Guest guest Posted April 19, 2001 Report Share Posted April 19, 2001 Steph, Hello and welcome to the group. I'm glad you found us! Have you considered trying to get Loren into a DOC or STARband? There are lots of parents in this group who have treated their babies with a band later even than 11 months and have had good success. As far as the tort goes I would definately try to get in to some PT if you think it is still an issue. Unresolved tort can lead to all sorts of problems later on down the line other than just plagio related problems. I would recommend joining the group called torticolliskids. The people there could answer any questions about tort! I hope you will stick with us for awhile. I think you will find this group to be an awesome source of support, answers and friendship! They have helped me more than words can express. Best wishes to you, Loren and your family. Marci (mom to - helmet grad) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2001 Report Share Posted April 19, 2001 In a message dated 4/19/01 11:00:11 AM Pacific Daylight Time, tdunayer@... writes: Now I am wondering if I messed up by not doing the neck excersises. I just want to help my precious baby. I REALLY need to talk to someone other than a doctor. thank you, steph Steph - I take it the torticollis is not resolved? Resolving the tort is critical for treating the plagio. Especially the ROM for sleeping. If still back sleeping and always in the same spot, once out of the helmet I would think some regression. Also tort babies do not like tummy time because of the tight chest/neck muscles so many aren't great rollers. Many battle the tort until walking and weekly pt sessions and daily stretching and strengthening is key. The older they get, the harder. Much easier when younger, you can even do stretching while sleeping! You can always think about treating the plagio again. I went 4 months in-between bands because we didn't see any improvements. Tammy & 12/8/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2001 Report Share Posted April 19, 2001 In a message dated 4/19/01 1:22:36 PM Pacific Daylight Time, tdunayer@... writes: .. She seems to be fine with it and her head tilts slightly and she can also move her head from side to side. I am doing the neck excersises and can't afford PT at the time. I'm more concerned with the facial assymetries. It's not all that noticeable but want to do everything to help Steph - You can get pt free of at low cost through the Early Intervention Program. In WI we automatically qualified with a diagnoses of tort but not true in other states. They come right to your home. Cost is based on your income and expenses. Tort with plagio does so often include facial asymmetry. The tort is pulling on the neck and facial muscles so you need to get that tort resolved. We have one fuller cheek, narrow jaw, eyes off, chin, ears. We've graduated from our second band and have had improvement in facial asymmetry. Due to his being pretty severe case of plagio/tort, we most likely will always have some facial asymmetry and still no "perfect" little head but a great improvement. Hopefully in time, we'll see more correction. Join torticolliskids. Check out the links section for lots of great articles. Are you thinking about a second helment/band? Tammy & 12/8/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2001 Report Share Posted April 19, 2001 Hi Steph- My name is Lori and my dd Lexi just turned 2. She had a moderate/severe case of torticollis and some minor plagiocephaly that accompanied it! I am happy to say that she is doing well, with the exception of some nagging feeding problems (that may not be connected to the tort). Have you looked into Early Intervention? Many times, they will provide services in your home (that would help with the other child). If you're not getting PT services currently, I'd get in ASAP and get going on the stretching. It isn't too late but it is going to be a bit harder to treat now because of her independance level and often stranger axiety plays into the situation at this age. They fight the stretches more especially when they aren't used to them! Is she experiencing any Gross Motor Skill delays? That is very common for kids with tort. My dd had just started crawling at 11 months when other kids her age were walking around her. She didn't walk until 15.5 months. I'd also recommend a TOT collar to help eliminate the tilt! Check out the info at http://pages.ivillage.com/torticolliskids/torticolliskids/ Also, feel free to email me anytime at lawatson17@... Nice to meet you. Welcome! Lori and Lexi Milwaukee --- tdunayer@... wrote: > Hello, my name is Steph and my daughter was > diagnosed