| Name: Rielysmom | Date: Dec 21st, 2008 3:28 PM |
| I was wondering if any one could help me my daughter was born with a soft cleft she has had it fixed on 10-2-08 she is a little over a year every since her surgery she drinks really not normal she makes a loud sound she tilts her head back and she also always has pulmonary infections is this normal please write asap ↑ |
| Name: Drew | Date: Jan 12th, 2009 10:23 AM |
| My sister is 24yrs old and she's going for surgery this morning. what are the positives or negatives for someone this old? ↑ |
| Name: sid- 20 yrs old | Date: Jan 16th, 2009 2:27 PM |
| hi... can anyone help me out with speech theraphy... i never had any... so would like to know more about.. would be graeful to anyone who replies.. my id is siddarthan_cpt@yahoo.com.. ps do reply if u know something.. bye ↑ |
| Name: stronggurl | Date: Jan 17th, 2009 8:24 PM |
Hello, I'm Tiana.
I was born with a cleft lip, and palate.
Life has been really hard, for me in the past years. I"m 15 and in high school. throughout my whole life i have alot of troubles with kids, and their comments. It's very hard sometimes,getting made fun of all the time, or people not accepting who you are. It's sometimes hard to hold back the tears I've grew up with a supporting mother, Who adopted me. She's been there through all the surgeries-6 going on to 7. I've had little self-a-steam for a long time, So for all those mothers out there that are have children with what i have, Please support them in all their wants and needs, do not give up on them! They need you, as much as they dont act like it, they do. Kids will give them crap alot, but just let them know that you will be there whenever:)
Thank You. Any questions email me
mason.8593@hotmail.com ↑ |
| Name: stronggirl | Date: Jan 17th, 2009 8:29 PM |
Hello, I'm Tiana.
I was born with a cleft lip, and palate.
Life has been really hard, for me in the past years. I"m 15 and in high school. throughout my whole life i have alot of troubles with kids, and their comments. It's very hard sometimes,getting made fun of all the time, or people not accepting who you are. It's sometimes hard to hold back the tears I've grew up with a supporting mother, Who adopted me. She's been there through all the surgeries-6 going on to 7. I've had little self-a-steam for a long time, So for all those mothers out there that are have children with what i have, Please support them in all their wants and needs, do not give up on them! They need you, as much as they dont act like it, they do. Kids will give them crap alot, but just let them know that you will be there whenever:)
Thank You. Any questions email me
mason.8593@hotmail.com ↑ |
| Name: Karen Lipman | Date: Jan 21st, 2009 7:19 PM |
| My son was born with a cleft 15 years ago. Maybe we can help. Go to our website www.cleftbooks.biz We compiled two books to help other famiies with cleft affected children. I hope it helps. ↑ |
| Name: mamam | Date: Feb 5th, 2009 6:33 PM |
| i have a grandson born on 3/2 in italy who has a cleft lip and hard and soft pallet. any suggestions re the feeding as his mum is keen to breast feed but can she successfully express and bottle feed with a particular device? gratefully receive any past success stories. i am in australia and my grandon in italy ↑ |
| Name: Kaylee | Date: Feb 10th, 2009 8:49 PM |
| Hey guys. I am a sophmore in high school and my biology teacher is having us do research projects on human genetic disorders and I choose to do my report on cleft lip/cleft palate. Anyways it is required to get a personal interview. So if you have sometime to talk to me that would be great. please email me at Kparvinen@comcast.net ↑ |
| Name: archana | Date: Feb 21st, 2009 9:34 PM |
Does anyone know where to buy Haberman nipples in Atlanta ,Georgia. I need to send it to my nephew outside USA. I have a friend who is leaving US for the same country from Baltimore, MD this Thursday so please help me find near Atlanta so that I can post it to ASAP.
Thanks
Ira ↑ |
| Name: ally | Date: Mar 11th, 2009 7:38 PM |
| Name: wonder3 | Date: Mar 12th, 2009 7:12 PM |
| im doing a project on cleft pallet and i wanted to kno....what causes cleft palate to occur in the birth process... ↑ |
| Name: KarenLipman | Date: Mar 18th, 2009 1:35 PM |
Dear Tiana,
I just read your post about being teased. That breaks my heart. My son is your age and has been rather fortunate. To my knowledge he has not been teased, but often stared at due to the scars on his upper lip. It is wonderful that you have a supportive mother. You are so lucky. My son has found his acceptance by volunteering and helping others. I'm sugggesting this because it can help you build confidence regarding what you are capable of accomplishing and a helpful volunteer is always welcomed. (And often appreciated and accepted.)
