Re: Re: What's the best a helmet can do?

[Guest guest]

Thank you for responding. I feel the same way and I think I need to vent. There is one other ortho and he took care of my son 31/2 yrs. ago who had no progress in the helmet whatsoever. My other son started late 11 mon. because the pediatrician kept telling me it would round out. They were disgusted with me back then because I didn't want to give up and so now it's like I'm the bitch. Trust me I'm so nice when I go in there and just want to bite my tongue. They treat me horribly. The last time I walked in and said Happy Friday and he didn't even respond. He asked me how's it going and I told him I still notice the flat spot and he said Where?? I said well you look it's right here. He then hardly looked and asked me where I wanted to shave the helmet. I'm so frustrated!! This is my kid's head!!!! He didn't want me to get the helmet, which makes no sense

since he qualifies. He goes for a scan today but with the ortho I had yrs. ago since the other one is not working. I'm curious to see how the scan comes out. I really think he fudged it the last time. He knows I'm concerned about asymmetry and then after the scan he said Well you need to understand it could come out different from scan to scan. What's that!!!! I don't want to quit until I no longer notice asymmetry in pics and when I look at him. My other son was a severe case and it was never corrected. I thank god that my son has very thick hair and we have the hairdresser keep it long on the flat side. I spike his hair so I put gel on the rounded side to flatten his hair more on that side. I really notice his asymmetry but Ido not know if people do. I know it's there. He's lucky he's cute with big blue eyes. In other words I can't fail again!!! I just don't know why I haven't noticed a difference wearing the helmet

for 7 weeks. I really don't think I should give up. i'll let you know what the scan says today. I wish I had better options and could choose another ortho!!

Thanks

From: <nwilkens2275@...>Subject: Re: What's the best a helmet can do?Plagiocephaly Date: Friday, June 26, 2009, 7:57 AM

It's sad to say that it sounds like you're working with an ortho that just really doesn't care about treating your son effectively. I think the 92% brachy measurement definitely qualifies him for a helmet (low to mid 80s would be "normal" these days) and you should be able to see improvement there, if the ortho is doing what he needs to do. 6mm of assym is mild, but at 8 months old, you should still see improvement in that number as well, as long as he's growing at a good pace. I don't think I would give up on the helmet as much as I would give up on that ortho. Who wants to work with someone that is negative and not taking your concerns seriously? Is he the only ortho in that office? Is it possible to get a second opinion from anyone?Jake-2.5 (DOCBand Grad 9/08)Jordan-5 >> I have been struggling with the ortho where I go because he believes my son doesn't really need a helmet. His CI was 92 percent which qualified him. He originally told me his assymetry was 6mm and the last time he told me it was .10, which makes no sense if I still notice one ear pushed more forward in pics and when I look at him. He has been in a helmet for 7 weeks and I notice no difference at all. I'm so frustrated. He goes for a scan tomorrow and I know he is going to brush me off like the last time. What should I do? Do u think the helmet could still help him or is his condition too minimal? Has anyone gotten better results?> Thanks > Son is Aiden 8 months>

[Guest guest]

I went to the ortho today and they told me in so many words that I shouldn't bother and it is not going to work for him. According to the scan his Cephalic Index is 89. He then told me normal range is 78-88. Well if that's normal then why should I give up. I have seen little improvements and they couldn't compare it to his previous scan because the ortho said he couldn't find where his actual ortho put his file. Sounds like bologna to me. His radial symmetry index went up to 32.4 from 19.2. I notice this when I checked my records. What does that mean? Is that bad?

