Tag Archive | Mermaid

Fish out of water Part duex…

Aug9

Ask and you shall receive, maybe not the first try, but try, try again we did! We recently reached out asking for advice from our readers about their knowledge and/or experience with nevus owners overheating. We received a lot of good information but nothing lined up with Mermaid’s “LEN” so I began doubting the cause. I started researching and honestly, came up a bit empty handed so I went back to ground zero and looked at her biopsy again. I often forget that the official pathology report came back as Epidermolytic Hyperkeratosis WITH Linear Epidermal Nevus, not vice versa so I restarted my search on the EHK and wouldn’t you know, it was everywhere!

EHK is a form of Ichthyosis and the information linking the two with potential overheating was abundant. It was relieving to know that my original gut feeling that the cause was related to her genetic disease but a small piece of me needed validation. After all, what if I was wrong and ignored signs of some other underlying condition. The chances seemed slim since she has otherwise been a healthy thriving child but I reached out anyway.

Our first (and I anticipated only) connection was with Mermaid’s general dermatologist. I was shocked that without a doubt not only did he say that her LEN had zero connection but he stated that I possibly misunderstood her biopsy and she did not in fact have EHK. I spoke to him about a plethora of information we had received from the children’s hospital directly related to her EHK and he admittedly stated that this was out of his wheelhouse but stood by his stance that there was no connection. Perplexed and frustrated I reached out to her Primary Care Doctor as the dermatologist advised to begin the search for an underlying cause.

Primary Care seemed as equally perplexed as I was and again eluded to this being a bit out of their wheelhouse, they were slightly taken back at us being directed to them but did some research and found a few possibilities. There were a few “conditions” that also had links to dermatological conditions that could be the underlying cause so we agreed to go forward with testing. Her PCP felt obligated to search for anything he could and being that we were led his direction we were going to travel that road with him without question. That same night with the promise of SEVEN new toys (thank the lord for the dollar store) I carted a screaming Mermaid in for blood tests and her chart was sent to neurology for a chart review. Most of the tests were straight forward and results poured in less than 24 hours later. Negative after negative after negative. I was happy, but still felt frustrated to have no concrete answer or validation.

The following morning as soon as I started seeing the negative results I made one last attempt at answers and reached out to Oregon Health and Science University where the Pediatric specialist for dermatology we previously met with resides. On our luck he had a same day appointment and off we went.

I left happy, aggravated yet understanding on all fronts. On our third connection we were assured that yes, Mermaid DOES in fact have a bit of a double whammy. She has EHK & LEN, just as I thought, EHK is a form of Ichthyosis and BOTH of them have the potential to cause overheating depending on the location. The vast majority of Mermaids fills her left armpit and as a result has clogged her sweat glands preventing her body from cooling itself properly. Essentially it causes her to internally heat up quicker. I suppose this sheds a small light on my midget sized nudist.

So now what? Well, the PNW has had some higher than normal temps and we have definitely learned that above 90 in direct sun she enters her danger zone. In the absence of a body of water we are limited to where we go if it the heat reaches that range. We started using Tazorac for a few weeks to see if we can thin the thickening near her sweat pores to allow some breathing room. There is no guarantee but smack dab in the middle of summer, any small relief is a huge feat. We followed up with all entities to ensure them it was in fact a direct result of her genetic disease and also advised that a body temperature above 105 is directly to the ER opposed to attempting to cool her ourselves at home. I guess I should replace that thermometer she broke.

We appreciate everyone that reached out to us and shared your wisdom, I can assure you that the moment you see your little one turn purple, vomit and fall asleep so deeply it’s hard to wake them, you too would be in a bit of a panic. I can’t possibly begin to imagine how she felt. I compare it to those of us without an underlying condition attempting to run a marathon in 105 degree weather while wearing a sweat suit and no water to drink. I’m so proud of how smart my Mermaid is to recognize when she has been out in the sun long enough. She is very vocal in telling me it has been enough and time to go, brings herself inside to cool off knows to continue staying hydrated. She has had so much to learn about in her short 4 years on this earth and always adjusts without a hitch. Maybe Mermaid’s are smarter than we ever knew!

