Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 , so sorry to hear that you are feeling all these emotions. It just takes me back to what I felt as well in the begining. Don't feel guilty because this isn't anything you could have prevented since you didn't know that it even existed! Since your daughter has tort, it would be very difficult to start repositioning her since it's much harder with their neck muscles having little range of motion. Waydon didn't have tort, so hopefully some others with tort babies will chime in to give you some advice for the meantime. It's good that they caught this early, she's very young and with PT she'll do great! If she does need a band/helmet you'd be getting her in one probably before 6 months of age and that's great for the growth spurts. She may not even need to wear one very long if this is the case.I wish you luck and glad you found the group! Welcome!LacyWaydon 1 yearDOC Gradhttp://waydonsnoodle.com >> Hello,> > My name is and I have a 2 month old daughter, Amelia, who was> just diagnosed with torticollis and plagiocephaly by her pediatrician.> I am going through all sorts of emotions right now--fear, sadness,> guilt... and I found this group. We are on a waiting list for a PT> evaluation so that only leads to my frustration because I want help> for her now. Is there anything that I should be doing while we wait> for our eval? Will they tell me at the eval. if we should pursue a> helmet/band? I am just starting to learn about plagiocephaly. Any> information that anyone can share about this whole process would be> great. > > Thanks so much,> > Minnesota> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 , so sorry to hear that you are feeling all these emotions. It just takes me back to what I felt as well in the begining. Don't feel guilty because this isn't anything you could have prevented since you didn't know that it even existed! Since your daughter has tort, it would be very difficult to start repositioning her since it's much harder with their neck muscles having little range of motion. Waydon didn't have tort, so hopefully some others with tort babies will chime in to give you some advice for the meantime. It's good that they caught this early, she's very young and with PT she'll do great! If she does need a band/helmet you'd be getting her in one probably before 6 months of age and that's great for the growth spurts. She may not even need to wear one very long if this is the case.I wish you luck and glad you found the group! Welcome!LacyWaydon 1 yearDOC Gradhttp://waydonsnoodle.com >> Hello,> > My name is and I have a 2 month old daughter, Amelia, who was> just diagnosed with torticollis and plagiocephaly by her pediatrician.> I am going through all sorts of emotions right now--fear, sadness,> guilt... and I found this group. We are on a waiting list for a PT> evaluation so that only leads to my frustration because I want help> for her now. Is there anything that I should be doing while we wait> for our eval? Will they tell me at the eval. if we should pursue a> helmet/band? I am just starting to learn about plagiocephaly. Any> information that anyone can share about this whole process would be> great. > > Thanks so much,> > Minnesota> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Hi Debbie, Thanks for your encouragement! Brielle is a beautiful girl! The progress that she has made is also encouraging! Our pediatrician didn't say how severe it is and told us to try to keep her off her flat spot as much as possible. Her flattened area is on the ride back side of her head. We try to do tummy time but Amelia screams and screams. We've tried putting her on the boppy and on a rolled up blanket and she still screams. We just started putting her on the exercise ball but she doesn't like that either. Will it get easier for her to tolerate? There is a cranial tech about 4 hours away from us. Should I be in touch with them before we have her pt eval? I feel so helpless right now because we just have to wait and I know that time is critical. I'm glad I found this group. There is a lot of good information here. and Amelia Minnesota > > > > Hello, > > > > My name is and I have a 2 month old daughter, Amelia, who was > > just diagnosed with torticollis and plagiocephaly by her > pediatrician. > > I am going through all sorts of emotions right now--fear, sadness, > > guilt... and I found this group. We are on a waiting list for a PT > > evaluation so that only leads to my frustration because I want help > > for her now. Is there anything that I should be doing while we > wait > > for our eval? Will they tell me at the eval. if we should pursue a > > helmet/band? I am just starting to learn about plagiocephaly. Any > > information that anyone can share about this whole process would be > > great. > > > > Thanks so much, > > > > Minnesota > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Hi Debbie, Thanks for your encouragement! Brielle is a beautiful girl! The progress that she has made is also encouraging! Our pediatrician didn't say how severe it is and told us to try to keep her off her flat spot as much as possible. Her flattened area is on the ride back side of her head. We try to do tummy time but Amelia screams and screams. We've tried putting her on the boppy and on a rolled up blanket and she still screams. We just started putting her on the exercise ball but she doesn't like that either. Will it get easier for her to tolerate? There is a cranial tech about 4 hours away from us. Should I be in touch with them before we have her pt