-
About Me
nikkiaz
-
About Me
Mom to a 5 yr old with fibrous dysplasia of the mandible
Mom to a 5 yr old with fibrous dysplasia of the mandible
-
-
Recent Activity
- Sorry, there is no activity in the My Activity feed.
-
Journal
nikkiaz hasn’t written any journal entries yet. -
Hugbook
I’m With You
Hi, my name is christine, and your daughter is lucky to have you with your going the extra mile to find out about it. My mom did the same thing and i feel so so lucky for that. i was diagnosed with it in my skull at 9 had surgery, and have been dealing with it since. its wrapped around my optic nerve. i found that meditation helped cope with the discomfort and thats been part of my life ever since. to each his own but you would be suprised how small kids react to it. lots of love and luck!!
Hug
Hi yeah I'm 15 soon and thinkingl about having the surgery in the summer to shave it down as it has spread all around my jaw. First starting with the right side then gradually over the last year to my chin then all the left side. It has got bigger both sides, although it has evened out a lot now I still really don't like it. It's still painful and has started hurting right at the top of my jaw (the bone uinderneath the ears) both sides. It started hurting this time last year and has got bigger as time has gone on. It took the doctors a long time to diagnose FD and have had to have a lot of time off school for scans and consultations. I am going back in June and I am going to ask about the surgery then. Thank you so much for replying to me as I have never spoken to someone who either they or someone they know has it in the same place as me. I hope your daughter will be okay and I have found that there are time periods where it doesn't hurt for a while, it didn't for a couple of months but it has been a lot recently. Sorry for rambling on like this! :) Hopefully any of this has helped you and let me know how your daughter gets on Abbie x
-
Hug
thank you for sending a hug.
-
Photos
nikkiaz hasn’t uploaded any photos yet
-
Advertisement -
Support Groups
Close Fibrous Dysplasia
Hi I am a mom to a 5 yr old girl who has fibrous dysplasia of the mandible (lower jaw). It began as my daughter complaining of her cheek hurting. Then when it started to swell, we went to the Dr who thought it could be cellulitis from a canker sore. So after several rounds of antibiotics and no results, she got an MRI which showed a bone tumor. She then got the CT scan which confirmed it and even went on to say that it looked malignant. The biopsy results said she has Fibrous Dysplasia.
