Category:Caring for Mouth and Tongue

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Approximately 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.


General Comments

K6a patient "Brushing with toothbrush to keep white layer from getting too thick. Doesn't ever take whiteness away, but does seem thinner and prevents too much build up."

K6a patient "I don't do anything except bite off the inside of my cheeks when they grow too much."

??? patient "Brush tongue as well as possible."

K6a patient "I chew the stuff off."

Braces & PC

Question from K6a parent "I had a consult with a doctor today and he definitely needs spacers and braces. I hadn't really thought about how it would affect him. Have you or any of your boys had braces? I am a little concerned about the friction it might cause in his mouth. I wasn't sure if he'd blister."

Answer from K6a patient "I had braces and so does my oldest child. He's had them for almost 2 years now. He also wore a spacers. He did not have any PC-related problems at all. For my son, sometimes the insides of his checks get irritated by the braces, but I'm not sure how much that is from PC or just because those braces rub. He loves the wax the ortho. provides. And I figure because they provide the wax, Sam is not the only one who is bothered by braces rubbing against the inner sides of the mouth. No blistering, nothing, though. I didn't have problems at all either."

Trouble with nursing/sucking & breastfeeding

Trouble with nursing/sucking

K6a patient "Sucking for baby with PC was difficult and seemed painful. Used very soft bottle nipples with big holes. Needed to sometimes squirt the milk in baby's mouth at first so used bottles with soft plastic that could be squeezed. Worked well. Sometimes 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. 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 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 (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 w/ 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. Its strange but he also brought up blood when a couple of days old. That was the first of many, many hospital visits. My son could not suck as it was too painful, breast fed for the first few days but he was constantly crying, thought not getting enough milk so changed to 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 10months 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 doesn't like things which are acidic. My son does get the 'ear' pain though, it is usually when starting a drink/meal. Its quite intense and he likes us to put pressure on his ears for a few seconds, then it seems to pass."

Trouble with Brestfeeding

K6a patient 1 "I was unsuccessful at breastfeeding either of my children. Brestfeeding was excruciatingly painful and continued to be for the duration of our experience. I worked with a lactation consultant who assured me that our latch was correct, but the pain never subsided. I had persistent cracking of the nipples...almost blistering and a couple of bouts of mastitis. As you with a newborn is quite I honestly can't recollect if this thought was on my mind at the time....but in retrospect I've often wondered if I was unable to breastfeed because of my PC... if the friction of the nursing was just too much for one with PC. I, of course, was a bit devastated at the time, because I (and perhaps many others) desire to breastfeed and somehow equate that with being a "good mother". It was difficult for me to "give up" on it, and I remember mourning it a bit..."

K6a patient 2 "I too struggled with breastfeeding. I think I had all of the things you mentioned and I also wondered if it was part of my PC skin. In addition, my first two of three boys have PC and so when the first had a hard time sucking, I knew (from my mom telling me about my own time trying to suck as a baby) that he might have trouble. I ended up using bottles that were so squishy, and with big openings, that I could squeeze the milk or formula into both of my sons' mouths because it was painful for them to suck. But still, because I was trying to be a "good" mom, since they couldn't suck well, I pumped my breast milk for months for my first baby. My breasts were a mess with blistering and sometimes they would bleed so much that I just threw out the milk. Second baby I pumped for a much shorter time. Third baby didn't have PC and was an awesome "sucker" but even in the hospital, my breasts started to blister and I said "forget it" - I've got three little boys to care for and went straight to the formula bottle. Still felt the guilt somewhat because I know about all the benefits of breastfeeding. And I believe them. However, all three of my boys are in the gifted programs at school (ok, yes I'm bragging) so I think they survived just fine with good old formula. Whether or not it was related to PC, I don't know, but one other thing I figured is if feeding my babies was a dreaded thing because of the awful pain and terrible toll on my skin and not a bonding, loving thing (which is was with the bottle) then I figured the agony of breastfeeding defeated one of the best benefits of feeding my babies."

K6a patient 1 "...I finally came to the same realization...that we were losing out on the part we both needed/wanted the most...the calm, relaxing, joy of bonding during feeding. The tears and frustration - for both of us - were just not worth the potential added nutrition. Our stories are so amazingly similar...I pumped for weeks as well...just praying that both my children got the magical "mommy elixir" that so important at the beginning of life. We did the SAME thing with my son's nipples...found the "squishiest" we could find...and enlarged the openings with large needles. What a support we could've been to one another during those times! I pray that if a new PC mom - or mom to a PCer - finds these messages and reaches out to one of us in a time of need!"

K6a patient 2 "Yes I sure wish we would have known each other back then. I bet my own mom would have liked the support too as she was trying to feed me! Still, it's nice to know I wasn't the only one. Somehow hearing your story makes me not feel so odd. For the record, to this day, I don't enjoy ice cream cones because it irrates my tongue to lick. I don't enjoy suckers either. Unfortunately for my waistline, I find eating ice cream wonderfully satisfying with a spoon."

K17 patient "I have also had a terrible time with brestfeeding! My first son with PC never understood how to suck from the breast. So after five weeks of terrible pain, fear of being a bad mother, bleeding nipples, and a infected breast (which I had to go to a hospital for, and let the puss get out in a surgery) I gave up!!! I didn't get any help before it was too late... 2nd child without PC had no problem to suck. He ate as much as possible. He could eat constant. But my breasts didn't like it. I got blisters and cracks from the start. They were bleeding and extreemly painful! I tried everything but nothing helped. I got help from the hospital, but even if I told them about PC, they tried to find all other reasons they could. After about five weeks I gave up, and started to pump the brests, but it hurted too so I couldn't continue doing it. After about 2 months I heard about a moisering creme special for the breastnipples. And when I used it, the cracks and sores became better! I also gave him bottle to drink of and only breastfeeded him 2 times a day (afternoons and nights). This summer I stopped giving him breast in the day. I have tried to give up the feeding but he has problem to drink something else at night, and he wakes up several times, but I'm too lazy to get up so I give him the breast instead... But I've had 2 mastitis lately and this morning I woke up with a blister on the nipple! So I have to stop soon..."

K6a patient "I have breastfed all of my children. In all three cases, I have developed what looks like could be a callous on one of my nipples. I didn't know if it was related to the issues I was having with breastfeeding (in all 3 children, I've had really sore nipples which even cracked and bled) or if it was from the PC. When I spoke with lactation consultants, they didn't really say whether the nipple looked normal or not but when it comes to sore nipples, I think they come in all different shapes and forms. "

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