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,