eval? I feel so helpless right now because we just have to wait and I know that time is critical. I'm glad I found this group. There is a lot of good information here. and Amelia Minnesota > > > > Hello, > > > > My name is and I have a 2 month old daughter, Amelia, who was > > just diagnosed with torticollis and plagiocephaly by her > pediatrician. > > I am going through all sorts of emotions right now--fear, sadness, > > guilt... and I found this group. We are on a waiting list for a PT > > evaluation so that only leads to my frustration because I want help > > for her now. Is there anything that I should be doing while we > wait > > for our eval? Will they tell me at the eval. if we should pursue a > > helmet/band? I am just starting to learn about plagiocephaly. Any > > information that anyone can share about this whole process would be > > great. > > > > Thanks so much, > > > > Minnesota > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Hi , Thanks for your words of encouragement. It's good to hear from another mom who has gone through this. Did you seek out the cranial facial expert or did you get referred by someone? I just wonder if I should start searching for a specialist or if I have to wait for Amelia's evaluation. We try to do as much tummy time as Amelia will tolerate. We do small doses of it often during the day because she screams so much during it. I just ordered a bumbo seat yesterday and I look forward to getting that. Do you put Sophie in a sleep positioner so she stays on her side? Thanks for the list of what you are doing. We are trying to do as much as we can to keep her off of her flattened area but it is so hard. and Amelia Minnesota > > > > Hello, > > > > My name is and I have a 2 month old daughter, Amelia, who was > > just diagnosed with torticollis and plagiocephaly by her > pediatrician. > > I am going through all sorts of emotions right now--fear, sadness, > > guilt... and I found this group. We are on a waiting list for a PT > > evaluation so that only leads to my frustration because I want help > > for her now. Is there anything that I should be doing while we > wait > > for our eval? Will they tell me at the eval. if we should pursue a > > helmet/band? I am just starting to learn about plagiocephaly. Any > > information that anyone can share about this whole process would be > > great. > > > > Thanks so much, > > > > Minnesota > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Hi , Thanks for your words of encouragement. It's good to hear from another mom who has gone through this. Did you seek out the cranial facial expert or did you get referred by someone? I just wonder if I should start searching for a specialist or if I have to wait for Amelia's evaluation. We try to do as much tummy time as Amelia will tolerate. We do small doses of it often during the day because she screams so much during it. I just ordered a bumbo seat yesterday and I look forward to getting that. Do you put Sophie in a sleep positioner so she stays on her side? Thanks for the list of what you are doing. We are trying to do as much as we can to keep her off of her flattened area but it is so hard. and Amelia Minnesota > > > > Hello, > > > > My name is and I have a 2 month old daughter, Amelia, who was > > just diagnosed with torticollis and plagiocephaly by her > pediatrician. > > I am going through all sorts of emotions right now--fear, sadness, > > guilt... and I found this group. We are on a waiting list for a PT > > evaluation so that only leads to my frustration because I want help > > for her now. Is there anything that I should be doing while we > wait > > for our eval? Will they tell me at the eval. if we should pursue a > > helmet/band? I am just starting to learn about plagiocephaly. Any > > information that anyone can share about this whole process would be > > great. > > > > Thanks so much, > > > > Minnesota > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 - You are in a great place with Amelia! My daughter just turned 6 months, and our path started right where you are now. We recognized problems (couldn't name torticollis) by 4 weeks, and she was diagnosed at 2 months. We started physical therapy and repositioning immediately. She already had significant plagiocephaly. We were very aggressive about repositioning, and have been extremely fortunate that she loves tummy time. Despite our efforts, she was showing facial assymmetry by 3 months. Her ped referred her to a cranial facial surgeon, but she had to wait 7 weeks for an appt. (which we were told was a short wait!) The wait was kind of to our benefit because, since we did see some improvement during that time. But towards the end we started to see more flattening and assymmetry. Even with her spending virtually all of her waking hours on her tummy, in the saucer, or sitting! When the specialist said he couldn't help her, we were comfortable moving forward with banding. Without that extended time, I'm not sure I would have been ready to make a decision. I will tell you that I think Teagan developed the most flattening and assymmetry from 2-3 months. At that age we could have been more aggressive about repositioning, (and it would have been a lot easier as she couldn't roll, and had limited range of motion in her neck) but we were told not to worry about her flat head. As her headshape worsened, we found more information about repositioning. It wasn't until she was 4 months when they started to tell us that the shape of her head was permanent. Until then, everyone kept saying it would go back to normal on its