| Name: nicola | Date: May 17th, 2009 12:46 PM |
| hi ya my son is due in a few weeks and i have been told that he has got a small chin known as micronatha and that theirs a chance he could have a clef pallet aswell but they wont know till he is born i am really worried about it and is their anyone out their who has been through simular things with the chin and pallett or pieere robin syndrome as it is also know? ↑ |
| Name: lisa | Date: May 28th, 2009 12:01 AM |
hello, my name is Lisa .
I have a 13 year old daughter that was born with a cleft lip and pallet .
shes had her repair done, and bone graphing .
she just had her braces put on a couple months ago,
and shes VERY eager to get her teeth all straight .
and I was wondering myself, how long it would actually take to get them straight .
if any of you have advice, or have gone through the same thing,
and know something I should know .
please let me know .
sagee_x@hotmail.com ↑ |
| Name: Trisha | Date: Jun 2nd, 2009 11:33 PM |
| Wawa_5 there is a website called operationsmile.org they give tips on the condition and due to fundraising give free surgeries. I would look into if youre interested. It's a wonderful organization that looks to boosting children's self confidence. Your little one may be too young, but I would still look to see what the guidlines. ↑ |
| Name: tina king | Date: Jun 6th, 2009 9:47 AM |
| my daughter was born with cleft pallet she is 6 months old and has been tube fed for 5 months as poor weight gain operation has now been moved to aug and she will need to come off tube before they can do it ↑ |
| Name: katie | Date: Jun 13th, 2009 5:41 AM |
| Hi im katie and im 15 and i have had a cleft pallet all my life. People tease and take the mick and it really lowers my confidence. I was going to have surgery to help it but i dont now if it is the right thing to do, what would you say. Do you now that after the surgery will it change it or make it worse. how many surgerys will i have to have to get it sorted? ↑ |
| Name: Tracy | Date: Jul 5th, 2009 6:53 PM |
Hi Nicola,
My son is now 13 months and has PRS w/ cleft palate. I didn't know he had it till he was born. He would never let us see his face on the ultra sound little stinker. All i can say is take a deep breath and relax. Your baby will be beautiful and although there is times it is a little difficult such as feeding and maybe some breathing issues at first, you will get the hang of it. Haberman sells bottles for this type of defect so just google the name and you can order the bottles online. I placed my son on soy formula milk. A nurse told me that cleft palate babies have more issues with ear infections and soy is better for this, since milk carries a lot of bacteria.He did have ear tubes placed at 6 months but has only had one ear infection and that was before the tubes. My son has palate surgery in two weeks, we are very excited and nervous, he talks all the time but with no palate it's hard to understand so we are looking forward to hearing his words, he has grown and developed fine. If there are more questions you want to ask please feel free to email me a
t-n-tx2@cox.net. ↑ |
| Name: safina | Date: Jul 20th, 2009 3:56 PM |
| hi i have a 2 months old nephew with acleft palate we no what you going threw he will have his op when he is 10 months old gud luck for the future. ↑ |
| Name: Anne Marie | Date: Jul 24th, 2009 11:47 AM |
Hi, My son has a cleft soft pallet and is having surgery in 3 weeks. Wondering what to expect. Has anyoone been through this?
Thanks. ↑ |
| Name: Mom of two | Date: Jul 31st, 2009 2:52 AM |
Hi, this is for Anne Marie.
First of all its different with every child my little girl had her first surgery in April, after surgery they wheeled her into th room, she was very swollen around the eyes and she didn't look like my little girl. She cried constantly, couldn't eat the first 12 hours. They migt bleed a little out the mouth. but my doctor said to give her a little jello starting 2 days before the surgery up untill the day, but they can't eat before surgery. My liitle girl did great when I got her home though her cry changed alot.
If you want to know more you can Email me at Bossylagirl@aol.com put cleft palate in the subject line. ↑ |
| Name: Tracy | Date: Aug 8th, 2009 11:20 AM |
| Has anyone had an issue with their son or daughter's cleft palate repair. My son had his surgery 4 weeks ago and two weeks ago we went in for a follow-up and his stiches came open and there was a small hole...my husband and i did everything we were supposed to and felt so terrible...The doctor said it was tight in that area and that may be the reason for it, but what other reason is there? we were so careful in feeding him and it just breaks my heart that he may have to have surgery again... ↑ |
| Name: Andy | Date: Aug 10th, 2009 6:20 AM |
hi Chris from UK 2810. i am 43 from N E Engalnd. I would like to chat to you if you could email me. snatchb9@aol.co.uk.
Cheers ↑ |
| Name: JP3 | Date: Aug 11th, 2009 11:57 AM |
| Is there any ways to be fullycured? ↑ |
| Name: amanda | Date: Sep 16th, 2009 4:01 PM |
I am 24 year old, I had a cleft Palated when i was born. and I had surgies when i was little. then when i was 16 after i stop growing i had another one on my lip fix the sar and i had my nose when i was 17. i alos have kfs. and I am hard of hearing. I had my i think right side of my lip rip open and I can't smell or taste. any one like contact me Email me littlebutterfly005@gmail.com, have any qyestions or like share.
amanda ↑ |
| Name: cheryl | Date: Oct 3rd, 2009 2:49 PM |
| hi my daughter was born 0n 6-11-09 with a secondary cleft pallate and i totally feel your fear and frustration my daughter is doing well but its been a hard 3 mos she had to have her larnex flap clipped so she would not stop breathing and they made her a prosthesis but she hates it so therefore when she eats she has a real hard time when she spits up it comes through her nose and mouth she has acid reflux really bad and has to be on a pulse- ox machine when she sleeps so she doesnt asperate its been hell i was so scared that for the whole time ive had her home i sleep with her right next to me she has soooo many doctors and it seems like we live at the hospital but any way they say they are going to fix it at 8 mos well see i was not trying to scare you just wanted you to hear the real and not all this oh its gonna be ok crap which it will be but its a hard hard thing to go through so get some support you will need it ! ↑ |
| Name: cinda | Date: Oct 16th, 2009 6:06 PM |
my son was born april 24th. he was born with digeorge syndrome, and one of the many things it effect is his pallet ( mugus pallet ) the muscles was born backwards and his mile comes out of his nose. The doctors told me he may have a serve speech problem because he will talk through his nose. he is showing sign now, he grawls like a bear and i know thats not normal. he may have to get surgery for it if it effects his eating, so far so good.i guess im on here to get stories as well. if you would like to talk my myspace is
http://www.myspace.com/cindalong
i believe reading and seeing pics is the best way to get to know someone. ↑ |
| Name: Sheree | Date: Nov 1st, 2009 9:35 PM |
| I have a daughter who is 15 years old. She was born with a disease called Pierre Rubin and with a cleft palate also. When she was born she was born without a chin. At the age of one the cleft palate was repaired. When she was in the 2nd grade her tongue had to be clipped in order for her words to come out a little better. She has had tubes placed in her hears. Then at the age of 15 she started loosing her hearing. So it was found out that she had a hole in her right ear drum which was then putting a lot of pressure in her left ear. With my daughter having the Pierre Rubin Syndrome we live day to day. Don't know what else will come up with this disease. It is really hard because she has slurred speech and she reads lips. ↑ |
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