So a year ago today, Maysa graduated from her 2nd DOC band and we were once and for all done with bands. She had to wear four bands total: two kidcaps from ECA, which we believe failed her big time, and two DOC bands from Cranial Technologies which is what we should have picked to begin with. She wore them from July 2, 2008 till May 26, 2009, almost 11 months…
Well, 12 months later, here is the progress she’s made: Left Profile: Here are some comparison pictures where I cropped her pony tail and the background to help focus on the actual shape of her head. In this one, I feel like the base of the back of her head is where her head has rounded out the most lately. It has gotten deeper too, there is no doubt.
Top View: In the following, I am comparing her head from July 2008, when she was in the Kidcap to now and from this past January when she got her last starscan to now. She’s improved dramatically from July 08 till now, but look, it seems that she’s also improved in the past 4 months! Click on the pictures to zoom into them and look at the measurements on the rulers.
Front View: I couldn’t get a good shot of her front view but I found these two pictures pretty comparable. Her face has gotten longer and as a result, it doesn’ t look as wide. Also, the reverse pear shape is less noticeable to me.
I couldn’t get a good right profile shot but even from that angle, things look pretty good. What I was able to get instead is a back right side picture that shows how nice and round her head is there.
I hope that this post gives hope to all parents out there wondering if things can actually get better post banding. It has for my Maysa. Thank you Amber and the team at Cranial Tech for helping reshape my little girl’s head. I will always owe you!
It’s been almost 8 months since Maysa graduated from her 2nd DOC band. She’s basically been out of it for as long as she has been in it. She also turned two recently and I keep thinking that things are getting better and better post band… I don’t take as many pictures as I used to of her head (top view, profile, front…) but I was comparing the two pictures from her 1st and 2nd birthdays, the other day . She has changed a lot, I think, but while I know she has, it is not until I mirrored the two pictures that it became very obvious to the naked eye.
So, here are the two pictures I kept staring at. In the one on the left, she is one and under treatment with the 1st DOC band. On the left, she is two and done with treatment. Do you notice the differences? If you are somewhat like me, you probably do, but if you can’t quite put your finger on it, take a look at the set below this one:
Do you now see what I see? Look at her ears in the mirror picture when she was one and the right side of her face. It’s almost like somebody had come and grabbed that part of her face and pulled at it. That right ear in the mirror picture is higher, her cheek is higher, the bulge over that right ear is also more pronounced. I never thought back then that she had much facial asymmetry but boy was I wrong… In the recent picture, her ears are aligned, her head doesn’t seem so wide, and except for one eye looking a tidbit smaller than the other, I would say that her asymmetry is close to zero, at this point. I also have to say that her face has gotten longer and this has helped with the overall aspect of her head not looking so brachycephalic (wide).
I’ll have to try my best to take more comparable pictures of her head from different angles, but by posting this entry, I just wanted to kind of give an update as to what things look like now in retrospect to a year ago, back when I thought things would never really look normal again. I do think and know that the DOC band helped fix several things a great deal. She’s also been improving on her own since…
Guess what? I got a message yesterday from Sheryl at Cranial Technologies in Annandale, VA: “Congratulations, Maysa has made it into our DOC Band Babies Calendar 2010!”. I couldn’t believe it. I have been wondering when we would find out but didn’t think they would call. Yet they did. So, of course, while cheering for her I went to the computer and searched for the calendar. She didn’t make it to one of the big pages but she is there in the second page of the calendar at the bottom right corner. So many pictures have been submitted and to see there, among the few that were selected, makes it very special. Above is the picture they chose…
Way to go, Maysa and all other DOC Band babies, you are all so beautiful!
So, what happens when you get a cranial helmet meant to correct plagiocephaly and the helmet is not symmetrical. Well, in our case, we ended up with even more asymmetry after 3.5 months of treatment and over 3.5 cm of growth in head circumference. Look at the picture below. On the left is a top view picture of Maysa’s second helmet from ECA. On the right is a mirror image of that picture. Do you see the asymmetry?
Maysa mainly had brachycephaly but the helmets she wore from ECA were never really that much longer in the back nor were they rounder at the base. As a matter of fact, they always looked kind of “short” in the back, like they were not covering her head all the way to the bottom. Look at a comparison between her 2nd helmet from ECA on the left and her 2nd DOC band from Cranial Tech on the right.
Now why didn’t I do something about this from the start? Well, I trusted too much, had too much faith in the expertise of our orthotist and kept quieting my mommy instincts. I am still so glad that while Maysa regressed in the helmets from ECA, we were still able to get great correction from the two DOC bands she wore after that.
I can’t seem to stop posting about the changes that have happened recently in Maysa’s head shape. Here is another comparison shot. It is not perfect, I know, it captures her back right profile in an unusual angle but definitely outlines where her head has been growing in the back, don’t you think? I also want to mention that the picture on the left was taken about a month and a half after she graduated from her 2nd DOC band while the one on the right was taken two and a half months later.
Ok, so while I haven’t taken pictures of Maysa’s head in a while I did take some this weekend and have been comparing them to some older ones. Here is this set below:
I outlined her head and trimmed her hair in all three pictures so the focus in on her head shape only and not her hair. In July 2008, her head is obviously really flat and she has a little bit of a conehead. In May 2009, she is about to graduate from her DOC band and while it is much much improved, it is kind of squarish overall. This past weekend, August 2009, her head is round. WOW! I am amazed! She is improving on her own. What a relief!