From: <nwilkens2275@...>Subject: Re: What's the best a helmet can do?Plagiocephaly Date: Friday, June 26, 2009, 7:57 AM

It's sad to say that it sounds like you're working with an ortho that just really doesn't care about treating your son effectively. I think the 92% brachy measurement definitely qualifies him for a helmet (low to mid 80s would be "normal" these days) and you should be able to see improvement there, if the ortho is doing what he needs to do. 6mm of assym is mild, but at 8 months old, you should still see improvement in that number as well, as long as he's growing at a good pace. I don't think I would give up on the helmet as much as I would give up on that ortho. Who wants to work with someone that is negative and not taking your concerns seriously? Is he the only ortho in that office? Is it possible to get a second opinion from anyone?Jake-2.5 (DOCBand Grad 9/08)Jordan-5 >> I have been struggling with the ortho where I go because he believes my son doesn't really need a helmet. His CI was 92 percent which qualified him. He originally told me his assymetry was 6mm and the last time he told me it was .10, which makes no sense if I still notice one ear pushed more forward in pics and when I look at him. He has been in a helmet for 7 weeks and I notice no difference at all. I'm so frustrated. He goes for a scan tomorrow and I know he is going to brush me off like the last time. What should I do? Do u think the helmet could still help him or is his condition too minimal? Has anyone gotten better results?> Thanks > Son is Aiden 8 months>

[Guest guest]

I live in RI. I'm so frustrated!!! I've met with both orthos that are there and they are definitely giving me the cold shoulder. They are so negative and just keep saying that they wouldn't continue and we see a lot more severe cases. As he was telling me not to continue I felt my eyes tearing up and he must have noticed because he stopped and said but if you want you can continue. I just want what's best for my son's head. So if the RSI went up in number that means it improved? It was 19.2 and now is 32.4. I'm so confused. So you think I should continue?

From: christineashok <christineashok@...>Subject: Re: What's the best a helmet can do?Plagiocephaly Date: Friday, June 26, 2009, 11:01 PM

You can go to a new ortho. Mormal is more like 78 to 79. Our specialist (cranial facial plastic surgeon) recommaneds banding at 90% or above. That makes 89% borderline - not normal. I wanted to quit when my daughter was about 87% and my specialist strongly encouraged me to continue to get as low as I could. I got to about 85%, and it did make a difference. From the RSI it seems the symmetry is improved, but that doesn't reflect anything regarding the brachy (only the plagio). Also sounds like you don't think his head looks more symmetric. You really need to find a new ortho. Where do you live? -christinesydney, 3 yrs, starband grad> >> > I have been struggling with the ortho where I go because he believes my son doesn't really need a helmet. His CI was 92 percent which qualified him. He originally told me his assymetry was 6mm and the last time he told me it was .10, which makes no sense if I still notice one ear pushed more forward in pics and when I look at him. He has been in a helmet for 7 weeks and I notice no difference at all. I'm so frustrated. He goes for a scan tomorrow and I know he is going to brush me off like the last time. What should I do? Do u think the helmet could still help him or is his condition too minimal? Has anyone gotten better results?> > Thanks > > Son is Aiden 8 months>

>>

[Guest guest]

I cried when I read your response. I'll die if he's getting worse. I just put lipstick all over the helmet to see where it is hitting. It does move around a litttle so I'm going to let him play in it for a while. My husband doesn't believe they can help him because he believes they can't form a perfect head. he thinks the scans are not 100% accurate from time to time. He is familiar with such software. So I get no support from him either which makes me mad. I would love love to go to cranial tech. I looked into it for my other son and it was like 3 or 4 hrs. away.Yikes!!! That's too far!!! Thanks for your support. I just want to do the right thing and I'm really confused as to what that is especially when the ortho told me You've done what you could do.

Thanks again

: christineashok <christineashok@...>Subject: Re: What's the best a helmet can do?Plagiocephaly Date: Saturday, June 27, 2009, 7:30 AM

The RSI should go down, not up. My daughter started at 26, and ended at 17. She didn't have much asymmetry - she went from 4.5 mm to 3.5 mm. You can see her scan with the data in Our Plagio Babies S/Sydney M. I'm pretty sure if the RSI is going up he's getting worse. There is a cranial tech office in Clinton Connecticut (maker of the DOCband). If that is not too far, you might consider driving there for a free consult. I think it might help to get the opinion of someone else. Also CT has an excellent reputation. (www.cranialtech. com)In terms of his head improving, I always suggest taking your own pictures so you have something to compare to. I suggest every week or two. I wouldn't graduate if there is room in the band and he is moving in the right direction. Obviously if his head were getting worse you would want to stop immediately. It isn't really helpful for the ortho to say "we've seen worse". We all want the best for our