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Here’s to hoping we have an otherwise eventless summer!

Thanks for walking with us today!

Mermaid’s Mommy

Fish out of water…

Jul24

My Goodness, It’s been ages since we have given any kind of update, which might lead one to assume that all has been calm on the bay front but it’s actually the complete opposite! Spring led us to Doernbecher Children’s Hospital where we obtained some very useful information but between her short baseball season and additional appointments we have been noticeably absent from our virtual home.

We have many posts coming soon about all Mermaids new discoveries throughout Spring but today there is one main issue at the forefront of our fins. I distinctly remember one of our very first appointments a brief mention that “she may have some blockage of her sweat glands” and that was that; until now there has been very little thought placed on that statement but I never forgot. Summers have always been fine, she often claims she is “hot” on a regular basis and keeping clothes on her is a mission in itself but honestly, I chalked it up to being normal with NO concern whatsoever.

About a month ago we were at an outdoor birthday party, the day was especially hot for our area and the yard offered little to no shade. They had games with water balloons, plenty of cold fluids and ice cream so even though it was a scorcher, everyone tolerated it just fine. Mermaid has long been asking for a new play kitchen and the little girl celebrating her big #5 just happened to have one in the house along side her Mom’s real kitchen. Throughout the party I kept finding Mermaid in the house near that kitchen, My initial thought was that she just wanted to sneak off and play with it so I continuously led her back out to the party in the yard. She participated in a game where they placed water balloons on a spoon and had to run to the end of the yard and back without dropping their balloon. As I stood at the end taking pictures I noticed she seemed more flush than anyone else. When they were done she quietly went and sat on some steps by a bubble machine. I snapped a picture and when I set my phone down I noticed her color had drastically changed to a purple shade and her breathing seemed somewhat labored. I went from this is  just normal hot weather behavior to “Oh my Gosh what is happening”  in 2.7 seconds flat. I scooped up Mermaid and ran her in the house, she had no energy and I took her dress off as quickly as possible. For the first time in our lives I instantly knew what was happening. She was truly overheating. The left side of body where her nevus lives was bone dry and the right side was drenched. She begged me not to put it back on and began to cry. Within minutes I apologized and rushed her to the car and blasted the a/c. By the time we got home, almost 45 min later she was still roasting and eventually threw up. I felt terribly guilty for having her out in the heat like that and prayed it was a one time fluke.

Not so lucky, a few weeks later we were at a family members graduation party, again, it was a hotter than normal day for the PNW and we were outside. We were at my brother’s house and there was a bit more shade than the previous party plus they have a small pond that the kids typically flock too to catch frogs and tadpoles. More aware of her potential to overheat I kept a closer eye on her and just like clockwork, she went from fine to that scary shade of purple again within seconds. This time family was present and keeping an eye on her as well and because she refused to miss the chance of catching a frog we made her continuously return to the table for drinks of cold fluids, gave her ice cubes to hold and a wet cold rag to hold on her face and neck. Just as before the concern grew to the point that we chose to make an exit but this time left before it got so bad she threw up!

Just yesterday we went to visit my parents at an outdoor market where they had a booth set up, it was significantly cooler than the other two days that incidents occurred but still hot and I was very aware of the potential. She started out by sitting in my parents chairs eating some lunch we brought but shortly found a table in the shade behind their booth at a local restaurant. She seemed happy there but a worker quickly approached us and asked us to leave the table. I kindly explained that she would be done eating in 2-3 minutes and pointed out that there were multiple other open tables so I  bought Mermaid a short window but her retreat from the direct sun ended quickly.  We were not there long before she sat on the ground and proceeded to try to take her clothes off. I quickly stopped her and said No baby, not in public, when she grew weepy and said she couldn’t wear her clothes anymore. She proceeded to tell everyone she was too hot and that was my queue, off we went. Once in the car and a/c she used my water bottle to hold on her face and neck and kept asking me to turn the air on, despite the fact that it WAS on and cold enough I was looking for a sweater. Within minutes of being home she threw up. Daddy and I go her some cold ice water, a fan and had her lay down to rest while continuing to cool off.