Maysa has been on the Front Page of the Yahoo Plagio Group since Thursday and just like all other Front Page Stars parents, I’ve been asked to share her story. Most of it is in her blog but definitely not all of it. I am having a hard time deciding on what to tell about and what to leave out, and then, I am having a hard time finding the time to do it…
Let’s see how much of it I can share today…
I’ll start by where we are now and say that Maysa graduated from her second DOC band a month and a half ago. She looks good especially in the back where her head is now nicely curved. Her forehead on the other hand looks more pronounced on the sides than normal. It is wider than what it should have been and right now, I am having a hard time fixing her hair in such a way that it will not accentuate it. Yes, while most parents would love for their plagio/brachy babies to have hair to cover the imperfections, Maysa’s thick and curly hair is quite challenging. I tried cutting it last time, but that was quite a disaster. I am glad that she is too young to care!
Changes in the second DOC band were not as dramatic as with the first DOC band but she still grew on the back up to the point where there was no more foam to shave off the back. She tolerated it just as well as the first one but did manage to pull it off her head a couple of times. Just like with the first band, Maysa never suffered from any rash from it and always slept well in her bands.
Maysa got her first DOC band when she was 9.5 months old. It was in mid October of 2008 and I was so depressed about what had happened with her head shape after being in a passive helmet from Eastern Cranial Affiliates for 3.5 months, I thought that Maysa would never look right again. We had put all of our faith in Joe Terpenning and we had trusted him. However, while Maysa’s head was growing in the back, like it was supposed to, it seemed to me, after the second month, that it was also growing on the sides. My husband couldn’t really see what I was talking about. A trip to Orthomerica to see Laura Plank confirmed my fears. Maysa’s head had been growing all around: in the back AND on the sides. If you go by the numbers from her reports, both her plagio and brachy numbers were worse after 3.5 months of treatment. Joe had just told us that she only had about one month left in the band. It took Maysa 7 months in two DOC bands after that to bounce back and get a better shaped head.
So October was a month I’ll never forget. I had to get a script as soon as possible to get her in a DOC band. Maysa’s ped is not a believer in cranial molding helmets and thinks that Maysa’s head will round out. Thanks to a parent on the Plagio Group, I am able to get a script from Dr. Natovitz who thinks Maysa is still young enough that she’ll benefit from it. I take that script with me, just in case Maysa’s ped doesn’t write me one, but I very well know that in order for her band to have a chance be covered, the script has to come from her ped. So I go and see her one more time and break in tears in front of her out of frustration as I can hear what she is about to tell me: “It will round out on its own, just give it some time Mom…” She then tells me that she’ll send in for a referral but that it will most likely not be covered. I tell her that we are ready to pay out of pocket if we have to, but that we need the script. She sends it in. It is approved. Maysa gets her band on October 31, 2008.
Timing was perfect. The moment Maysa got in her DOC band, her head started rounding out. I literally saw changes within the first week which prompted me to start this blog. I had to find a good way to keep track of her progress and posting pictures without overloading the Plagio Group or my personal calendar. I also thought that it would be a good way for parents who are faced with plagio and brachy to find some information and the simple report of what our experience has been.
I never ever thought in a million years that Joe Terpenning would try to intimidate me and threaten to take legal actions against me for what I had to say about him, his helmet and our experience with them. I will have to post the letter that my attorney wrote to him in reply to his threats. The bottom line is no one can prevent you from feeling the way you feel about someone or something, and as long as you are not lying or making up stuff, you should be fine… Could you imagine the Internet without reviews about businesses? People without opinions about their own experiences? Inimaginable!
Anyway, so prior to the DOC band, Maysa was in two passive helmets from ECA. Two, only because the first one broke after Joe adjusted it. I think that Maysa’s head started popping out in the back during the first month she was in it but then things went down hill from there. What makes me really sad is that we started treatment when Maysa was 5.5 months old and I feel that had she been in a better helmet at that young age, her head would look so much better now if not completely unnoticeable. I still kick myself for making the wrong choice there. Parents out there, do your research in and out and all over again before you start treatment, please do!
So before that, from 2 to 5 months of age, we notice that Maysa only looks to the right and that her head is starting to look “funny”. We have absolutely no idea what plagiocephaly or brachycephaly are. We have never seen babies in cranial molding helmets. We don’t even know that babies can have torticollis. We are absolutely clueless! The ped doesn’t think that she has tort, just a preference to the right side and tells us to reposition her to the left and to stretch her neck to the other side. She never tells us to be agressive. She just says that it will eventually round out on its own. How many of you have heard that so far? I remember that we went home the day of her two month check up feeling guilty that the fact that we let her sleep on her right side caused her head to be misshapen.
This said, I am at home with her for a while and as much as try to reposition her, she always ends up on her back, and slighty on the right, always… Not only that, she sleeps a lot, and every time I put her on her tummy for tummy time, she throws up. As a matter of fact, I don’t even have to put her on her tummy, she’ll throw up even if she is just sitting! It is very frustrating because by 4 months, I also notice that her head is starting to get wider. We switch insurance and I take her to another ped for her 4 month check up. Same story same line. She is fine, her head will round out on its own as she starts to sit up. Between 4 and 5 months, it still looks pretty bad to me and because I will be going back to work soon, I start doing my own research online. Hence, the terms, the different helmets, the critical time to start treatment, the outcome, etc, etc…
At birth, Maysa looked just like any other baby. She was born via C-section so her head looked perfectly round. I will end this by saying why don’t pediatricians check for torticollis at birth? Why don’t they emphasize tummy time? Why don’t they recommend sleep positioners? Why are some still not pro banding at an early age to prevent further damage?