own. Don't think of time between appointments as just waiting. There are things you can do (stretching, repositioning). Use that time to help yourself make a decision you are comfortable with. You have the time to try repositioning and possibly avoid banding, and if necessary, the time to identify the best banding option for your baby. Not to mention the time to figure out the insurance issues! Teagan is now about to graduate from physical therapy, and should get her DOC Band this week. Although it's clear the earlier they start the band the better, the treatment seems to be effective almost any time during the first year. You can't change the past, so don't beat yourself up about it. Good luck - and please feel free to ask if you have any questions about anything. Tammy na 7/02 Teagan 4/05 > > Hello, > > My name is and I have a 2 month old daughter, Amelia, who was > just diagnosed with torticollis and plagiocephaly by her pediatrician. > I am going through all sorts of emotions right now--fear, sadness, > guilt... and I found this group. We are on a waiting list for a PT > evaluation so that only leads to my frustration because I want help > for her now. Is there anything that I should be doing while we wait > for our eval? Will they tell me at the eval. if we should pursue a > helmet/band? I am just starting to learn about plagiocephaly. Any > information that anyone can share about this whole process would be > great. > > Thanks so much, > > Minnesota > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 - You are in a great place with Amelia! My daughter just turned 6 months, and our path started right where you are now. We recognized problems (couldn't name torticollis) by 4 weeks, and she was diagnosed at 2 months. We started physical therapy and repositioning immediately. She already had significant plagiocephaly. We were very aggressive about repositioning, and have been extremely fortunate that she loves tummy time. Despite our efforts, she was showing facial assymmetry by 3 months. Her ped referred her to a cranial facial surgeon, but she had to wait 7 weeks for an appt. (which we were told was a short wait!) The wait was kind of to our benefit because, since we did see some improvement during that time. But towards the end we started to see more flattening and assymmetry. Even with her spending virtually all of her waking hours on her tummy, in the saucer, or sitting! When the specialist said he couldn't help her, we were comfortable moving forward with banding. Without that extended time, I'm not sure I would have been ready to make a decision. I will tell you that I think Teagan developed the most flattening and assymmetry from 2-3 months. At that age we could have been more aggressive about repositioning, (and it would have been a lot easier as she couldn't roll, and had limited range of motion in her neck) but we were told not to worry about her flat head. As her headshape worsened, we found more information about repositioning. It wasn't until she was 4 months when they started to tell us that the shape of her head was permanent. Until then, everyone kept saying it would go back to normal on its own. Don't think of time between appointments as just waiting. There are things you can do (stretching, repositioning). Use that time to help yourself make a decision you are comfortable with. You have the time to try repositioning and possibly avoid banding, and if necessary, the time to identify the best banding option for your baby. Not to mention the time to figure out the insurance issues! Teagan is now about to graduate from physical therapy, and should get her DOC Band this week. Although it's clear the earlier they start the band the better, the treatment seems to be effective almost any time during the first year. You can't change the past, so don't beat yourself up about it. Good luck - and please feel free to ask if you have any questions about anything. Tammy na 7/02 Teagan 4/05 > > Hello, > > My name is and I have a 2 month old daughter, Amelia, who was > just diagnosed with torticollis and plagiocephaly by her pediatrician. > I am going through all sorts of emotions right now--fear, sadness, > guilt... and I found this group. We are on a waiting list for a PT > evaluation so that only leads to my frustration because I want help > for her now. Is there anything that I should be doing while we wait > for our eval? Will they tell me at the eval. if we should pursue a > helmet/band? I am just starting to learn about plagiocephaly. Any > information that anyone can share about this whole process would be > great. > > Thanks so much, > > Minnesota > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Hi . Tummy time will get easier. I remember crying when Brielle would only tolerate 2-3 minutes and little by little we worked up to 12minutes. Try to put her on her tummy every half hour for short periods whatever she will tolerate. I think we bought every light up toy to keep her mind off of her tummy. There is a great website, I ordered the video, heads up baby (www.headsupbaby) it shows you the stretches you need to do. We saw a cranial facial specialist and a neurosurgeon. On cranial techs website, there is a severity chart were you can compare to see how severe she is. Also you can posts pictures and everyone here could give you input. Cranial tech is good. They recommended a band for Brielle, but we decided against it. If she was more severe, we would have done it. IF you do have her on her back, she needs to reach for things and her feet eventually, this will help her