Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 Amy, Wow - that really does put you in a difficult position. Do you SEE the improvement that the neuro pointed out? Are you comfortable with the progress that has occurred thus far (if you have even noticed any)? Do not listen to the " hair will cover it up line " - you have to know in your heart that you can live with whatever decision you make. Nine months is not the optimal time to start - we started at nine months and I regret our late start to this day. Had we started earlier I am convinced that would have seen MUCH more improvement. If your gut instinct tells you that you need a helmet then don't wait. Insist on the getting a perscription ASAP. If you are on the fence and feel like you HAVE seen good improvement and are comfortable with the improvement then maybe the band isn't right for you. Either way - you know you will have our support!! Let us know what you decide to do. Marci (Mom to ) Oklahoma > We saw the neurologist last week and after he measured Jordans head > and went over all the notes, he thinks we should wait on getting the > helmet. Since we have had improvement in the past 6 weeks, he thinks > that she will be fine. He joked that if she had hair no one would > notice. She is a baldy at 6 months old. Now i really am confused! He > wants to see her back at 9 months.Isn't that too late? HELP! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 Oh gees amy what a tough spot to be in-although some have started helmet therapy at the 9 month mark I wouldn't wait that long if you didn't have to. How much improvement have you seen over the last few weeks. DO you have before and after pictures we could look at??? I don't envy you having to be in this position and make this decision but I am sure if you follow your heart and your mommy instincts you will make the best decision for all involved. Maybe instead of waiting until 9 months you could follow up in 1 month and if you haven't seen significant improvement by then you could make a better decision at that point. I wish you the best and wish I could offer more clear cut answers but you will know what is right. Let us know what you decide and good luck. Beck Mom to banded 3.26.01 Memphis, TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 Amy, I started looking into a helmet/band for Nina when she was 6 months old. By the time we decided to do it, she was 7 months, and then we changed insurance and had to wait so by the time she is banded, she will be 8 months (we were casted Monday and will be fit next week). I have continued to see improvement in her head shape (the high spots are softening) and her facial assymmetries are improved, however, the flat spot is really not rounding significantly and her ears are still not aligned very well. You mentioned the neuro took measurements - what were they? Maybe waiting a little bit will be ok but during that time, figure out what you want, where you will go for the band/helmut, call your insurance, etc. That way, you will be totally ready to go if she needs it. LeAnn > We saw the neurologist last week and after he measured Jordans head > and went over all the notes, he thinks we should wait on getting the > helmet. Since we have had improvement in the past 6 weeks, he thinks > that she will be fine. He joked that if she had hair no one would > notice. She is a baldy at 6 months old. Now i really am confused! He > wants to see her back at 9 months.Isn't that too late? HELP! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 Amy: If repositioning has been helping, I think that is great. BUT, I would strongly recommend that you check into your local helmet program. If you have a DOC Band available to you, you can probably consider waiting until 9 months. If it is a locally made helmet, and it is a "passive" design, you might want to get started right away. Passive helmets rely strictly on growth, where a DOC Band relies on growth, but also supplies a gentle pressure on prominent areas as well. Just remember that in any case, the sooner you get started the better. You can find a list of questions to ask your doctor/orthotist at www.plagiocephaly.org/support/questions.htm Good luck with your decision, and please keep us posted. Kendra in CanadaFor more plagio info, go towww.plagiocephaly.org/support... ----- Original Message ----- From: Amy Plagiocephaly Sent: Wednesday, May 23, 2001 7:50 AM Subject: What do I do? We saw the neurologist last week and after he measured Jordans head and went over all the notes, he thinks we should wait on getting the helmet. Since we have had improvement in the past 6 weeks, he thinks that she will be fine. He joked that if she had hair no one would notice. She is a baldy at 6 months old. Now i really am confused! He wants to see her back at 9 months.Isn't that too late? HELP!For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 OH , I love the name Teegan!! I am so sorry to hear of all of her problems. It just breaks my heart that