I am happy that Maysa’s head has received great correction from her DOC bands, but I feel sad for all parents after us that are or will be faced with the same ordeal. I just wonder how long before something is effectively done to prevent Plagio.
(As I am re-reading this, I realize that I have skipped through a lot, but like I said at the very start, most of it is in her blog…)
I’ve been meaning to post these pictures for a while but never got quite a round to it. Anyway, the very first one was taken at the hospital when she was 1 day old. The very last one was taken today.
In this first set of six, you’ll notice how Maysa’s head started growing in width in April and then again in June. She wasn’t helmeted yet back then, but looking at her January and March pictures, there was no doubt in my mind that something wasn’t right.
In the next set of six, the top three were taken before she received her passive helmet from Eastern Cranial Affiliates. Look how much fuller her forehead looks in the November and October ones. I just want to mention that on August 9th, I broke the ear flap on Maysa’s helmet after her orthotist heated it to adjust it. While we were told at first that he would replace the helmet, it is not until September 18th that Maysa receives her second helmet from ECA.
In the first two pictures that follow, Maysa is no longer wearing the passive helmet from ECA. Her head has gotten wider than ever and we no longer believe in Joe Terpenning, his helmet or his practice. Maysa gets her first DOC band on October 31st and within the following two months positive changes have finally started to occur. Compare the October pictures to the December one.
Between December and May, changes to the front are minimal. The DOC band is holding her head on the sides. Her head is growing in the back like it should. Therefore, in the following set, she looks pretty much identical in shape.
These are the last three pictures of her May, June, July:
I went back to Cranial Technologies to take the side by side pictures of Maysa’s first, second and fourth DSi side by side.
In this first set of pictures, notice how the light reflecting on the back of her head has gotten bigger. The bottom back of her head looks a little bumpy but that’s because of her curls. We couldn’t tame them very much.
In this second set of pictures, notice how her head got longer, eliminating the wide aspect of it.
The last DSi is a little bumpy again, because of the curls, but notice how much longer and rounder it is in the bottom back.
Compare the first and the last DSi…
Here too, notice how much rounder her head is in the back now.
Alright, I just received Maysa’s last Photo Study from Cranial Tech. Besides the fact that she cried her lungs out, she looks fabulous to us! My favorite shots are the top view and her right profile. The pictures on the left go back to 10/20/08 prior to her first DOC band. The ones on the right were taken yesterday on 5/26/09.
It was rainy, traffic was awful, we got there late and while Maysa was all smiles when we got in, she ended up throwing one of her biggest tantrums by the time she sat for the final DSi. She was still crying and annoyed when they took her pictures and didn’t stop until her clothes were back on. Then, she didn’t want to leave…
Amber, our orthotist, and Cynthia, who took Maysa’s pictures, were great, as usual! They took us right in despite our tardiness. From the clinical anthropometric measurements that were taken 10/20/08 to 5/26/09, here are Maysa’s numbers from start to finish:
We are absolutely positively extremely happy with the results, the service, the people and their professionalism and everything that is somehow connected to the beautiful round head of our little girl. We can’t thank you enough. Even my husband who at first was skeptical is now amazed at the results. Again, thank you!
Maysa has graduated but I am not quite done posting. There is more to come. I am heading back to CT to take some of the side by side pictures of her three DSi. I will be posting those in time. I also have other things to share but I need time to put it all together so patience!
We are spending our last weekend in the band. It’s almost unreal. According to wolframalpha, Maysa has been in under treatment for her plagiocephaly/brachycephaly for 327 days, or 46 weeks 5 days, or 10 months 23 days… I don’t know too many kids who’ve had to wear a helmet/band for such a long time. Maysa has been such a trooper!
Yesterday, we went to the park. I wanted to take as many pictures as I could. There seems to be a little bit of nostalgia settling in already about not having her in her band although we are ALL so ready to see her out of it! Quite contradictory, isn’t it?
Anyway, here are a few pictures of her having fun in her band. She gets it off tomorrow!
Maysa’s graduation from her second DOC band is fast approaching and I have been looking at several of her pictures from when she was much younger. Well it doesn’t get younger than this. Here are two pictures of Maysa below. See how perfectly normal her head looked from this front view: not wide, not asymmetrical, not cony (her hair is sticking up a little, but that’s all), and look at her ears. Where are they? They are so flat against her head you can hardly see them. I will be posting other pictures of her showing how her plagio and especially brachy altered her appearance throughout the months. In the meantime, on the right is a picture of her now. Her head looks wider and her ears kind of stick out, but it is not as bad as before she got treatment through the DOC bands. The DOC bands really helped, I believe. Not only did they stop it from getting worse, it made it so that she actually looks better.
After a beautiful weekend, we woke up to rain this morning. I thought that traffic was going to be bad but we actually got to our appointment with Amber at Cranial Technologies right on time. We are always seen right away and I’ve loved that about them right from the start.
Today was our last “shaving” appointment with Amber. Maysa was extremely playful in the examination room, dancing and all. The rocking dog and the musical flowers kept her entertained. When Amber walked in to remove her band and take her circumference measurement, she kept shaking her head “no”. She always does. Then, when Amber took the band to go shave off some foam for the last time, Maysa wasn’t too happy. It’s the first time that she’s gotten upset at her taking it away from her…
Amber came back and had shaved off the foam all the way to the plastic shell. I truly didn’t think that we were going to get all the way down to the plastic shell before the end of the 16 weeks. I am extremely happy with the results we got, with the fact that Maysa’s head will be free again after almost 11 months, with the fact that no one will ever be able to tell that there was ever anything wrong with her head shape. I am so glad we were able to treat her with the DOC band.