So here we are, a random overcast day and I am reaching out. My gut says that this reaction is linked more to the EHK than LEN and is just now coming to life as her Nevus has slowly spread & thickened over her sweat glands on the left side. I can not find any direct information linked to her LEN that suggests this is a potential side effect but most Ichthyosis articles have share a direct link to overheating. Additionally, I read an interesting piece stating that the rapid turnover of cells in individuals with Ichthyosis require more energy thus meaning the host needs more calories to grow. Maybe, JUST maybe, this could be a link to Mermaid’s insatiable need to always be snacking like a teenage boy. I also cannot say that any of our followers with ILVEN or LEN have spoken to this directly and perhaps those with congenital, Giant or Ichthyosis can shed more light on this topic?

Mermaid falls in this weird category where she has three (One we recently received @ Doernbecher that we will share later) separate diagnosis working together to complicate the understanding and treatment. Is it simply that we need to acclimate her body leading up to summer or trips to warmer climates or is there truly no way to prevent it? Will sports be an issue? I am reaching out today looking for your expertise, tips & tricks to help us in our newest conundrum. I am at a loss as to who we should go to first to discuss it. Her PCP, her dermatologist or her genetic specialist @ the children’s hospital. Help guide us!

Coming up we have a new trial of a natural homemade cream thanks to a local friend, will dabble in some more salve making ourselves with intentions to get some out to a few of our special followers and a post about some other new discoveries added to Mermaid’s ever-growing list of diagnosis.

If you have experience in the overheating world please share your thoughts! We look forward to hearing your expertise and jumping back in to some nevus focused time!

Thanks for walking with us today,

Mermaid’s Mommy

A new beginning to an old problem…

Mar31

 Those of you that have been following us since day One, know that we have had our ups and downs with our healthcare system regarding Mermaid’s nevus. For the most part we feel taken care of and have access to care in many forms. However, we do not have access to a pediatric dermatologist or one who specializes in “Genetic skin diseases”; which has left us perplexed at times and receiving a variety of responses and care plans that range from aggressive to very passive. Several years ago I requested to see a specialist at Oregon Health and Science University and was denied. In recent months Mermaid has developed new spots and symptoms that sent us searching for another avenue to make our way up the hill.

This past week, our persistence and patience paid off. At the recommendation of a fellow Nevus Mommy’s pediatric Dermatologist on the East Coast, we got our day with Dr. Kroll. A pediatric Dermatologist that specializes in genetic skin diseases. Leading up to today I knew what we wanted answered specifically and got those answers, plus some. The main concerns I wanted addressed were… What are these new spots that don’t appear to be nevus? Will she have to have surgery at school age? Despite the biopsy not showing ILVEN, is it still a possible diagnosis? and what is her real risk factor for a Wilm’s Tumor?

I will start with what we learned followed by the answers to our questions and then our treatment plan.

Mermaid’s main diagnosis was Epidermolytic Hyperkeratosis (EHK) with Linear Epidermal Nevus (LEN). We have always focused on the LEN and put little to no thought into the EHK, aside from it being a bit more rare than the LEN. Well, news to us… the EHK comes with its own potential complications. We learned that sometimes, a female with EHK on one side of the body may have it on that parallel ovary. If/when she chooses to have children she runs the risk of passing on that gene in a full body form called Ichthyosis to her children. This is a small possibility, studies have shown that it’s a 2-10% chance but we were advised to have her be seen in genetics as a late teen to further discuss this and they hope with medical advancements that they will have a test to better diagnose whether or not the disease is actually on her ovary.

He felt certain that she does not now, nor ever will she, have any of the larger complications of her LEN resulting in the syndrome. Those symptoms typically arise at a very early age, with the exception of potential learning disabilities such as delayed speech, which has never been an issue, trust me – she speaks just fine and knows more than she should to be only 4!  He reminded us that any small lump beneath the skin should be checked as there is a risk for squamous cells to develop.

