Gum surgery

Children and adults with cleft lip and/or palate issues

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Gum surgery

Postby Abismom » Wed Sep 28, 2005 8:28 pm

Our daughter was born with a unilateral complete cleft lip that affected her top gum line, but otherswise has an intact palate. She had her lip repaired at 10 weeks, and is due to have her gum repaired this November, right before her 1st birthday. Our PS, who is the associate professor of crainiofacial surgery at a hospital where I love has not had that much experience with this kind of surgery. In fact, his nursr says she cannot remember having a surgery like this. My husband and I are very nrevous about this. We were told she couldn't have any pacifier after the surgery ( she is now officially done with paci) and couldn't use a bottle or sippy cup with a valve after the surgery. I have asked repeatedly what will happen with this surgery, but cannot get a straight answer. After speaking with the nurse the last time, I was told that "this is a very unique case" and it's uncertain, as they haven't had that much experience with it. Normally, according to her, children are either born with CL&P or CP. Does anyone have any advise or experience with this?We were told that she will need a bone graft when she is 8 or 10, and that the bone graft will be taken from her skull. My hubby and I have pretty much decided to look for a new surgeon for her surgery when she's older- it's too late for this one. I need some support and some advise/experience from those that have been through this. Any help is appreciated.
Colleen
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Gum Surgery

Postby Jeff Alterman » Thu Sep 29, 2005 7:58 am

Usually when the gumline is repaired via a bone graft, the bone is generally taken from the hip rather than being taken from the skull. Whenever a cleft affects the gumline (alveolar ridge) there is the possibility that one or more teeth might be absent in the area of the cleft. This doesn't always happen as it depends upon the size of the cleft as well as other factors.

Jeff Alterman at alterman@bestweb.net
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Postby amyc » Thu Sep 29, 2005 2:52 pm

Hi! I don't understand what exactly they are repairing the gum now for?? It sounds like maybe you don't either. My son't gum (complete cleft through the aveolar ridge) wasn't touched surgically until he had his bone graft surgery at age 9. I personally wouldn't feel comfortable with a surgery being done on my child if the dr. can't give you the details on the surgery and if he doesn't have any experience with it. I would get a 2nd opinion. Best wishes!!

Amy (mom to Alissa 14 nca, Nathan 11 uclp, Kristin 5 nca, ^i^ 8.0)
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Postby amyc » Thu Sep 29, 2005 3:01 pm

Wanted to ad that I don't agree that it's too late. You can always cancel and reschedule later. Also, many kids are born with a cleft lip only (my mil was). The cleft of the gum (alvolar ridge) is technically part of the cleft lip. The segments that cleft include the soft palate, the hard palate and the cleft lip (which extends through the gum). Of course any of these can be to different degrees. The cleft lip very often includes clefting of the gum line. Here's something that explains it better than I can.
http://www.widesmiles.org/cleftlinks/WS-806.html

Amy
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Gum surgery

Postby Abismom » Thu Sep 29, 2005 3:19 pm

We go for a pre op appointment in October- hopefully I will have more definitive answers then. Our PS says that the gum needs to be aligned now and then he will do the bone graft later. That's just what he does. He did such a wonderful job with her lip surgery. I hope this one goes as well. He says that it will be an outpatient procedure- in and out the same day, apparently. Any advise on how to talk with him regarding pain meds? Last time he would only give Tylenol PRN, and she doesn't respond well to Tylenol. We know that well. How do I get him to understand that now?? I only hope she is in a better mood at this appointment- last time we were waiting so long she became a little restless- even with toys and entertainment from daddy and me!!
Your sister in Christ,
Colleen
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Postby Cindy Hecker » Fri Sep 30, 2005 10:03 am

My son has a UCLP. His lip & Palate were repaired. He still has a gap in his gumline and they will repair it with a bone graft at age 8-10. His gap was left to allow for growth.

If you are not 100% satisfied and trusting your PS then get a second opinion. You will feel better about any decision made if you know more! Drs do things different ways. We visited 3 before my son was 3 weeks old and got their road map for Austin's future surgeries. We went with the one we agreed with and trusted the most. All were good surgeons & cleft teams.

Good Luck,
Cindy
Mom to Austin
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Mom to Austin 3 UCLP, Tanner 6, Carissa 8 and Twins Robert and Steven
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Gum surgery

Postby Abismom » Fri Sep 30, 2005 3:02 pm

We will keep our options open. Thank you for your replies. This surgery came about as a surprise; I was called in April to set this surgery up in November, as the PS is very busy, I was told. I was under the impression that the next surgery wasn't for several years, but apparently I was mistaken. Doctors have different ways and time lines of doing things. I am just nervous. I was nervous before her lip surgery, too. I accepted her how she was, and thought she was just beautiful. I didn't want her to have the surgery. I don't want her to have to endure any surgeries, but they must happen. Again, thank you to everyone who has replied.
Your sister in Christ,
Colleen
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gum surgery

Postby Linda S S » Fri Aug 24, 2007 11:39 am

Please provide an update. My new niece has UCL with gum involvement. Her CL surgery will probably be in Oct and the first doc they went to (not the surgeon) said the gum repair would probably be at about age 5 before the permanent teeth come in. We'll know more when they have the appt with the team in mid-Sept.
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gum surgery

Postby Abismom » Fri Aug 24, 2007 2:00 pm

We did have the gum surgery 5 days before her 1st birthday. It was an outpatient surgery, and it went okay. She couldn't nurse after that, or use bottle, or a sippy cup with a valve. In fact, there was only one type of cup we could use- the Munchkin brand.
That was almost two years ago. She was on a soft foods diet for several weeks after it, until the surgeon cleared us for regular foods. To this day, she is not a good eater, and I blame it on missing that critical time around 10 months that children become interested in eating new foods and different textures. We work with her on trying new foods, and she's getting better. She now has a new little sister born last September, nca.
Our PS does things a little out of the ordinary, and I haven't heard of another surgery at this time of a child's life just for the alveolar ridge. If you have any questions, you can email me at abihmom@yahoo.com.
Your sister in Christ,
Colleen
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gum surgery

Postby Abismom » Fri Aug 24, 2007 2:00 pm

We did have the gum surgery 5 days before her 1st birthday. It was an outpatient surgery, and it went okay. She couldn't nurse after that, or use bottle, or a sippy cup with a valve. In fact, there was only one type of cup we could use- the Munchkin brand.
That was almost two years ago. She was on a soft foods diet for several weeks after it, until the surgeon cleared us for regular foods. To this day, she is not a good eater, and I blame it on missing that critical time around 10 months that children become interested in eating new foods and different textures. We work with her on trying new foods, and she's getting better. She now has a new little sister born last September, nca.
Our PS does things a little out of the ordinary, and I haven't heard of another surgery at this time of a child's life just for the alveolar ridge. If you have any questions, you can email me at abihmom@yahoo.com.
Your sister in Christ,
Colleen
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gum surgery

Postby Abismom » Fri Aug 24, 2007 2:01 pm

We did have the gum surgery 5 days before her 1st birthday. It was an outpatient surgery, and it went okay. She couldn't nurse after that, or use bottle, or a sippy cup with a valve. In fact, there was only one type of cup we could use- the Munchkin brand.
That was almost two years ago. She was on a soft foods diet for several weeks after it, until the surgeon cleared us for regular foods. To this day, she is not a good eater, and I blame it on missing that critical time around 10 months that children become interested in eating new foods and different textures. We work with her on trying new foods, and she's getting better. She now has a new little sister born last September, nca.
Our PS does things a little out of the ordinary, and I haven't heard of another surgery at this time of a child's life just for the alveolar ridge. If you have any questions, you can email me at abihmom@yahoo.com.
Your sister in Christ,
Colleen
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Wisconsin

Postby Linda S S » Fri Aug 24, 2007 2:36 pm

Thanks for the update. My sister and her family live in WI, about an hour east of Minneapolis/St. Paul.
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