Her next and last appointment is scheduled for May 26th. They will again take pictures of her, do another DSi and hand measurements of her head. I will be posting about that for sure!
Too often people will ask questions as these: Do plagiocephaly helmets really work? Do they really help a baby’s head round out? Are they really worth the price? We know too well that many pediatricians will tell you they don’t. Many will tell you that babies head round out on their own, that they are a waste of time and money. Well, unless you want to gamble it, wait and see and then possibly regret not doing anything about it later, here are two pictures for you that speak for themselves:
I do want to add that I outlined both pictures and trimmed them (including Maysa’s pony tail in the 5-09-09 picture) so no one would be distracted by the background. The DOC band rocks!
Here is another comparison picture of Maysa. On the left, she was 9 months old, awaiting her first DOC band. On the right, she is 15.5 months old, six months into her DOC band treatment. I couldn’t be happier that we switched to the DOC band after the failed passive helmet she wore for 3.5 months. Now, her head doesn’t look so wide above her ears anymore and her ears have straightened up a tiny bit more.
Maysa went in for another adjustment today. Amber saw us and was accompanied by a colleague from the Connecticut Office. Of course, I can’t remember her name. I am so bad with names… We briefly talked about Tim’s report and how neat it was looking at things from a different perspective. She asked me how happy I was about Maysa’s progress. I told her that I WAS happy. After the disappointing results we got from Eastern Cranial Affiliates, and the actual improvement in Maysa’s headshape since the DOC bands, I HAVE to be happy.
I thought long and hard about asking Amber once again about shaving the band on the back right side, but after looking at Maysa’s head from every possible angle I truly can’t see the “5mm” plagio that’s still left. If I can’t see it while knowing what I am looking for, then nobody else out there will either, unless it’s an extremely observant plagio parent or a orthotist. I think that a lot of it has to do with the fact that her head is no longer flat in the back. It is now round. It has a curve that hasn’t been there since she was about 6 weeks old. Amber gave Maysa a little more room in the band by shaving a little more off of it. I believe that she only shaved the middle back right side of it but I am not sure.
Also, looking at one of the top view pictures on Tim’s report, I was able to overlay it on the scan from Orthomerica and draw the two diagonal lines. I came up with the same 5mm diagonal difference, however, her Cephalic Index was much lower. There were two top view pictures of Maysa’s head on the report. One was similar to a top view picture I would take of her in the tub with her hair all wet, and the other one was a slice top view of it similar to the one that I obtained from Orthomerica. In the first top view picture, the worse Cephalic Index I could come up with after several measurements was 87.5%. In the slice view, the worse Cephalic Index I came up with was 91.25%. This is much lower that the 93% I was given in April. So I went back to the graphs from Orthomerica, took a cm ruler and measured the CI of the last three reports I got from them. Here are their measurements and mine:
October 2008 CI:
– Orthomerica -> 98.3%
– My measurements -> 98%
January 2009 CI:
– Orthomerica -> 93.3%
– My measurements -> 92.5%
April 2009 CI:
– Orthomerica -> 93%
– My measurements -> 91.7%
Really, all I did was take a cm ruler and measure the length and width lines on the graph from Orthomerica to obtain the CI. Have you STARband people tried that before? I know that it’s completely silly to be competing with computer technology, but I felt so good being able to measure her CI at 91.7% by measuring her graph. It is also closer to the 91.25% I measured on the picture from Tim’s report from Cranial Tech. I’ll add to that that this is really what I feel her CI is at this point: around the 91% mark.
Also, we have one more adjustment left scheduled for May 11th. In four weeks we have our exit appointment. It will be right around Memorial day weekend, a day to remember.
I haven’t forgotten to post about Tim’s report. It was very informative and allowed me to view things from many different angles and perspectives. I will post more, later, in an update.
Maysa went for another scheduled adjustment this morning. We were seen by Sheryl and not Amber today, she was tied up with a consultation. Sheryl looked at Maysa, felt her head, commented on how nice and round her head looked. She put the band back on to see if it needed to be shaved again. I asked her if it could be shaved on the back right side a little. She said that until “Tim” reviewed her mid DSi she wasn’t allowed to shave the band there. She said that it was a brachy band and that the protocol of those was different. She did shave some more off of the middle back though…
She also told me that “Tim” hadn’t had a chance yet to review the mid DSi but that, as soon as he did, Amber would give me a call. Maybe today, maybe tomorrow. I just want some foam to be shaved off that back right side to bring down her plagio numbers. We are starting week 11. We have 5 weeks left in the band.
8:00 AM this morning, Maysa and I go in to see Amber. She (and the whole world) knows that I regularly take Maysa to Orthomerica for scans and I’ve showed her previous ones before. I briefly explain to her what Laura Plank showed me on the graphs yesterday and I express my concerns to her as to the fact that the numbers seem to say that her plagio has regressed by 3mm while in fact I was hoping they would be at 0mm. We also talk about her Cephalic Index (CI) although that one didn’t get worse. She honestly says that she is not apt or qualified to read the scans but that “Tim” (I forgot his last name) who is their tech guy in Arizona has asked her to go ahead and do a mid DSi of Maysa’s head so he can analyze the data better and comment or act upon it. This is the first time they do a mid DSi so I do feel a little weird about it, but at the same time I appreciate how they are listening to my concerns and going the extra step to help address them.
