Guest guest Posted May 23, 2010 Report Share Posted May 23, 2010 Okay - I finally did it. I took back to Star Cranial in Columbia (MD) for a follow up scan 1 year and 9 days after her graduation. did great. I prepared her beforehand by showing her a video of the scan process that I found online and we talked about it and practiced it on her baby. (ortho) also explained to her what we were doing and demonstrated it on a baby doll that they have in the office. cooperated 100 percent. She held so still and I was so proud. And, it was so amazing since she screamed her head off during every single scan during her treatment. 's hair is now down past her shoulders. It isn't super thick, but it is considerably thicker than it was last year and did comment on how thick it was when she put the head sock on her. So, we put the sock on and had to tuck in her hair. Where it is tucked in above her ears is right around where that width measurement is taken (level 3 is just above the ears on the sides). The back was different.- it was tucked in near the base of the skull where the bottom of the sock is. I mention the hair because it is the reason that we chose to disregard the scan after looking at it. What everyone is saying about hair is true (in a separate thread). said the same thing. `s hair prevented us from getting good numbers. Luckily, is good enough to notice that the numbers just did not make sense. According to the numbers, 's head had regressed. But, said that none of the "clinical" signs of regression were present. Plus, 's head just doesn't look like a 94 percent. So, she said that she didn't think that it was a good scan and probably because of her hair. Because her head is still so small (she still fits into 12 to 18 month hats at nearly 3 years), those few mm extra on both sides of her head (with the hair tucked in there) made a major difference. So, I do not have my proof of improvement and never will. I do not plan on cutting or shaving her hair just to get a scan. But, at least now I know that going for a scan is no longer an option. And, I am so grateful that knows her stuff. This just illustrates the importance of having a good ortho and it also illustrates to me why so many people had recommended to me. was able to look at more than the numbers - she looked at the 3D views as well as 's head and just knew that the numbers didn't make sense. If I had someone less competent, I would have left there worrying that had regressed. Despite my lack of proof, I do believe that `s head has improved. I believe it every time that I see the pictures that I've taken. And, she looks good to me. And, I am so grateful for the feedback that I have gotten from so many of you who say the same exact thing. I've been talking about doing this for months. If I had done it 6 months ago, we might have been able to get numbers, but 6 months ago, I wasn't ready. I needed to be at a place where I knew that I didn't need the numbers to let me know how to feel about her head. Before calling for the appointment, I knew that I would be okay with the results even if they didn't show improvement. That is because I now believe that the numbers don't tell the whole story. For one thing, they only tell what is going on in one slice of her head. Improvements elsewhere will not show up. For another thing, as I have seen with multiple pictures posted on here, the same number looks so differently on each head. A 92 percent on my daughter looks different than a 92 percent on other heads. So, while the insurance companies use these numbers as guides, I really have decided that we, as parents, need to try and focus on the whole head and use our own judgment as to what looks okay. No, her head isn't perfect and I have spent way too many months feeling guilty for not getting her treated while she was young, but I can't go back and change that now. What we have ended up with isn't "normal," but is it good enough. So why did I go for the scan? Partly because I knew that time was running out and if I didn't do it now, then she would be too big. And, because I did want to get proof of the improvement that I saw. I wasn't sure that I could get it, but I wanted to try. I thought I might not get it because she wouldn't cooperate - I had not even thought of the hair. So, I am disappointed that we couldn't get a good scan, but I am still okay with 's head. She is doing so well in so many ways and she does pass for normal for most people. Her head will not get in her way in her life and that was my main goal for her when I got her treatment. On a side note, has been playing "scanning heads" over and over again since we got back. It really is quite cute. She also was so happy to see the pictures of other babies in bands when we went to the office. She asked to watch the online video again and then said, "now the baby goes to Burger King." (BK was where we went after her scan). , mom to , 2 3/4 years STARband grad May 2009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2010 Report Share Posted May 23, 2010 Hi , sorry that the scan wasn't good, but that makes sense about the hair - and of course nothing can be done except the extreme step of shaving her head (not recommended). I'm glad you feel her head has improved even if you can't prove it in a court of law :-) It does look pretty good to me. -christine sydney, 4 yrs, starband grad > > > > > > > > > > Okay - I finally did it. I took back to Star Cranial in Columbia (MD) for a follow up scan 1 year and 9 days after her graduation. > > > > did great. I prepared her beforehand by showing her a video of the scan process that I found online and we talked about it and practiced it on her baby.  (ortho) also explained to her what we were doing and demonstrated it on a baby doll that they have in the office. cooperated 100 percent. She held so still and I was so proud. And, it was so amazing since she screamed her head off during every single scan during her treatment. > > > > 's hair is now down past her shoulders. It isn't super thick, but it is considerably thicker than it was last year and did comment on how thick it was when she put the head sock on her. So, we put the sock on and had to tuck in her hair. Where it is tucked in above her ears is right around where that width measurement is taken (level 3 is just above the ears on the sides). The back was different.- it was tucked in near the base of the skull where the bottom of the sock is. > > > > I mention the hair because it is the reason that we chose to disregard the scan after looking at it. What everyone is saying about hair is true (in a separate thread). said the same thing. `s hair prevented us from getting good numbers. Luckily, is good enough to notice that the numbers just did not make sense. According to the numbers, 's head had regressed. But, said that none of the " clinical " signs of regression were present. Plus, 's head just doesn't look like a 94 percent. So, she said that she didn't think that it was a good scan and probably because of her hair. Because her head is still so small (she still fits into 12 to 18 month hats at nearly 3 years), those few mm extra on both sides of her head (with the hair tucked in there) made a major difference. So, I do not have my proof of improvement and never will. I do not plan on cutting or shaving her hair just to get a scan. But, at least now I know that going for a scan is no longer an option. > > > > And, I am so grateful that knows her stuff. This just illustrates the importance of having a good ortho and it also illustrates to me why so many people had recommended to me. was able to look at more than the numbers - she looked at the 3D views as well as 's head and just knew that the numbers didn't make sense. If I had someone less competent, I would have left there worrying that had regressed. > > > > Despite my lack of proof, I do believe that `s head has improved. I believe it every time that I see the pictures that I've taken. And, she looks good to me. And, I am so grateful for the feedback that I have gotten from so many of you who say the same exact thing. > > > > I've been talking about doing this for months. If I had done it 6 months ago, we might have been able to get numbers, but 6 months ago, I wasn't ready. I needed to be at a place where I knew that I didn't need the numbers to let me know how to feel about her head. Before calling for the appointment, I knew that I would be okay with the results even if they didn't show improvement. That is because I now believe that the numbers don't tell the whole story. For one thing, they only tell what is going on in one slice of her head. Improvements elsewhere will not show up. For another thing, as I have seen with multiple pictures posted on here, the same number looks so differently on each head. A 92 percent on my daughter looks different than a 92 percent on other heads. So, while the insurance companies use these numbers as guides, I really have decided that we, as parents, need to try and focus on the whole head and use our own judgment as to what looks okay. No, her head isn't perfect and I have spent way too many months feeling guilty for not getting her treated while she was young, but I can't go back and change that now. What we have ended up with isn't " normal, " but is it good enough. > > > > So why did I go for the scan? Partly because I knew that time was running out and if I didn't do it now, then she would be too big. And, because I did want to get proof of the improvement that I saw. I wasn't sure that I could get it, but I wanted to try. I thought I might not get it because she wouldn't cooperate - I had not even thought of the hair. > > > > So, I am disappointed that we couldn't get a good scan, but I am still okay with 's head. She is doing so well in so many ways and she does pass for normal for most people. Her head will not get in her way in her life and that was my main goal for her when I got her treatment. > > > > On a side note, has been playing " scanning heads " over and over again since we got back. It really is quite cute. She also was so happy to see the pictures of other babies in bands when we went to the office. She asked to watch the online video again and then said, " now the baby goes to Burger King. " (BK was where we went after her scan). > > > > , mom to , 2 3/4 years > > STARband grad May 2009 > Quote Link to comment Share on other sites More sharing options...
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