As we already knew, he reiterated that there is no effective preventative medical treatment, we should see the extent of her disease by puberty and along the way there are two different laser treatments that may help in minimizing some of her nevus but the only true treatment would be complete excision with the trade-off of scars.

With some new and old but reassuring information we got the chance to clarify some of our burning questions…

What are Mermaid’s new spots that don’t appear to be nevus?

Unfortunately, Mermaid got cursed with two genetic diseases. What we originally thought was eczema, then a potential reaction to a soy allergy has now been confirmed as Psoriasis.

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At the time of her appointment Mermaid had roughly 27 spots like the one above spanning head to toe. Including her face. If you saw our previous post about the mystery spots, it was also confirmed that the scales beneath her eye are Psoriasis.

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Will she have to have surgery at school age?

The long and short of this question is still, we don’t know. The area of concern is Mermaid’s hand. Her Nevus grows thickest at her wrist and top of her left  hand. This is also the only area that has cracked and bled. When her Nevus breaks open she is at risk of further infection. It can also cause pain and limited movement when it grows over the joints. His initial feeling is no, we will NOT be doing surgery next year. This was a huge relief, the thought of putting my child under and performing a very painful excision at such a young age was worrisome. The reason we cannot get a direct yes or no to the surgery question is that Mermaid’s form of Nevus grows with no rhyme or reason and putting a definitive answer on the future is nearly impossible. If it remains as is or has only a small amount of growth we are in the clear. If it grows extensively in the next year we run a higher chance of following through with surgery. One of my fellow Nevus Mommy friends shared pictures and experiences of her daughter’s hand surgery and it truly broke my heart. She is incredibly strong and did great but it was far from a pleasant experience for her or Mom.  Please, please, please… keep your fingers crossed!

Despite the biopsy not showing ILVEN, is it still a possible diagnosis?

In the big scheme of things the difference in diagnosises is minimal and doesn’t mean a whole lot. So why would I care? Up until now, I have been told that ILVEN can be treated with steroids to reduce discomfort, redness and inflammation. I have asked before about using it for her bothersome areas but was told it is not a treatment used for LEN. Being seen on the hill was my goal because they are the specialists and just as I originally suspected, he said that even IF another biopsy showed ILVEN, it would NOT change the treatment plan. He stated that ILVEN & LEN are treated the exact same and we would begin treating it today.

and last but certainly not least… That lingering fear since Day one of her diagnosis…

What is her real risk factor for a Wilm’s Tumor?

The very first day Mermaid was diagnosed we were told point-blank that we needed to be aware of something called a Wilm’s tumor, childhood kidney cancer. She would be at risk until age 5. Since that day I have probably prayed harder than any Mom out there for her 6th birthday. I have vowed it would be the party of the century because that day, she would no longer be at risk and I could lay my anxieties surrounding this cloud to rest. Along the way the other dermatologists did not all agree but they also didn’t dispel the possibility. Nobody seemed to have numbers or facts supporting it so we continued to be aware.

Dr. Kroll finally put a stop to the worry. He seemed a bit surprised as we told him about this and very matter of fact stated that he has never heard this, especially in an otherwise healthy child without the syndrome. He said that if she had some of the big components of the syndrome such as one side of her body being larger or boney structures there may be a study or two to support a link, but in her case, No.

I’m sure you can imagine both my frustration and relief. Letting go of my frustration was easy, after all; this is why we pushed to be seen there.

So overall we learned of some potential side effects Mermaid’s EHK, that LEN & ILVEN can be treated the exact same, that we will continue to watch her hand’s growth over the next year, that she is now the proud owner of EHK, LEN, AND Psoriasis and best of all, that the risk of a wilm’s tumor is no higher than that of any other child.

Up until now we have not treated her skin issues in any way. We have done a few prescription strength creams such as Nystatin and 1% Hydrocortisone but mostly use home remedies to doctor what we can. That has all changed.

