Guest guest Posted February 8, 2002 Report Share Posted February 8, 2002 Dana, Your heart is definitely in the right place-you want what is best for your daughter and that shows you are great parents looking out for the best interests of your child! Not all parents could go the distance that you have- and might have given up- the fact that you are seeking an alternate route because you know that it will help get things moving is a great effort on your part to get to the bottom of what you can or cannot do for your daughter. Kudos to you for being such a great Mom (and Dad too!). Good luck to you all and please keep us posted on how your appt. goes! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 Tami, Hi and welcome to the group! I just wanted to share with you my experience: was dx with tort at 2 mnths and at 3 mnths I asked my ped to give me her opinion of his head shape. She said it would round out and not to worry. I didn't feel right with this- so I went to Cranial Tech on my own for a free eval. They told me to go home and reposition for a month, to exhaust that route. This told me that they were not just shelling out dx for the band without really being concerned and honest with people. I went back at 4mnths, because it was only getting worse, and after looking at ' 2 day old photo, they also noticed that plagio was evident at birth, since he was squished being almost 10 lbs. At 4 mnth check-up the ped still said she thought it wasn't necessary, but after much consideration, I asked her to give us the referral as we had decided this was our best bet at correction. We are so glad we did. Just wanted to share that so you know that CT actually sent me home the first time, and were not out to scam me. They were always very professional, and courteous, and I would give the CT in Miami rave reviews!!! Good luck in your decision making, it is probably the hardest part to just decide what to do, and go from there, because you are torn between what a Doctor tells you and what your Mommy instinct is telling you. Good luck and keep us all posted with whatever you decide! ' mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 Tami, Welcome to our group! And yes, Cranial tech is known to be VERY honest and straightforward with its prospective clientele. I went to a Cranial Therapies, who also specialize in the DOC band, and although technically both my twins had plagio, they only recommended a DOC band for the one who was severe, with facial assymetry. That was nearly a year ago and I am satisfied with the results of both babies. Good luck on your little one! Jill Ramos, Las Vegas, NV Mommy of Tommy (DOC grad 10/27/01) and Gavin (who has "graduated" from a binkie to a blankie this week) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 Hi All: I just joined the group this week and have appreciated your comments to other e-mails. My daughter Annika is 8 1/2 months old. We have been monitoring her head since her 2 month visit to the pediatrician. With repositioning it has definitely improved. However, within the last month I noticed that the rate of improvement slowed down. I decided it was time for a second opinion. We saw a neurosurgeon this week who told us that Annika had mild to moderate positional plagiocephaly with absolutely no facial asymmetry. The doctor told us about our options (specifically a doc band), but advised us that she did not think it was necessary. She thought that Annika's head would continue to round out although not by very much and would never be 100% perfect. Despite the doctor's opinion, we requested a prescription for the doc band. We have not decided whether to proceed with the band therapy and really feel like we need another opinion. For those of you who have been through this already, can I expect to get an honest and straightforward opinion from Cranial Technologies regarding Annika's condition and whether the band is necessary? Thanks, Tami (mom to Annika) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 For those of you who have been through this already, can I expect to get an honest and straightforward opinion from Cranial Technologies regarding Annika's condition and whether the band is necessary? Tami: Hi & welcome to our group! Glad you have found us. To answer your question about Cranial Tech., yes, you can expect a totally honest answer from them regarding Annika's head shape & whether or not they recommend a DOCband for her. They will not try to " sell " their product if it is not necessary. Do you live near a Cranial Technology clinic? I am glad you had success with repositioning, the older the baby gets, the harder it is to get good success with repositioning, which is probably why Annika has slowed in improvement. Please be sure you keep us updated on your decision. Welcome again Debbie Abby's mom DOCGrad MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 Tami, Welcome to the group - I'm glad you found us. It sounds like you have had some good luck with repositioning and that's great! Maybe you would be willing to share some of your tips and tricks for successful repositioning. I did not use CT, however, I know a whole bunch about them from this group and the general feeling seems to be that you WILL get an honest opinion and evaluation from them. It would be worth a consultation - the ultimate decision will still be yours. It's great that she has no facial assymetry - that was my biggest concern when my daughter was first diagnosed. She was more in the moderate to severe category with facial assymetry and misaligned ears so we didn't think twice before going with the helmet. Good luck with you decision. Soooo many of us here have been exactly where you are right now and it sure can be tough. Let us know what you decide to do - you have our support no matter what your decision is! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2002 Report Share Posted February 14, 2002 In a message dated 2/13/2002 3:34:25 PM Eastern Standard Time, sstiles@... writes: .. We have modified this habit and his head seems to be improving. However, his ears are still not in alignment and one side of his head is still rounder than the other. But people (friends, neighbors) keep asking why we are considering banding – that it isn’t that bad. The torticollis is more noticeable than the plagiocephaly. So, now I am torn about what to do. , I just wanted to let you know that I was just as torn as you are. It was such a difficult decision because family and friends tell you they think your overreacting, its not that bad, etc. To top it off, then you have a Doctor (mine) that tells you its an optical illusion that the ears are misaligned because the tort makes it look that way. Thanks to the urging of this group (a God send!) I started making my own decisions and was in his band a week shy of 5 months. His one ear looked like it was literally sliding off his head, pointing down and more forward. The band has corrected his ear misalignment I would say 90-95%. I think the one ear is just smaller in size, but at least they are in alignment now. A few things I've learned from this experienced group of parents: 1) time is of the essence 2) Take matters into your own hands! Go with