Skip to content

Archive for

When to Know When They’ve had Enough Heat!

Today we turn to long-time FIRST member, Mark Klafter, father of Adam Klafter, affected with Epidermolytic Ichthyosis (formerly known as EHK). Mark has been an active participant in FIRST activities and a frequent contributor to our FIRST for Parents Group on Facebook. His input as a mentor to other fathers and affected families has been invaluable. Just this past week Mark, once again, gave thoughtful insight into when and how to recognize the signs of overheating.  With the summer months quickly approaching, we thought it was an important message to share with our broader audience. Here is Mark’s input into a conversation regarding temperature monitors and recognizing your child’s signs of overheating:

“I would advise caution on the temperature monitors. My fear is that you will be lulled into a false sense of security. Generally kids with ichthyosis will be over heated long before you’d see a noticeable change in the actual body temp. Think about it this way. When you’re hot, you perspire. That’s the body’s way of regulating temp. Correct? It’s no different with your child or mine. The problem is that the moisture generally gets trapped under the thickened or scaly skin and doesn’t really evaporate, making them actually hotter, not cooler.

Adam Klafter, 2014 National Family Conference-Indianapolis. Photo Courtesy of Positive Exposure

Adam Klafter, 2014 National Family Conference-Indianapolis. Photo Courtesy of Positive Exposure

My advice would be to watch your kids closely when the weather is warmer. Each will have their own tell-tale signs. Some kids get really red cheeks. Some will start scratching their head more. It can be a variety of things. Eventually you’ll learn what to look for in your own child. And with younger children, who likely aren’t going to say anything until it can be too late, you need to teach them to recognize signs in themselves. And as always, for newer parents, I recommend being in the warm sun in small doses to start out, so you can see how they handle it. Maybe five minutes outside, five minutes inside, then graduate to 10 outside, 10 inside, etc. You’ll learn fairly quickly what they can tolerate, as well as what the warning signs of overheating are for your child. Just my two-cents.”- Mark Klafter

Stay tuned for more “pearls of wisdom” from Mark Klafter, as he will be contributing more insightful posts as the first “Guest Dad blogger” for FIRST!

More information on ichthyosis and overheating.

If you’d like to join the conversation on our FaceBook groups, log onto to: FB Parents, FB Young Adults, FBAdults, or FB Teens and ask to join. A FIRST staff member will promptly reply.

Want the latest news from FIRST and the ichthyosis community? Sign up for FIRST E-News and Updates!



Part 2 – Can Ichthyosis Affect Levels of C-Reactive Protein?

After receiving several inquiries regarding our last blog post,  Can Ichthyosis Affect Levels of C-Reactive Protein, we reached out to our Medical Guest Blogger, Dr. John Browning, to request a Part-2 to the post, below. (see Part-1)

John Browning, MD, MBA, FAAD, FAAP

For some individuals with ichthyosis, elevated CRP may just reflect red and inflamed skin and not have any other systemic associations.  Of course increased inflammation could signal an increased metabolic rate with loss of fluids through the skin barrier.  These individuals will need to increase their fluid and caloric intake.  Others with elevated CRP could be colonized with bacteria (such as could occur in epidermolytic ichthyosis).  In Netherton syndrome increased CRP might be reflective of multiple allergens irritating the skin and the immune system.   As you can see, there can be many causes for elevated CRP and it is always important to seek further information from your doctor. For example, elevated cholesterol or lipids in the setting of elevated CRP could be more problematic and deserves plenty of attention.- Dr. John Browning

 

6284

 

Inform your doctor about Tele-ichthysosis:

Please remind your doctor that FIRST has a tele-ichthyosis site where he or she can ask detailed medical questions, upload photos, and receive a prompt response from our ichthyosis medical experts.

Want the latest news from FIRST and the ichthyosis community? Sign up for FIRST E-News and Updates!


Can Ichthyosis Affect C-Reactive Protein Levels?

 

 

 

Dr. John Browning, MD, FAAD, FAAP
Assistant Professor, Baylor College of Medicine
Chief of Dermatology, Children’s Hospital of San Antonio

 

Today, FIRST would like to welcome Dr. John Browning, a member of FIRST’s Medical  & Scientific Advisory Board, and frequent Medical Guest Blogger.  Recently, the foundation received a unique question from a member regarding how ichthyosis might affect the production of  C-reactive protein (CRP).  Dr. Browning explains the production of this protein, why it’s important for a healthy metabolism, and how symptoms of some types of ichthyosis might indicate a change.

“C-reactive protein, or CRP, is an acute phase protein that is produced by the liver.  Its production is stimulated following cytokine production by white blood cells.  Cytokines are messengers that allow different cells to communicate with each other.  In this case, it is as if the white blood cells are saying, “Hey, liver, we’ve got a problem over here!”  CRP is more sensitive and accurate than erythrocyte sedimentation rate (ESR), which was previously the standard for measuring inflammation.  However, CRP is more sensitive to acute inflammation than ESR.  It becomes positive quickly and also returns to normal quickly.  ESR, on the other hand, takes longer to become elevated and is slower to return to normal. CRP is a non-specific marker of inflammation.  It will be elevated any time the white blood cells are activated.  This can occur with fever, infection, pneumonia, hepatitis, dermatitis, or any time there is inflammation.  You can think of CRP as a red flag for distress.  Just like a red flag at the beach can be raised for a number of reasons (high tide, jelly fish, sharks, etc.), CRP can be elevated from any number of reasons when inflammation occurs.

In ichthyosis, you would expect CRP to be elevated when the skin is inflamed.  Individuals with Netherton Syndrome will likely have a high CRP as their skin is often inflamed and interacting with various allergens or irritants.  Others with epidermolyic ichthyosis might also have elevated CRP if they have blisters or secondary bacterial infections.  Likewise, those with lamellar or harlequin ichthyosis (autosomal recessive congenital ichthyosis – ARCI), might also have elevated CRP if their skin is inflamed. On the other hand, those with ichthyosis vulgaris, X-linked ichthyosis, or non-inflamed ARCI will likely have low levels of CRP.

If the skin is not red, hot, infected, or with blisters then CRP levels are likely to be normal. Warmth, tenderness, pain, swelling, and loss of function are the five cardinal signs of inflammation.  If these are occurring with your type of ichthyosis then CRP will likely be elevated.”  – Dr. John Browning

As always, FIRST recommends contacting your physician if you are experiencing unusual side effects with your skin condition. The Tele-Ichthyosis program is always available to your physician, should t

Want the latest news from FIRST and the ichthyosis community? Sign up for FIRST E-News and Updates!

hey need to connect with an ichthyosis medical expert.