so thankful that our primary doctor stepped up to the plate. There seemed to be a sense of hesitancy to complete the biopsy on a little one until our family doctor joined the cause. I truly believe that without the compassion and knowledge of our support group, family and Mommy’s Mermaid followers, we would still be fighting. The genuine compassion they showed us gave us opportunities to not only share what they had completed but allowed us to pick the brains of specialists across the country. We were armed with the right information to close the deal. To each of you that have spent your evenings chatting with me and sent me pertinent information, I thank you.

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So why does this mean so much to my family? Nevus comes in many forms. The treatment and complications for your specific subtype varies. Some have more opportunities for less invasive treatment and others simply result in surgery. I feel very strongly that it is our right, if the technology exists, to know the true pathology of Mermaid’s nevus. We deserve as a family to prepare and educate ourselves on whats to potentially come in the future. Could our original diagnosis of Linear Epidermal Nevus remain, sure, but it also may not.

I worked daily for a week or so to prepare Mermaid for this day. We talked about the first shot, where it was going to be and that we would then be cutting out one of her special Mermaid scales so the Dr. could make her feel better someday. Sounds silly to have an expectation that a 2-year-old would comprehend what I was saying, but I must say, it worked!

From the minute we walked into the office she was mentally prepared. Yes, there were tears with the inital injection of lidocaine but heck, when I worked in Internal medicine I saw tears from adults too! She got away once but we readjusted and from there on out it was smooth sailing. Daddy, myself and our beloved assistant kept her still and calm and it went much quicker than anticipated. She got one small stitch which I will remove myself in a week or so and by the time she had a hello kitty & my little pony sticker in hand, she had forgotten what happened. It didnt hurt that brother was there shortly after to offer another level of sunshine. I am so proud of the strength and understanding my Mermaid showed today. She really is something special.

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I cannot express what a gratifying feeling it is to have a Dr. That not only supported us doing this, supports us participating in the Yale trial, but supports all our efforts to find answers and comfort for our Mermaid. After all, he may have one of only a few children in our state with this rare disease on his case load!

In roughly 2 weeks we will know the exact pathology of Mermaids nevus and whether or not it contains cancerous cells.  One more victory in our journey!

Thanks for walking with us today,

Mermaid’s Mommy

What shall it be?

Time for another poll! Which topic would you like us to delve into next? The rhyme and reason to those with nevus overheating or the controversial topic of zofran used during pregnancy potentially aiding in different disorders?

Thanks for walking with us today!

Mermaid’s Mommy

Signed, Sealed, Delivered…

Phase one of operation Yale is complete. We are well on our way to obtaining Mermaid’s entire genetic code. Well, Yale is on their way. We will not receive the report directly but any medically-relevant results will may be obtained through the right channels. Only took me a month to get it all packaged up and out the door! Which sounds about right for the life of a working Mom. We are excited to have Mermaid’s information hitting the skies on its way to the East Coast.

In case you missed the last update I will give you a quick reminder. Mermaid was invited 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.

The first step was to literally, put our life on paper. Parental consent, family skin conditions, symptoms, origin, PCP & Derm info, Grandparents information and other medical history of the family. Seemed easy enough, until every time I started working on it I got one line done and one of kids or pets needed my full attention at that exact moment. Monkey snacks and 16 trips to the potty an hour are of the utmost importance in our house, but we finished!

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Next was to collect Mermaids biological sample, aka… spit. Saliva can provide much of the same genetic information as the blood sample and being that we are on the other side of the country makes completing this portion, much easier.

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Mermaid’s DNA will be screened for mutations and then stored indefinitely for future use.

Little Miss Independent insisted on completing this part on her own, (45 min later we had about ½ of what was needed, so Mommy stepped in).

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 With our sample capped and everything tucked neatly into its package – I felt accomplished.

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On a side note, Did you know the workers at fed ex drop off’s can’t handle anything marked biological substance. Interesting fact for the day. We are so lucky to get to be a part of the research surrounding LEN and ILVEN and hope our contribution makes a difference.

Stay posted for our biopsy coming up next week!

