You and your parents can learn the best ways to take care of your PC
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 skin and nails.
Remember that even though a treatment might work well for one person, another might find an entirely different treatment that 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 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.
Find ways to keep the feet comfortable
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 others 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 flip-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 like they are pressing against the PC skin which can hurt. This also helps to keep the feet cool.
“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.”
Shave 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 a 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 parent or trusted adult.
Trimming 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.
Treating Swollen Nails – we call these infections, but most physicians say this is not an infection. Whatever the right term, many babies and children with PC have this problem at times. If you have a relationship with a pediatrician, physician or podiatrist who understands PC, that is always of great value. The following is a summary for treating nail infections. This is not intended to contradict medical advice in any way. The nail must be ready before the following steps can be taken.
Actions many PCers take when the Nail is “Ripe”
From one of our PC patients (a mom with PC who has two boys with PC) may be helpful. This is not medical advice, but experience advice.
“I looked at the picture and the nails look very familiar. Both my boys often got infected nails as little babies and they looked a lot like these nails. The nail on the left looks “ripe” right now. Both nails may be ready to have the pus released. I would be as gentle as possible and try to do one of two things (or both, depending on which thing works best):
- Use clean (sterile), sharp, large nail clippers and see if I could make a hole in the nail. Probably start on the side, on the end near the tip. Do it when the baby is sleeping if possible. There will be pressure when the nail is first clipped and that can be very painful. So the softer the nail, the better and if baby is asleep, that’s good too.
OR - Use a sharp, clean (sterile) razor blade (I like a double-edged razor blade because it bends) and try to nick at the nail to make an opening, again from the side and end of nail nearest the finger tip. If nothing comes out, try near other areas. This may be a better way than the nail clippers.
- Whether a nail clipper or a razor blade is used, go slowly and gently and not too deep at first. The outer nail is “dead” but soon, inside the nail, there will be “live” nerve endings so be careful.
- Before trimming, if the nail doesn’t seem soft, soaking it first by putting the baby’s hand in warm water (not hot) for a few minutes will help. Also, after the nail is cut into and the pus comes out, soaking the nail again, or even running it under warm water will help.
The nail itself may fall off at some point once the nail starts to heal. Antibiotics may help the healing, but to heal quickly and to relieve the pain as soon as possible, getting the pus out is important and the pain relief will be almost immediate. Based on my experience, there will be pus in the nail, not clear liquid.
Also, baby pain reliever like baby ibuprofen will help as well. If I had to, I would give the baby some of that before trimming the nail. However, the greatest pain relief will come when that nail is gently cut into and the pus is released.”
NOTE: A topical antibiotic cream can be used after releasing fluid/pus (the same as for blister care.) Oral antibiotics may or may not be needed. If there are red streaks, it is important to immediately see a physician for antibiotics. Other times nails can be treated and healed without antibiotics. You will learn to be able to know at what stage the problem is and when to see a doctor. If at any time you are uncertain, see a doctor.
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 the good news is they usually lessen during the teenage and adult years. Other parents with PC children with follicular hyperkeratosis have told us that wearing loose clothing to ease friction is helpful. Some patients use creams or lotions to help soften the skin and the bumps. Then, sometimes the bumps will get so soft they can be plucked right out without hurting.
Care for 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. A warm compress may help some cysts while other 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.
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.
Tips and Tools for PCers
Tips and Tools, also known as 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 on:
