Oral Cleft Retainer... anyone using it or have used it?

[MinnMama]

Hello Again.

Here in Minnesota we have 3 main surgeons who do the bulk of Cleft surgeries. Two are plastic surgeons and the other is an ENT surgeon with no plastics ( not sure that matters since he is an expert in his field.

One of the PS would want us to use this Oral cleft Retainer - also called Lantham, or the NAM device. He is the only one who promotes this device here in town. It is somewhat experimental- it's designed to bring the Gap together before the lip surgery. It also is supposed to minimize the possibility of a tear.

The other Surgeons do not believe in it. I've contacted a few other states was well and I get the same info- not worth it.
I've researched it as well and it does not yet prove to give and long term and any intermediate results.
It's a lot of work, there are complications with it and I am just not certain I want to have my baby with a mouth full of plastic unless it is absolutely necessary.

Has anyone used a device like this?
Was it helpful?

Did anyone have a TEAR with the LIP??

How common are tears?

Any advice would be appreciated.

Michelle

Did anyone experience tearing at all?[/list]

[samjune79]

I have never heard of a Tear before....


My PS does them but my son didn't need one since he was sure that after the lip surgery the gum line would be forced closed or just about closed. It did by the time he had his palate repair.

One of the things I liked about them was if the nose was flat, the devise would push up the nose in a familiar way so that by the time lip surgery was done it would have a more natural look to it than a flat look.

With my son, his Bi-lip and palate were incomplete so his nose wasn't ever flat.

I have a UCLP and would have loved to not have a flat lip when I was 4-5 years old. But they didn't make those back then.

[LanesMemee]

This is my first post! My grandson, now 17 months old, born with a Bilateral Cleft Lip and Palate, had the Latham appliance to align the premaxilla with the gum segments. His premaxilla protruded quite a bit. The first surgeon we saw did not use appliances either. The second said Lane needed the power of the Latham to retract the premaxilla to make the repair as successful as possible. The first few days after getting the appliance was not fun, but after that, he was back to normal. We were required to go every week to have the appliance adjusted. Some are given a tiny screwdriver and have to turn a tiny, tiny screw on the appliance at home each night. Just depends on what the appliance is there for. I understand it is used most often to lessen the width of the cleft.

[LanesMemee]

This is my first post! My grandson, now 17 months old, born with a Bilateral Cleft Lip and Palate, had the Latham appliance to align the premaxilla with the gum segments. His premaxilla protruded quite a bit. The first surgeon we saw did not use appliances either. The second said Lane needed the power of the Latham to retract the premaxilla to make the repair as successful as possible. The first few days after getting the appliance was not fun, but after that, he was back to normal. We were required to go every week to have the appliance adjusted. Some are given a tiny screwdriver and have to turn a tiny, tiny screw on the appliance at home each night. Just depends on what the appliance is there for. I understand it is used most often to lessen the width of the cleft.

[jacksmom]

Hey Daphne! Are you Jenn F's same Daphne from Alabama? If so, I have heard a lot about you! Lane has the same b'day as my Jackson! Just wondering, since they are the same age, how is Lane's speech development? We are in speech therapy once a week, but Jackson is still pretty much saying Mama for everything! He is using quite a few signs now, but I am anxious to hear some actual sounds! Did you guys use Dr. Grant, or did you use Dr. Mulliken in Boston? Welcome to the group!
Allison

[LanesMemee]

I am indeed the same! I've read a lot of the posts but never replied until now, not sure why. We did have a consultation with Dr. Grant in Birmingham, and then with Dr. Burstein in Atlanta before going to Dr. Mulliken in Boston. It has been a long road! We go back to Boston in Jan for a check-up. I think Lane is doing really well with his speech. I am the Grandmother and I can't remember what age they really start to talk. He tries to repeat just about everything we tell him to say and most of the time, although its still baby talk, we understand. He also says lots of things on his on, like going to the freezer, pointing and saying "Pop" for a popsicle or to the bananas which is garbled but you can pick out "anana" in there somewhere. EI said he did not qualify for their services in the beginning but now they see him for a whole 30 minutes a MONTH! My daughter is a stay at home mom so she works very hard with him on speech. I hope I have not worn out my welcome with this long post!

[Bailliejo]

I was scared to death that our PS would say that we would need to use that retainer, but thankfully we didn't. The Dr. we talked to said that he thought it was not worth the pain and trouble the baby has to go through.
I would never put my son through having those spikes put into the roof of his mouth just to close it a little. We did not have any problems with the lip surgery, and Jacob had a very wide cleft lip.