Research help...

Rebel24 · 7:50 PM, 11/03/05

Research help...

Rebel24 · 9:35 PM, 11/03/05

Where is everyone when I need people to talk to.

Anyways so I was looking some things up and boy do things not look very good. Just read a case study about an 11 yr old boy who had 14 failed surgeries to close his cleft. His family finally found an excellent doc. in Arkansa that did the surgery and they finally had sucess. Yay for them at least they found someone that did it right.

And the liquid coming out of the nose. From what i read it sounds like he has developed a fistula. Which, from what I gather, is basically where the sutures are coming apart and is allowing liquid to come into the nasal cavity. And from what they say this can be very hard to correct and it can keep happening again and again until it is fixed right. So that also maybe playing a part in his speech problem that he still has.

Ok off to do some more reading.

puttin510 · ~Grand Champion~ Gold Medal Poster!

Awe Rebel, I wish I knew more about this sort of thing. I remember a gal in highschool that had a cleft palet. I did not know her, I did not understand what she would say. Many people made fun of her. I did not. Quite a few years later our sons were in the same kindergarten class and other school grades. I got to know her and just focused hard, and if I did not understand, I would say so. Sometimes throwing things out to see if thats what she meant. She was used to it. I still see her here and there. I know she has a few surgeries too. I just wish I had been brave enough to get to know her in school.

Have you thought about contacting the lady that finally found a good dr. that was able to get it right. It would be worth traveling to another state for a job done well.

Rebel24 · 10:37 PM, 11/03/05

Unfortenutly that was a case study so they did not have a name or anything listed.

I know that there is a cleft team in FL. but we went to them from birth to 2 and I don't really like them. They are the ones that did my sons first surgery and he did a really bad job on my sons repair. I didn't know then how bad of a job they did till we went to another surgeon. As of current we go to a doctor in Augusta, Ga and while so far he has done good work I wonder how good. i know that there is another team in Savannah so I may see about getting a second opinion with them.

I understand what you mean about the girl who has the speech problems and people not understanding her. We go through that now. Our first in home threapist couldn't not understand Andrew(my son) at all. I was constantly telling her what he was trying to say. I still have to do that with hubby to this day. Its hard for him to try to intepret what Andrew says. Whats worse is when we are out in public and he tries to talk to people and they look at me funny when they have no idea what he is saying.

oasis05 · Moderator

I don't know if i can help any but i'm just going to throw some sites on here and you can see if any of them help. Here goes.......

http://www.healthgrades.com/consumer/index.cfm?fuseaction=mod&modtype=PRC&modact=state_city&catid=surgery&specid=plasticsurgery&stateid=&cityid=&tv_eng=google&tv_kw=AGPlstcSurgProcInstantly

http://www.cleftline.org/

http://www.widesmiles.org/

http://www.clapa.com/ i know this one is in the UK but might have good info.

http://www.cleft.org/

http://www.ccakids.com/

I can find more if you need.

StormyWinter · Moderator

I know nothing at all about this. But I did do a search for cleft palate specialist. This is the first one on the list. They are in Chapel Hill, NC. I know it's a bit far from GA but never know.

http://www.cleftline.org/teamcare/
(This search was on Google)

Here is another one but sure where they are.

http://www.plasticsurgery.org/public_education/procedures/CleftLipPalate.cfm
(This search was done on Web Crawler)

I also did a search on MSN and it came up with the same link as Web Crawler.

Don't know if this is any help but I tried.

ZoeandTucker · Post-a-Holic - Give this person a rabies shot!

I do not know where you live but Arkansas Children's Hospital is an excellent hospital. I would rate their doctors among the best of the best. We traveled there many times (from PA) after my second daughter was born and saw many different types of doctors. Everyone was excellent! I know that one of the Drs. there, Dr. Waner, who does children's surgery has recently moved to NY. I don't know if he does cleft palate or not but I know he's wonderful and is in extremely high demand.