Does anyone (or their children) have one? My daughter has been having some problems with anything she's eating coming up into her nose; her doctor took a look yesterday and noticed her uvula is split. I'm wondering if anyone has any experience with this, if it caused any problems, if her problems eating are something that she even can outgrow or if it's going to be an ongoing issue, etc, etc, etc. We were referred to a specialist, but it will be a little while until we can get in to see him, and our regular doctor didn't have very much information on the subject. Dr. Google has been telling me all about the nasal regurgitation issue, speech issues, adenoid surgery complications, etc, etc, etc, but not about treatment options if it does cause ongoing problems.
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Bifid Uvula?
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2/27/09 at 1:19am
- momtoalexsarah
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YES YES YES- my youngest had a bifed uvula, did the nasal regurgitaion and had few other "issues". The bifed uvula wasn't picked up untill her first birthday by a new Peadiatrician. We where sent to the childrens hospital for an appointment with the Cleft palate team - bifed Uvula with nasal regurgitation and and what might appear to be a high arch or bubble palate are indicators for a sub mucus cleft palate. A regular ENT might be able to make a firm diagnosis but it is quite difficult to get the extent of the cleft at this age.
You will want to see and ENT, because her ears will need to be cheaked for persistant fluid and hearing loss. In childern with cleft palates (regualar or sub mucus) of then the openings to the eustation tubes are not present or are blocked by adnoids (which should NEVER be removed in a cleft child) The treatment is to put in ear tubes (gromets) these for my DD have been a god send - you will be told by some hear that these are not nessasary but for stuctural defects they are. When the put ear tubes in they are better able to assess the extent of the clefting and what further treatment will be needed.
We where told that 80% of submucus clefts do not need repair, only speech thearpy. My DD was one of the 20% that did need the repair done, she had it done about 6 weeks ago at not quite 3 years old. We had some problems after the surgury but not realated directly to it (infection issues) she has made leaps and bounds worth of progess in the last few weeks it is amazing.
For more of the story on my DD - go to the Special needs form and search under my user name and you will find some posts with Megan's story.
Also feel free to PM me with any questions, I've been where you are and it is frustrating and the sooner a proper diagnisis is made the better.
You will want to see and ENT, because her ears will need to be cheaked for persistant fluid and hearing loss. In childern with cleft palates (regualar or sub mucus) of then the openings to the eustation tubes are not present or are blocked by adnoids (which should NEVER be removed in a cleft child) The treatment is to put in ear tubes (gromets) these for my DD have been a god send - you will be told by some hear that these are not nessasary but for stuctural defects they are. When the put ear tubes in they are better able to assess the extent of the clefting and what further treatment will be needed.
We where told that 80% of submucus clefts do not need repair, only speech thearpy. My DD was one of the 20% that did need the repair done, she had it done about 6 weeks ago at not quite 3 years old. We had some problems after the surgury but not realated directly to it (infection issues) she has made leaps and bounds worth of progess in the last few weeks it is amazing.
For more of the story on my DD - go to the Special needs form and search under my user name and you will find some posts with Megan's story.
Also feel free to PM me with any questions, I've been where you are and it is frustrating and the sooner a proper diagnisis is made the better.
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2/27/09 at 1:52am
- momtoalexsarah
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Her are some good links to information on bifed uvula and sub mucus clefting
http://www.widesmiles.org/cleftlinks/
http://www.widesmiles.org/cleftlinks/
http://www.cleft-sa.sohot.com.au/subcleft.html
I was looking at you picture in your signature, did your doctor take any note of your DD's eye spacing - it look a little wide. My DD's are as well, mild hypertolism. They will likey send your for a consult with a geneisist, bifed uvula with clefting is a genetic marker and is not often seen with out a related syndrome. This dosn't mean that there is ANYTHING wrong with your DD - my DD is perfectly normal. The genetist belives she has a chromasome error but they can't find it through genetic testing yet.
Does your DD have and health or developmental issues - besides the regurgitaion, which is a mess to deal with. Does she have reflux at all, did she have feeding issues as a infant?
Sorry if I am asking so many questions but your DD looks and what you describe sounds so much like mine that it is uncanny.
http://www.widesmiles.org/cleftlinks/
http://www.widesmiles.org/cleftlinks/
http://www.cleft-sa.sohot.com.au/subcleft.html
I was looking at you picture in your signature, did your doctor take any note of your DD's eye spacing - it look a little wide. My DD's are as well, mild hypertolism. They will likey send your for a consult with a geneisist, bifed uvula with clefting is a genetic marker and is not often seen with out a related syndrome. This dosn't mean that there is ANYTHING wrong with your DD - my DD is perfectly normal. The genetist belives she has a chromasome error but they can't find it through genetic testing yet.
Does your DD have and health or developmental issues - besides the regurgitaion, which is a mess to deal with. Does she have reflux at all, did she have feeding issues as a infant?
Sorry if I am asking so many questions but your DD looks and what you describe sounds so much like mine that it is uncanny.
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2/28/09 at 12:34pm
- momtoalexsarah
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post #6 of 7
1/2/11 at 3:04am
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1/2/11 at 3:13am
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