Tag Archive | epidermal nevus

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

A threenager’s thoughts…

Sep13

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

Buzz buzz little bee…

May12

After using a product called WartPEEL on Mermaid’s thicker patch of Nevus it proved to be raw and a bit painful. I had been sent some amazing products from a company called Wild Carrot Herbals and amongst them was a salve. I personally had never used one but thought it might be the trick, within 24 hours all the rawness, swelling and discomfort was gone. I was beyond tickled and started reading more about “salves”.

Mermaid has one particularly “itchy” spot on her back so I thought I would take a swing at making my own. I researched all the ingredients that potentially soothe dry or itchy skin, a few recipes and came up with my own concoction.

I’m blessed to have a lot of savvy people in my life so most of these ingredients were gifts from people’s own labor’s of love. I included:

Pure raw honey – (given a jar from the neighbors hives)
Organic Beeswax – (given a bar made by my parents from their swarm)
Shae butter – (given a pure bar from a local Oregon company)
Lavendar oil – (a gift from Mermaid’s Grandma)
Coconut oil
Baking soda

The process in harvesting beeswax is interesting and my Mom had some pretty great pictures – here are a few.

We gathered our ingredients:

Started prepping them, if you have ever tried “grating” beeswax, it’s not easy, Mermaid gave up on that part and let Mommy finish.

Melted part of them together:

Time consuming, I learned quickly that slow and steady is required. After it was all melted we removed it from the heat and slowly added our other ingredients.

We poured it into a few containers and waited for it to cool. I feared for a minute that it might not bind, it stayed liquid for better than an hour and we continued to mix it, but eventually, it became this nice smooth product.

Given the ingredients I expected it to be slightly oily, which it is but we put some on Mermaid’s arm and it absorbed quickly with less grease left behind than I assumed would be present.

We added a little garnish and closed up our afternoon project.

I suppose the real test will be to see how well it really works, I have high hopes!

We are going to ship a container to one of our “itchiest” Nevus babies on the other side of the country and let them be the true judge.

We have plenty of leftover ingredients so I feel a round two of a lotion coming on.

Round one of find a natural aide complete.

Thanks for walking with us today,

Mermaid’s Mommy

Lost in translation…

Dec19

I feel like we have been consumed by the holiday season, in a good way, but off the grid for a bit. I finally got to work and made some changes to our website.

We now have a page titled “Honorary Mermaid’s” that will house stories about other people’s journeys, afterall – were all in this together! A Mommy’s Mermaid follower and fellow support group member will be featured in January. Looking forward to finally meeting in person and hearing her story.

All other pages have new and updated info so swing in and catch up!

I wanted to share a quick update after our wartPEEL trial. Mermaids nevus is still flat and smooth a month later. She is so proud of it and often shows me how her “owie is gone” – though inside I expect it will return in time, I will take all the days we get without an elevated, painful, itchy nuisance stealing her focus.

Here is a picture of before and now…

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So stop in, see what’s new and we have more to come over the weekend.

Hoping this holiday season is greeting you all in good health and good spirits.

Thanks for walking with us today!

Mermaid’s Mommy

Signed, Sealed, Delivered…

Aug28

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!

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.

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).

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

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

The Why?

Jun29

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.

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

Can Mermaids see in the dark?

May12

Armed with starbucks and Tom Petty we headed off in the typical PNW drizzle for an appointment with our normal dermatologist.

The main reason for the visit was discuss treatment options for several spots that seem to bother my mermaid. Particularly a chunky spot on her wrist. Im not always certain that at 2 years old she really knows what pain is but she says owie and picks at it. Despite it being painful it seems to be growing and she asks me to take it off.

Our dermatologist consulted with some specialist at OHSU and nixed my original inquiry about co2 treatment. The down side is that it can leave scarring, have a painful recovery and really is not removing the nevus. Their suggestion was to have extraction done. The conversation always comes up that at such a young age that would require sedation. They recommended we wait until puberty to have the surgery done unless things drastically change for the worse.

The second recommendation was that we have an appointment with an opthamologist. ENS (epidermal nevus syndrome) is a rare congenitally acquired syndrome characterized by the presence of epidermal nevi and various other developmental abnormalities. One of which can be an ocular abnormality Such as a colobomas of the eyelid, iris and retina, corneal opacities and cataracts. Colobomas are found in about 0.5 to 2.2 cases on 10,000 births.

The good news is that even if cataracts orcolobomas are present, they may not effect her vision.