Hanging on my fridge is a crazy calendar marking out what medications need applied what day. We are starting a retinoid called Tazorac to be used specifically on her wrist and hand 2-3 times a week, Triamcinolone Ointment for her torso twice daily and Tacrolimus Ointment on her face and neck 5 days on 2 days off.

In one month we will re-evaluate its effects and create a plan from there. It’s a lot, it feels slightly daunting but I am beyond thankful that we are finally beginning a treatment plan and hopefully bringing her some relief. I am also thankful for our amazing insurance that covered the $750 cost of a months medications.

I have no doubt that in a few short weeks we will be reporting about success!

Moving forward we will now be followed @ OHSU for annual check ups and any major changes. For non urgent concerns and medication refills we will still utilize her other dermatologist. It feels like we are finally on a satisfying path.

Stayed tuned for happy updates!

Thanks for walking with us today,

Mermaid’s Mommy

Mystery spots…

Mar11

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

 

A new shell…

Feb18

This is my life book. It has been by my side for almost 6 years now. It is always near me. I carry it in my bag and it’s rare the two of us are far apart. When I get to work, I take it out of my bag and set it next to my computer.

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It’s tattered, torn and hanging by a thread, but you know what – it’s full of so much love. Inside this book are my ideas. Those pop in your head, don’t want to lose them ideas. It has over 5 years of finances carefully listed and checked off month after month. It has party invites, my step son’s 8th grade graduation program, Mermaid’s official pathology report from September 2015, a picture of a friend I just lost, stuck through the back pages is a guardian angel pin gifted to me. Some of the pages are burnt as I was writing in it one night by the fire when I was pregnant and a hot ash caught it on fire. It holds a card my husband made me, a goodbye note from a Physician & friend I highly respected that moved away, a list of all the places I want to visit and a recipe my Mom hand wrote.

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Just last week the entire cover started tearing off and I taped it up with scotch tape. One would think I could just go buy a new one but it holds sentimental value. As I was taping it up I thought to myself, this is kind of like my life right now. Barely held together, full of so much love, but in need of a new shell.

You see, these past few weeks have been more trying than I can even begin to explain. Mermaid had what I thought was nevus starting to grow on her face, the moment it started to bleed I finally took her to urgent care, with no answers we were led back to dermatology and thank the Lord, it just ended up being eczema but we are now battling that. I have had some challenges at work and been faced with making very difficult decisions, I have had to allow myself to be vulnerable, fight anxiety and search within for what was the right thing to do. A few days ago I woke up overcome with grief. I sat down in the shower and sobbed, missing my friend who passed a few months ago. Her passing is still fresh and has completely altered my life. I barely made it to work and while there, I wished I cold just get in my car and drive to heaven to have a cup of coffee with her. That being completely unrealistic, I contemplated driving anywhere, just going, clear my head, but I didn’t. I stayed, I held up my responsibilities and tried to power through.

Mid-week I told myself to shake it off. I have so many blessings and hard times will come and go. Find a new shell.

That morning when I got to work, there was a package from a friend. It contained a Mermaid journal, a coffee card and a letter with 9 reasons why she sent it to me. So once again, I sat there crying. This time, happy tears. She spoke to work, my Mermaid and the loss of my friend, but #9 was my favorite. “Just because!”

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She didn’t know about my life book until I told her that morning, she just knew I was struggling to find peace.

She gave me my new shell.

When  I told her how much it meant, she kindly said “See, people are listening.”

It’s easy to forget our blessings, to dwell and struggle to find our footing; and that’s ok because somewhere along the way, something small will remind you. Give you a breathe of fresh air and a chance to start new.

I put some of my hard decisions in motion, I started yet another nightly routine for Mermaid’s skin and I talked to my friend driving home that day. Ok, so I talked to myself, but I know she heard me. I told her to help me find a way to let go, not forget, just let the grief go.

