- 4,973 Posts. Joined 11/2006
- Location: Mayberry
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- categoryHealth Healing
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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.
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.
I am 65 and remember my mother showing her friends my "2 uvulas " when I was a child. Only a few years ago a doctor told me what it really was and why it is there so I felt very lucky that it hadn't gone further to a cleft palate. I have had no problems at all so I don't think their should be any need for you all to be too concerned unless the palate is affected. GOO LUCK.
I am 65 and remember my mother showing her friends my "2 uvulas " when I was a child. Only a few years ago a doctor told me what it really was and why it is there so I felt very lucky that it hadn't gone further to a cleft palate. I have had no problems at all so I don't think their should be any need for you all to be too concerned unless the palate is affected. GOOD LUCK.
- Bifid Uvula?
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