I hope this helps. Thanks for sharing. Bullying is more about the bullies than about the one beeing bullied. They must be insecure themselves to feel a need to harm others. ↑ |
| Name: christine | Date: Mar 21st, 2009 5:45 AM |
| i was born with it myself what would you like to know? ↑ |
| Name: christine | Date: Mar 21st, 2009 6:02 AM |
| i'am 40 years old i was born with cleft pallet mine wasn't that bad I didn't have a roof or a uvula but at 18 months old they fixed it all. i spoke well right away i saw the speech therapist every year i went to school but they always said i spoke just fine and didn't need it so some of us get lucky. the rough part is no one know then that it causes ear problems. I had a lot of extremely bad earaches and a loss of hearing as well as inter ear problems that causes vertigo. so I say get all of it looked at and fixed if at all possible. On the plus side I don't have all the pressure problems when I dive in deep water or go in high altitudes. ↑ |
| Name: christine | Date: Mar 21st, 2009 6:19 AM |
| wow after reading a lot of your story's. it leaves me to wounder 2 things one I don't think the Dr.s know what there doing any more. like I said before I had no pallet and no uvula I only had one surgery and never had to have speech, my mom just liquidized all my food and poured it down my throat. I have 3 nephews whom were all born with cleft as well they to speak well today they did have speech and it worked so don't ever give up all is going to be fine even if it don't seem that way now! take care all ↑ |
| Name: Angee | Date: Mar 24th, 2009 12:15 PM |
| Having a baby with a cleft is not horrible you think so when you find out. All parents want their children to be perfect and think that they are going to be so when you find out otherwise it's a little devastating, but you find once that child is born that they are so wonderful. My son was born with a cleft lip and palate and he has had two surgeries and is doing okay. When he had his first surgery he stopped eating and I had to force feed him and it took a long time to get him to eat correctly. When he had his palate surgery we had some problems with his eating and other things too, but it wasn't really anything that I did it was mostly just a stubborn doctor. He is 20 months now and he tries to talk and he is happy and healthy. One thing I did do for him is teach him sign language so that your not stressed out and he has a way of telling you what he wants and needs. We have had problems with his ears, speech, and eating. For me this has been an easy task. You just have to love and care for your kids and make sure he gets to the doctor when he needs to. You are your child's best teacher and that means the world to them. If you have any questions you can contact me at lovergirl_always_2004@hotmail.com. I have been through alot with my son and i will be more then happy to help. ↑ |
| Name: trouble | Date: Mar 24th, 2009 5:23 PM |
| I'm all 4 every1 sayin positive comments but 4 me havig a cleft lip hasmade my life miserable + extreamely difficult, i'd like 2 say different but it's not true! im 19 + it's VERY obvious there's something amiss with my face, my nose is horrible and i hav a flat lip with 2 visible scars. how cum every1 else seems really chuffed with themselves/thier kids or wotever? ↑ |
| Name: Amgee | Date: Mar 25th, 2009 5:11 PM |
| Trouble, It really all depends on how bad your lip was to start with and if your doctor was a good doctor. I know other people other than my son who has had a cleft lip and he is doing just fine. What I can offer you is information on a laser surgery to reduce your scarring. I was told when my son had his lip repaired not to have him in the sun too much because that could cause the scar not to fade like its supposed to. Your 19 years old and 17-19 years ago surgery was different it was just cut em up and fix it now its' more of an art. My son had Dr. Richard Bruneatau and he was wonderful when it came to the art of the surgery. I don't know where your from or what kind of insurance you have, but if it's really that bad I would talk to another doctor about it and see if something can be done about your scar and your nose it may be able to be further repaired. If you want to chat sometime my email is lovegirl_always_2004@hotmail.com or you can find me on myspace if you have it. I hope all goes well and look at the better part of the situation at least it got fixed. ↑ |
| Name: Angee | Date: Mar 25th, 2009 5:16 PM |
| It is really starting to sound like only the girls are having problems with cruel people. That is sad that our society is so horrible. Any imperfection on a girl and lets all just torment her the rest of her life. I mean come on as if she doesn't have enough self esteem problems to deal with lets hit her where it really hurts. The one thing that she could never help. Good lord what is going on in this world I really do feel for you girls that are in high school. I mean here I am worrying about my 1 year old and how he is going to be made fun of in school and that's not even sounding like the case anymore. I really do feel for you that have to deal with the immaturity of the human race. :( :( That just gets me fuming!!! ↑ |