children, not for someone else to be worse off.hope this helps. -christinesydney, 3 yrs, starband grad> > >> > > I have been struggling with the ortho where I go because he believes my son doesn't really need a helmet. His CI was 92 percent which qualified him. He originally told me his assymetry was 6mm and the last time he told me it was .10, which makes no sense if I still notice one ear pushed more forward in pics and when I look at him. He has been in a helmet for 7 weeks and I notice no difference at all. I'm so frustrated. He goes for a

scan tomorrow and I know he is going to brush me off like the last time. What should I do? Do u think the helmet could still help him or is his condition too minimal? Has anyone gotten better results?> > > Thanks > > > Son is Aiden 8 months> > >> >>

[Guest guest]

I have a starband. I'm really worried about the RSI number. I have taken pics right along but they aren't the best. I should dig them up and compare. I feel like i need to be my kids ortho. I covered the helmet with lipstick and the area I want to grow is definitely not hitting and the area I want to prevent from growing had lipstick on his head.. So I'm thinking that's good. The first scan he told me his asymmetry was 5.8 and then the second one he told me .1, which makes no sense. I did not get a flat asymetry number on friday. The RSI numbers were 19.2 to 10.2 and then 32.4. Could that be possible? The ortho I saw Fri. took diag 1 (front of head to back of one side and then the other) and diag 2 and compared and said he is 1.9 mm. Whatever that means??? I'm so confused. Would you keep going with the helmet? Thanks for your support.

From: christineashok <christineashok@...>Subject: Re: What's the best a helmet can do?Plagiocephaly Date: Saturday, June 27, 2009, 4:57 PM

I hope I'm right about the rsi - I really don't want to make you cry. I looked at sydney's scan numbers, and hers went down, and I know that her asymmetry improved slightly. There is some margin of error in the numbers from scans and also from hand measurements. So small changes don't necessarily mean the head is getting worse - they are often just measurements errors. I know that for the most part cranial tech doesn't even measure - they just go by appearance. Measurements are definitely not the most important thing.Some orthos and doctors don't think brachy is a problem if asymmetry is low. I'm not sure why, but it is fairly common. Maybe your ortho is in this camp. But if he's willing to work with you that might be okay. One thing is that the orthos usually charge a flat fee for banding, and don't charge for adjustments. Maybe your ortho doesn't want to spend time since he's not getting paid more for more visits. I don't know your ortho

at all, but just trying to guess what he might be thinking. I recommend taking pictures of his head now, and in two weeks. Also if you have pictures look back and see if you can tell the difference. His asymmetry numbers don't sound too bad, but not sure why they went from 6 to 10. I think that is what you mean when you wrote 6 and .10 - is that 6 mm and .10 cm (10 mm)? What kind of band do you have? -christinesydney, 3 yrs, starband grad> > > >> > > > I have been struggling with the ortho where I go because he believes my son doesn't really need a helmet. His CI was 92 percent which qualified him. He originally told me his assymetry was 6mm and the last time he told me it was .10, which makes no sense if I still notice one ear pushed more forward in pics and when I look at him. He has been in a helmet for 7 weeks and I notice no difference at all. I'm so frustrated. He goes for a scan tomorrow and I know he is going to brush me off like the last time.

What should I do? Do u think the helmet could still help him or is his condition too minimal? Has anyone gotten better results?> > > > Thanks > > > > Son is Aiden 8 months> > > >> > >> >>

[Guest guest]

One thing to consider is the accuracy of the scan. A wiggly child can produce an unreliable scan. had a total of 5 scans done. The first and the last were the most reliable because there were three of us holding her down.

If I compared her middle scans with the other scans, it makes it look like her radial symmetry and some other numbers got worse. Since we were only focusing on the cranial ratio index and I didn't have a print out of the first scan at the time, I wasn't worried about it. In the end, when I compared the first and last scans, her radial index had gone down slightly. I believe that anything under 30 is considered to be in the normal range, but I don't remember for sure.

Did your son cry or struggle during the scan?

