Tag Archive | rare disease

Scrub a dub dub…

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

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

MyCollage_46

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

Let’s talk about some of the benefits of these 4 products.
  • Sea salt can help push all toxins out of your body, the skin becomes soft and healthy. It has been seen that regular sea salt baths can enhance the skin tone to a large extent. The magnesium present in the salt can prevent the retention of fluid from your skin keeping it supple, firm and youthful.
  • Sea salt is full of vital vitamins and minerals, which are required for providing proper nourishment to the skin cells. These nutrients can improve the cellular energy metabolism, keep the tissues hydrated, boost blood circulation throughout the skin surface and increase the strength of cell membranes.
  • The calcium content of sea salt can help in cleaning up clogged skin pores. If you have an acne-prone skin, go for the sea salt pore cleanser. It keeps your skin clean and clear by reducing the chances of skin infections.
  • You can also use sea salt as a natural exfoliator. The texture of this salt helps remove the upper layer of dead skin cells and reveal a fresh one underneath that.
  • Epsom salt is very beneficial for the skin. Application of this salt on moist skin gives it a soft and smooth appearance. It also acts exfoliates and removes all the dirt and dust accumulated on the skin making it fresh and young.
  • The anti-bacterial effects of coconut oil can aid in acne treatment. Actually, this skin oil comprises of high amounts of lauric acid and capric acid, which are antimicrobial agents that treat acne. Using coconut oil not only treats acne, but it prevents further outbreaks as well.
  • Coconut oil can benefit those with dry skin through acting like a skin moisturizer. A study explains that coconut oil is a highly effective moisturizer for flaky and dry skin.
  • Lavender oil benefits for the skin can be attributed to its antiseptic and antifungal properties. It is used to treat various skin disorders such as acne, wrinkles, psoriasis, and other inflammatory conditions. It is commonly used to speed up the healing process of wounds, cuts, burns, and sunburns because it improves the formation of scar tissues. Lavender oil is also added to chamomile to treat eczema.
We pilfered our cupboards for a jar and some craft supplies and went to work.
2016-01-24 12.47.38
Some scrubbing of the jar, a few artistic touches from Mermaid, a bit of a mess and….
MyCollage_47
MyCollage_48
 VOILA!
Mermaid and I’s homemade body scrub.
MyCollage_49
Happy relaxing!
Thanks for walking with us today,
Mermaid’s Mommy

Prognosis Happiness

To date, this is the most important piece I have ever written. Most important because our family can now embrace Mermaids disease with a true diagnosis  and make constructive but cautious decisions about our future with the right information.

We have so much to share you might want to pause here and move somewhere comfortable…

Ready???

This week we not only received the long anticipated biopsy results but got to meet Mermaid’s new dermatologist and I must say, she was a ray of sunshine in our cloudy little nevus world.

The next sentence is my favorite collaboration of word’s I have ever put to print. MERMAID DOES NOT HAVE CANCER. There is always that higher potential of cancerous cells developing in nevus owners but we are officially free & clear at this time. To be fair, we knew that piece a few weeks ago. Our Primary Care Dr. let us know but we wanted the final reading before sharing. Needless to say I slept a smidge better the night we found out.

Here is our official biopsy reading:

-Epidermolytic hyperkeratosis.

Exam demonstrates aconthotic and hyperkeratotic epidermis with focal dyskeratosis. The differential includes linear epidermolytic epidermal nevus and epidermolytic acanthoma.

So what does this mean? Officially, this means that Mermaid has linear epidermal nevus, which occurs in 1 out of 1,000 people. However, the rare subtype of epidermolytic hyperkeratosis only occurs in 1 out of 2/300,000 people worldwide.

There is a grey area, we cannot yet rule out ILVEN.  The biopsy site did not show the specific subtype but Mermaid has had several occurences that I was able to photograph and share with her new dermatologist. She agreed it was inflammation and said it may in fact be an early onset of ILVEN. We will wait and see what the nevus does from here on.

I know not everyone understands what this means so I’m going to break it down a bit more.

Linear epidermal nevus (LEN) is an uncommon skin condition. It usually affects the limbs and torso on one side of the body. The lesions are typically present at birth. LEN is the result of a genetic abnormality. It is not inherited but arises from somatic mutations in cells that occur after conception.

Linear epidermal nevus follows the lines of Blashko, which are invisible on the skin but thought to follow the paths which cells migrate as the skin develops before birth.

LEN can be linked to complications such epidermal nevus syndrome; abnormalities effecting brain, internal organs, eyes or bones. Tumors can also arise within the lesions. They may be harmless and simply need removal or may be a form of skin cancer.

We can happily report that as of this moment Mermaid does not harbour any of said abnormalities. All our tests and check ups thus far have come back clean.

If she does indeed develop ILVEN the potential treatment options and complications change a bit but the two are extremely close in comparison.

We were also told at our visit that Mermaids chances of developing a Wilm’s tumor are very unlikely as she would have already developed some of the other abnormalities effecting the organs. (I wont personally celebrate until her 6th bday!)

Mermaid occasionally gets small lesions on her scalp which we were asked to come in and have swabbed next time they occur. We were also able to discuss the possibility of Mermaids overheating being correlated. This is more common with giant nevus but it may be that Mermaids sweat glands are not working correctly in the area of her nevus. We cannot say definitively this is or is not the cause as there is no way of knowing for sure and we will continue to monitor it.

From the beginning of this journey I have been plagued by the thought of my Mermaid being teased or self-conscious about her “birthmark”. As we have learned more about her disease and gotten to know fellow Nevus owners that fear has only grown. The emotional effects can be devastating for Nevus owners of all kinds.

We have been lucky thus far that Mermaids nevus is mostly unseen by others with the exception of her arm & hand. Mermaid is very protective of her hand and rarely lets me photograph or touch it. At our appointment it was noted that her nevus is starting to come up over her palm. I can pray this doesn’t happen but on the chance it does I was FINALLY able to have that conversation about what treatment looks like in the future.

In the future, our dermatologist offered a form of cauterization in office that can help flatten and smooth the skin. We discussed both the pluses and deltas of co2 with a decision to avoid that route and of course, the talk of removal.

On the chance Mermaid’s nevus continues to thicken on her hand and move over her palm we will need to take action. At school age we will go through with removal. This can be done by our healthcare system here opposed to out of state which we originally thought.

This decision is based not only on a cosmetic and emotional basis but on the grounds of physical irritation it has caused.

I feel like it has been a struggle to get to a place where we understand our path moving forward; but we have arrived.

Our dermatologist is supportive of our trials, we will see her once every 6 months unless needed sooner. If Mermaid inflames on a more chronic basis or develops the spots on her scalp we will return. We will monitor her body temperature and physical discomfort, being conscious of potential tumors. In a few years we will revisit the surgical options and until then, we will continue our journey with LEN.

I know that our recent decision to find new care and push for more solid diagnosis and treatment information will free me from so much fear.

To all you rare and beautiful nevus owners, we hope our struggles to find the right care and options brings you a sense of direction and understanding.

Thank you to everyone for supporting us up to this point.

Thanks for walking with us today,

Mermaid’s Mommy

2015-09-27 12.27.27