with Positional > plagiocephaly/Torticollis. I have sooo many > questions for other > parents that are dealing with the same thing. The > CT scan showed > normal brain activity, which was wonderful news and > she was wearing > the helmet to correct the flat spots on both sides > of her head. Her > case is a little different because her clavical > broke during delivery > and from then on, she favored one side to lay on and > to nurse. She > was put in a helmet at 7 months and it looks like it > has helped some > but her forehead looks like it pertrudes a little, > her eyes a little > lop-sided and her left cheek is puffier than the > other. During the 2 > months that she was wearing the helmet, I did not do > the neck > excersises (lots of reasons) and I didn't know the > connection between > torticollis and plagiocephaly. My husband always > took her to her > appts. and I watched my 2 yr. old. Now I am > wondering if I messed up > by not doing the neck excersises. I just want to > help my precious > baby. I REALLY need to talk to someone other than a > doctor. > > thank you, > steph > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2001 Report Share Posted April 19, 2001 I do not know the severity of the torticollis. She seems to be fine with it and her head tilts slightly and she can also move her head from side to side. I am doing the neck excersises and can't afford PT at the time. I'm more concerned with the facial assymetries. It's not all that noticeable but want to do everything to help. There are some babies without torticollis and have facial assymetries and I was told the torticollis caused the assymetries. The doctors just tell us to do the neck excersises and really didn't tell us to focus on the torticollis just to make sure she wore her helmet 23 hours of the day. steph/loren 5/9/00 ----- Original Message ----- From: bailykuhn@... Plagiocephaly Sent: Thursday, April 19, 2001 3:56 PM Subject: Re: loren my 11mon. old In a message dated 4/19/01 11:00:11 AM Pacific Daylight Time, tdunayer@... writes: Now I am wondering if I messed up by not doing the neck excersises. I just want to help my precious baby. I REALLY need to talk to someone other than a doctor. thank you, steph Steph - I take it the torticollis is not resolved? Resolving the tort is critical for treating the plagio. Especially the ROM for sleeping. If still back sleeping and always in the same spot, once out of the helmet I would think some regression. Also tort babies do not like tummy time because of the tight chest/neck muscles so many aren't great rollers. Many battle the tort until walking and weekly pt sessions and daily stretching and strengthening is key. The older they get, the harder. Much easier when younger, you can even do stretching while sleeping! You can always think about treating the plagio again. I went 4 months in-between bands because we didn't see any improvements. Tammy & 12/8/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2001 Report Share Posted April 19, 2001 we are in the process of a 2nd band just waiting on the insurance to comply. we had to REALLY fight to get them to pay for the 1st one and so we don't know if they will pay for the 2nd. Now that I know about the stretching, I am doing it faithfully.----- Original Message -- From: bailykuhn@... Plagiocephaly Sent: Thursday, April 19, 2001 4:41 PM Subject: Re: loren my 11mon. old In a message dated 4/19/01 1:22:36 PM Pacific Daylight Time, tdunayer@... writes: .. She seems to be fine with it and her head tilts slightly and she can also move her head from side to side. I am doing the neck excersises and can't afford PT at the time. I'm more concerned with the facial assymetries. It's not all that noticeable but want to do everything to helpSteph - You can get pt free of at low cost through the Early Intervention Program. In WI we automatically qualified with a diagnoses of tort but not true in other states. They come right to your home. Cost is based on your income and expenses. Tort with plagio does so often include facial asymmetry. The tort is pulling on the neck and facial muscles so you need to get that tort resolved. We have one fuller cheek, narrow jaw, eyes off, chin, ears. We've graduated from our second band and have had improvement in facial asymmetry. Due to his being pretty severe case of plagio/tort, we most likely will always have some facial asymmetry and still no "perfect" little head but a great improvement. Hopefully in time, we'll see more correction. Join torticolliskids. Check out the links section for lots of great articles. Are you thinking about a second helment/band? Tammy & 12/8/99 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.