your gut instinct. My parents used to be my biggest opposition, saying, C'mon , nobody's head is perfect- feel your mother's head, its bumpy And once we got the band- OOOHHHH, now I see how off his ears are! Even the Doc is so impressed with his head shape, and is constantly complimenting him, even though I could strangle her for not steering me in that direction and even recommending the band! So, listen only to yourselves as parents, you are with your child more and know what's going on. If I had not had this internet group to give me advice, I may be one of those parents saying, start early, I wish I had! The torticollis is more noticeable now, but the plagio can sneak up on you quickly, because even mild tort causes them to favor one side, which both can cause the facial asymmetry. Take advantage of time and experiences from all the parents here, and your decision will come more easily (it was sooooo hard at first, but now I think we really shouldn't have anguished over something that was so right and worked so well to the benefit of our son!). Good luck, God bless, and remember, your not alone here! Most of us have walked that confusing path! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2002 Report Share Posted February 14, 2002 Maybe you would be > willing to share some of your tips and tricks for > successful repositioning. Thank you so much for all of your support. I will definitely keep the group posted on what we decide to do. I feel much better about the options now. As far as repositioning tips, I can only tell you what worked with Annika. I was relentless about giving her tummy time. I did not allow her to lay on her back when she was awake. If she fussed (which she almost always did after about 5 minutes on her tummy), I would pick her up and try to prop her into a semi sitting position. I just kept rotating the positions when she got fussy. Every day I slightly increased the time in each position until she liked spending more time on her tummy. When she was in the car seat, I put a rolled up burp rag to position her head. It also came in handy when there was spit up When she was asleep I always propped her head to the right side. I checked on her so many times during the night to turn her around and readjust the blanket. Now that she is older that is almost impossible to do, but she has gained a preference for sleeping on her side. I hope that helps. I recently learned that there are products you can buy to help with repositioning. I wish I had known that a few months ago. I am going to research those options and I will let you know if I find anything. Tami (mom to Annika) --- marcisch@... wrote: > Tami, > > Welcome to the group - I'm glad you found us. It > sounds like you have had > some good luck with repositioning and that's great! > Maybe you would be > willing to share some of your tips and tricks for > successful repositioning. > > I did not use CT, however, I know a whole bunch > about them from this group > and the general feeling seems to be that you WILL > get an honest opinion and > evaluation from them. It would be worth a > consultation - the ultimate > decision will still be yours. It's great that she > has no facial assymetry - > that was my biggest concern when my daughter was > first diagnosed. She was > more in the moderate to severe category with facial > assymetry and misaligned > ears so we didn't think twice before going with the > helmet. > > Good luck with you decision. Soooo many of us here > have been exactly where > you are right now and it sure can be tough. Let us > know what you decide to do > - you have our support no matter what your decision > is! > > Marci (Mom to ) > Oklahoma > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Niki: Thanks for the welcome. The e-mails have been very reassuring and calming for me. This process is not as scary as I thought it was when I walked out of the neurosurgeon's office. You have also given me encouragement that progress can be made at 9 months of age. Tami (Mom to Annika) --- niki_jay175 <niki_jay175@...> wrote: > Hi Tami and welcome to the group! As you can see by > the amounyt of > responses that you've already received, you have > come to the right > place for info and to vent. I would reitterate what > the other posts > have said about Cranial Technologies and the > DOCband. Even though I > personally have not used them, I have heard > wonderful things about > them. If they feel that Annika doesn't need a band, > then they will > be forthcoming and tell you so. I'm glad you've > found this group and > I hope you stick with us! > > Niki > Kaylie & Danny (STAR grads) > Phila., PA > > > > > Hi All: > > > > I just joined the group this week and have > appreciated > > your comments to other e-mails. My daughter > Annika is > > 8 1/2 months old. We have been monitoring her head > > since her 2 month visit to the pediatrician. With > > repositioning it has definitely improved. > However, > > within the last month I noticed that the rate of > > improvement slowed down. I decided it was time for > a > > second opinion. > > > > We saw a neurosurgeon this week who told us that > > Annika had mild to moderate positional > plagiocephaly > > with absolutely no facial asymmetry. The doctor > told > > us about our options (specifically a doc band), > but > > advised us that she did not think it was > necessary. > > She thought that Annika's head would continue to > round > > out although not by very much and would never be > 100% > > perfect. > > > > Despite the doctor's opinion, we requested a > > prescription for the doc band. We have not decided > > whether to proceed with the band therapy and > really > > feel like we need another opinion. > > > > For those of you who have been through this > already, > > can I expect to get an honest and straightforward > > opinion from Cranial Technologies regarding > Annika's > > condition and whether the band is necessary? > > > > Thanks, > > Tami (mom to Annika) > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Hey Tracie in Maine, Have been watching your posts and been wondering just what part of Maine you are from. I spent the first 40 years of my life in Maine and miss it so much. I know that the winters are hard but the fall makes up for it. I hope that you find the right dr. It is so important for the two of you to be on the same page. Good luck from another Maniac. Judith Ann in Az. tracierae143 <tracierae@...> wrote: Hi, Well I got up the courage to request a second opinion from a different rheumy from my primary care doctor who I would also like to switch, but I do not want to do too much to fast. Has anyone else been down this road before? I am kind of scared that this new rheumy will totally blow me off, but he is supposed to be the best in the area and comes highly recommended. Since my doctors are not interested in attending to any sort of pain management plan I have to start somewhere, but I am not sure if this is the right step. I hope so. If anyone thinks another approach would be better, I am all ears so to speak!! Thanks, Tracie in Howland Quote Link to comment Share on other sites More sharing options...
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