4. Managing your PC at home

PC varies so much, between the different keratin genes involved, (keratins K6a, K6b, K6c, K16 or K17) and the specific mutation. Even people who have the same mutation may look and feel differently. Having only one way of managing PC for everybody is almost impossible! As it is often difficult to understand what is ‘normal’ for PC, people use different methods for how best to treat their PC.   Remember that even though a treatment might work well for one person, another might find an entirely different treatment works best for them! This might be true, even though both people have the same symptoms – PC is a funny condition like that.  It really is about finding your own preferred way of treating your PC, and that might well change over time.

That said, there are lots of things that you can try at home to help reduce how much PC hurts.  These home treatments range from creams for cracks to regularly soaking feet to shaving off the thick skin with a blade.  This section covers some of the tips that those with PC have shared with PC Project about how they have learned to manage their PC at home.

Keeping the feet

Many with PC find that when their feet get hot or sweaty, the pain intensifies and therefore, find it helps to wear open shoes as much as possible.  Again, different things work for different people. Some keep ice packs in the freezer to cool their feet down, whereas other like to soak them after a hard day.  Walking on a hard floor can also hurt those with PC, so wearing slippers or flip flops inside may be a good idea.  Some people even wear waterproof flips flops in the shower.  A smooth shower base also helps! Some can’t stand with bare feet at all so they use shower stools or sit down in a bathtub.

Many people with PC have also shared how they like to sleep with their feet outside of the covers.  This is because the covers feel they are pressing against the PC skin which can hurt. This also helps to keep the feet cool.

PC quote: “Sometimes with our son when his feet hurt at the end of the day, we would let him watch tv while soaking his feet in warm, soapy water. While we doubt that this actually helped his pain levels, it made him feel special and listened to.  Sometimes children with PC, like us all, just need the extra attention.” 

Shaving off thick skin

How much thick skin to trim off and who does it for you varies from person to person. There is no right or wrong way and you need to find what is best for you/your child.

Some find it best to remove their thick skin themselves at home as they know how low to pare down the skin and they don’t trust anyone else to do this! Others with PC, especially for younger children, prefer to use a professional, for example, a chiropodist or podiatrist, for shaving thick skin from feet.  As you get older, it may be possible to carry out more and more self-care, such as trimming your own thick skin (many people with PC!) Talk to your parents or healthcare professional about this.  There are many good hygienic blades you can buy to help with self care. Never attempt to trim your feet without the help and supervision of a parents or trusted adult.

Cysts

Not all PC patients suffer from cysts. Cysts normally don’t cause problems until after puberty. Cysts usually do not cause pain unless they rupture or become infected or inflamed, which happens a lot in PC Cysts. Most cysts do not disappear on their own without treatment. Some cysts may need to be drained to relieve symptoms — that involves piercing the cyst with a scalpel and draining it. That doesn’t cure the cyst, however. Some inflamed cysts can be treated with an injection of cortisone medication to cause it to shrink. Cysts that do not respond to other treatments or reoccur can be removed surgically if they cause troublesome symptoms.

Nails

Caring for nails is a lot like caring for thick skin. Everyone has a different way of trimming their PC nails. Some like an Emory board to file the nails, others use big clippers and some even use a power tool to sand down larger nails, like big toe nails.  All trimming tools for both nails and thick skin should only be used with the supervision and help of a parent or trusted adult. You will find the best tools to match your particular PC nails and feet.

Preventing Infections

PC does not cause infections. However, it is possible to get a secondary fungal infection. An infection is caused by germs from the outside, not from something internally. Children with fragile nails are more susceptible to infections because they don’t have the same barriers as others, but the infection is not caused by PC. Infections are more common in children as they are more exposed to germs. Soaking hands and feet in bleach bath (1 capful of unscented bleach into 1 gallon of water) can help prevent infections. This kills yeast, which causes fungus and viruses. Use a fresh batch each time. Rinse after using. See page 4 of Feb 2016 PC NewsBrief for a summary of treating Nail infections in babies.

Follicular Hyperkeratosis (FHK)

These bumps usually form around friction sites on the skin (the waist, hips, knees, and elbows.) These symptoms are more common in children and usually lessen in the adolescent and adult years. It is recommended for children with follicular hyperkeratosis to wear loose clothing to ease friction. Some patients use petroleum jelly to help skin.

Leukokeratosis

The white film on the tongue and inside the cheeks is just excess keratin. It is white because it is wet/moist (like when you leave your fingers in water for a long time and the skin turns white). The medical term is oral leukokeratosis. For babies this is often misdiagnosed as thrush, but thrush medications do not help. It is also NOT leukoplakia, which is a pre-cancerous condition.

Problems Feeding

Some K6a babies sucking is difficult and seems painful. Parents have found using very soft bottle nipples with big holes. Sometimes squirt the milk in the baby’s mouth and the baby will cry but then be hungry enough to just “go for it” and then get used to the sucking. Either the pain lessened as sucking went on or just got used to it. The pain with sucking seems to subside after the first half year.

PC Wiki

The PC Wiki brings together advice from people who have PC and professionals and links to the appropriate sections are included below. Here are some links to useful information:

PC Kids Corner:

  1. What is PC?
  2. Explaining your PC
  3. Bullying
  4. Managing your PC at home
  5. Managing your PC with a professional
  6. Living with PC
  7. For Parents and caregivers of children with PC
  8. Supporting PC Project and the PC Community
  9. PC kids and teens- The brilliant things kids with PC are achieving!

Details

Category: PC Kids Corner