tummy muscles, just keep her in midline. It does seem overwhelming, but it gets easier. You can e- mail me anytime with questions or concerns. When is the PT appt? Are you going to a cranial facial specialist? ITs up to you if you want to travel to cranial tech. Sounds like you have gotten some great info already. We slept Brielle on her side between two positioners. I think we bought everyone on the markets, but it worked. It was tiring. After she could roll both ways, we slept her on her belly around 5mos. She was in her basinet next to me until than so I could keep an eye on her. We also bought a video monitor so I could see that she was not on that flat spot. Debbie and Brielle > > > > > > Hello, > > > > > > My name is and I have a 2 month old daughter, Amelia, who was > > > just diagnosed with torticollis and plagiocephaly by her > > pediatrician. > > > I am going through all sorts of emotions right now--fear, sadness, > > > guilt... and I found this group. We are on a waiting list for a PT > > > evaluation so that only leads to my frustration because I want help > > > for her now. Is there anything that I should be doing while we > > wait > > > for our eval? Will they tell me at the eval. if we should pursue a > > > helmet/band? I am just starting to learn about plagiocephaly. Any > > > information that anyone can share about this whole process would be > > > great. > > > > > > Thanks so much, > > > > > > Minnesota > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Hi . Tummy time will get easier. I remember crying when Brielle would only tolerate 2-3 minutes and little by little we worked up to 12minutes. Try to put her on her tummy every half hour for short periods whatever she will tolerate. I think we bought every light up toy to keep her mind off of her tummy. There is a great website, I ordered the video, heads up baby (www.headsupbaby) it shows you the stretches you need to do. We saw a cranial facial specialist and a neurosurgeon. On cranial techs website, there is a severity chart were you can compare to see how severe she is. Also you can posts pictures and everyone here could give you input. Cranial tech is good. They recommended a band for Brielle, but we decided against it. If she was more severe, we would have done it. IF you do have her on her back, she needs to reach for things and her feet eventually, this will help her tummy muscles, just keep her in midline. It does seem overwhelming, but it gets easier. You can e- mail me anytime with questions or concerns. When is the PT appt? Are you going to a cranial facial specialist? ITs up to you if you want to travel to cranial tech. Sounds like you have gotten some great info already. We slept Brielle on her side between two positioners. I think we bought everyone on the markets, but it worked. It was tiring. After she could roll both ways, we slept her on her belly around 5mos. She was in her basinet next to me until than so I could keep an eye on her. We also bought a video monitor so I could see that she was not on that flat spot. Debbie and Brielle > > > > > > Hello, > > > > > > My name is and I have a 2 month old daughter, Amelia, who was > > > just diagnosed with torticollis and plagiocephaly by her > > pediatrician. > > > I am going through all sorts of emotions right now--fear, sadness, > > > guilt... and I found this group. We are on a waiting list for a PT > > > evaluation so that only leads to my frustration because I want help > > > for her now. Is there anything that I should be doing while we > > wait > > > for our eval? Will they tell me at the eval. if we should pursue a > > > helmet/band? I am just starting to learn about plagiocephaly. Any > > > information that anyone can share about this whole process would be > > > great. > > > > > > Thanks so much, > > > > > > Minnesota > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 , Welcome to the group. Everything you are feeling is normal. The important thing to focus on is that you are seeking help for your daughter now, nice and early and isn't that what makes a good mommy. Good for you!! Have you contacted your local Early Intervention program for help. You can get the info for your area in the files section. You can do lots of tummy time while you wait for PT eval. Your little one is very young and can also benefit from repositioning to help her headshape and tort. The files section here is a great and we have two repo mods that are a wealth of info to help get you started. Please post for REPO HELP. Good Luck with your journey and feel free to ask any question or vent your frustrations here. My son Dominick was treated for severe plagiocephaly and muscle imbalances. You can look at his website and read his story at www.mybandedbaby.typepad.com. CAROLG > > Hello, > > My name is and I have a 2 month old daughter, Amelia, who was > just diagnosed with torticollis and plagiocephaly by her pediatrician. > I am going through all sorts of emotions right now--fear, sadness, > guilt... and I found this group. We are on a waiting list for a PT > evaluation so that only leads to my frustration because I want help > for her now. Is there anything that I should be doing while we wait > for our eval? Will they tell me at the eval. if we should pursue a > helmet/band? I am just starting to learn about plagiocephaly. Any > information that anyone can share about this whole process would be > great. > > Thanks so much, > > Minnesota > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 , Welcome to the group. Everything you are feeling is normal. The important thing