I need to know that I (and everyone else involved) is doing everything possible to help my little Maysa. Am I a mother or what??? Talking about being a mother, Amber’s daughter also wore a DOC band for a little while so we had a little chat about the fact that she still sees the imperfections in her head shape and that I will always see them in Maysa and others as well. She just wishes that her daughter had as much hair as Maysa. I totally understand that at this point, they can only help and not fix and that sooner or later, I’ll have to come to terms with it all. I know that, but we have 5.5 weeks left in the band. Let’s make the best of it!
I probably won’t hear from Amber or Tim until early next week. How many more gray hair do you think before then? Of course, I will keep you posted!
Alright, so here are the two reports I got yesterday.
The first one shows the comparison between January 5th and April 7th (3 months difference). Just so you know, Maysa got into her second DOC band on February 2nd.
January 5th to April 7th, 2009
The second one shows the comparison between October 13th and April 7th (almost 6 months). Maysa got her first DOC band on October 31st.
October 13th, 2008 to April 7th, 2009
I have to say that I am very happy with the fact that her width has practically remained the same and that her growth has mainly been in her cranial length. According to another report, the first passive helmet she was in did nothing to keep her head from getting wider. The DOC bands did. Thank you CT team!
Needless to say that after getting these reports yesterday, I contacted Amber who scheduled me in this morning at 8:00 AM. That’s coming in another post…
I am still puzzled over this. This morning, Maysa was up first, so I got her ready first. She was in such a good mood this morning, singing, dancing, babbling… Anyway, after changing her from head to toe, I put the DOC band back on her head and put her in her crib while I go and get her sister ready for school. She has the music on and she usually likes looking at herself dancing in front of the mirror while standing in her crib. Well, after maybe 5 or 10 mn, I go back in to check on her and she is holding her band in her hand and waving it at me! The velcro is still closed all the way and I am sure that there is no way she could have opened it. I know that she sometimes pulls down at it to the point where the front of it covers her eyes but for her to pull it completely off!
How did that happen?
*Update*
After talking to Amber, she reassured me by saying that sometimes, as they get older and stronger, babies manage to take the band off without necessarily opening the velcro. She said that she must have pulled at it really hard because her holding points were still holding tight. She also said that she’s had parents who would find the band laying besides their sleeping baby in morning when they went to wake them up. I am not worried. She hasn’t done it again, so far!
We are starting our 9th week in our second band. Once again, Amber shaved off a little more foam off of Maysa’s helmet. You go girl!!! She is growing like a weed and walking so fast now, I think she’ll start running tomorrow. It’s like Spring has sprung. I am so happy for her. Her head is really looking round now and she has been such a trooper through it all, even when things looked glum.
7 weeks left in the band… We see Amber in another two weeks. I see the light at the end of the tunnel.
Today, Maysa is starting her 7th week in her second DOC band. Considering that the band is good for a maximum of 16 weeks, she is pretty much half way done with it. Only 8 weeks left. Wow, she’s been in a helmet/band for 8 months and she now has 8 weeks left… It’s almost unreal but for some strange reason, 8 weeks seems like an eternity.
I am ready for the Spring, for cute dresses, sandals, shorts and tank tops, and for curly hair in the sun and butterfly bows. I am ready for her to enjoy being a little girl like all other little girls. I am ready for her head to not feel so itchy or sweaty when the band is off. I am ready to let her have as long of a bath as she wants to have. I am ready to not watch when the hour is up. I am ready to let her hair dry at its own leisure. I am ready to see her eyes and not the band cover them when she looks up. I am ready to run my hand through her beautiful hair and kiss her head without fear of being bruised. I am ready to start taking pictures of her and not her in her band. I am ready to put it all behind us and spring ahead.
Can’t you tell I am ready!
This said, I am so glad she is still wearing it. Maysa is starting to take a few steps on her own and I can’t tell you how good it is to know that her head is not just rounding out but also safe at the same time. Amber at Cranial Technologies and everybody who works there, we owe you!
Ok, back to the present time. Amber placed a little stocking on Maysa’s head and felt the back of it. She compared it the mold and once again she said that her head had rounded out even more. She left us for a little while and shaved it out a little more. When she came back she said that the texture of the foam felt different and that it took her longer to shave off the foam. I wash Maysa’s hair with DOVE and that’s the only way I can get it to smell good. Also, there are times that when the hour is up, Maysa’s hair is still kind of damp. I don’t know if that has anything to do with it. I asked if the band was OK and Amber said yes.
We actually made it to our appointment half an hour early and were therefore seen about 20 mn early. Amber felt Maysa’s head and said that her head was rounding out really nicely. That only confirms what the way I’ve been feeling about the way she looks. She shaved off the foam a bit more and we are scheduled for another adjustment in two weeks.
Maysa had an appointment yesterday with Amber at Cranial Technologies. She’s been in her new band for two weeks and is doing great. The first week following her initial fit, the band slipped down her eyebrows quite a lot. I constantly had to readjust it. The week after that, it just stopped. It only happens if she pulls at it.
Anyway, Amber drew a square on the foam in the middle back part of the band and said that from now on that was where they would shave off the band. Like I said in a prior post, the foam is really thick and this band is really curved out in the back compared to the first she wore so seeing her shave off some foam out of there is giving me hope that her head will keep rounding out even more.
I caught myself looking at her in the past 3 or 4 days during the hour that the band is off and telling myself how good her head looks to me now. Really. Before, I couldn’t help but notice the sides of her head sticking out and the flatness in the back, especially the back right side. Not anymore. She really looks good to me now and I don’t feel so self conscious for her anymore.
