Ears

Some patients especially PC-K6a children experience short sharp ear pain.

Additional study is needed to learn more and find correlations between pain in ears and PC.

FIRST BITE SYNDROME

“First Bite Syndrome” is the only term we have found that comes close to describing the short ear pain for some PC-K6a children. We believe the pain is related to salivary glands, but have been unable to sustain an in-depth study, partly because there are so few patients, and partly because the condition usually diminishes greatly after about age 16. We often don’t know of the problem from patients, as parents take the children to an ENT or other ear specialist assuming it is ear pain and not identifying it with PC.

K6a patient “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.”

K6a patient “I remember this very clearly, I used to cover my ears and put my head down on the table (if there was one) and just try to think of anything else in the moment!”

K17 patient “My daughter has K17 and has a lot of “unexplainable” ear pain””

K6b patient “I used to experience this when I was ten years old but never associated it with PC. I also suffered with ear ace all of which I grew out of.”

K6a patient “I use to have this but never realized it was a symptom of PC. I had it until I was around 20. I use to push my ears with my fingers to relieve the pain a bit . But ultimately not much you can do , but wait for it to subside x”

K6a patient “My k6a daughter had it pretty bad as an infant but it really stopped bothering her by the time she hit toddler stage. Maybe her love of food outweighed it? 😂. She is now 9 and no longer has any discomfort at all- I’d say by 4 it was completely gone.”

K6a patient “Hello, i am the daughter of Maikel kok and i have had first bite syndrome. Now i am 16 years old and the first bite syndrome started when I was 12. First I tried chewing gum. It helped a bit but not much. Now I have a medicine called isotretioïne it is usualy for acne, but it helped me to get rid of the first bite syndrome. When I stop with the medicine, the first bite syndrome comes back. I don’t know if this medicine works the same on a other person, but I hope I helped you a bit. Greetings Mari”

K6a patient “I had this all through my childhood. Didnt know it was connected. Then all of a sudden it stopped overnight?”

K6a patient “I has first bite when I was a child, my daughter had it as well. My grand daughter now has it.”

K16 patient “It happens to me about once a month for about 20 seconds each time, I never knew it was pc. Also it never has anything to do with eating for me. Just a random pain that hurts like hell for about 20 seconds nothing has ever helped.”

K17 patient “I am k17 and 56 years old and it still happens once in a while”

K6b patient “What a perfect representation of the pain. K6b here. I’m 27 and have known this my whole life but never knew what it was associated until the last year. I’ll often apply intense pressure to the area behind my ear (above my jar) and open and close my mouth (like I’m popping my ears) until it subsides.”

K6a patient “My daughter still suffers. Has it when eating, but also with temperature changes, and when surprised by something. Just as everyone describes it- intense pain near jaw.”

K6a patient “Mi hija (k6a – 6 años) tiene ese dolor. Si bien dura poco tiempo, es muy intenso. Si alguien encontró una manera de atenuar el dolor, agradeceré me diga cómo”

K16 patient “I’m K16 and I still get this once in a while. I had no idea it was PC-related.”

K6a patient “I have pc and still to this day suffer from occasional first bite syndrome! It really is painful in the moment. My middle daughter, aged 11 also has this and finds it quite severe. It’s also very frequent for her. We would love to know more about the cause of this mysterious, painful, syndrome. 😩”