to focus on is that you are seeking help for your daughter now, nice and early and isn't that what makes a good mommy. Good for you!! Have you contacted your local Early Intervention program for help. You can get the info for your area in the files section. You can do lots of tummy time while you wait for PT eval. Your little one is very young and can also benefit from repositioning to help her headshape and tort. The files section here is a great and we have two repo mods that are a wealth of info to help get you started. Please post for REPO HELP. Good Luck with your journey and feel free to ask any question or vent your frustrations here. My son Dominick was treated for severe plagiocephaly and muscle imbalances. You can look at his website and read his story at www.mybandedbaby.typepad.com. CAROLG > > Hello, > > My name is and I have a 2 month old daughter, Amelia, who was > just diagnosed with torticollis and plagiocephaly by her pediatrician. > I am going through all sorts of emotions right now--fear, sadness, > guilt... and I found this group. We are on a waiting list for a PT > evaluation so that only leads to my frustration because I want help > for her now. Is there anything that I should be doing while we wait > for our eval? Will they tell me at the eval. if we should pursue a > helmet/band? I am just starting to learn about plagiocephaly. Any > information that anyone can share about this whole process would be > great. > > Thanks so much, > > Minnesota > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Hi Everyone-- I am new to this group too. I have a 4 and 1/2 month old daughter named Marina. We just came back from our appointment with the cranial facial specialist today. I am so angry with our pediatrician and myself for not pursuing this sooner. Marina has had a mishapen head since birth and our pediatrician kept telling us that it would go away on its own. He said to wait and see at her 6 month checkup. He wouldn't give us a referral to a specialist until I insisted that I wanted a second opinion NOW. Had to wait two weeks to get in to the specialist and here we are. The specialist suggested that she would benefit from a doc band as she has had this condition inutero. It could take 3-4 months to treat and at least 3 weeks to get the band...I am having mixed emotions about the treatment...I know that it will be best for her in the long run..It's just so hard to picture my beautiful baby in the band. The photos of the other children make me cry...Any suggestions?? Thanks- > > > > > > > > Hello, > > > > > > > > My name is and I have a 2 month old daughter, Amelia, who > was > > > > just diagnosed with torticollis and plagiocephaly by her > > > pediatrician. > > > > I am going through all sorts of emotions right now--fear, > sadness, > > > > guilt... and I found this group. We are on a waiting list for > a PT > > > > evaluation so that only leads to my frustration because I want > help > > > > for her now. Is there anything that I should be doing while > we > > > wait > > > > for our eval? Will they tell me at the eval. if we should > pursue a > > > > helmet/band? I am just starting to learn about plagiocephaly. > Any > > > > information that anyone can share about this whole process > would be > > > > great. > > > > > > > > Thanks so much, > > > > > > > > Minnesota > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Hi Everyone-- I am new to this group too. I have a 4 and 1/2 month old daughter named Marina. We just came back from our appointment with the cranial facial specialist today. I am so angry with our pediatrician and myself for not pursuing this sooner. Marina has had a mishapen head since birth and our pediatrician kept telling us that it would go away on its own. He said to wait and see at her 6 month checkup. He wouldn't give us a referral to a specialist until I insisted that I wanted a second opinion NOW. Had to wait two weeks to get in to the specialist and here we are. The specialist suggested that she would benefit from a doc band as she has had this condition inutero. It could take 3-4 months to treat and at least 3 weeks to get the band...I am having mixed emotions about the treatment...I know that it will be best for her in the long run..It's just so hard to picture my beautiful baby in the band. The photos of the other children make me cry...Any suggestions?? Thanks- > > > > > > > > Hello, > > > > > > > > My name is and I have a 2 month old daughter, Amelia, who > was > > > > just diagnosed with torticollis and plagiocephaly by her > > > pediatrician. > > > > I am going through all sorts of emotions right now--fear, > sadness, > > > > guilt... and I found this group. We are on a waiting list for > a PT > > > > evaluation so that only leads to my frustration because I want > help > > > > for her now. Is there anything that I should be doing while > we > > > wait > > > > for our eval? Will they tell me at the eval. if we should > pursue a > > > > helmet/band? I am just starting to learn about plagiocephaly. > Any > > > > information that anyone can share about this whole process > would be > > > > great. > > > > > > > > Thanks so much, > > > > > > > > Minnesota > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 > > > > > > > > > > Hello, > > > > > > > > > > My name is and I have a 2 month old daughter, Amelia, > who > > was > > > > > just diagnosed with torticollis and plagiocephaly by her > > > > pediatrician. > > > > > I am going through all sorts of emotions right now--fear, > > sadness, > > > > > guilt... and I found this group. We are on a