Is her brachy closer to 90% now? How I wish! And, how I wish I could just take her back to Orthomerica now for another scan…
Also, I admit doing something I am not supposed to do: I placed Maysa’s helmet on her 3 year old sister the other day, and guess what? It fit (almost) as well as it does on Maysa’s head. That tells me that if we hit some good growth spurts in the next couple of months, Maysa’s head will really look great once again.
Alright, so I finally had the time to play with and upload Maysa’s DSi 1 and 2 on Youtube. The quality is not as good as the originial, but that’s the best I could do for now. At the start, Maysa is not so happy that I put her down to pick up the camcorder instead and she starts crying. We offered her a few toys but still didn’t want to have anything to do with them. Once I gave her my keys, she was fine…
We had an appointment with Amber this morning. Since the second band that Maysa received on Monday is only meant to treat her brachycephaly, the protocol is a bit different. Monday and Tuesday we checked for red spots every 3 hours and for two nights she had to sleep without the band on. That was strange. Seeing her in the morning standing in her crib was quite a sight. Her hair was going in every opposite direction on her head, you would have thought that a tornado had passed through. Too bad we are always rushing in the morning or I would have captured it on camera.
The appointment went well. Amber adjusted the front part of the band where her name is and we were on our way. We’ll see her again in two weeks on February 16th. The band is sliding down Maysa’s face quite a bit, but that’s normal. It is so much rounder in the back than the first one and there is a lot of room there for her to grow. Fingers crossed…
If I were to make a comparison between the two bands, this is what I’d have to say:
DOC band 1 looks cuter. I liked how it had that cap going over the right side of her forehead. I always liked decorating that spot first. It also fit better right from the start.
DOC band 2 allows me to hold Maysa’s hair in a fountain at the top of her head. It doesn’t get all sweaty after getting trapped under the cap like with the first band. Also, DOC band 2 to is much rounder in the back. Really, if Maysa’s head rounds out that far and that much, there would be no brachy left in her. Another thing I like about DOC band 2 is that the top back of her head is completely covered as in keeping her head from growing upwards in the back.
In short, I like the curvy design of the first band, but I see the great potential of band 2.
Of course, I will post pictures when I get a chance, and yes, I am still working on uploading that video of Maysa’s DSi.
8:00 AM this morning Maysa had an appointment with Amber. We went to get her second DOC band. I am so excited for her, I couldn’t sleep last night. Well this time, I brought the camcorder and the camera. Amber was kind enough to let me videotape and take pictures of the two DSi Maysa has had and now, I get a chance to post them on her blog.
For now, I can only post the pictures. I’ll upload the video later when I get a chance to play with it and edit it a little:
DSi 1 and 2 – Top View
For some strange reason, the two DSi side by side don’t show, in my opinion, how much Maysa’s head has grown in length. However, it has and the pictures below will show it better.
Now, you’ll agree with me that this angle shows how her head has filled out at the base of her skull. The reflection of the light and the shadow make it so obvious. Also, notice that her head seems narrower.
DSi 1 and 2 Front View
In this one, you can also see how her head doesn’t look so wide. Her head seems to have grown upwards which in turn balances things out.
DSi 1 and 2 Left Profile
In this one, you can see how her head has filled out at the base. That’s remarkable, I think! Look at the one below. It is my favorite…
DSi 1 and 2 Right Profile
Ok, so now we are talking. Bye bye flat spot on the right side. I am so glad to see you gone. I won’t miss you either.
So now, let’s hope that the second band, which looks different, will bring even more positive changes to my little Maysa’s head.
We had our appointment at Cranial Technologies today in Annandale, VA. Maysa has been in her DOC band for 11 weeks now. A second one was approved by our insurance, Kaiser Permanente, and looking at the progress that she’s made thus far, why not go for a second one? I had really wanted to videotape Maysa’s second DSi and brought my camcorder with me. My husband had assured me that it was ready for filming. Well, once I got there, I realized there was no disk inside! Arrrgh… I did feel a bit silly!
Maysa did cry during the DSi. Having that little sock over her head wasn’t her thing, plus, she wouldn’t sit up which made things a little harder. Her long hair was also hard to tuck in under the sock. Her sister, Soraya, came with us today and was really good. She did tell me that she felt sad, though, to see Maysa cry. How sweet! Amber and her team got it after a second try and the drama was all over.
I really liked looking at the comparison between the two DSi. Her head has rounded out quite a bit (ok, a lot) at the bottom. The right profile shows it the most and I couldn’t be happier. The top view also shows that she has gained some length. Really, this whole experience with Cranial Technologies has been fantastic and so uplifting.
Our fit appointment is scheduled for February 2nd. Amber suggested that I bring my camcorder (with a disk this time) and that I could record the difference between the two DSi on their computer screen. I’d love to do that and share it here on her blog. I’ll just have to make sure that the camcorder IS ready for filming this time.
Would you believe that Maysa was in a previous helmet from another company for 3.5 months in the picture on the left? I took her out of it for good reasons. Look at her head width back then. It looked so wide and so deformed. That helmet didn’t seem to work for her. Looking at her didn’t spell progress, in my opinion, and neither did the numbers on the graph.
Look at her now, 10 weeks into the DOC band. It’s amazing how more proportionate her head looks… It is too bad we didn’t switch earlier, yet I am glad that we did switch when we did.
I am so happy; I can’t find the words to express myself! Kaiser Permanente is now covering our second DOC band in full after initially sending us a denial letter in the mail.