Yesterday Mermaid was suppose to be cleaning her room but instead she made me a bracelet. She was so proud of herself and asked me to wear it to work. When we got home today she found it on the table and said “Mommy, you forgot to wear your bracelet to work” – ashamed, I apologized. A few minutes later she came out of her room with a different bracelet and said it’s ok, you can wear this one, it’s your favorite. This was not my favorite bracelet, it’s not even mine, it’s hers. She can’t possibly remember where it came from and why she said that, or chose it, I can’t explain; but I remember where it came from. A few year’s back, my friend that passed, gave it to her while we were visiting in Seattle. Maybe it was her small way of reminding me of the good times, telling me it’s ok and that she heard me.

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This weekend as I transfer my life book to it’s new shell I will embrace the new beginning and here are 9 reasons why:

1.Because I have an amazing family that supports my every move.

2.Because I know deep down inside, the hardest decisions are often the right decisions.

3.Because as of now, Mermaid has no complications as a result of her disease & we can jump any other hurdles thrown our way.

4.Because I have 18 amazing years of memories with my late friend to smile about, not cry about.

5.Because when we think nobody is listening, they are.

6.Because today, I felt the sunshine on my face for the first time in a while and it reminded me that the clouds always clear.

7.Because the positives I gain through work outweigh all the negatives.

8.Because I am slowly learning, 35 years into this life, that it’s ok to stumble as long as you get back up.

and

9. Just Because!

My Dear Kathy – I thank you for my new shell and your humorous but powerful words. I thank you for listening. I thank you for reminding me of the good. My promise to you is to listen to someone else, and when they least expect it, send them a new shell.

Today, you are an honorary Mermaid.

Thanks for walking with us today!

Mermaid’s Mommy

…And… We are back!

Jan29

Well hello there! Welcome to 2017! We last left you a note that we were taking the holiday season off and that’s just what we did; but it’s time to dive back into things. As I’m sure you all know, the holiday season can be all encompassing. We wanted some time to focus on another project and be present in all the winter festivities. Some things went as planned and we promise to share about that later but honestly, life had a different plan for us these past few months and we went through some personal struggles regarding loss. That too, we will share down the road but I’m not quite ready to go there.

For now, let’s catch up on where we are at in the Nevus world. We gained some new followers during our break and fresh faces are always looking so I will give a quick reminder of why we are here.

My daughter was born with Epidermolytic Hyperkeratosis, specifically Aconthotic and hyperkeratotic epidermis with focal dyskeratosis including linear epidermolytic epidermal nevus and epidermolytic acanthoma, a hemangioma and a stork bite, also a form of nevus, on her neck. The hemangioma never grew, it’s the same size now as it was at birth but her stork bite, also a form of nevus, has continued to grow and her LEN has opted not to slow down. In comparison to others we feel blessed, her LEN remains light in color and relatively flat but continuously changing.

What does all of that even mean?

Broken down, it essentially means she has EHK and LEN.

Linear Epidermal Nevus (LEN) is a rare genetic skin disease effecting about 1 in 100,000 people that typically effects the limbs and torso. Her particular kind sticks to one side of the body, in our case, her left side. In infancy it is light tan and flat but will thicken, darken and often become warty as one ages. There is a possibility of skeletal, bone, ocular and neuro abnormalities that may develop; in which case it would be consider a “syndrome”; the lesions alone do not indicate a syndrome. There is a chance that the lesions may develop tumors, some benign, some cancerous. Open lesions are susceptible to infection, causing further health risks. About one in five people will experience a malignant cancer in their lesions.

There are many other forms of Nevus including Congenital, Sebaceous, giant, and closest in kind, ILVEN. It is caused by a genetic mutation in the ectoderm during gestation. At this time there is no “cure” – though there are potential medicines and procedures to help with discomfort and visualization. Occasionally, surgery will be warranted if the size or site indicate so. Excision is the only true “cure” for LEN or ILVEN. The rest is all maintenance so it all depends on how severe your specific case is.

The subtype of Epidermolytic Hyperkeratosis (EHK) is even rarer than LEN. It effects about 1 in 250,000 people and makes Mermaid’s skin fragile. There are two types of EHK, my daughter’s is the NPS type. We will explore that more this coming year. The dyskeratosis and aconthosis is a fancy way of saying there is an abnormalization of the skin keratin causing thickening.

So where are we today?