waiting list > for > > a PT > > > > > evaluation so that only leads to my frustration because I > want > > help > > > > > for her now. Is there anything that I should be doing > while > > we > > > > wait > > > > > for our eval? Will they tell me at the eval. if we should > > pursue a > > > > > helmet/band? I am just starting to learn about > plagiocephaly. > > Any > > > > > information that anyone can share about this whole process > > would be > > > > > great. > > > > > > > > > > Thanks so much, > > > > > > > > > > Minnesota > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 > > > > > > > > > > Hello, > > > > > > > > > > My name is and I have a 2 month old daughter, Amelia, > who > > was > > > > > just diagnosed with torticollis and plagiocephaly by her > > > > pediatrician. > > > > > I am going through all sorts of emotions right now--fear, > > sadness, > > > > > guilt... and I found this group. We are on a waiting list > for > > a PT > > > > > evaluation so that only leads to my frustration because I > want > > help > > > > > for her now. Is there anything that I should be doing > while > > we > > > > wait > > > > > for our eval? Will they tell me at the eval. if we should > > pursue a > > > > > helmet/band? I am just starting to learn about > plagiocephaly. > > Any > > > > > information that anyone can share about this whole process > > would be > > > > > great. > > > > > > > > > > Thanks so much, > > > > > > > > > > Minnesota > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Marina is at a great age for correction! Our son was on the severe side. He got his band right when he turned 5 months. He wore it for 3 months. He's 4 now and doesn't really even have a hint of plagio. Our new pediatrician didn't believe he ever had a problem! It can be overwhelming when you're trying to make the decision. Please know that a DOC Band won't bother Marina. She'll play and smile just like she would without the band. The only difference is that her head will be correcting. She will still be your beautiful baby. You can decorate it to match her personality and make it less sterile. I always get compliments on how cute my daughter looks " in that neat hat. " It's such a short time frame in her life and she certainly won't remember it. Good luck with your decision. Mom to Dane 4yo (DOC Grad) and Cece 10mo (DOC 9/05) > > Hi Everyone-- > I am new to this group too. I have a 4 and 1/2 month old daughter > named Marina. We just came back from our appointment with the > cranial facial specialist today. I am so angry with our pediatrician > and myself for not pursuing this sooner. Marina has had a mishapen > head since birth and our pediatrician kept telling us that it would > go away on its own. He said to wait and see at her 6 month checkup. > He wouldn't give us a referral to a specialist until I insisted that > I wanted a second opinion NOW. Had to wait two weeks to get in to > the specialist and here we are. The specialist suggested that she > would benefit from a doc band as she has had this condition inutero. > It could take 3-4 months to treat and at least 3 weeks to get the > band...I am having mixed emotions about the treatment...I know that > it will be best for her in the long run..It's just so hard to > picture my beautiful baby in the band. The photos of the other > children make me cry...Any suggestions?? Thanks- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Marina is at a great age for correction! Our son was on the severe side. He got his band right when he turned 5 months. He wore it for 3 months. He's 4 now and doesn't really even have a hint of plagio. Our new pediatrician didn't believe he ever had a problem! It can be overwhelming when you're trying to make the decision. Please know that a DOC Band won't bother Marina. She'll play and smile just like she would without the band. The only difference is that her head will be correcting. She will still be your beautiful baby. You can decorate it to match her personality and make it less sterile. I always get compliments on how cute my daughter looks " in that neat hat. " It's such a short time frame in her life and she certainly won't remember it. Good luck with your decision. Mom to Dane 4yo (DOC Grad) and Cece 10mo (DOC 9/05) > > Hi Everyone-- > I am new to this group too. I have a 4 and 1/2 month old daughter > named Marina. We just came back from our appointment with the > cranial facial specialist today. I am so angry with our pediatrician > and myself for not pursuing this sooner. Marina has had a mishapen > head since birth and our pediatrician kept telling us that it would > go away on its own. He said to wait and see at her 6 month checkup. > He wouldn't give us a referral to a specialist until I insisted that > I wanted a second opinion NOW. Had to wait two weeks to get in to > the specialist and here we are. The specialist suggested that she > would benefit from a doc band as she has had this condition inutero. > It could take 3-4 months to treat and at least 3 weeks to get the > band...I am having mixed emotions about the treatment...I know that > it will be best for her in the long run..It's just so hard to > picture my beautiful baby in the band. The photos of the other > children make me cry...Any suggestions?? Thanks- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Welcome to the group.... Your story is so familiar, theres lots of us here that are really mad about our pediatricians saying they'll grow out of it. But you are on the road to fixing it. I remember crying too when I saw the photos of the babies with