Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi all, I haven’t wanted to bore everyone with our saga of STARBand issues, but I need a little advice again! We went in yesterday for an adjustment on Abigail’s band (after waiting a week for an “emergency” appt – long story) and I don’t think it helped any. As soon as Abby moves around (in her bed, while I’m nursing her, or even just playing) the band sort of pops up on her head, so that the forehead line sits a good inch and a half above her eyebrows. The ears are better, but still get rubbed when the band moves. When the ortho put it on her - nice and low - of course it didn’t move because I was holding her; but whenever I put it on, it moves within five or ten minutes. It seems that by the time I get the Velcro closed, it has moved and I have to start over (just closing the Velcro makes the band move?)… all the while Abby is screaming and wiggling away from me. She has also figured out how to push up on the sideburn pieces and pop the band completely out of place – almost all the way off her head! Is this common? Am I being completely anal about the fit of this thing now, since we had problems with the last band? My frustration level is peaking – both with the band and with MFB. We compared the two scans and there was some improvement, but not as much as I had hoped since we started her early enough to hopefully catch good growth. I don’t think I’ll ever let go of the fact that Abby’s biggest growth spurt happened in the week and a half that she was without a properly fitting band – it makes me soooo angry! That’s time we can’t get back – correction time that was completely wasted. My husband is willing to start over with CT in Chicago, but is leaving the decision up to me. He is at least going to call the insurance co and see what they say about it, and I will start composing my letter of medical necessity for the ped to sign (I think if I write it, he’ll sign it, but if I ask him to write one, I may not get it). Half of me wants to start over with them, and hopefully get a good fitting DOC. But the other half thinks that those long drives will be a pain for me, and what if we don’t have any better luck there? Any advice? , mom to Abigail (9/2/03) STARBanded 2/10 & 3/16, tort and Madeline, 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi : Ugh, I was hoping I'd hear a good update from you about Abby's STARband I think I understand what you're saying about the ear problems you're having, you put it on and it's fine, but w/i a min or so after it's been on, it shifts back " off center " ? I really don't know what to suggest for you on this. You need to follow your gut and do what you feel is best for Abby at this point. If you are a nervous wreck about the STAR fit, and aren't satisfied with MFB's answers or responses to your concerns, then perhaps the drives would be worth switching. Do what is best for YOU & YOUR family! It's a difficult decision to make, so don't rush into it. Best of luck. If you have any pics of the ears that you could share, that would be great. Keep us posted. Debbie Abby's mom DOCGrad Jenison > Hi all, > I haven't wanted to bore everyone with our saga of STARBand issues, but > I need a little advice again! We went in yesterday for an adjustment on > Abigail's band (after waiting a week for an " emergency " appt - long > story) and I don't think it helped any. As soon as Abby moves around > (in her bed, while I'm nursing her, or even just playing) the band sort > of pops up on her head, so that the forehead line sits a good inch and a > half above her eyebrows. The ears are better, but still get rubbed when > the band moves. When the ortho put it on her - nice and low - of course > it didn't move because I was holding her; but whenever I put it on, it > moves within five or ten minutes. It seems that by the time I get the > Velcro closed, it has moved and I have to start over (just closing the > Velcro makes the band move?). all the while Abby is screaming and > wiggling away from me. She has also figured out how to push up on the > sideburn pieces and pop the band completely out of place - almost all > the way off her head! Is this common? Am I being completely anal about > the fit of this thing now, since we had problems with the last band? My > frustration level is peaking - both with the band and with MFB. We > compared the two scans and there was some improvement, but not as much > as I had hoped since we started her early enough to hopefully catch good > growth. I don't think I'll ever let go of the fact that Abby's biggest > growth spurt happened in the week and a half that she was without a > properly fitting band - it makes me soooo angry! That's time we can't > get back - correction time that was completely wasted. > > My husband is willing to start over with CT in Chicago, but is leaving > the decision up to me. He is at least going to call the insurance co > and see what they say about it, and I will start composing my letter of > medical necessity for the ped to sign (I think if I write it, he'll sign > it, but if I ask him to write one, I may not get it). Half of me wants > to start over with them, and hopefully get a good fitting DOC. But the > other half thinks that those long drives will be a pain for me, and what > if we don't have any better luck there? > > Any advice? > > , mom to > Abigail (9/2/03) STARBanded 2/10 & 3/16, tort > and Madeline, 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 , I'm sorry this isn't a good news update for you. THe way you are describing it it does sound like it's moving more than it should. Why did they make you wait a week for an emergency appt? That would definitely make me angry! It's a tough decision for sure, and you really need to go with your gut. If you're unhappy w/both the fit and MFB then it sounds like a fresh start might be a good idea. But, like you said traveling is a bigger commitment for sure. We've traveled about 3 hrs for Hannah's DOCbands and it isn't fun, but it has been very well worth it. You already changed orthos at MFB, right? As far as having better luck at CT, the good thing about them is that you really aren't dealing w/luck. You know they have the training and skills. You really have to do what is best for your family though. Is she getting any red spots? I'm thinking that she is pretty young to be trying to push up on it and pop it off. Do you think it's bothering her? Good luck with what I know won't be an easy decision. Let us know if you're able to post a picture. , mom to Hannah, DOC #3 3/30 Cape Cod, Ma > Hi all, > I haven't wanted to bore everyone with our saga of STARBand issues, but > I need a little advice again! We went in yesterday for an adjustment on > Abigail's band (after waiting a week for an " emergency " appt - long > story) and I don't think it helped any. As soon as Abby moves around > (in her bed, while I'm nursing her, or even just playing) the band sort > of pops up on her head, so that the forehead line sits a good inch and a > half above her eyebrows. The ears are better, but still get rubbed when > the band moves. When the ortho put it on her - nice and low - of course > it didn't move because I was holding her; but whenever I put it on, it > moves within five or ten minutes. It seems that by the time I get the > Velcro closed, it has moved and I have to start over (just closing the > Velcro makes the band move?). all the while Abby is screaming and > wiggling away from me. She has also figured out how to push up on the > sideburn pieces and pop the band completely out of place - almost all > the way off her head! Is this common? Am I being completely anal about > the fit of this thing now, since we had problems with the last band? My > frustration level is peaking - both with the band and with MFB. We > compared the two scans and there was some improvement, but not as much > as I had hoped since we started her early enough to hopefully catch good > growth. I don't think I'll ever let go of the fact that Abby's biggest > growth spurt happened in the week and a half that she was without a > properly fitting band - it makes me soooo angry! That's time we can't > get back - correction time that was completely wasted. > > My husband is willing to start over with CT in Chicago, but is leaving > the decision up to me. He is at least going to call the insurance co > and see what they say about it, and I will start composing my letter of > medical necessity for the ped to sign (I think if I write it, he'll sign > it, but if I ask him to write one, I may not get it). Half of me wants > to start over with them, and hopefully get a good fitting DOC. But the > other half thinks that those long drives will be a pain for me, and what > if we don't have any better luck there? > > Any advice? > > , mom to > Abigail (9/2/03) STARBanded 2/10 & 3/16, tort > and Madeline, 4 Quote Link to comment Share on other sites More sharing options...
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