Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 , Sorry, forgot to say that our neuro was useless, we taught him more than anything (he should have paid us!). He gave us no direction whatsover. Our group of specialists included: 1) Cranial Tech- for weekly check-ups on band 2) Physical Therapist- for tort stretches 3) Pediatrician- for referral 4) Plagio and Tort group- for all knowledge, advice and support 5) Mom and Dad- for more pt at home and band care! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 You have been so helpful. Right now I am freaking out because I called her ped. to see who would do the checks on Grace and her progress and they acted like I was an idiot. They said I should be seeing an neurologist and wondered how I got the helmet in the first place? The ped. is the one who sent us to the PT who then took us to the maker of the helmet who got the referral from our ped. The ped. (it is his nurse) is acting like this whole thing is a big joke and I feel like it is a pretty big thing to be going and putting her in this helmet tomorrow. I just feel like crying. I thought the guy that made the helmet was just an orthotic person. So he will check her progress and set up follow up appts? I feel so in the dark about something that seems so important. Thanks and Gracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 , you have no idea how much you have helped me already. I just sent a message out regarding my frustrations. Is the man who made the helmet the cranial tech? My doctors nurse is telling me that I should be seeing a neurologist which we have never seen and she is getting her helmet tomorrow! I don't know what to do I feel like just crying. I feel like nobody is paying attention to how important this is and Graces well being. We are taking her for PT tomorrow I took her for a massage today and she was so upset. Its seems like the more work we do on her tort the more determined she is to turn the head the other way. I did join the tort group which has been very helpful. Dealing with both at once is hard (plagio and tort) just when I start focusing on one I feel like I should be focusing on the other. So do you think that if she has not seen an neurologist I should not worry about going to one just let the cranial tech do his thing? Does the ped. have anything to do with this>? Right now I feel like just telling him to go and jump in a lake for all the help he has given me! Ok Thanks for listening! and Gracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 Hello I am a new member to the group and I am about going crazy trying to figure this whole thing out and how to deal with! My baby Grace is 31/2 months old and was diagnoses with torticollis and plagiocephaly when she was aobut 1 month old. At 3 months the pediatrician decided that she should go to physical therapy for the torticollis and the also thought that due to the drift of her head from the condition she should be fitted for a helmet and begin helmet therapy. We went almost two weeks ago to have Grace fitted for her helmet and we are going to be going to get it tomorrow. It has been so confusing because nobody has really talked to us about who will see her for her checks or the length of time she will have to wear it or anything. I have been doing so much research on the topic and I keep reading that she should be seeing a neurologist for this?? We only have our pediatirican and the man who made her the helmet? Any advice and support would be so helpful with the situation I just want to do what it takes to help Grace. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 , I just responded to something you wrote earlier, so I think I touched on some things like, who the helmet maker is (If the company is not called Cranial Tech, my guess it was a local orthotist that made the helmet). Why is the nurse telling you what you should be doing and not the ped? Ask your ped what you should do, if he/she recommends a neuro (mine did, and although he was worthless in my mind, he did take measurements of his head, check his vision, etc- all things my ped did too). I know exactly what you mean, just when you think your working with the tort, you need to work with the plagio not getting worse and it is so frustrating and confusing at first when your trying to figure out what holds, how to lay them down, etc. That's why the band was a huge relief, because it was essentially working on the plagio for us, and I wasn't a basketcase with the daycare ladies, like, why is he on his flat side!!! They could barely understand the tort (but I printed out holds, explained it, etc.) and they did ok with that but adding the plagio confused them. It is tough working on the tort, they seem so determined to look the favored way! Tummy time (which they hate at first) is very helpful in strengthening the neck muscles. You can order the book "Torticollis:Differential Diagnosis and Treatment" by Karmel-Ross through & Noble online. It shows various stretching exercises and explains tort better. I will attach a great link that shows holds/stretches. It is a constant battle in the beginning, but as you stretch that muscle out it will get easier. The younger they are, the better chance you have of incorporating good stretching (when they get older they can squirm and run more!). We did a lot of good stretches while he was conked out. Have your pt really show you some good techniques to do at home. Like I said, its a daily battle, and you have to continue with pt everyday at home as much as possible. Try doing some light massage at home, around the neck area affected, and see if it helps a little more to be in the comfort of home. Do it when your baby is sleepy, or at least calm, so its not a wrestling match. I can remember crying on the way home from my nuero's office. He dx , said he was the worst case he'd seen, offered no direction in finding a pt, and said, '"are you ok?" I said yes and on the drive home I lost it. At that point, I started my quest for information on the internet and was truly blessed to find an outpouring of support from the tort and plagio group. Because of these parents, I was able to focus, and know the direction I needed to go, and found the help we needed on my own. Six months later, the neuro sees my son again (after ignoring a few of my phone calls asking for info on certain things) and is shocked at how well he is doing. He says, "you did it Mom" and admitted that I was pretty much on my own. I was sooooo mad, but yet, it felt great that someone was patting me on the back after all of our hard work! My point is, hang in there, it does get easier, it will get better, and your child will be fine. This all seems overwhelming in the beginning, but you will become a pro in no time because you have to and before you know it, you'll be looking back on this and saying, "wow, we did it!" Please email me if you need to ask me any questions, I would be more than happy to answer.....and there are NO stupid questions- every question you have is a building block for your child!!! Good luck and please keep us posted! Here's the link: Holds/Stretches ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 Debbie-- Well we got the helmet today and it is the one that applies pressure to the head. It seems so big on her little head!! She didn't seem to mind it too much which is good (this is a baby that hates wearing hats so we figured this should be interesting) she doesn't like it when I take it off though to check for the red spots because it seems like it is suctioned t her head and I have to pop it off. I am having a hard time with trying to tell myself that it won't matter what people think of her with this helmet on. But I am sure I will get over it fast. I hope that time goes fast, the orthotist said we have to come in every two weeks at first, does this sound right? It made me wonder since like you said her head is growing. I guess I need to stop being mad at my ped. for all of the confusion. I am happy that he was on top of these problems (tort and pagio) from the beginning and took an active interest in getting us in for help! Thanks for all of your support and as always any advice is much appreciated!! and Gracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2002 Report Share Posted January 6, 2002 , Glad to hear that you received your band and that Gracie is doing well. It is hard to go out the first few times with the band on, but it really does get easier. By the time 's treatment was over I would sometimes wonder why people were looking our way or smiling at us - then I would remember, " Oh yeah, the helmet! " As far as the staring goes - when people stared at us I would usually say, " she's cute, isnt' she? " That usually opened the door for the person to actually address us and usually ask about the helmet. I was a firm believer in educating as many people as would listen about plagio - kind of my personal crusade - LOL! Every two weeks is pretty standard. If any problems arise between appointments give your ortho a call and they should be able to fit you in sooner. Best wishes and keep us posted. You and Gracie are going to do GREAT! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
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