Here is the story:
On December 31st, Kaiser sends a denial letter for a second DOC band stating that “insufficient clinical information has been provided to determine if the requested service is medically indicated. Current clinical information that documents Maysa’s history, examination findings including the current measurements pertinent to establishing the medical necessity of DOC banding that reflects the extent of her response to prior treatment, is required in order to establish whether the requested service is a covered benefit and medically necessary. Therefore, A Durable Medical Equipment (DME) item, DOC banding/cranial remolding banding, from Cranial Technologies, Inc., is not a covered medical benefit, at this time.”
The letter also gave the name of the doctor who denied the claim, Dr. Gregory Alexander, his phone number and address.
Another paragraph also states that our pediatrician could call a number to discuss our case and request a reconsideration on our behalf.
First things first, I try to call Dr. Alexander and leave two messages on his voicemail but I never hear back from him. The third time I call, I get him on the line. He explains to me that the reason why he denied the claim is because he couldn’t read the numbers that CT faxed him. He also said that he asked for new copies but that he never heard back from them. I then contact Sandra Vatalaro. She tells me that Kaiser never tried to contact them. She then emails me all the paperwork she faxed them. I print them out and fax them to Dr. Alexander along with the scans of Maysa from Orthomerica. I attach to that a letter explaining things a bit further.
I also contact my pediatrician via email and ask if she would request a reconsideration on our behalf. I also fax her all the documents I faxed Dr. Alexander and then I wait. The letter said that I should receive an answer within 10 days of submitting the request.
Today, 01/13/2009, I get a call from Tammy, Dr. Alexander’s assistant, with the news that after reviewing the documents I faxed them, that the doctor has approved a second DOC band for Maysa.
Alright, I had a minute to scan Maysa’s reports this morning and here they are:
The first one was taken on 6/24/08 during our initial evaluation, when we were still trying to determine what she actually had and if she would benefit from helmet treatment or not.
The second one was taken on 10/13/08 back when I had doubts about how well Maysa’s passive helmet from Eastern Cranial Affiliates was working for her. I let you be the judge, but in my opinion and looking at the report itself, the helmet didn’t do anything about keeping her head from growing on the sides. It didn’t correct her plagio at all either. In fact, Laura Plank from Orthomerica, explained to me that looking at both scans, both her brachy and plagio got worse.
The third one shows how she’s progressed since she’s been in the DOC band and since we’ve done CST. Her plagio is now within normal range at 2.1mm and her brachy has gone down from 98.2% to 93.2%.
There you have it. Love the DOC band and love the Starscanner a lot!
As happy as I am to see how Maysa has improved in her band, I can’t help but feel sad deep inside for the time we wasted in her passive helmet and for what I see as not only a lack of improvement but regression as well. According to her third scan taken yesterday, her plagio has gone down from 8mm to 2.1mm, and her brachy from 98.2% to 93.2%. She’s only grown about 1cm in circumference between 10/13 and 01/05 but basically her asymmetry is gone.
What am I sad about then?
Well, I am sad because while in her passive helmet, and according to the numbers on the graph from Orthomerica, she grew 3.5cm in circumference, which is huge, yet her plagio went from 6.4mm to 8mm. Going by her scan again, her brachy also got worse from 97.9% to 98.2%. She stayed in that helmet for 3.5 months. You always hear about such great results in active bands and I can’t help wonder what the results would have been had she been in a DOC band or even a STAR band back when she started treatment at 5.5 months. Could she have seen perfect correction? That’s what makes me sad and sick all over again: regrets, regrets, regrets…
With a cephalic index of 93% Maysa still has brachycephaly (although mild, Laura Plank said) and in my opinion could benefit from another band. I so want her to get below the 90% somehow. Why should we stop trying now while things are going so well? If she’s improved by 5% after nine weeks of treatment, couldn’t we see another 5% of improvement in another band?
I know that her growth is slowing down but she is not quite 1 year old yet and so many babies start at that age and even later with good results too. She doesn’t mind the band. Family is supportive and I could care less what people say or think when they see her in her band, really.
I will be posting her three reports tomorrow once I get them scanned…
I took Maysa to her third scan on Monday to Orthomerica in Columbia, MD. I couldn’t wait for my 2 o’clock appointment to come. I made it there on time. There was no traffic, and Maysa slept for the entire hour it took me to get there. We went in. She scanned her. She showed me her report.
Thank you for putting my mind at ease. Although I have known from the start that the DOC band was doing what it’s supposed to be doing, I just had to see it on paper in numbers and shape.
I took Maysa to Cranial Technologies on Friday. Her older sister, Soraya, came along. She is a restless, talkative three year old and I didn’t get to interact much with Amber. In short, a little bit more was shaved off of Maysa’s helmet. Amber also told me that depending on her future growth she has another one to two adjustments left before she is out of it. I doubt if Kaiser is going to pay for another DOC band so we have to make up our mind soon on whether or not to go for a second one.
I am going on Monday to Starcranial Orthomerica in Columbia, MD to get another scan of her head. I can’t wait to get more accurate measurements.
Also on Friday I took my oldest to her 3 year check up and with me I took Maysa’s progress pictures from CT to show the pediatrician. She barely glanced at them and acted as if she really didn’t care to look at the progress she’s made. She is one of those who don’t really believe in helmet treatment and who told me from the start that her head would round out on its own. She only gave me a prescription the first time because I broke down crying out of frustration back in October when things were looking grim after many months of trying to do something about it to no avail.
Needless to say that I am ticked off. There is something wrong with the pediatricians denial and non-chalence about treating plagiocephaly across the country, I wonder if they get penalized for prescribing helmet treatments to patients!