| Name: Tracy | Date: Apr 4th, 2009 12:03 PM |
Hi my name is Tracy,
My son Alec was born with a PRS and cleft palet. He is 10 months old right now and eats like a horse! He will have surgery at 14 months. the reason for this is because his airway is small due to the PRS and Dr. feels with his airway will open up more so the swelling from the op wont block. I am scared about the surgery. I do have this to say, God gives us challenges in life, my husband and i,at first were scared, but as time has passed we realized that this is just a small obsticle . We have no problem telling people about our son and they seem to have no problem excepting...i believe its all in the attitude and being positive, for yourself and your child. Love your child tell him he's special and make sure to let them know they still can make a difference. Get proactive... teach people help them understand...it works! ↑ |
| Name: Angee | Date: Apr 5th, 2009 7:39 PM |
Tracy
I know how you feel about being scared, but just wait until it's at that point where he is having surgery that fear will go away and when you see your child after it will be the biggest relief. So hang in there ↑ |
| Name: Fanie Kuhn | Date: Apr 10th, 2009 11:35 AM |
| Hi I Fanie from South Africa ↑ |
| Name: Tracy | Date: Apr 10th, 2009 11:50 AM |
| Name: Tracy | Date: Apr 24th, 2009 4:22 PM |
| Can someone help me with feeding issues...my 11 month old boy has a cleft palate and PRS his cleft will be fixed at 14 months...I have been feeding him with haberman nipple and have started feeding him solids at about 7 months old. I still feel real uneasy with feeding him. He eats about 4 gerbers a day i have tried pasta and softer foods but he tends to start to choke and it scares me.He still loves his formula. i am just having issues with what to feed him he has no teeth yet and i have tried sippycups for drinking but he doesnt do real well, he learned to hold his bottle for awhile but now wants me to hold the bottle. i would just like some suggestions please... ↑ |
| Name: Brie | Date: Apr 26th, 2009 10:34 AM |
| My daughter is 8 months old. She has a small hole in her soft pallet. She is having surgery when she is a year old. She has ear vents, but before the vents she heard very little. Just muffled sounds. She laughs a lot now, but really doesnt talk that much. She makes sounds, but nothing like her twin cousins that are 4 months older then her. I am just curious if this is normal for babies with pallet issues. Should I not be alarmed that she doesnt really talk or babble much? ↑ |
| Name: Tracy | Date: Apr 27th, 2009 10:58 AM |
| I know exactly how you are feeling I felt the same way. It takes time for your child to get used to certain foods so I would stick with the basics and just add little by little. Your child will learn how to move all that around so that there isn't any choking. As for sippy cups I would wait until after the surgery because they can't latch on as well. I waited until after the surgery. I had to syringe feed my baby and then once that was done he didn't get his bottle back we went straight to a soft tip sippy cup. It took him like an hour to get it, but once he did we didn't have any more problems. Take your time with the feeding and let him learn. It will take some time, but in the end it all works out. ↑ |
| Name: Brie | Date: Apr 27th, 2009 11:01 AM |
| My son is almost two and can only say mama and nana. I have speech pathologists coming into my home. He has picked up on more sounds. The best thing you can do because this is completely normal is to make noises. When your child is taking a bath is the best time because in the bathroom there is an echo. I was told that normally children with clefts don't start really doing too much talking until they are 2 and they won't have a normal speech until they are 5. So don't worry and just do what you can. You still have a lot of time to help your child to learn and grow. ↑ |
| Name: Angee | Date: Apr 27th, 2009 11:03 AM |
| Sorry the last two posts named Tracy and Brie were from me to those two people. I hope the information helps and if you have any questions you can contact me at lovergirl_always_2004@hotmail.com ↑ |
| Name: Tracy | Date: Apr 29th, 2009 9:32 PM |
| thank you Angee, I feel more at ease with you telling me that these little obstacles are normal. I forget sometimes that my baby has a cleft and i expect him to do what all the other babies are doing, like eating solids and drinking from sippycups. I have to remind myself that he's just a little different.thanks for the reassurance...:) ↑ |
| Name: Angee | Date: Apr 30th, 2009 1:56 PM |
| Tracy It's no problem. I didn't know anything at all when I had my son so I would really like to help those that don't know what to expect either. It's hard, but in the long run it's worth it. All babies are different but I am sure that everything will work out in the end. ↑ |
| 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? ↑ |
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