Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 hi i'm from canada too,,i have the same story w sick kids ,,have you heared about CST therapy? my son is 3 1/2,,,w facial asymmetry ,,guilt is eating me daily,,,what should we do?,,the only answer i got is there is no ttt and it is unoticed,,but i can see it clearly every minute, Plagiocephaly From: deepa_soni@...Date: Sat, 26 Jan 2008 01:31:19 +0000Subject: corrective surgery hello,I live in Canada and have a 2 1/2 year old daughter. We got extremely bad advice in her first months of life and were told this would 'mold out' on it's own and that a helmet was not needed. It improved a bit but you look at your child every day and don't notice the subtle facial changes occurring.I looked at pictures of her and notice she has the typical changes, forehead and cheek prominence on one side and facial flattening and recessed eye on the other side.went to see a craniofacial surgeon at sick kids in toronto, canada and was told, this is mild, nothing to do. I can't leave her with self esteem issues due to this facial assymetry. I am filled with guilt about not demanding the helmet and just trusting the 'experts'.Is there anyone who has had reconstructive surgery for their child's facial assymetry and if so, when did you do it (what age) and where did you go? Is there anyone in Canada who knows a doctor that will do this. I am thinking I will have to go to the US if the surgeon here already said no. Please advise about US surgeons and who is good and also, if anyone has any idea about cost.I appreciate any help and advice.thanks,Deepa Connect and share in new ways with Windows Live. Get it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 Welcome Deepa! I am so sorry your daughter did not get the care she needed when she needed it. I have not heard of surgery for plagio - there is an Older Plagio board here on - they maybe able to help you. Does your daughter have tort? I ask because that can be a cause of plagio and I know there are moms from canada on the torticollis board. Also, loo thu the archives here and see if there are any resources about Canada - I am sure there are. Have you seen a craniofacial dr yet? That is they kind of dr I think could really answer alot of your questions - though you may get the same old it will get better on it own answers. Choosing the right dr is key. I have heard of moms from Canada coming to the US to get treatment when they felt they had exhausted thier options at home - maybe that could be an option for you? There is a craniofacial dr named Dr. Fearon in Dallas at the Craniofacial center there who you can email pics and your story to and he will give you his tips and if he thinks he can help. Here's his email - cranio700@... HTH!!! Jen and Luli - 24 months Left tort - Right Plagio - Hanger Band Grad - CA http://www.babiesonline.com/babies/j/jens5th/ corrective surgery hello, I live in Canada and have a 2 1/2 year old daughter. We got extremely bad advice in her first months of life and were told this would 'mold out' on it's own and that a helmet was not needed. It improved a bit but you look at your child every day and don't notice the subtle facial changes occurring. I looked at pictures of her and notice she has the typical changes, forehead and cheek prominence on one side and facial flattening and recessed eye on the other side. went to see a craniofacial surgeon at sick kids in toronto, canada and was told, this is mild, nothing to do. I can't leave her with self esteem issues due to this facial assymetry. I am filled with guilt about not demanding the helmet and just trusting the 'experts'. Is there anyone who has had reconstructive surgery for their child's facial assymetry and if so, when did you do it (what age) and where did you go? Is there anyone in Canada who knows a doctor that will do this. I am thinking I will have to go to the US if the surgeon here already said no. Please advise about US surgeons and who is good and also, if anyone has any idea about cost. I appreciate any help and advice. thanks, Deepa More new features than ever. Check out the new AOL Mail! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 HI, nice to meet you. we share the same bad experience. What is ttt? I don't know what CST is. have you done anything for your son yet? yes guilt is eating me too. deepa plagiocephaly From: maharamsis1@...Date: Sat, 26 Jan 2008 02:40:49 +0000Subject: RE: corrective surgery hi i'm from canada too,,i have the same story w sick kids ,,have you heared about CST therapy?my son is 3 1/2,,,w facial asymmetry ,,guilt is eating me daily,,,what should we do?,,the only answer i got is there is no ttt and it is unoticed,,but i can see it clearly every minute, Plagiocephaly From: deepa_sonihotmailDate: Sat, 26 Jan 2008 01:31:19 +0000Subject: corrective surgery hello,I live in Canada and have a 2 1/2 year old daughter. We got extremely bad advice in her first months of life and were told this would 'mold out' on it's own and that a helmet was not needed. It improved a bit but you look at your child every day and don't notice the subtle facial changes occurring.I looked at pictures of her and notice she has the typical changes, forehead and cheek prominence on one side and facial flattening and recessed eye on the other side.went to see a craniofacial surgeon at sick kids in toronto, canada and was told, this is mild, nothing to do. I can't leave her with self esteem issues due to this facial assymetry. I am filled with guilt about not demanding the helmet and just trusting the 'experts'.Is there anyone who has had reconstructive surgery for their child's facial assymetry and if so, when did you do it (what age) and where did you go? Is there anyone in Canada who knows a doctor that will do this. I am thinking I will have to go to the US if the surgeon here already said no. Please advise about US surgeons and who is good and also, if anyone has any idea about cost.I appreciate any help and advice.thanks,Deepa Connect and share in new ways with Windows Live. Get it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 hi again, just read on CST. don't believe it would work. the skull is fused. there is not really any evidence that moving your hands around it would move the bones. i think this might be a waste of money for this condition. d plagiocephaly From: maharamsis1@...Date: Sat, 26 Jan 2008 02:40:49 +0000Subject: RE: corrective surgery hi i'm from canada too,,i have the same story w sick kids ,,have you heared about CST therapy?my son is 3 1/2,,,w facial asymmetry ,,guilt is eating me daily,,,what should we do?,,the only answer i got is