Thanks for walking with us today,

Mermaid’s Mommy

Back to the drawing board…

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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.

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“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.”

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

Monday 8/17/2015:

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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

Second’s anyone?

In listening to my peers who’s experience comes from their own, opposed to a Dr. sharing other’s experiences with us, and feeling like there may be an opportunity to gain more knowledge, we have decided to obtain a second opinion. The more eyes the better right?

It’s a weird feeling. I feel almost like we are doing something wrong or cheating on our Dr. that diagnosed Mermaid. I need to constantly remind myself that I am Mermaid’s advocate and if I settle, am I really doing what’s best for her?

My question to you guys is… Have you obtained a 2nd opinion? If you say No, will you share with us why? Please answer below.  Thanks everyone!

This entry was posted on August 17, 2015. 8 Comments

Ivy leagues of the sea…

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.

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  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

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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.

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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.

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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.

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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.

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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…

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!

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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

The Why?

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I recently attended an all day training for work, you know, the kind you dread for weeks leading up to it. (No offense to my company,  its not you, it’s me). Lucky for me we had the best instructor possible and surprisingly,  I took something away from it that I could apply to my personal life.

We were asked to separate into our workgroups and discuss why we ended up working in Healthcare. I always thought I knew and believed it was my own decision.  Turns out after talking it out for a while my parents pretty much made that decision for me without even knowing it. All my decisions from school to company to department stemmed from their influence. I have to brag a bit too that one of the psychiatrist’s in my group had the best why ever, but I will spare you the details of our work why’s and get to how this relates to Mermaid.

I moderate comments on my site and occasionally I get a negative nelly that I choose not to publish. They think a post is pointless or disagree with my motive. So it got me thinking,  what’s my why for Mommy’s Mermaid?

True, when Mermaid was first diagnosed with linear epidermal nevus I was devastated, I searched for sites and stories with substance about success. So one could argue that my why was to create that place and maybe it is a little, but I think its deeper than that.

Yes, I fully understand that my daughter is a healthy thriving young child and that my deepest anxiety’s of tumors, cancer or other abnormalities are slim, but they exsist. They are real possibilities. The more prominent concerns I hold are those of the mental trauma. Self esteem issues, embarrassment,  ridicule for something she cannot control. An altered physical appearance to any degree can be more damaging to one than many understand.

I have had the pleasure of befriending several nevus owners and picked their brains about why they opted out of surgery, how they handled it growing up, and the limits it placed on them. I have listened to their fears and influences, and through those conversations, my why has come to light.

Do I really think that a $10 product from my local nature store or small business is going to cure Mermaid’s incurable disease? I dont know. Do I really think that relentlessly calling research centers across the country is going to spark a study of this underrated form of her disease? I dont know.

I say I dont know, because had you asked me 3 months ago if I would have a website that attracted 1,000 views in one day, relationships with organic business owners covering my entire state and be receiving gifts of products & support in my mailbox,  I would have laughed.

I believe that we see what we want to see in every situation. I saw an opportunity to gain knowledge and bring awareness and its slowly coming to fruition.  Yes, some of my posts may lack real data and seem silly to you. Maybe you think I am wasting my words, and to those of you who write me to tell me that, thank you. Thank you for pushing me to explore my why.

Why do I spend my time putting words to page that perhaps nobody will ever read?

As parents we put our all into our children. There is this well of love that pushes us to protect our young. When Mermaid gets older I want her to know that I did everything in my power to find relief, support, and strength from others living with the same blemish. I want her to walk with pride and not shame of her “birthmark”. I want her to know that she is not alone. If I can use my passion of writing to help soften the inevitable blows she will encounter, so be it.

So there it is. My why is not to gain followers, or find a cure. My why, is love.

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I will continue to search for answers and post blips that may seem of little value to you. If along the way we make some friends, find some cool products and can use this network to bring awareness to ALL forms of Nevus, well I would love that just as much.

Now excuse me while I return a call to a research center here in Oregon that has taken interest in my inquiry.

Thanks for walking with us today,

Mermaid’s Mommy