the helmets. If you do go with a helmet, and it sounds like you will, the helmets are so easily adjusted to by the kids. I think it is harder on us as parents. Your daughter will probably be fine with the helmet, I didn't believe that either when we first got my son's helmet, but I was completely amazed at how well he did with it. Your daughter will come to realize that the helmet is part of her, and she'll miss not having it. It's your child, and as a parent, you want to do everything possible to give them every opportunity in the world. I looked at it that way too, and that helped. I've only been a member of this group a few weeks, but everyone is so nice and helpful, and it's good to talk to other moms who are going through or have been through what you are dealing with. It sounds like you are going for a DOC band with Cranial Tech? Good luck to you, and again welcome to the group, they are a wealth of information and support! Ingrid Brett Plagio 9mo > > > > > > > > > > Hello, > > > > > > > > > > My name is and I have a 2 month old daughter, Amelia, > who > > was > > > > > just diagnosed with torticollis and plagiocephaly by her > > > > pediatrician. > > > > > I am going through all sorts of emotions right now--fear, > > sadness, > > > > > guilt... and I found this group. We are on a waiting list > for > > a PT > > > > > evaluation so that only leads to my frustration because I > want > > help > > > > > for her now. Is there anything that I should be doing > while > > we > > > > wait > > > > > for our eval? Will they tell me at the eval. if we should > > pursue a > > > > > helmet/band? I am just starting to learn about > plagiocephaly. > > Any > > > > > information that anyone can share about this whole process > > would be > > > > > great. > > > > > > > > > > Thanks so much, > > > > > > > > > > Minnesota > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Welcome to the group.... Your story is so familiar, theres lots of us here that are really mad about our pediatricians saying they'll grow out of it. But you are on the road to fixing it. I remember crying too when I saw the photos of the babies with the helmets. If you do go with a helmet, and it sounds like you will, the helmets are so easily adjusted to by the kids. I think it is harder on us as parents. Your daughter will probably be fine with the helmet, I didn't believe that either when we first got my son's helmet, but I was completely amazed at how well he did with it. Your daughter will come to realize that the helmet is part of her, and she'll miss not having it. It's your child, and as a parent, you want to do everything possible to give them every opportunity in the world. I looked at it that way too, and that helped. I've only been a member of this group a few weeks, but everyone is so nice and helpful, and it's good to talk to other moms who are going through or have been through what you are dealing with. It sounds like you are going for a DOC band with Cranial Tech? Good luck to you, and again welcome to the group, they are a wealth of information and support! Ingrid Brett Plagio 9mo > > > > > > > > > > Hello, > > > > > > > > > > My name is and I have a 2 month old daughter, Amelia, > who > > was > > > > > just diagnosed with torticollis and plagiocephaly by her > > > > pediatrician. > > > > > I am going through all sorts of emotions right now--fear, > > sadness, > > > > > guilt... and I found this group. We are on a waiting list > for > > a PT > > > > > evaluation so that only leads to my frustration because I > want > > help > > > > > for her now. Is there anything that I should be doing > while > > we > > > > wait > > > > > for our eval? Will they tell me at the eval. if we should > > pursue a > > > > > helmet/band? I am just starting to learn about > plagiocephaly. > > Any > > > > > information that anyone can share about this whole process > > would be > > > > > great. > > > > > > > > > > Thanks so much, > > > > > > > > > > Minnesota > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Hello and welcome to the group! What area do you live in and maybe we have another member that can share their treatment story with you. The bands aren't bad at all, most babies don't mind them a bit and they can be so much fun to decorate! The 3-4 month time frame flies by! Natasha > > > > > > > > > > Hello, > > > > > > > > > > My name is and I have a 2 month old daughter, Amelia, > who > > was > > > > > just diagnosed with torticollis and plagiocephaly by her > > > > pediatrician. > > > > > I am going through all sorts of emotions right now--fear, > > sadness, > > > > > guilt... and I found this group. We are on a waiting list > for > > a PT > > > > > evaluation so that only leads to my frustration because I > want > > help > > > > > for her now. Is there anything that I should be doing > while > > we > > > > wait > > > > > for our eval? Will they tell me at the eval. if we should > > pursue a > > > > > helmet/band? I am just starting to learn about > plagiocephaly. > > Any > > > > > information that anyone can share about this whole process > > would be > > > > > great. > > > > > > > > > > Thanks so much, > > > > > > > > > > Minnesota > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Hello and welcome to the group! What area do you live in and maybe we have another member that can share their treatment story with you. The bands aren't bad at all, most babies don't mind them a bit and they can be so much fun to decorate! The 3-4 month time frame flies by! Natasha > > > > > > > > > > Hello, > > > > > > > > > > My name is and I