cleft lip and/or palate

Discussion in 'disABILITIES Community Board' started by heath-and-javens-mom, May 8, 2007.

  1. heath-and-javens-mom

    heath-and-javens-mom I love Rob Thomas & Disney World equally. Is that

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    I was just wondering if anyone here has a son or daughter (or yourself) that has a cleft lip and/or palate? My 4 year old son had cleft lip and palate and has had 3 baby teeth come in right in the cleft sight. Has anyone else experianced this? Also if you just need to talk about any other cl&p issues I am more than willing to discuss them with you.:thumbsup2
    Thanks!
     
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  3. HappyDznyCamper

    HappyDznyCamper <font color=teal>Happily camping since 1972<br><fo

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    My DS(11) was born with a unilateral cl&p. He had his lip repair at 9wks and the palate repair at 9 months. A baby tooth finally grew in the repair area when he was about 9 years old, the dentist removed it when he was 10 and some of his other teeth were falling out anyway. When it was removed it had no roots and was starting to decay because of how hard it was to brush. The dentist and orthodontist both agreed to leave it be until it needed to be done.
     
  4. Tigger&Aidan

    Tigger&Aidan Mouseketeer

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    My son was born with a unilateral cleft lip. It was repaired at 6 months (he was a preemie, so they had to wait until his face grew enough...). He has a small notch in his gumline but not palate problem. He's 2 now and he has a tooth growing in right where the notch is and it looks like it might be ok. They told us that there was a chance that his gumline would "correct" itself - as in the tooth would pull the gum down. I'm hoping that it's ok and he won't need any kind of gum surgery
     
  5. luvsmickeymouse

    luvsmickeymouse Opt to Adopt!

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    I have two kids born with a cleft lip and palate. My oldest is 19, adopted from Korea, is all done with sugery. My youngest is 17, adopted from The Phillipines, just had surgery on Thursday, it was work on his palate. He has a couple of more surgeries to go, and then he will be finished also. They both have braces on their teeth. They have been through alot, and are doing great.
     
  6. tarheel618

    tarheel618 DIS Veteran

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    My daughter will turn 5 in June and was born with a cleft palate no lip involvement. Our main concern right now is speech. Her repair was done at 11 months however she still has some speech difficulties due to a short palate. She will probably have the flap surgery within the next year.
     
  7. mrsmom

    mrsmom <font color=green>Drinks P.C.'s in the C.C. at P.I

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    My dd 13 was born with a cleft palete (Pierre robin Syndrome) she has had two palete repairs and is getting ready to have her tonsils taken out next Monday due to her breathing issues cause by a flap put in five years ago.
    wow i did't realize there were that many parents on her with clefts babies and kids. hello to all of you .

    Kim
     
  8. luvsmickeymouse

    luvsmickeymouse Opt to Adopt!

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    My 17 year old is still having issues with speech. He had a difficult repair on the cleft palate. He is going to have extra speech right at the hospital in addition to the speech he has at school.

    My older son is 19 and all done with everything except braces on his teeth, he speaks very well.
     
  9. heath-and-javens-mom

    heath-and-javens-mom I love Rob Thomas & Disney World equally. Is that

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    My son is 4 and he has had speech theropy since he was like 6 months old. His speech is very good and we arer sooo thankful for that. He will continue to have speech Im sure because there are a few things he has trouble pronouncing.
    He will be going for a lip revision and a nose repair(?)-its to fix the slant on the cleft side, next summer. then i am not sure what the next steps will be. have any of you had the lip revision? did you see a difference-Im kinda scared cause I think it looks preety good now (the scar). Also what about this nose revision? anyone familiar with that?

    I have an idea to get this thread going, maybe we all could start posting pictures of our children with cleft lip and palates?

    [​IMG]
    Build your own BlingeeThis is a current pic of my son

    [​IMG]
    Personalized Glitter Graphics This was right after the lip repair...he was 3 months old
     
  10. luvsmickeymouse

    luvsmickeymouse Opt to Adopt!

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    My oldest son is all done with surgery, he had his final lip revision 2 years ago, it is amazing. Ill try and put some pictures up. I don't have a scanner so I can't put any older ones to compare with but i will post a picture of him. My younger son needs maybe just one more surgery.
     
  11. GroovyWheeler

    GroovyWheeler Earning My Ears

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    I had a cleft palate. I can't remember how it was fixed, but I do know that I was in speech therapy for all 12 years (K-12th grade) of school. I couldn't make the "S" sound, or pronounce a few words correctly.

    Samantha
     
  12. hairdresserchick

    hairdresserchick Earning My Ears

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    Hi y'all. I was excited to see this thread. In January, We adopted a 3.5 year old boy from China. He has repaired cleft lip and palate. We have no record of how many or what kinds of surgeries he's had or photos of what he looked like before. His cleft surgeon here said he had a unilateral cleft. He will need a surgery in a couple of years to repair his gum and they think that will lift his nose some. We're very new to this and have no idea what to expect. Our Dr. doesn't think right now he will have many surgeries in his future. Nice to meet you all!!!


    [​IMG]
     
  13. heath-and-javens-mom

    heath-and-javens-mom I love Rob Thomas & Disney World equally. Is that

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    Hi, so nice to meet you! What a cuttie he is! My son had a unilateral cleft and bilateral palate-was your sons palate effected? I will post a before pic of my son soon. I know of a wonderful web site if you dont already know it....it is widesmiles DOT com.
    This thread is kinda slow but we can still keep it going:goodvibes Thanks for joining! Talk to you soon!
     
  14. tarheel618

    tarheel618 DIS Veteran

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    What can you tell me about Pharyngeal flap surgery? How did it improve your childs speech? Any information will be greatly appreciated!

    THanks

    Worried parents here
     
  15. Tigger&Aidan

    Tigger&Aidan Mouseketeer

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    DS only has a cleft lip, but I thought i'd direct you to another site - cleftadvocate.org or babycenter.com's babies with birth defect board.
    HTH!
     
  16. luvsmickeymouse

    luvsmickeymouse Opt to Adopt!

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    Another good site is widesmiles.org
     
  17. heath-and-javens-mom

    heath-and-javens-mom I love Rob Thomas & Disney World equally. Is that

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    That is the site I ment to mention in my last post--I put . com instead of .org--sorry :)
     
  18. Microcell

    Microcell <font color=red>No, no,no, those red signs with th

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    My sister has both cleft lip and palate and it is interesting to me to find out about the speech problems...

    She is deaf too, so you can't tell what is what with her speech.
     
  19. luvsmickeymouse

    luvsmickeymouse Opt to Adopt!

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    My youngest son has had alot of work done on his palate, the surgeon has tried a few different things to make him speak better, he is doing good. Both of my kids are adopted and both have cleft lip and palate. They didn't have any surgery prior to coming home, so they had a late start with the repairs. My oldest is all done with surgery except for braces on his teeth. My youngest just had his wisdom teeth out, so that was another trip to the operating room. These kids tolerate so much , don't they.
     
  20. heath-and-javens-mom

    heath-and-javens-mom I love Rob Thomas & Disney World equally. Is that

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    The thread is dying! OH NO! We cant let that happen! BUMPING!!:goodvibes
     
  21. luvsmickeymouse

    luvsmickeymouse Opt to Adopt!

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    Here are my kids! My oldest was born in Korea, he is all done with surgery, starting his 3rd year of college.


    [​IMG]

    Here is my youngest son, born in The Phillipines, is a senior in HS, has 1 more surgery, maybe 2.

    [​IMG]
     

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