Guest guest Posted March 16, 2002 Report Share Posted March 16, 2002 My 7 year old son, underwent surgery to correct the growth of his skull. I wish we would have known about the helmut back then. His first surgery was at 9 months to install the plates to reshape, and the 2nd surgery (removal of hardware) was done at 15 months old. He has a scar across his skull, from ear to ear. We were told that the scar would fade with time, but I don't see a big change in it. He is a very active child, and has had no complications. For this I am thankful!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2002 Report Share Posted March 17, 2002 Was your son possibly diagnosed with craniosynostosis? This condition still requires surgery to correct. Many plagio babies used to have this surgery as well, as doctors mistook the misshapen head for cranio. ( So glad the helmet is around now! Welcome to the group! Kendra in Canada My 7 Year Old My 7 year old son, underwent surgery to correct the growth of his skull. I wish we would have known about the helmut back then. His first surgery was at 9 months to install the plates to reshape, and the 2nd surgery (removal of hardware) was done at 15 months old. He has a scar across his skull, from ear to ear. We were told that the scar would fade with time, but I don't see a big change in it. He is a very active child, and has had no complications. For this I am thankful!!For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2002 Report Share Posted March 18, 2002 He was diagnosed as having plagiocephaly back in 96. All his medical records show it listed as such. I do believe that it was an uncommon problem in the area we live, and the doctors chose the surgery. I was only 23 at the time, and a single mother, so I didn't know to research any further on the problem, or I would have gone with the helmut first, and maybe surgery as a last resort!!! I just hate that my son has to go through the questions of what happened. Thank you for replying!!! Kendra <p-nutsmum@...> wrote: Was your son possibly diagnosed with craniosynostosis? This condition still requires surgery to correct. Many plagio babies used to have this surgery as well, as doctors mistook the misshapen head for cranio. ( So glad the helmet is around now! Welcome to the group! Kendra in Canada My 7 Year Old My 7 year old son, underwent surgery to correct the growth of his skull. I wish we would have known about the helmut back then. His first surgery was at 9 months to install the plates to reshape, and the 2nd surgery (removal of hardware) was done at 15 months old. He has a scar across his skull, from ear to ear. We were told that the scar would fade with time, but I don't see a big change in it. He is a very active child, and has had no complications. For this I am thankful!!For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2002 Report Share Posted March 18, 2002 Hi - welcome to our group! I am so sorry that your son had to go thru the surgeries to correct his plagio.. It's a shame that you as a parent, weren't given all the information regarding plagio and what other treatment options were available besides surgery. The important thing of course, is that your son is active & has had no complications from his surgeries or plagio. I can imagine how hard all this has been on you & your son. Not to ask a dumb question, but could anything be done to correct his scar? Welcome again Debbie Abby's mom DOCGrad MI Was your son possibly diagnosed with craniosynostosis? This condition still requires surgery to correct. Many plagio babies used to have this surgery as well, as doctors mistook the misshapen head for cranio. ( So glad the helmet is around now! Welcome to the group!Kendra in Canada----- Original Message ----- From: trae5050 Plagiocephaly@y... Sent: Friday, March 15, 2002 8:17 PMSubject: My 7 Year Old > My 7 year old son, underwent surgery to correct the growth of his > skull. I wish we would have known about the helmut back then. His > first surgery was at 9 months to install the plates to reshape, and > the 2nd surgery (removal of hardware) was done at 15 months old. He > has a scar across his skull, from ear to ear. We were told that the > scar would fade with time, but I don't see a big change in it. He is > a very active child, and has had no complications. For this I am > thankful!! > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Hello and welcome to the group. I'm sorry that the helmet was not available to you when your son was a baby. I can only imagine how difficult it must have been seeing him go through two surgeries. It's great that he is a normal, active child. Marci (Mom to ) Oklahoma > My 7 year old son, underwent surgery to correct the growth of his > skull. I wish we would have known about the helmut back then. His > first surgery was at 9 months to install the plates to reshape, and > the 2nd surgery (removal of hardware) was done at 15 months old. He > has a scar across his skull, from ear to ear. We were told that the > scar would fade with time, but I don't see a big change in it. He is > a very active child, and has had no complications. For this I am > thankful!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 : Just so you know, the word "plagiocephaly" only refers to the shape of the baby's head. That's why here, it is POSITIONAL plagiocephaly, but we call it plagio for short. It is also a term used when referring to craniosynostosis. You can visit this page (www.plagiocephaly.org/support/types.htm) to see a few other head shapes, and their names. All of which can apply to both "plagio" and "cranio". If you do a search for craniosynostosis on the web, you will find all of these terms, and more used in reference to head shape. Hope that clears up any confusion. Kendra My 7 Year Old My 7 year old son, underwent surgery to correct the growth of his skull. I wish we would have known about the helmut back then. His first surgery was at 9 months to install the plates to reshape, and the 2nd surgery (removal of hardware) was done at 15 months old. He has a scar across his skull, from ear to ear. We were told that the scar would fade with time, but I don't see a big change in it. He is a very active child, and has had no complications. For this I am thankful!!For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2009 Report Share Posted August 2, 2009 Hi, I have a 7 year old who's Ctoma was removed last year when he was 6. He is doing really well. He had the canal wall up operation, so he can still swim and is really doing everything that normal healthy kids do. He has a moderate hearing loss in one ear which he wears a hearing aid for. We visited the Dr for a check up this week and he has stated that he doesn't want to operate for a least another year. He wants his ears to grow a little so that the bone implants are easier to implant and also so they won't need to be adjusted as he grows. Where are you? > > Just found out my little guy has this ...a congenital cholesteatoma, so it is all new to me! > > All your postings are kind of overwhelming- I wasn't really prepared to think this might drag out for years, or cause permanent damage! > > Hoping someone out there had a quick, uncomplicated resolution! > Quote Link to comment Share on other sites More sharing options...
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