Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 hi everyone. i am so overwhelmed. i have twins jacob & issac(14mnths) jacob has his doc and is finished with his 4 months. she is recommending another, which my husband doesnt think he needs! i think he doesnt want to fight the insur again. we are still fighting to get issac's first doc.she also says we might look into getting an orthopedic surgeon to look at them, we have an appointment with an oral and maxillofacial dr next month, and now i think we are going to start looking for a new nuerosurgeon because they never return calls and are just to busy for us. not only this but jacob's tort therapy isnt improving. they are talking about sending us to look into a tot collar, botox and/or surgery, just to see what are options are. and we have never had xrays on them! my therapist about fell down when i told her that. you think she would have known. so now we have to see about doing xrays that should have been done months ago.i am just about to have a panic attack.i really feel like i dropped the ball with all this but i just thought the dr's knew what they were doing. my heart is just braking that so much time has gone by and not much seems to be done. thanks for listening, any advise would be great. misty~ mommy to jacob & issac fort worth, texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Misty, First {{BIG HUGS}} Now you need a game plan : ) Don't panic. Take it all in babysteps. One thing at a time. Don't overwhelm yourself so that you don't know where to start. 1. DOC Band - as I read it you and the CT folks do not think is done. Where did he start (measurements or pics if you have them) and where is he now? Is he greater than 6 mm on any of the measurements or does he have facial assymetry or very noticable flat spots? With boys you need to consider short hair cuts. Girls are lucky they can grow their hair long and hide some flat spots. Why does your husband say you are done - is it strictly insurance? 2. Why do they want you to see the orthopedic surgeon? Definitely look into another dr if this one won't even return calls. I would keep the appt until you know you have another at an earlier date. 3. Tort - ugh - it's so hard sometimes. I'm assuming you ped can write the rx for the xrays. Call the office to set up an appt to discuss. Let him know PT is not happy with progress and thinks xrays are needed asap. Have you been to the tort board? (I don't want to get rid of you but they have a wealth of info too). The TOT collar really isn't that bad - it's noninvasive, like the DOC band. Here's a link ... Torticolliskids/ 4. You did not drop the ball. Like you said the dr and pt should have been discussing this. Now you know and you can act on the info. Take a deep breathe - now go : ) Please keep us posted even if it just to vent on how hard it is to get an appt or a call back. {{more hugs}} mom to na DOC Grad SC > hi everyone. i am so overwhelmed. i have twins jacob & issac (14mnths) > jacob has his doc and is finished with his 4 months. she is > recommending another, which my husband doesnt think he needs! i > think he doesnt want to fight the insur again. we are still fighting > to get issac's first doc.she also says we might look into getting an > orthopedic surgeon to look at them, we have an appointment with an > oral and maxillofacial dr next month, and now i think we are going > to start looking for a new nuerosurgeon because they never return > calls and are just to busy for us. not only this but jacob's tort > therapy isnt improving. they are talking about sending us to look > into a tot collar, botox and/or surgery, just to see what are > options are. and we have never had xrays on them! my therapist about > fell down when i told her that. you think she would have known. so > now we have to see about doing xrays that should have been done > months ago.i am just about to have a panic attack.i really feel like > i dropped the ball with all this but i just thought the dr's knew > what they were doing. my heart is just braking that so much time has > gone by and not much seems to be done. thanks for listening, any > advise would be great. > > misty~ mommy to jacob & issac > fort worth, texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Hi Misty, First I think moms with twins should get an award . It's hard enough having one. I know how frustrating it can be having all this on your mind, but be strong and hang in there. I'll tell you what I was told when I found out that may have a congenital defect of the optic nerve, had issues with Tort, and now a Brachy head shape and soon to be DOCbanded. was born to me for a reason. No matter what kind of problems she might have I will lover her no matter what. I will do anything I can to help her. So when you feel overwhelmed by all that is going on, just remember you are the perfect mommy for your twins. You are already making sure they receave the medical attention they need. Like all mommys you want to do what you can to make it all better. (mom to S., CA soon to be banded) > hi everyone. i am so overwhelmed. i have twins jacob & issac (14mnths) > jacob has his doc and is finished with his 4 months. she is > recommending another, which my husband doesnt think