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FORUMS > Cleft Lip/Palate
Replying to Topic: cleft pallate
Created On 1/19/06 11:40 PM by gratefulmom


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gratefulmom
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1/19/06 11:40 PM
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I was wondering if anyone has had a child born with a cleft pallate/lip that has undergone reconstructive surgery? My child is now seven months old and will be having surgery when he will turn one years old now. I would love to talk to anyone who is familiar with this topic.
 
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hb
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1/20/06 8:05 AM
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I personally do not have experience, however I have three friends that have been there - done that - and have done loads of research on the topic. If you want me to put you in touch with them I can do it gladly. Kindly PM to me, and i'll give you their phone numbers as they don't have email access. Two of them did surgery in Boston, and one in California.
 
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gratefulmom
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1/21/06 8:10 PM
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do they live in those respective areas or they chose those locations for the doctors or cleft palate centers? I have done some research about two places here in New York. I am leaning towards one doctor meanwhile.
 
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hb
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1/22/06 12:22 AM
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Hi, one lives in NJ, two in NY.
There is a Dr. Cutting ( not sure how it's spelled) Who was also highly recommended to them. He's in NYU.
 
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gratefulmom
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1/22/06 11:13 PM
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Dr. Cutting is the one I am seriously considering, I would be most interested why they chose Boston or California over him.
 
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hb
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1/24/06 6:55 PM
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Please check your private messages, i've sent you my friends name and phone number. She will be more than happy to share her experience, knowledge and research.
all the best,
 
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analia
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2/7/06 10:08 PM
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yes, my second baby was born w/ cleft pallate and lip, she went on surgery when she was 3 month she had her lip reparied , she is now 9 month b'h and she looks beautifull you can't even notice she was born w/that.
the doctors here in venezuela are great, they belive , children w/pallate shoudn't be operate till they are 3 years old, b/cause mouth still wroging till that ega so no point in doing 2,3,4, operation , better wait till 3 years old and do only 1
is less traumatic for parents and child. imh' i will send you a picture of my dougther to your email, you can ask me any question abuot, tips on feding, surgery , etc.

hatzlacha raba!!!
 
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lifesaver1
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2/12/06 10:50 AM
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my precious son was born with both a cleft lip as well as a cleft palate.
He is now almost 16 and the results are astonishing.
Just a very small scar.
His surgery was done in Canada although I believe the surgeon who operated
is now in the states.
You just have to watch out for chronic ear infections with cleft children.

Myriam


-------------------------
To know what is right is Ruach HaKodesh, To know what is wrong and remain yet silent transforms simple cowardice into great obscenity. -R'n Faige Teitlebaum-
 
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gratefulmom
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2/16/06 10:21 PM
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Wow! they did surgery at three months old? The surgeon that I am working with wont do surgery until my child is one year old and he has to be a certain weight as well. Right now, he is ka"h almost nine months old. Every ounce that he gains is really hard work, but I must say it's a miracle just watching how he moves the solid foods around his mouth and then gets to swallow it...the feeding therapist that I have is unbeleivable and she is doing a great job with him.
 
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coolme56
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3/5/06 8:59 PM
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I also extremely recommend Dr. cutting. he is phenomenal. He works side by side w/ Dr. Barry Grayson. I' ve had alot of surgeries done by him and the results were perfect.
 
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analia
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3/16/06 11:26 PM
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yes, doctors in sudamerica belive that the early the operation , the less traumatic for parents, and chil.
you shoul get in contact with ¨*smile operation* an organitation that travels around the world treating this kind of problems, best surgeron work there. they operated my baby here in venezuela , please send me yuor email in private message and i will gadly send you pictures of my baby after and before.

ps:is your baby using a plastic protesis in the mouth to cover the palate? this protesis helps babys to eat while helps the bones of the palate to kip growing (by friction). this is the most important element in this situation, ask your doctor about it all the best
 
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gratefulmom
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5/29/06 9:42 PM
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Well, my son's surgery is scheduled to be in two and half weeks with Dr. Cutting. I am happy to hear that you were satisfied with your results. I am anxious to be past this and look forward to a smooth recovery.
Btw, how was the recovery perioud for you? from the people that I have been in contact with its a very trying time.
 
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coolme56
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6/7/06 6:07 PM
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yes. the recovery period was long. 1 surgery was 6 weeks another one was, also around that time. I had my mother to take care of me and she was like a nurse. It was amazing.
What kind of surgey is he having?
 
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gratefulmom
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6/9/06 9:24 AM
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my son is having cleft pallate surgery next week. What kind of surgery did you have and how old were you when it was done?
 
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Confused
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11/16/06 5:21 PM
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HI,
IM NEW HERE.
OUR FAMILY HAS PERSONAL EXPERIENCE WITH CLEFT LIP AND PALATE. MY BROTHER WAS BORN WITH CLEFT LIP AND PALATE. AT FIRST IT WAS TERRIBLE. WE WERE ALL HEARTBROKEN. HE HAD SURGERY BY DR. CUTTING AND DR. GRAYSON AT NYU AT THE AGE OF ABOUT A 1/2 A YEAR. ALSO HE HAS UNDERGONE A NUMBER OF OTHER SURGERY'S SINCE THEN. THEY GRAFTED A BONE FROM HIS HIP AND IMPLANTED IT INTO HIS UPPER MOUTH SO LATER ON THEY COULD IMPLANT THE MISSING TOOTH. I MUST SAY DR. CUTTING AND HIS TEAM DID A WONDERFUL JOB. HE IS NOW ALMOST 15 YEARS AND BRINGS ONLY NACHAS TO THE FAMILY. IF YOU WANT TO DISCUSS MORE INFO. PLEASE FEEL FREE TO EMAIL ME AT ANY TIME.

GOOD LUCK

HATZLACHA
 
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Admin
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11/16/06 6:14 PM
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Welcome to FrumSupport.

Please don not post in ONLY CAPS, it is hard to read and seems to imply that you are SCREAMING.

Thank you,
Admin
 
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gratefulmom
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11/17/06 12:08 AM
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Thank you "confused" for letting me know how your brother is doing now...every so often I meet someone who has had someone they know go through the surgery and is leading a full life.
Boruch Hashem, my son's surgery went well. Now we are working on his speach issues. My therapist is wonderful and we see improvements already on some sounds. I know there is a long road ahead, we just take day by day.
 
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Confused
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11/17/06 12:38 PM
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grateful, im glad to hear your sons doing well.
keep up the positiveness!!!!

gut shabboss

feel free to email me if you ever want to see photos or if i could be of any help
 
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coolme56
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2/25/07 9:35 PM
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yes the recovery is hard. But the results are worth it. I was 17 at the time and went through 2 very major surgeries with both of them a 6-8 week recovery. Very hard but i had my mother w/ me. She was like a nurse! You just gotta get thru it.

Wish you luck. If you have any more questions, feel free to ask.
 
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gratefulmom
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3/1/07 10:40 PM
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to coolme56...wow! you were grown up when you had your surgeries...why did your parents choose to wait and not do them earlier on? My son's recovery was two to three week...the first seventy two hours were a nightmare, but otherwise it was ok...I think that because he was so young it made the recovery easier.

Thank G-d he is doing well..we are busy working on his speach issues...what did you do with regard to speach?
 
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