, mom to , 22 months

STARband grad 05/11/09

land

Re: What's the best a helmet can do?Plagiocephaly Date: Friday, June 26, 2009, 11:01 PM

You can go to a new ortho. Mormal is more like 78 to 79. Our specialist (cranial facial plastic surgeon) recommaneds banding at 90% or above. That makes 89% borderline - not normal. I wanted to quit when my daughter was about 87% and my specialist strongly encouraged me to continue to get as low as I could. I got to about 85%, and it did make a difference. From the RSI it seems the symmetry is improved, but that doesn't reflect anything regarding the brachy (only the plagio). Also sounds like you don't think his head looks more symmetric. You really need to find a new ortho. Where do you live? -christinesydney, 3 yrs, starband grad> >> > I have been struggling with the ortho where I go because he believes my son doesn't really need a helmet. His CI was 92 percent which qualified him. He originally told me his assymetry was 6mm and the last time he told me it was .10, which makes no sense if I still notice one ear pushed more forward in pics and when I look at him. He has been in a helmet for 7 weeks and I notice no difference at all. I'm so frustrated. He goes for a scan tomorrow and I know he is going to brush me off like the last time. What should I do? Do u think the helmet could still help him or is his condition too minimal? Has anyone gotten better results?> > Thanks > > Son is Aiden 8 months> >>

[Guest guest]

You should also pay attention to the numbers for the posterior, anterior and total asymmetry indexes. Those have to do with the symmetry of the volume between the sides of the head in the front and in the back. I have to admit that I'm not clear about what the RSI exactly measures, although I do understand that it is supposed to go down. The numbers for those other symmetry indexes should be above 90 or 92 percent. Or they should be improving.

That diagonal difference of 1.9 is your new plagio number. That is his current asymmetry and the place where they take the circumference measure. The other asymmetry indexes have to do with the symmetry of the volume of the head and so they are more comprehensive.

For example, 's plagio number increased slightly from less than 2 to 2.5 during the time in her helmet; however, her overall symmetry improved (meaning the symmetry of the overall head rather than at just one point) as measured by her assymetry indexes. Her numbers were never that bad, but if I hadn't looked at those other indexes, I would have thought that her assymetry had gotten worse.

, mom to , 22 months

STARband grad 05/11/09

land

Re: What's the best a helmet can do?Plagiocephaly Date: Saturday, June 27, 2009, 4:57 PM

I hope I'm right about the rsi - I really don't want to make you cry. I looked at sydney's scan numbers, and hers went down, and I know that her asymmetry improved slightly. There is some margin of error in the numbers from scans and also from hand measurements. So small changes don't necessarily mean the head is getting worse - they are often just measurements errors. I know that for the most part cranial tech doesn't even measure - they just go by appearance. Measurements are definitely not the most important thing.Some orthos and doctors don't think brachy is a problem if asymmetry is low. I'm not sure why, but it is fairly common. Maybe your ortho is in this camp. But if he's willing to work with you that might be okay. One thing is that the orthos usually charge a flat fee for banding, and don't charge for adjustments. Maybe your ortho doesn't want to spend time since he's not getting paid more for more visits. I don't know your ortho at all, but just trying to guess what he might be thinking. I recommend taking pictures of his head now, and in two weeks. Also if you have pictures look back and see if you can tell the difference. His asymmetry numbers don't sound too bad, but not sure why they went from 6 to 10. I think that is what you mean when you wrote 6 and .10 - is that 6 mm and .10 cm (10 mm)? What kind of band do you have? -christinesydney, 3 yrs, starband grad> > > >> > > > I have been struggling with the ortho where I go because he believes my son doesn't really need a helmet. His CI was 92 percent which qualified him. He originally told me his assymetry was 6mm and the last time he told me it was .10, which makes no sense if I still notice one ear pushed more forward in pics and when I look at him. He has been in a helmet for 7 weeks and I notice no difference at all. I'm so frustrated. He goes for a scan tomorrow and I know he is going to brush me off like the last time. What should I do? Do u think the helmet could still help him or is his condition too minimal? Has anyone gotten better results?> > > > Thanks > > > > Son is Aiden 8 months> > > >> > >> >>