Re: Re: Intro - DSi Today

April 17, 2009

Thank you , for your very helpful information. I have uploaded Mackenzie's Photo Studies to the group under M. She tilts her head a little to the side in the picture, but I asked the therapist if she thought she had tort and she didn't think so. Her neck motion seemed to be ok. The number 6 in her measurements, from what I remember, was further down on the page. I think that number may represent the skull base asym. I do understand what you are saying about not worrying about the numbers so much. I guess I still second guess myself. So many people have told me that they think she looks "fine" but they do not know what to look for. In some ways, when people say this, I feel like they think I am being too critical of how my child looks. But on the other side, if I didn't do this treatment, would we all regret it down the road? Sorry I am babbling. I know that all of you have probably gone through the same second guessing. That is why this group is so good. I don't feel like I am alone in this. Amy ConnollyMackenzie - 9 mo (starting Banding 4/29/09) On Apr 17, 2009, at 7:18 AM, wrote:Hi Amy-We went to the CT in Charlotte and loved them. was our therapist but he since left to take a different career path. But we've seen a couple other therapists there and liked them just as well.It's okay, 91% for cephalic index is severe enough to band, so no worries there. The "normal" range is anywhere between 78 and 85 (depending who you ask). And CT doesn't depend a lot on the numbers, for the exact reasons they gave you. The measurements, at least the way CT does them, are based on anthropometric methodology. Basically it's the way anthropologists measure the skull bones of the fossils/articifacts they discover. Which really, is nothing like a living human baby's head (the first issue being that the movement/fussing of the baby is a completely different dynamic than a still lifeless skull). So they do measure from specific bone landmarks that might not necessarily take into effect the worst area of flat spots (for instance, there really is no measurement of the back lower head taken and for a lot of babies, that could be the worst flatness). CT is very visual, they only measure at the beginning and at the end, and they aren't quick to offer the numbers to the parents, cause they honestly don't put that much stock in them. And it seems to work well that way for them.The +2 is the standard deviation, and to be honest, I'm not sure what that tells you, since I did not deal with brachy at all first hand. Maybe someone else can explain it. The 7 and 6 have to do with the plagio part. Were they right next to each other on the sheet or was the 6 further down? The 7 is definitely one of the cranial vault numbers, the 6, if it was further down, could be the skull base asym. Otherwise, if they were right on top of each other, the 7 is the traditional cranial vault and the 6 is the cranial vault (both measure the top of the head but from different landmarks). I know it's hard sometimes for us, I go back and forth on this as well, depending on the numbers to show proof of how much improvement you're getting, but the next minute thinking the numbers don't matter cause they look good anyway (or vice versa). Plus, when we are talking about the severity of our babies on this board but not seeing pictures all the time, it's easy to throw out the numbers for some sort of "proof" of the severity we are discussing, or lack thereof. My advice (when I remember to give it) is to try to focus on the visual improvement you see throughout the process, more than the numbers themselves. As they grow and move through life, people aren't going to be coming up to them asking for their cephalic index or skull base asymmetry, you know what I mean? So I think it's more important that parents try to strive for "normal" in the way the head looks, rather than reaching a set number. Which is sometimes easier said than done!Good Luck!Jake-2.5 DOCBand Grad 9/08Jordan-5>> Hi everyone. I have been "lurking" on this group for the past couple of weeks. I have really enjoyed reading the posts and have already learned a lot along with having more questions/concerns. My daughter, Mackenzie is 9 mo and has Brachycephaly and right Plagio. According to the clinician, she is in the "high moderate to low severe" range. I will post her Photo Study soon. We are going to CT in Charlotte. Today, we went for the DSi and paid for the treatment, so I guess we are committed to it now. She did fine with the DSi. She was even fine with the stocking they put over her face, although mommy was a little nervous about that one.> > After reading a lot of the posts with everyone talking about their "measurements", I started getting a little concerned because CT never gave us any measurements. Today, I asked about them. She showed us the measurements but did mention that they only take them for insurance purposes. She said that they are basically measuring from one bone point to another and that the severe areas may not always show up in the particular areas they are measuring. That is why they don't pay a lot of attention to the measurements. I would like to thank for explaining the measurements. That helped me to understand it a LITTLE better. I don't remember exactly what each number represented, because I did not get a copy, but what I could remember of her numbers, I wrote down when I got to the car. The Cephalic Index was 91.00 underneath that was a +2 (not sure what that meant) The next number she gave was a 7. I think this was the Cranial Vault Assym. The last number was a 6. I think I remember her telling me that this was the measurements from ear to nose (maybe?). Does this make sense to anyone? I am not sure where the Cephalic Index "should be" either. All I really know is that these were the numbers in this order, if anyone knows what CT typically measures first, second, so forth please explain this to me. I would love anyone's advice or input on Mackenzie, just please don't tell me that you don't think her measurements are severe enough to do the treatment, since we just forked out all the money today. :-)> > Thanks.> > Amy > Mackenzie - 9 months (receiving DOC band on April 29th)>

April 17, 2009

,

That's exactly how I felt.. I kept obsessing about whether it was just me who saw what I saw. I even started quizzing people on which ear was more forward, and so on.. just for confirmation that I wasn't nuts! So finally seeing it in numbers/pictures really eased my mind - it was actually a relief!

