Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 hi camy.. i just found out my baby has torticollis too.. i noticed he was starting to get a flat spot and kept trying to get him to sleep on the other side of his head because he just kept turning his head the same way to sleep... and he wouldn't.. so i got online and started researching flat heads repositioning etc... which is when i suspected torticollis... he was almost 6 weeks old at the time... i called the pediatrician to get him in to check it out and they blew me off... so i found a new doctor immediately who sent him for x-rays we are supposed to start physical therapy as soon as those xrays come back... i have only been repositioning him for a week in the meantime.. which is definately hard due to him favoring the right side... but when i use the swing i have been putting foam peices next to his head, and in the bouncer i was using a neck donut with rolled receiving blackets along the side to keep his head straight... his flat spot is already not as bad.. at least that is what his grandma says... i also ordered the boppy noggin nest... can't wait for that to come then i won't worry so much about using the stroller and swing with that.... i am new to this whole thing too.. very anxious for my baby to start therapy... i was also upset that i didn't notice a problem sooner... i didn't feel so bad when the new doctor we went to told me he had triplets and one of them had torticollis and he didn't notice.. but rather his wife did.. angelique > > Hello, > > I am new here. My 10 week old son was diagnosed with torticollis at hi > 2 month checkup. I feel so bad that I did not catch this. As a result > he has a flat spot on the right side of his head. We ahve been going > ot PT for 2 weeks now for teh torticollis > > Our pediatrician is having us see a neurosurgeon in 3 weeks which is > very scary to me. > > As anyone had luck with re-positioning? > > Thank you, > > Camy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 Hi Camy, Welcome to the group! There is a smaller group of us who has had success with repositioning. There are progress photos of our repo babies in the Photos/Before and After/Repositioned Album, if you'd like to take a look (my daughter's name is Remy.) Torticollis unfortunately does a good job of undermining repo efforts, because the range of motion of the head is hampered. However, 10 weeks old is very young, and very young babies can have dramatic success with repo. How would you say your repo is coming along so far? Are you able to manage head position at night and at naptime? We have a wealth of repo information here at the site to help you not only with repo, but with making and informed decision about when to repo and when to band. Have you checked out the Files/Repo Headquarters section of our group site? Why don't you take a photo of your baby's head from the top down, showing the flatness, right now, and then 3 weeks from now right before you go to the neuro... then you would have a progress photo to discuss with him showing how well (or not well) repo is working for your baby. Please let me know if I can be of any help at all with your repo efforts. Bouncie seats can be notorious contributors to flatness, but they are certainly hard to live without. An interesting alternative to the bouncie seat is the Bumbo Baby seat www.bumbobabyseat.com . Also getting baby up out of the stroller, or car seat carrier, and into a front carrier can help as well. www.babybjorn.com . Take care, Christie (Mom to Repo'd Remy) > > Hello, > > I am new here. My 10 week old son was diagnosed with torticollis at hi > 2 month checkup. I feel so bad that I did not catch this. As a result > he has a flat spot on the right side of his head. We ahve been going > ot PT for 2 weeks now for teh torticollis > > Our pediatrician is having us see a neurosurgeon in 3 weeks which is > very scary to me. > > As anyone had luck with re-positioning? > > Thank you, > > Camy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 Welcome to the forum...Its good to hear from someone positive about working with BPES. Thank you for sharing a little bit of your story with us... blepharophimosis From: twistwoodranch@...Date: Mon, 26 Nov 2007 23:45:24 +0000Subject: blepharophimosis New to Forum Hello Everyone! I am so glad to find this forum. I am adult with BPES and was born in 1963. Back then there were not many treatments. I want new parents with BPES children to know that there is hope. I grew up normal, happy and now am married, have my education(I am a social worker) and we are getting ready to adopt a child. I know my mom worried that I would not grow up like the rest of the children in our neighborhood but I did and I think that by having BPES I became stronger, more independent and better at championing the rights of individuals who need my voice. I am interested in hearing from others with BPES and families that need encouragement. My email is Twistwoodranch or Twistwoodranchhotmail feel free to use either. Thanks, You keep typing, we keep giving. Download Messenger and join the i’m Initiative now. Join in! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2010 Report Share Posted July 21, 2010 ........... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2010 Report Share Posted July 21, 2010 HI , Welcome! I am really sorry to hear that you have been diagnosed with these autoimmune diseases. When did you receive the diagnosis? Many of us have the symptoms of the disease, but take a few years to actually end up with a diagnosis, and that is always news that is so hard to hear. But at least it is an answer to what is going on in our body. You reacted quite fast to your implants. I am pretty certain, based on all of the years of collected experiences we've gathered on our support groups, that your implants are the cause of your illness. It is just too coincidental....your symptoms leading to the diagnosis are probably like all of the typical symptoms we see in women after getting implanted. Even though you didn't name them, I can probably tell you what they are... many of the ones listed on our homepage, right? As for testing to prove the implant are the culprit, those tests really don't exist. I wish they did! It would make our case against the manufacturers of implants very clear cut! Having said that, there is a silicone antibody test that some have used (not all labs offer this test). It will give you some indication that your body is reacting to silicone. This test has actually been discredited, but that is no surprise...the manufacturers have seen to it that they remain absolved of any finger pointing. They have deep pockets. So most of us have drawn the conclusions of the implants being very much involved based on shared illnesses, symptoms, and events. Intuition has had to play a large part because, as you have found out, the doctors aren't of much help. There is too much political correctedness and wrangling going on with the medical field for them to be of much help. We have had much more success with alternative minded docs and naturopaths, though there are still some mysteries in how to get totally better. That is why this group was formed: to help us gather our intelligence and ability to figure out how to help ourselves collectively. And we've had great success. We've seen women explanted and go on to live healthy, happy, prosperous lives. It takes alot of hard work and tenacity, but it can be done. We use a natural approach to healing and detoxification. But it begins with getting a proper explant done. I have had my implants out for over 12 years now. It took me 4 years to get better. I had a diagnosed autoimmune thyroid disease. At my last test, I had no antibodies to my thyroid and the doctor told me " Don't worry about it anymore. " That was great news! So, have hope. I am a living testimony to the fact that you can get better with detoxification and healthy eating and learning to listen to your body. We will help you as much as we can....just stay positive about your future. There is hope. Let us know how we can help. Patty > > Hello I am new to this forum and have found you after being recently diagnosed with MS, Lupus, and other autoimmune diseases. I had saline breast implants put in a little over a year ago and have become symptomatic since the surgery. Three months ago I became very ill, have seen several specialists, none which have helped as of yet. I have a positive ANA, and a high sed rate. Three days ago I noticed that one of my breasts is smaller than the other, and therefore suspect a rupture or leak of some kind. I have talked to a few other woman who tend to think this is what may be making me sick. Have any of you experienced this before? If so, were there any tests to show that it was/is your implants making you sick? Did you feel better after explant surgery? I am lost and am looking for answers. > > Thank you! > > > Quote Link to comment Share on other sites More sharing options...
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