Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 Welcome and Hello, They like to start the babies in helmet or band therapy around 4 mths but can start as late as 18 mths. Our baby Bri is 8 mths old and just starting helmet therapy she also has been miss shapen w/ torticollis since birth. I havn't had her in hers long enough (5 days) to see any improvement (although Daddy thinks he does) but I can say that she has adapted to the helmet wonderfully. If it were me I would go for the helmet/band therapy first because it is less invasive and if it works (and you should see improvement because the sutures don't fuse till around 24 mths.) then you just saved her from surgery. We are fairly new here and havn't been around the block as long as most of the families here but I wanted to share with you what I have learned & to let you know that you will get a wealth of information from this group as well as a wonderfull support system. Hope this helped you some, April Mommy to Bri and Mandy > Our , 11 months old, has just been diagnosed with plagio. We've > been concerned about her head shape since she was born, but I guess > our pediatrician never thought it was serious enough to worry about. > We had never heard of this condition before and sure were not aware > of the helmet for correction. Today we saw a plastic surgeon after > seeing a neurologist. We are feeling so disappointed about the fact > that no one ever mentioned the head band to us before now and we are > so afraid it is too late. To those of you out there who also waited > until this age to try it, please let us know what the outcome was. > We just don't see any other options at this point. We have been told > that the helmet won't do a whole lot at this point and I sure don't > want to put our daughter through a lot of misery, especially if there > won't be a positive outcome. PLEASE HELP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 No it is not too late. They are treating kids even older than yours. Any change in her head shape would be great. A lot of children have started treatment late. My son Spencer was 7 months old when he got his first DOC Band. He got his second one in Feb. 2001 and is now 12 1/2 months old. The results are incredible. I don't know if his head will ever be completely " perfect " . His ears are almost perfect. We were worried about his head shape since he was about 2-3 weeks old. We were lucky with his ped. cuz she was also concerned early on. We had xrays, cat scans and saw a neuroseurgeon who in fact said we would probably need reconstructive surgery when he was 2 or 3. He was completely against any BAND treatment at all and would not give me the referral. My ped. gave it to us and it was the best decision I could've made. We live in Va. Beach and travel to Charlotte every 2 weeks since September 2000. I wouldn't do it if it didn't make a difference. Hang in there and check out all your options. If you would like to contact me privately please do. > Our , 11 months old, has just been diagnosed with plagio. We've > been concerned about her head shape since she was born, but I guess > our pediatrician never thought it was serious enough to worry about. > We had never heard of this condition before and sure were not aware > of the helmet for correction. Today we saw a plastic surgeon after > seeing a neurologist. We are feeling so disappointed about the fact > that no one ever mentioned the head band to us before now and we are > so afraid it is too late. To those of you out there who also waited > until this age to try it, please let us know what the outcome was. > We just don't see any other options at this point. We have been told > that the helmet won't do a whole lot at this point and I sure don't > want to put our daughter through a lot of misery, especially if there > won't be a positive outcome. PLEASE HELP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 Hi - we banded Maggie at 1 week before her first b-day. she had mild to moderate plagio - flat on the entire left side, left frontal bulge, ear misalignment. She just graduated after 4 months and looks sooooooo good. (Check out my post Maggie's graduating). Even the people who siad they never saw anything wrong with her diad they saw a big difference. We are proof that the band can work after 1 year. Good luck. Kaycee in Albany, NY 12077 > Our , 11 months old, has just been diagnosed with plagio. We've > been concerned about her head shape since she was born, but I guess > our pediatrician never thought it was serious enough to worry about. > We had never heard of this condition before and sure were not aware > of the helmet for correction. Today we saw a plastic surgeon after > seeing a neurologist. We are feeling so disappointed about the fact > that no one ever mentioned the head band to us before now and we are > so afraid it is too late. To those of you out there who also waited > until this age to try it, please let us know what the outcome was. > We just don't see any other options at this point. We have been told > that the helmet won't do a whole lot at this point and I sure don't > want to put our daughter through a lot of misery, especially if there > won't be a positive outcome. PLEASE HELP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 Hi , my son is almost 13 and he was diagnosed with Aspergers when he was 9 yrs old. It has been a ride since he was little. He is very smart and very sweet. But lacks empathy, had to be taught about personal space, and so much. I really relate to you. One, get your self an advocate for the schools, they will fight you. Get your son an IEP, and never sign anything you dont agree with. Hey if you wish ......my personal email is Horizon1269@... and my phone is 33-505-9291. Call me, we can talk and I can tell you what I learned. I am Caren. -- I need advice! Hello. I have a 13 year old son whom was diagnosed with Asperger's about 2 years ago. I always knew something wasn't quite right, but just assumed he was extremely Shy and just a loner, then as he got older I noticed more symptoms, such as tantrums, obsession with certain things, facial and hand tics, routines, and other such oddities. He has seen the school counselor, and phsycotherapists, but they seem to be doing nothing for him and his disorder keeps progressing. He actually does quite well in school and is a straight A student, and is in high honors science. He has an outstanding memory, and is very visual. He plays the clarinet in the school band also! So academically he is great! But in the other sense he is so very immature for his age. He has no freinds at school or anywhere else for that matter. He will not socialize with peers his own age. I don't know what to do, or how to handle it. Especially when he throws his tantrums in a restaurant or supermarket over trivial things, people stare at us, thinking he's a spoiled brat, when actually it's the Aspie! I am not about to stand up at these moments in public and announce to everyone he has asperger's and embarrass my son. My son refuses to admit he has anything of the sort, he's in total denial of it, when I check books out of the library about it, he will hide them on me, so I can't read them. I cannot afford to have him see the therapist any longer, which was getting us nowhere anyhow, money down the toilet, all she did was play chess with him for an hour, and I was paying 100 dollars a week for that. My husbands insurance does not cover this type of problem. By no means are we poor, but we are not rich either, and I am caught between a rock and a hard place, I need advice from someone else on how to manage his tantrums and deal with them, and maybe calm him down, cause nothing I do is working! He also needs to learn how to be social and get along with others, I don't know where to begin. It's like trying to teach someone how to play the piano when you don't know how to play the piano yourself! HELP! Shelli Quote Link to comment Share on other sites More sharing options...
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