there is no ttt and it is unoticed,,but i can see it clearly every minute, Plagiocephaly From: deepa_sonihotmailDate: Sat, 26 Jan 2008 01:31:19 +0000Subject: corrective surgery hello,I live in Canada and have a 2 1/2 year old daughter. We got extremely bad advice in her first months of life and were told this would 'mold out' on it's own and that a helmet was not needed. It improved a bit but you look at your child every day and don't notice the subtle facial changes occurring.I looked at pictures of her and notice she has the typical changes, forehead and cheek prominence on one side and facial flattening and recessed eye on the other side.went to see a craniofacial surgeon at sick kids in toronto, canada and was told, this is mild, nothing to do. I can't leave her with self esteem issues due to this facial assymetry. I am filled with guilt about not demanding the helmet and just trusting the 'experts'.Is there anyone who has had reconstructive surgery for their child's facial assymetry and if so, when did you do it (what age) and where did you go? Is there anyone in Canada who knows a doctor that will do this. I am thinking I will have to go to the US if the surgeon here already said no. Please advise about US surgeons and who is good and also, if anyone has any idea about cost.I appreciate any help and advice.thanks,Deepa Connect and share in new ways with Windows Live. Get it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 I don't really know of cases of surgery for cosmetic reasons. Sadly there are many doctors who will tell you " don't worry " it will get better on its own. the only surgery I know of is if the sutures are prematurely closed and restricting the brain growth. I hope it does continue to improve on its own, but I'm not sure that you will find someone to do the surgery. There is an OlderPlag group on . You may also want to ask your question there. In spite of how difficult this must be for you, I am glad you posted here. There are always moms who want to listen to their doctor when he/she advises against the band. Someone really needs to convince these idiot doctors that their advice is causing harm. take care. -christine sydney 2 yrs starband grad > > > hi again, > just read on CST. don't believe it would work. the skull is fused. there is not really any evidence that moving your hands around it would move the bones. i think this might be a waste of money for this condition. > > d > > > plagiocephaly@...: maharamsis1@...: Sat, 26 Jan 2008 02:40:49 +0000Subject: RE: corrective surgery > > > > > hi i'm from canada too,,i have the same story w sick kids ,,have you heared about CST therapy?my son is 3 1/2,,,w facial asymmetry ,,guilt is eating me daily,,,what should we do?,,the only answer i got is there is no ttt and it is unoticed,,but i can see it clearly every minute, > > > Plagiocephaly@...: deepa_soni@...: Sat, 26 Jan 2008 01:31:19 +0000Subject: corrective surgery > > > hello,I live in Canada and have a 2 1/2 year old daughter. We got extremely bad advice in her first months of life and were told this would 'mold out' on it's own and that a helmet was not needed. It improved a bit but you look at your child every day and don't notice the subtle facial changes occurring.I looked at pictures of her and notice she has the typical changes, forehead and cheek prominence on one side and facial flattening and recessed eye on the other side.went to see a craniofacial surgeon at sick kids in toronto, canada and was told, this is mild, nothing to do. I can't leave her with self esteem issues due to this facial assymetry. I am filled with guilt about not demanding the helmet and just trusting the 'experts'.Is there anyone who has had reconstructive surgery for their child's facial assymetry and if so, when did you do it (what age) and where did you go? Is there anyone in Canada who knows a doctor that will do this. I am thinking I will have to go to the US if the surgeon here already said no. Please advise about US surgeons and who is good and also, if anyone has any idea about cost.I appreciate any help and advice.thanks,Deepa > > Connect and share in new ways with Windows Live. Get it now! > > > > > > > > _________________________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2008 Report Share Posted February 1, 2008 hi Again, feel i was too hasty with CST. do you do it? has it helped? i want to look into it. I'm curious, who did you see at sick kids and what did they tell you? i feel like we are even more behind in canada as at least in the US there are so many people going through this so more likely to get treatment. i see my child's assymetry too and it is also eating me alive. what is ttt? would like to hear your experience. our daughter is 2 1/2 and i keep hoping and praying this will lessen with age. deepa plagiocephaly From: maharamsis1@...Date: Sat, 26 Jan 2008 02:40:49 +0000Subject: RE: corrective surgery hi i'm from canada too,,i have the same story w sick kids ,,have you heared about CST therapy?my son is 3 1/2,,,w facial asymmetry ,,guilt is eating me daily,,,what should we do?,,the only answer i got is there is no ttt and it is unoticed,,but i can see it clearly every minute, Plagiocephaly From: deepa_sonihotmailDate: Sat, 26 Jan 2008 01:31:19 +0000Subject: corrective surgery hello,I live in Canada and have a 2 1/2 year old daughter. We got extremely bad advice in her first months of life and were told this would 'mold out' on it's own and that a helmet was not needed. It improved a bit but you look at your child every day and don't notice the subtle facial changes occurring.I looked at pictures of her and notice she has the typical changes, forehead and cheek prominence on one side and facial flattening and recessed eye on the other side.went to see a craniofacial surgeon at sick kids in toronto, canada and was told, this is mild, nothing to do. I can't leave her with self esteem issues due to this facial assymetry. I am filled with guilt about not demanding the helmet and just trusting the 'experts'.Is there anyone who has had reconstructive surgery for their child's facial assymetry and if so, when did you do it (what age) and where did you go? Is there anyone in Canada who knows a doctor that will do this. I am thinking I will have to go to the US if the surgeon here already said no. Please advise about US surgeons and who is good and also, if anyone has any idea about cost.I appreciate any help and advice.thanks,Deepa Connect and share in new ways with Windows Live. Get it now! Quote Link to comment Share on other sites More sharing options...
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