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This one is about: Face Frame/Bone Graft

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Face Frames after Bone Grafts

Hi all,

Just wanted to tell you all my son's bone graft surgery on Tuesday went very well, we were discharged at 7:00AM Wednesday, 25 hours after arrival. My son's major complaint is that his hip hurts. He walks with a limp. Stitches come out next week.

We saw the surgeon today and he determined that today is the day to start wearing the face frame. We see the orthodontist on Monday to be sure it is fitting properly.

According to the cleft team, this face frame has been used successfully in other centers but is fairly new to my center. Since I feel so alone walking down this path, I asked the ortho to give my name to other families that are currently using or did use the face frame. No response from anyone. (I doubt he took my request seriously.)

So here I am, asking all you CT'ers, please tell me about any and all experiences with the face frame. How do/did you handle school, especially lunchtime? Did the child learn to put it on without help? How did your child feel after wearing it for awhile? Did the chin become sore? What would you have done differently if you had know then what you know now?

Thanks in Advance,

Mom to Stashik, 8.5yo, unilateral CL&P

Hi all,

Some of you may recall, 2 weeks ago my son (U CL&P), Stashik, 8.5yo, had his bone graft surgery. At that time an incision was made along the upper jaw line to try a newer technique at my clinic that will hopefully avoid jaw surgery in the teen years. (I really should find out the exact name of the procedure.)

[Note: This technique is called Distraction.]

This involves wearing orthodontic headgear, called a face frame. It rests on the forehead and chin and is held in place with thick orthodontic elastics attached to the palate expander and a crossbow on the frame.

He started wearing the face frame 3 days after surgery. Now his chin is sore, like bed sores, from the pressure of the device. (We are trying moleskin.) He needs to wear the frame 2-4 months round the clock. He took the frame to school before surgery to show the class what it looked like.  Most kids are curious, want to know if it hurts. Only mentioned two incidents of teasing and that was at latchkey (where I expected it would occur). I did have his bus seat changed to sit behind the driver to avoid any problems there. I must say, he is doing MUCH better than I thought he would. (I, on the other hand, am having trouble dealing with the *looks* coming from adults!)

He missed 4 days of school for the surgery, and has missed 3 additional half days for PS and Orthodontic appts. Teacher is not happy, as he is falling behind. He informed me tonight the palate expander has come loose so I guess he will be missing another half day of school. LOL

He had lots of swelling in the face but it was gone after a week. A little bit of bruising. His hip bothered him the most but he has not said too much since the stitches were removed (10 days after surgery).

He cannot take gym for quite some time. PS told him he doesn't know how long his activities will be restricted. I think this bothers my son more than the face frame. I am even afraid to let him ride his bike.

He is finally rising from his post-surgical depression. (And so am I!) Teacher sent him to counseling but I think he just needed more time. He is now eating and sleeping again with regularity which helps bring back his happy disposition.

He is on a soft diet for who-knows-how-long. Since "cook" is a four letter word for me (LOL), I am open to suggestions in the soft foods category. We have done jello, pudding, spaghettis, canned fruit, egg salad, tuna fish with lots of mayo, soup, oatmeal, and eggs. (Take note, no veggies!)

Whoa, I didn't realize how long I rambled. Sorry,

Pat and Stashik

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