have a 2 month old daughter, Amelia, > who > > was > > > > > just diagnosed with torticollis and plagiocephaly by her > > > > pediatrician. > > > > > I am going through all sorts of emotions right now--fear, > > sadness, > > > > > guilt... and I found this group. We are on a waiting list > for > > a PT > > > > > evaluation so that only leads to my frustration because I > want > > help > > > > > for her now. Is there anything that I should be doing > while > > we > > > > wait > > > > > for our eval? Will they tell me at the eval. if we should > > pursue a > > > > > helmet/band? I am just starting to learn about > plagiocephaly. > > Any > > > > > information that anyone can share about this whole process > > would be > > > > > great. > > > > > > > > > > Thanks so much, > > > > > > > > > > Minnesota > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2005 Report Share Posted November 5, 2005 Hi Tondi, Try to get him into a social skills group, and into a pragmatics group with a speech therapist. In a social skills group, they'll work on social skills; in a pragmatics group, they'll work on social speech -- the social niceties of how to have a conversation. They used video sometimes in one of my son's pragmatics groups. That's what I can think of off the top of my addled brain right now. Liz On Nov 2, 2005, at 9:10 AM, Tondi wrote: > My son, 9 years of age, was diagnosed with ADHD at the age of 4, but > medicine just didn't seem to help for long. We finally switched > doctors a few months ago, and the new doctor has put him thru a bunch > of tests and has determined that he was misdiagnosed. I have done a > bunch of research on AS is the correct diagnosis also. We have just > started to treat him with some different medications and we are seeing > some improvement. Besides medication, what else is there out there to > help AS children? I realize that he may have to be on meds the rest > of his life, but I don't want to do JUST meds either. Eventually he > will be out on his own and I want to equip him with the best skills I > can to make sure he succeeds. Any helpful hints are much appreciated. > > Tondi Hunter (Illinois) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2005 Report Share Posted November 5, 2005 Without knowing it we were severe, too. And worse, we didn't figure it out until Jack was 7 months old. He's 14 months now and almost finished with his helmet and his head is nearly round. I remember being in your shoes and seeing the CT article our ped. gave us to help us learn more and decide what to do. I cried my eyes out. And the day he was fitted too. But it's been worth every second. I'm so glad we did it. Columbia, SC Mom to ack 14 months tort/plagio Hanger helmet since mid-May > > > > Hi Everyone-- > > I am new to this group too. I have a 4 and 1/2 month old daughter > > named Marina. We just came back from our appointment with the > > cranial facial specialist today. I am so angry with our > pediatrician > > and myself for not pursuing this sooner. Marina has had a mishapen > > head since birth and our pediatrician kept telling us that it > would > > go away on its own. He said to wait and see at her 6 month > checkup. > > He wouldn't give us a referral to a specialist until I insisted > that > > I wanted a second opinion NOW. Had to wait two weeks to get in to > > the specialist and here we are. The specialist suggested that she > > would benefit from a doc band as she has had this condition > inutero. > > It could take 3-4 months to treat and at least 3 weeks to get the > > band...I am having mixed emotions about the treatment...I know > that > > it will be best for her in the long run..It's just so hard to > > picture my beautiful baby in the band. The photos of the other > > children make me cry...Any suggestions?? Thanks- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2005 Report Share Posted November 5, 2005 Without knowing it we were severe, too. And worse, we didn't figure it out until Jack was 7 months old. He's 14 months now and almost finished with his helmet and his head is nearly round. I remember being in your shoes and seeing the CT article our ped. gave us to help us learn more and decide what to do. I cried my eyes out. And the day he was fitted too. But it's been worth every second. I'm so glad we did it. Columbia, SC Mom to ack 14 months tort/plagio Hanger helmet since mid-May > > > > Hi Everyone-- > > I am new to this group too. I have a 4 and 1/2 month old daughter > > named Marina. We just came back from our appointment with the > > cranial facial specialist today. I am so angry with our > pediatrician > > and myself for not pursuing this sooner. Marina has had a mishapen > > head since birth and our pediatrician kept telling us that it > would > > go away on its own. He said to wait and see at her 6 month > checkup. > > He wouldn't give us a referral to a specialist until I insisted > that > > I wanted a second opinion NOW. Had to wait two weeks to get in to > > the specialist and here we are. The specialist suggested that she > > would benefit from a doc band as she has had this condition > inutero. > > It could take 3-4 months to treat and at least 3 weeks to get the > > band...I am having mixed emotions about the treatment...I know > that > > it will be best for her in the long run..It's just so hard to > > picture my beautiful baby in the band. The photos of the other > > children make me cry...Any suggestions?? Thanks- > > > Quote Link to comment Share on other sites More sharing options...
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