Archive | August 2015

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

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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