you have to fight so hard to get her proper care! Keep you chin up and keep on truckin'! Sounds like your doing a fine job! Is Teegan's head long or just flat on the sides? Dustie > Hello... > > My name is and I have a daughter who will turn 1 at the end of > March. She was born 3 months early and has had many complications... > struggles in her short life. My daughter Teegan is developmentally > delayed and has very poor motor skills. She isn't able to hold > herself up at all, doesn't roll, sit, or much else. She can hold her > head up a bit, but not very well if she's on her tummy, only if you > are holding her. Teegan is on a feeding tube for 20 hours out of the > day, so much of the time she is restricted to laying in her boppy > pillow... or is held by me or her dad. She has severe reflux so she > sleeps elevated a bit, usually sleeping in her boppy... > > She prefers to sleep on her side, either one... but doesn't usually > fall asleep on her back, and never on her stomache. Her PT and OT > people refer to the flatness on the sides of her head... > > I guess I'm wondering if this is considered plagiocephaly? And what > do I do... all of my daughter's life I have had to scream and shout > and demand to get her proper care, testing, procedures... So, I'm > concerned that this is being ignored and I want to do what I can to > help the situation before it gets worse. > > Thanks so much for listening and offering any advice you may have... > > it is much appreciated, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 H, , Welcome to the group! I am so sorry to hear how rough your daughter has had it. It does sound like she may have plagio. She is not too old to band. Age corrected she is only 9 months,right? Are you near a Cranial Tech office? They will give you a free evaluation and a very honest opinon. You can check here to see if one is near you: http://www.cranialtech.com/ClinicLocations/clinics.html Good luck and please keep us posted. > Hello... > > My name is and I have a daughter who will turn 1 at the end of > March. She was born 3 months early and has had many complications... > struggles in her short life. My daughter Teegan is developmentally > delayed and has very poor motor skills. She isn't able to hold > herself up at all, doesn't roll, sit, or much else. She can hold her > head up a bit, but not very well if she's on her tummy, only if you > are holding her. Teegan is on a feeding tube for 20 hours out of the > day, so much of the time she is restricted to laying in her boppy > pillow... or is held by me or her dad. She has severe reflux so she > sleeps elevated a bit, usually sleeping in her boppy... > > She prefers to sleep on her side, either one... but doesn't usually > fall asleep on her back, and never on her stomache. Her PT and OT > people refer to the flatness on the sides of her head... > > I guess I'm wondering if this is considered plagiocephaly? And what > do I do... all of my daughter's life I have had to scream and shout > and demand to get her proper care, testing, procedures... So, I'm > concerned that this is being ignored and I want to do what I can to > help the situation before it gets worse. > > Thanks so much for listening and offering any advice you may have... > > it is much appreciated, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 > She prefers to sleep on her side, either one... but doesn't usually > fall asleep on her back, and never on her stomache. Her PT and OT > people refer to the flatness on the sides of her head... > > I guess I'm wondering if this is considered plagiocephaly? - Sounds like scaphocephaly, which is common in preemies. There is a picture of a scaphy headshape at http://www.cranialtech.com/Treatment/before.html You'll have to scroll down a bit. Is this what you mean? I know I have seen other pics, but can't find them! Duh! Sorry to hear Teegan has health issues. That reflux is a real pain. Both my kids had it. My youngest had apnea from it. At first we thought he might need surgery to correct it, but luckily he outgrew it. Dane's mom DOC Grad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 , I just wanted to say welcome to the group. You have had a really rough past year. I admire you for advocating for your daughter’s care and you deserve a big pat on the back!!! (and a long weekend at a spaJ). The other posts have some great information to get you started. You’re already in the right place by contacting this group. I’m new to the group and everyone has been so helpful. Please continue to keep in touch!!! Where are you located? Maybe there’s someone in your area that can recommend a place or doc to help you? & JD (DOCband since 2/26) TX -----Original Message----- From: [mailto:glittergirl_31473@...] Sent: Friday, March 07, 2003 9:38 AM Plagiocephaly Subject: What do I do? Hello... My name is and I have a daughter who will turn 1 at the end of March. She was born 3 months early and has had many complications... struggles in her short life. My