he needs! i > think he doesnt want to fight the insur again. we are still fighting > to get issac's first doc.she also says we might look into getting an > orthopedic surgeon to look at them, we have an appointment with an > oral and maxillofacial dr next month, and now i think we are going > to start looking for a new nuerosurgeon because they never return > calls and are just to busy for us. not only this but jacob's tort > therapy isnt improving. they are talking about sending us to look > into a tot collar, botox and/or surgery, just to see what are > options are. and we have never had xrays on them! my therapist about > fell down when i told her that. you think she would have known. so > now we have to see about doing xrays that should have been done > months ago.i am just about to have a panic attack.i really feel like > i dropped the ball with all this but i just thought the dr's knew > what they were doing. my heart is just braking that so much time has > gone by and not much seems to be done. thanks for listening, any > advise would be great. > > misty~ mommy to jacob & issac > fort worth, texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Hello Misty I just wanted to tell you that you have NOT dropped the ball at all. We all trust in our docs to do the right thing, and sometimes they do not. This is not your fault at all. I'm no expert in this, but I would think that with cranio 's headshape would have worsened even with the DOCband. Or atleast not gotton much better. Like I said, I am not expert in this. I totally second 's reply in taking one step at a time. Once you have the tests out of the way, you can think about that second band. Look at and figure out if you are happy with his headshape the way it is now. Let us know how everything goes. Sandy Willow's Mom Torticollis resolved Cranio Germany Grad > hi everyone. i am so overwhelmed. i have twins jacob & issac (14mnths) > jacob has his doc and is finished with his 4 months. she is > recommending another, which my husband doesnt think he needs! i > think he doesnt want to fight the insur again. we are still fighting > to get issac's first doc.she also says we might look into getting an > orthopedic surgeon to look at them, we have an appointment with an > oral and maxillofacial dr next month, and now i think we are going > to start looking for a new nuerosurgeon because they never return > calls and are just to busy for us. not only this but jacob's tort > therapy isnt improving. they are talking about sending us to look > into a tot collar, botox and/or surgery, just to see what are > options are. and we have never had xrays on them! my therapist about > fell down when i told her that. you think she would have known. so > now we have to see about doing xrays that should have been done > months ago.i am just about to have a panic attack.i really feel like > i dropped the ball with all this but i just thought the dr's knew > what they were doing. my heart is just braking that so much time has > gone by and not much seems to be done. thanks for listening, any > advise would be great. > > misty~ mommy to jacob & issac > fort worth, texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 HI Misty, I see you got some great replies already, but I did want to add my experience with the DOCband. My Hannah got her third DOCBand at 15 mos(pics in the before and after section) and saw great results even at her age. If CT is suggesting another, than I'd go for it. We've had members here be told by CT that their baby didn't need a helmet, so CT is known for being very honest in their evaluations. My daughter didn't have tort, but I'm thinking if your son's tort is still a problem that it would be another reason to get him into another band. Please keep us updated. , mom to Hannah, DOCgrad 7/29 Cape Cod, Ma > hi everyone. i am so overwhelmed. i have twins jacob & issac (14mnths) > jacob has his doc and is finished with his 4 months. she is > recommending another, which my husband doesnt think he needs! i > think he doesnt want to fight the insur again. we are still fighting > to get issac's first doc.she also says we might look into getting an > orthopedic surgeon to look at them, we have an appointment with an > oral and maxillofacial dr next month, and now i think we are going > to start looking for a new nuerosurgeon because they never return > calls and are just to busy for us. not only this but jacob's tort > therapy isnt improving. they are talking about sending us to look > into a tot collar, botox and/or surgery, just to see what are > options are. and we have never had xrays on them! my therapist about > fell down when i told her that. you think she would have known. so > now we have to see about doing xrays that should have been done > months ago.i am just about to have a panic attack.i really feel like > i dropped the ball with all this but i just thought the dr's knew > what they were doing. my heart is just braking that so much time has > gone by and not much seems to be done. thanks for listening, any > advise would be great. > > misty~ mommy to jacob & issac > fort worth, texas Quote Link to comment Share on other sites More sharing options...
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