Kim

On Fri, Apr 17, 2009 at 9:06 AM, <nwilkens2275@...> wrote:

She's adorable! Has your ped examined her for tort? Because I think I would still get her checked out specifically for that because even if she has range of motion both ways, I would still want to check out her tilt just to be sure (it could be that her neck is just short, rather than short AND tight). Is her head tilted like that often?

I think the back angle photo shows her brachy pretty well, her head sort of angles out on the left side. I see it in the top looking down as well. So I think you are making a wise choice to band her. I look forward to seeing her after photos!

And I know, seriously, what you mean about second-guessing and focusing on the numbers. For me, I was actually concerned that the numbers wouldn't be severe enough to prove that I was seeing what I was seeing. I needed the validation, I guess, because I was so going to band him no matter what (he was 17 months old and I was desperate), but at least when his numbers came back at 15mm for both cranial vault and skull base, I was like " yes! I'm NOT crazy! " So sad, but so true. And then again, I sometimes like to give his beginning and ending numbers, particularly when other parents of older babies are questioning whether banding is worth it or not, because it shows that there was, in fact, improvement at a later age. So yeah, I get it, cause I definitely go back and forth with it regularly.

Jake-2.5 (DOCBand Grad 9/08)Jordan-5

> > >> > > Hi everyone. I have been " lurking " on this group for the past > > couple of weeks. I have really enjoyed reading the posts and have > > already learned a lot along with having more questions/concerns. My

> > daughter, Mackenzie is 9 mo and has Brachycephaly and right Plagio. > > According to the clinician, she is in the " high moderate to low > > severe " range. I will post her Photo Study soon. We are going to CT

> > in Charlotte. Today, we went for the DSi and paid for the treatment, > > so I guess we are committed to it now. She did fine with the DSi. > > She was even fine with the stocking they put over her face, although

> > mommy was a little nervous about that one.> > >> > > After reading a lot of the posts with everyone talking about their > > " measurements " , I started getting a little concerned because CT

> > never gave us any measurements. Today, I asked about them. She > > showed us the measurements but did mention that they only take them > > for insurance purposes. She said that they are basically measuring

> > from one bone point to another and that the severe areas may not > > always show up in the particular areas they are measuring. That is > > why they don't pay a lot of attention to the measurements. I would

> > like to thank for explaining the measurements. That helped me > > to understand it a LITTLE better. I don't remember exactly what each > > number represented, because I did not get a copy, but what I could

> > remember of her numbers, I wrote down when I got to the car. The > > Cephalic Index was 91.00 underneath that was a +2 (not sure what > > that meant) The next number she gave was a 7. I think this was the

> > Cranial Vault Assym. The last number was a 6. I think I remember her > > telling me that this was the measurements from ear to nose (maybe?). > > Does this make sense to anyone? I am not sure where the Cephalic

> > Index " should be " either. All I really know is that these were the > > numbers in this order, if anyone knows what CT typically measures > > first, second, so forth please explain this to me. I would love

> > anyone's advice or input on Mackenzie, just please don't tell me > > that you don't think her measurements are severe enough to do the > > treatment, since we just forked out all the money today. :-)

> > >> > > Thanks.> > >> > > Amy> > > Mackenzie - 9 months (receiving DOC band on April 29th)> > >> >> >> >>

April 17, 2009

& Amy,

All three of our 'M' girlies have their heads tilted the same way right next to one another ).. maybe we need to have a Torticollis party in Charlotte, ha!

Kim

On Fri, Apr 17, 2009 at 9:04 AM, amy.alday <amyalday@...> wrote:

Amy,Our daughter's sound so much alike! We are going today for our DSi scan and am I still wondering if we are doing the right thing. Adelyn is 4.5 mo old w/ brachy and mild right plagio. Since doing repo for the last 3.5 weeks, we have noticed a great difference in her brachy. All of our friends/family say that they don't really see the need for a band now. Another pediatrician even told us that he would only consider it a mild case now. My husband and I can still see some flatness when she holds her head a certain way. So, we've decided that we would rather go ahead w/ the band, then regret not doing it later on.

Maybe we'll run into each other one day at CT. We are heading out the door now to go to Charlotte.Amy Adelyn (her pix are posted under " M " )Also, the numbers we were given for brachy were:

Ear Asym 5mmCranial Vault 8mmCephalic Ratio 94%