Regarding my #1 fear of the Wilm’s tumor I was told no imaging is needed, at well checks her Dr. Will palpate her abdomen and to watch for blood in her stool. The statistics show about 1 in 10,000 children are effected and her risk factor slightly raises the bar but its one of the fears I have to let go of. If it happens it happens and we will deal with it at that time.

So now where does our journey take us? Well, in a few short weeks we will see the eye Dr. And get answers there.

In the meantime I was given a slew of products to try on her hand to eliminate the roughness and appearance And one I purchased on my own.

The Amlactin creams have whats called glyceryl stearate in them which is found naturally in animal and vegetable fats.

I am going to give each product a 2 week trial. I will take before and after pics of those 2 weeks to see if their is a visible improvement and note behavioral changes as well.

First up will be my personal choice of the Argon oil milk & honey soap. It is made up of olive, coconut, RSPO certified palm & argan oils, farm fresh goats milk and local honey. It is made here in Portland, OR. You can check out their products at http://www.camamusoap.com

I feel as though every time I understand my daughters disease another potential issue arises but thats why I am here, to educate myself and others alike on what this walk will look like.

As we continue to move through our journey I again thank all of you for reading and supporting us. I am striving to find all the best treatments for my Mermaid and continue to encourage her to embrace her special scales. Her dermatologist encouraged me today to have conversations with other parents she goes to school with to elimate questions or fears of what it is and I plan to do just that, starting with you 😉

Thanks for walking with me today,

Mermaids Mommy

The difference in you and I

Apr22

Adult relationships are far different than those we held as children. We no longer have to give every child in our class a Valentine, could you imagine the confusion on the IT guy’s face when you handed him a big heart card with a puppy on it?, we don’t have to stand in a single file line when traveling from one place to another, might be odd to line up for lunch and potty breaks these days, and we certainly don’t have to “buddy up” with the kid in the class that called us names during recess the day before. We now get to choose who get’s our Valentine, who we walk with from one place to another and who we buddy up with.

In thinking about the people I have chosen to walk with I note such vast differences. For some of us the happiest place on earth REALLY is Disneyland, for others it’s a concert with a microbrew, and for some of us it’s anywhere our children and/or spouses are. Some of us are quiet and mythodical in our thinking, not responding until we have thought things through and others quick to speak. We are made up of diabetes, birth marks, scars, missing organs, eczema, depression and that’s just to name a few.

I personally am the quick to speak, a bit more brash than others, the complicated unpredictable type. I am a NY Yankees fan in the pacific NW, have a soft spot for saddle shoes, still think 90’s grunge is the greatest genre of music, have a small obsession with the mafia and secretly wish a mini horse lived in my house.

When I was younger I traveled a lot and spent years in several different states. These travels were where I learned the true beauty of accepting ones differences. I remember moving 1500 miles from home and everybody I met had just done the same. We were a hodge-podge of transplants light years from being on the same page. So we had 2 choices, embrace one another or be alone. I will never forget one of my friends telling me she left home because she just wasn’t the same as everyone there and she needed to find people more like her. I understood because I felt the same way. To be honest, I don’t think either of us ever found those people just like us, but I know for a fact what we did find, was acceptance. Sometimes, that’s all we need. Knowing that no matter how we look, act or that what we believe in will not make us an outcast but make us unique and special comes with comfort. Having my differences accepted led to some of the greatest adventures and friendships ever made.

So what does this have to do with my Mermaid? EVERYTHING. My recent pondering reminded me that she too, will be different. Different from me, different from you and different from 999 out of 1,000 people in a crowd. How I teach her to own her differences is going to impact the people she chooses to walk with.

I feel confident that the people beside me will help to encourage my daughter through her journey and always remind her she is beautiful because they too, are different and understand that. I also know that will not always be the case. She will be faced with challenges and need to learn on her own how to overcome those.

So tell me… when faced with difficulties due to being different, whether it was yourself, or your child, how did you handle that? How have those of you dealing with a “visible difference” moved through life with confidence?

Friendship is born at that moment when one person says to another: ‘What! You too? I thought I was the only one. ― C.S. Lewis

– Mermaid’s Mommy

Mommy's Mermaid

Our Journey

Tag Archive | epidermal nevus

From hiding to Hollywood!

A threenager’s thoughts…

Buzz buzz little bee…

Lost in translation…

Signed, Sealed, Delivered…

The Why?

Can Mermaids see in the dark?

The difference in you and I