Currently, we are on our 3rd dermatologist and live day to day with what the future may hold. We have been blessed that thus far she has not developed any of the potential abnormalities and most likely wont, with one exception. Her vision, her eyes were checked about 1.5 years ago and they questioned her vision a little bit. As a result our new dermatologist recommended we follow up. We will be seeing the same pediatric opthomologist, which we LOVED,  for our second time in a few short weeks. The obvious things they are looking for are cataracts and colobomas, some people refer to an abnormality as a “key-hole.”

Additionally, Mermaid’s disease is growing on her hand, over the joints. Nothing has been set in stone but all 3 dermatologists have mentioned the potential of needing excision surgery near school age. We are a ways off from that so I can’t speak to that more than saying it is a possibility.

One of the first things we were told was to be aware of was the potential of developing “Wilm’s tumor” – childhood kidney disease. This has been controversial from source to source but nonetheless, is there. She will officially be in the clear at age 6.

Over the past few months Mermaid has developed a new spot on her back and the base of her skull that are itchy, raised and extremely bothersome. We are waiting them out to see if they progress but will probably go in to have them checked soon.

Where we are today is night and day to where we began. In the beginning I was scared, plagued with anxiety, confused and uneducated. I now have a good grasp on what we are dealing with and the anxiety has mostly subsided. I say “mostly” because there is always that lingering fear of cancer, be it in the form of melanoma or kidney cancer, that, I will never shake, though it is far from the forefront of my mind, more of a foot note.

We have grown so much as a result of my relentless research and support from everyone here at Mommy’s Mermaid.

To our new followers, we welcome you, and thank you for joining us, to those just browsing, thanks for stopping by, and for our long time friends and followers, we appreciate and love you all.

We look forward to spending the next year sharing our journey, hearing your stories and hopefully making progress and new discoveries in the nevus world.

Cheers to 2017!

Thanks for walking with us today!

Mermaid’s Mommy

MollyMadison making smiles!

Oct3

We have so many talented people in our lives; from top chefs and bakers, to woodworkers and tanners. One special friend is a master at crocheting, you know… that thing with yarn.

Crocheting came around in the 1800’s and has long had a place in history. In the 20’s you saw it being worn in the form of hats & dresses then in the 40’s it became part of the wartime effort, women making items for the troops. In the 50’s & 60’s the art exploded, patterns blew up and you could find items nearly everywhere, if you have never checked out some of the crocheted clothes from the 60’s, you really should do yourself the service and look it up! It seemed to fade off a bit, the world was changing fast and it was kind of left behind, but not for long….

Today you can find blogs, websites, patterns, pretty much anything your heart desires to see and know about the crocheting world right at your fingertips on the world wide web.

There seems to be this age-old argument of what’s easier or better? Crocheting or knitting? I personally have tried both, and I personally can NOT do either one. It’s not my strong suit. Which makes me thankful to have someone in our lives that holds this talent!

In true mermaid fashion we received a gift from our friend Molly in the form of a mermaid tail. From the minute my Mermaid laid eyes on it she was in love. She hugged it and wouldn’t let go! We had to make a deal that at bedtime it was to be put up until the morning. I awoke to not only a Mermaid in my bed, but a mermaid TAIL in my bed! When asked how it got there she told me “It got up and walked here!!!”

She loves her tail, and I love that it was made by someone special. The other day Mermaid came up to me in the kitchen and said “Mama, I don’t want my scales to go away”, I said good, because they’re yours to keep! her response? “because the mermaid’s made a spell that gave them to me!” and I told her that was right.

Her wanting to keep them is a far cry from a few weeks ago when she told me they were disgusting, so I will embrace it. The gift means so much to us, to have people that embrace her story and help cheer her on in all the smallest of ways warms my heart.

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We thank you for our gift!

Molly is truly talented and I encourage you to take a look at her online shop. There will always be new things added!

https://www.etsy.com/shop/MollyMadisonHOC

Thanks for walking with us today,

Mermaid’s Mommy

From hiding to Hollywood!

Oct2

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…

Sep29

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…

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