I will be posting again after Monday’s appointment…
Maysa has been wearing her DOC band for a little over 7 weeks now and I am so happy with the results so far. Yesterday, I took her to Cranial Technologies for another check up and to get her progress pictures and measurements taken. I wanted to post an update on her blog right away but I only got her photographs this aftenoon via email. The measurements, although manual, look really good. According to Amber’s measurements, her cephalic index (CI) is now down to 90% and her head width actually went from 143 down to 142. Again, the measurements are manual and 1mm is no big deal, but at least her head hasn’t gotten wider.
Anyway, her right profile shows her progress the best. In the first set of pictures below, you’ll see her right profile from before and while in the DOC band. In the second set, you’ll see the same pictures but without the pony tail. I had to trim it so I wouldn’t get distracted by it. I can’t stop staring at them!
Right Profile with Pony Tail
Right Profile without the Pony Tail
I did the same thing with her left profile pictures. Removing the pony tails helps see the progress she’s made a little better. In the pictures below, the progress is a little less obvious but it doesn’t surprise me. When she originally started to wear the band, there was space where I could slide in my finger towards the bottom left side of her head. It has filled out in the past 7 weeks she’s been in the band and Amber never shaved anything off of that side. I think that her goal is to even out the two back sides of her head first (correct the plagio) and then allow for more growth in the back to correct her brachy.
Left Profile with Pony Tail
Left Profile without the Pony Tail
Anyway, I couldn’t be happier. Amber told me that she would probably be in it for another 5 to 6 weeks. I really would love for Maysa’s CI to go down to 85% or below. If we get to that point, I would be beyond myself and forever thankful to Cranial Technologies. Below are all of the progress pictures Cynthia emailed me.
Maysa's Progress Pictures from CT
We have another appointment with CT on 01/02. I will also be taking her to Orthomerica in Columbia, MD for yet another head scan on 01/05 (I just have to be able to compare her head shape now with the scan she received on 10/13 using more accurate tools). On 12/29, we also have an appointment with our DO, Frances Demmerle, for another Cranial Sacral Therapy. Phew! Happy Holidays!
Ok, so I was finally able to find two pictures that I can put side by side and compare. What do you think? Is it still an optical illusion or does her head look less round above the ears and consequently less wide?
Right after we saw Amber at CT on Monday we took Maysa to Frances for another CST appointment. She did what she usually does: she uses her hands and puts pressure on her head, back, hips and rib cage. She said that Maysa still felt quite tense to her and she would like to see her in another two to three weeks. I was hoping that we were done but then again, Maysa’s head has been reshaping so well. Is it strickly the DOC band? Is CST truly helping? I will never know for sure, but I am trying hard to use all options available.
One more thing, Maysa’s stress moves have come back full force. It’s quite a site and I really don’t know what to make of them. She crosses her legs at the ankles, if she is sitting on her high chair, she holds on tight to the its arms, she tightens her jaw shut and she stresses… If she is on the floor or in her crib, she’ll hold on to something or just puts her fits together and look so stiff.
I don’t know what it means but it doesn’t seem right.
My husband and I took Maysa to Cranial Technologies on Monday for another check up. I gave Amber the headsickle back to Amber and asked her why is it that the band didn’t quite fit properly on it. First of all she told me that I shouldn’t be putting it on the headsickle. Apparently it weakens the band and consequently makes it less effective. I didn’t know. Lesson learned. I won’t do it again. I promise. This said, I did post some pictures under a former post showing how the band looks on the head mold. You can clearly see that the side where the strap closes looks odd. The top view also shows how the band is not snug against the mold.
In short, she also explained to us the band is actually made from a different mold and that this wasn’t a good way of looking at things. What she said did make sense and I feel horrible for trying to make the band fit on the mold. So if you are thinking about doing this at home, just don’t.
On a happier note, she also told us that Maysa was making faster progress than anticipated for her age. She told us that she would probably not be in her band for more than an additional five to six weeks which would bring her to a total of two and a half months in the band. We expected her to be in it for four months! We have mixed feelings about it. We know and can see that she has made good progress. Her right profile shows it the most. Also, looking straight at her, her ears don’t look bent outwards anymore as if while the band held her head on the sides right above the ears, her facial features from the sideburns/jaw down have expended in width which in turn makes her head look more proportionate.
I know for sure that the band is working for her but I also believe that Cranial Sacral Therapy has something to do with her making such good progress so quickly. This said, I don’t think that she is within normal range yet or even close. CT will take progress pictures and measurements on 12/22/08 for us to look and compare.
Unless she miraculously rounds out completely and gets within normal range, I am almost already preparing myself for a second band. My husband is not, of course…
I took Maysa in yesterday to Cranial Technologies because she had a pink spot on her back left side and Amber wanted to take a look at it. It turned out to be nothing to worry about, which is a good thing.
In the process, we talked about her progress, how to measure it, and how to take pictures. To help me with that, she offered that I take Maysa’s headsickle home with me. I was a bit surprised. I didn’t think I could, so when she said “sure of course”, I gladly took it. I have to be very careful though because she warned me that it could break.
Anyway, the first thing I wanted to do with it is put the band on it to see how different the fit would feel. Well, the band does not fit properly at all. I cannot close the velcro the way I close it when it’s on Maysa’s head, and it’s been shaved twice already so in my opinion, there should be more room. I am a little confused by it because I had seen somewhere else online how some other parents had been taking pictures of their little ones headsickle in the band throughout the process to see in which way progress was being made.
Shouldn’t the band fit on the headsickle? I will take pictures tomorrow when I take the band off of her head and put it on the headsickle to show you what I am talking about.
Maysa's Blog 
