Mouth, Tongue, & Larynx

oralApproximately 84% of PCers experience buildup of a thick white film on the tongue and inside cheeks. At the 2005 Patient Support Meeting, Dr. Leonard Milstone explained that this 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. It is not leukoplakia, which is a pre-cancerous condition.


Angular Cheilitis are the sores at the corner of the mouth. We have found out from surveying patients that “An antibiotic usually helps; even neosporin right away can help. Bactoban is the next level and does work well. However, there is a new product that we’ve had great reports on. It is called AltaBax in the USA. It is a more potent or higher level antibiotic and requires a prescrption. The 3 patients we know who have used it have had excellent results and the sore cleared very quickly. However, it is very expensive (like $60 for a small tube). A little goes a long way, and the physician was able to give some samples which helped.”


Information to be added.



K6a patient: “I brush with a toothbrush to keep the white layer from getting too thick. It doesn’t ever take the whiteness away, but it does seem thinner and prevents excessive build-up.”

K6a patient: “I don’t do anything except bite off the inside of my cheeks when they grow too much.”

??? patient: “I brush my tongue as well as possible.”

K6a patient: “I chew the stuff off.”

See also Miscellaneous Questions.

Trouble with nursing/sucking

K6a patient: “Sucking for baby with PC was difficult and seemed painful. I used very soft bottle nipples with big holes. I needed to sometimes squirt the milk in the baby’s mouth at first, so I used bottles with soft plastic that could be squeezed, which worked well. Sometimes, the baby will cry at first 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 big nipples and squishy bottles helped a lot. The pain of sucking seemed to subside after the first half year.”

K6a patient: “I didn’t feed for a long while and ended up staying in the hospital for a few months at the start of my life. These days you cant keep me away from food.”

K6a patient: “I was actually taken aback to see this listed as a possible manifestation of PC on the home page…”Intense pain lasting 15-25 seconds often when beginning to eat (this may be connected with salivary glands rather than ears and more research is needed on this finding).” When my son (who has PC) was born, he had horrible feeding difficulties. He would scream and cry when he attempted to suck, and it was absolutely chaotic for the first few days/weeks of his life. We tried breastfeeding, multiple styles of nipples, etc. At a few days old, I discovered blood in one of his spit-ups (Imagine the panic!). A general pediatrician had me give him Mylanta (ADULT STRENGTH) suspecting “indigestion.” Needless to say, we never returned to him. I noticed a blister on my son’s tongue and in the rear roof of his mouth. I was so incredibly petrified that he had EB (epidermolysis bullosa). Dad and I were misdiagnosed with EB until I was about 17 years old. As you may or may not know, EB can be very, very severe, where the mucosal tissues blister. We took my son to our dermatologist (AMAZING physician) who assured me that she did NOT believe my son had EB. As an aside, she also told me that he has the most beautiful eyes that no one would ever notice his nails. HAHA! Way to a new mom’s heart, eh? We finally ended up in the care of a pediatric GI specialist who basically, by trial with medication, diagnosed Cooper with reflux. Praise be to God — Zantac and Reglan (bad stuff) seemed to ease his suffering. I think we collectively believed that it was reflux complicated by PC or vice versa. We still had to find new styles of nipples periodically, but he grew to a happy, chunky little monkey in no time.”

K6a patient: “My son had a hard time feeding as a baby. It’s strange, but he also brought up blood when he was a couple of days old. That was the first of many, many hospital visits. My son could not suck as it was too painful. I breast fed for the first few days, but he was constantly crying. I thought he was not getting enough milk, so I changed to a bottle, but this never helped. I would sit for hours squeezing the milk into his mouth. Doctors changed his milk a few times, thinking he was allergic to various things. He was then put on to solids very early. We were also told he had gastric reflux, and my son was given all sorts of meds — he was always sick. Then, at 10 months, he was diagnosed with PC. We stopped all the meds and he seemed to get better very quickly. He doesn’t seem to have problems with his mouth now, except he doesn’t like things which are acidic. My son does get the ‘ear’ pain though, it is usually when starting a drink/meal. It’s quite intense, and he likes us to put pressure on his ears for a few seconds, then it seems to pass.”

See Miscellaneous Questions & Answers for Breastfeeding.


Category: Pachyonychia Congenita