Guest guest Posted July 30, 2002 Report Share Posted July 30, 2002 , where would i find the older plagio groups? ty very much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2002 Report Share Posted July 30, 2002 ty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2002 Report Share Posted July 30, 2002 Hi : I know that you will get good advice here, and you can also try the olderplag group that more specifically addresses plagio in the " older " child (maybe over the 2 year mark...) Welcome, and I know you'll get the info you need, or at least pointed in the right direction! Kind regards, > > Hi, I'm and my sons 3yrs olds and we are new here, i > never even knew this groups was here till a few days ago. And i was > very , very happy that i found it, because I need some help please . My son > was diagnosed with plagiocephaly in > Dec. 1999. He was put in a soft helmet.It seemed to help alittle.. he wore > it > untill Jan. 2002 .At that time the Dr told me his skull was closed and that > his head went back in place enough. Well over the last few months its > started > to go back very " lop-sided " again. when i went back to the dr monday he > said > he wants a CT and then would decide what to do.I ask him to put in back in > helmet untill the CT was done but he refused. Anyway everything i have read > tells about the bands or hard helmets and im kind-of questioning if my dr > is > or has done the right thing, I can't seem to find anything on the > difference > in hard helmets vs soft helmets. It's scary because now s to old for a > hard helmet from what ive heard and read. So im wondering (worring) what > can be done now if anything besides surgery? If any one has any thought or > suggestions i would greatly appriciate them.? > > Thanks, > > P.S. sorry it was so long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2002 Report Share Posted July 30, 2002 Hi & welcome to our group! We're glad you found us. It sounds like you are in a very difficult position right now. Has ever had CT scans done or Xrays previously to rule out craniosynostosis (before he turned 2)? It will probably be hard to tell now if he in fact has cranio, becuz usually around age 2, the bones fuse in the skull permanently fuse together. If the bones have fused before age 2, this is usually craniosynostosis. Plagiocephaly & craniosynostosis can be confused with one another. What did your Dr. say he would be looking for with the CT scan? It is very rare for plagio to continue getting worse or to regress after the sutures close, after age 2. It is a good idea to get the CTscan done. I hate to tell you, but I don't think there is any way to correct your son's condition now that he is 3 yrs of age without surgery . Do you have any photos you could send us? email to plagiocephaly We'd all love to see your cutie! Cranial Technologies, maker of the DOCband will not band a child after age 2, nor will any other helmet manufacturer. I hope you get some answers, I wish I could be of more help. Welcome again. Debbie Abby's mom DOCGrad MI > > Hi, I'm and my sons 3yrs olds and we are new here, i > never even knew this groups was here till a few days ago. And i was > very , very happy that i found it, because I need some help please . My son > was diagnosed with plagiocephaly in > Dec. 1999. He was put in a soft helmet.It seemed to help alittle.. he wore > it > untill Jan. 2002 .At that time the Dr told me his skull was closed and that > his head went back in place enough. Well over the last few months its > started > to go back very " lop-sided " again. when i went back to the dr monday he > said > he wants a CT and then would decide what to do.I ask him to put in back in > helmet untill the CT was done but he refused. Anyway everything i have read > tells about the bands or hard helmets and im kind-of questioning if my dr > is > or has done the right thing, I can't seem to find anything on the > difference > in hard helmets vs soft helmets. It's scary because now s to old for a > hard helmet from what ive heard and read. So im wondering (worring) what > can be done now if anything besides surgery? If any one has any thought or > suggestions i would greatly appriciate them.? > > Thanks, > > P.S. sorry it was so long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2002 Report Share Posted July 30, 2002 Debbie, Hi, ty for responding, yes has had several 3d CT's done in the past. The last one was in December and the Dr said that 's head had closed and that the plagio was as good as it was gonna get and he would just watch to make sure there was no pressure or swelling.He says he thinks the Brain has stopped growing on the left side and is pretruding to the right causing it to go out futher.Caused by the plagio..... im not real sure what hes looking for im assuming hes looking at the brain.yes here is a pic of taken last month!! it didnt look this bad after christmas. ty again Debbie.[unable to display image] i really apprcaite the advice.I have one more question if you dont mind. AAron is seeing a Plastic/Reconstuctive surgeon. Alot of parents say they take there kids to different kinds of DR . Should i find a different dr or is that just preference?ty again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 In a message dated 7/30/2002 10:51:40 PM Eastern Daylight Time, ytweety417@... writes: He says he thinks the Brain has stopped growing on the left side and is pretruding to the right causing it to go out futher.Caused by the plagio..... im not real sure what hes looking for im assuming hes looking at the brain Hi , I hope that your Doctor has educated himself about plagio and not just giving you his "theory" on what is happening. It may very well look like the one side has stopped growing to some, because its flat, but if he understands plagio, he would know that it is only the shifting of the way that the skull grows that is causing this to take shape that way, because of perhaps constant backside pressure to the one area, causing its flatness. I only throw that out there because that would be very alarming to hear, and I have heard Docs through this Board say some crazy things without really doing their homework- I think I would want to be referred to a nuerologist to get a better answer than that and they could refer you to a specialist from that point if needed as well. Sorry I didn't get the pics either, could you repost? Have you checked out www.cranialtech.com to see before and after pics of headshots? Do you think they look like ? I wouldn't say he's wrong, I'm certainly not the expert trying to play Doctor, there could be an issue with brain growth, but make sure he's really explained himself as to why he feels the brain has stopped growing, and I would ask plagio related questions to quiz him on his knowledge as a whole about plagio. Good luck and please do keep us posted! We are here for you 100% and are concerned about your little one as you are. ' mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Debbie, yw, No the dr has never metioned any other condition he thought could be causing this, he insist that it is plagio up untill this last visit wheen hew metioned the brain wasn't growing . has never seen a ped. neuro or craniofacial specialist? but i think its tim to check into one. I'm sorry the pic didnt go through. I tried again and it didn't through. I think i need to att it instead of pulling it into email. i will try that.ty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 , Hi, i resent the pic of AAron and it worked this time..This pic was taken about 2 months ago .I agree with you, i really do hope he knows what he talking about vs what " he thinks " . I tried to explain to the Dr that no matter what the CT said last time the his head had not closed because it was still shifting. He refuses to put the helmet back on him untill he does the CT in the mean time his head appears to be geting worse .I did look at that site ty but all the kids had on bands and i couldn't really see there heads. im going to take a pic of his head and send it. My husband and i were talking about if the Brain wasn't growing and i would think we would be seeing some kind of effect from that. is dev delayed in a few areas but he has been since he was 6 months old. this was due to his lack of being able to breath( he only has one lung). The only resent problem we have had is his eye sight but that was the first time he had seen a eye dr so that problem could have been there before.we are very much considering taking him to a different Dr. We go back on Tuesday for the head CT and I will quiz him and let you guys know what happens.Thank you very much for your concern and you suggestions. 's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 , Awww- has such a sweet face!!! He's a doll- love those eyes! I can see some mishapen areas of the head, and although I haven't seen the back, it does look a little like some plagio kids in that the head shifts to one side. I would definetly take him to another Doc if you feel this one is out of his mind! Besides, it never hurts to get a second opinion. Your probably taking into CT today- so let us know what happended at your appt. He looks like one healthy, fun loving kid to be dealing with some of the conditions you mentioned- give him a big ole squeeze from us! Good luck to you with figuring this all out- you are great parents to continue to seek out the best medical care for your son! Keep us posted! ' mom Quote Link to comment Share on other sites More sharing options...
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