daughter Teegan is developmentally delayed and has very poor motor skills. She isn't able to hold herself up at all, doesn't roll, sit, or much else. She can hold her head up a bit, but not very well if she's on her tummy, only if you are holding her. Teegan is on a feeding tube for 20 hours out of the day, so much of the time she is restricted to laying in her boppy pillow... or is held by me or her dad. She has severe reflux so she sleeps elevated a bit, usually sleeping in her boppy... She prefers to sleep on her side, either one... but doesn't usually fall asleep on her back, and never on her stomache. Her PT and OT people refer to the flatness on the sides of her head... I guess I'm wondering if this is considered plagiocephaly? And what do I do... all of my daughter's life I have had to scream and shout and demand to get her proper care, testing, procedures... So, I'm concerned that this is being ignored and I want to do what I can to help the situation before it gets worse. Thanks so much for listening and offering any advice you may have... it is much appreciated, For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 Hi & welcome to our group: Glad you have found us. Sounds like Teegan has had a rough go of it so young in life She's very fortunate to have such a strong & smart mommy to get her thru this. It does sound like she may have plagio.. Is she flat on both sides, one side, back? She's still plenty young enough to get correction from a band if you feel she would benefit from one. You can see lots of different head shapes at www.plagiocephaly.org maybe you'll see Teegans there. I'd ask your ped. for his opinion, although many are " oh don't worry, it'll round out on it's own " ...but that's a good place to start. Good luck..keep us posted please. Debbie Abby's mom DOCGrad MI > > > Hello... > > > > My name is and I have a daughter who will turn 1 at the end > of > > March. She was born 3 months early and has had many > complications... > > struggles in her short life. My daughter Teegan is developmentally > > delayed and has very poor motor skills. She isn't able to hold > > herself up at all, doesn't roll, sit, or much else. She can hold > her > > head up a bit, but not very well if she's on her tummy, only if you > > are holding her. Teegan is on a feeding tube for 20 hours out of > the > > day, so much of the time she is restricted to laying in her boppy > > pillow... or is held by me or her dad. She has severe reflux so she > > sleeps elevated a bit, usually sleeping in her boppy... > > > > She prefers to sleep on her side, either one... but doesn't usually > > fall asleep on her back, and never on her stomache. Her PT and OT > > people refer to the flatness on the sides of her head... > > > > I guess I'm wondering if this is considered plagiocephaly? And what > > do I do... all of my daughter's life I have had to scream and shout > > and demand to get her proper care, testing, procedures... So, I'm > > concerned that this is being ignored and I want to do what I can to > > help the situation before it gets worse. > > > > Thanks so much for listening and offering any advice you may have... > > > > it is much appreciated, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2003 Report Share Posted March 8, 2003 Hi , My little girl was a 28 week preemie. She is 15 months now, 12 corrected, and we just got a band. has had some developmental delays too and is now just starting to catch up. She also had reflux and we kept her sleeping in a bouncy chair for a while when she was quite young and she would start to bring everything up whenever she laid in her crib. Her reflux has now resolved. Anyway, 's head is long, but she also has a flat side. I hope that there is somewhere near you where you can get Teegan checked out and determine if she needs treatment. Are you a member of the preemie board? I post there but not a lot lately. Sounds like you are a great Mom and a wonderful advocate for your little girl!! Janine Starband 2/28/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2003 Report Share Posted March 8, 2003 she could have scaphocephaly, common in premies. jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 Hi : I love the name Teegan - so beautiful! It appears that the last months have been very frustrating - I'm so sorry that you are not getting the treatment that you deserve. Unfortunately, this is a common problem, and I don't understand why it is this way. It's just wrong. I know that the other members have mentioned things for the plagio, but I wanted to mention something to you to help you with your situation. Here in Minnesota there is an organization called " A Chance to Grow " , and they work with brain-injured children. (At A Chance to Grow they do not worry about how the injury happened - whether due to an actual physical or chemical injury, or if it is caused by chromosomal or prematurity). I know they have an excellent program to help youngsters who are developmentally delayed reach their fullest potential. I know they have a website: just plug in A Chance To Grow and Minnesota, and maybe they can help you find a place near you. (If you cannot find it and want to read about it, please contact me at my email - I think you can get it through the moderator or owner - and I will be happy to find that number/address/website for you). The reason I know about this is a friend of mine took her daughter there and was really pleased with the staff and the philosophy, and it gave her alot of hope - as well as practical information and things she could start doing at home. Check it out, they might have some info you are looking for. If you choose not to, that's ok to. Whatever is best for you. Also, check out a book called " Wake up, Rhonda " . It tells the story of a brain-injured child and the progress that they were able to make with her. Good luck, and I wish you all the best with your beautiful daughter. Kind regards, , Rhiannon's mom > Hello... > > My name is and I have a daughter who will turn 1 at the end of > March. She was born 3 months early and has had many complications... > struggles in her short life. My daughter Teegan is developmentally > delayed and has very poor motor skills. She isn't able to hold > herself up at all, doesn't roll, sit, or much else. She can hold her > head up a bit, but not very well if she's on her tummy, only if you > are holding her. Teegan is on a feeding tube for 20 hours out of the > day, so much of the time she is restricted to laying in her boppy > pillow... or is held by me or her dad. She has severe reflux so she > sleeps elevated a bit, usually sleeping in her boppy... > > She prefers to sleep on her side, either one... but doesn't usually > fall asleep on her back, and never on her stomache. Her PT and OT > people refer to the flatness on the sides of her head... > > I guess I'm wondering if this is considered plagiocephaly? And what > do I do... all of my daughter's life I have had to scream and shout > and demand to get her proper care, testing, procedures... So, I'm > concerned that this is being ignored and I want to do what I can to > help the situation before it gets worse. > > Thanks so much for listening and offering any advice you may have... > > it is much appreciated, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hello everyone. I am a lurker here at this site. Let me tell you a bit about me. I have had MS now for 48 years. I got it when I was 13. I've researched the MS for well over years. I had a lot of my questions answered with doing all this work. I have been retired (if that is what you want to call it) since 1984. I have slowly gone down hill for many years. I am pretty much apt bound now after all these years. I live about 80 miles from Mpls and my doctors are there. I am about 2 & 1/2 hour drive from the Mayo Clinic in Rochester Mn. and another hour from Dr. in LaCrosse Wisconsin. I want to go on the LDN but I am not sure if I should try Mayo. I can have my Internist make a referral call to either place. I do know that I could get the LDN from Dr. but I am not sure if I can at the Mayo Clinic. There are at least 15 neuros there but I am at a lose as to who to pick for my doctor. Any advice for me would be welcomed. I am going to Mpls on Thursday this week so I need to pick one by that time. Any and all ideas will be welcomed. Have a nice day all. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 My son had mild to moderate plagio/bracy. Everyone told me I was absolutely foolish for getting him banded. It was as if I was the only one that saw him disfigured. NOW that he is 7 weeks into his treatment, not only my hubby but family & friends cannot believe the difference! His head is almost perfect! I didn’t want to think about my son being tormented in school by kids because he had a flat head. My husband told me not to do it either, UHC denied, I paid out of pocket and am in the process of writing my appeal. My son’s future self-esteem and possible medical issues are what lead me to my decision and I couldn’t be happier. From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of babykkjr Sent: Tuesday, September 27, 2005 1:06 PM Plagiocephaly Subject: What do I do? Well, I got approved from insurance for some of the cost. But now I have a HUGE problem.- My husband is 100% against banding our son. He claims he is fine and doesn't need a band. Now what do I do? Yes my son is now severe and its not like people off the street would be able to tell BUT I can tell and I gave birth to him. Isn't it my responsibility to do everything I can do to help my son regardless? Yes he is mild but I know what I have sufferedwith jaw issues and I know the teasing I've received in life because I'm not perfect- even if I can make things a little bit better shouldn't I? Why can't my husband see this and support this? What do I do? I am so torn Quote Link to comment Share on other sites More sharing options...
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