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Posted by mymaysa on September 27, 2010
We often read on plagio boards how plagiocephaly and brachycephaly can affect vision among other things. Has anyone noticed such problems in their child? While Maysa’s eye doctor doesn’t seem too alarmed yet, I can’t help but think that her exotropia might in some way be linked to her plagio/brachy history.
For those of you who don’t know what exotropia is, it is a form of strabismus where one or both eyes tend to look outward away from the nose. Maysa does that on occasion, if she is looking away, day dreaming, or thinking about something. Maysa is not one to look at you in the eye if she is talking to you. She will get your attention and once she has it will start talking to you without looking at you. Often, when she does that, she will show signs of exotropia.
I never gave it too much thought. We all day dream, right? And I often see people with the same look on their face (especially during long meetings or while waiting in a waiting room…). However, her daycare provider brought it up to my attention, so I took her to the eye doctor for a consult.
He was able to see what I see and said that she seems to do it more with her left eye over her right one, but that if prompted to, she could easily refocus on one object. He didn’t see any weak nerve or reduced vision. Heck! She could identify pictures that I couldn’t during the examination. He let us go without any treatment (yet) but wants to see her in another 3 or 4 months.
There seems to be some studies out there that link plagiocephaly to strabismus. Anyone out here with a child who is showing signs of it? One I read says that since by 6 months most of babies vision is developed, skull malformation at that age could be a contributor to strabismus.
There will be a follow-up on this one…
Posted in exotropia, post DOC band, strabismus | Tagged: brachycephaly, plagiocephaly, exotropia, strabismus | 3 Comments »
Posted by mymaysa on June 21, 2010
For the first time over the weekend, while Maysa was going down to sleep, tossing and turning as she always does before she finally drops, she actually sat up on her bed and said to me: “Mommy, can you fix my hair. It bothers me”. You guessed it. I had her hair in a ponytail that wouldn’t budge. The same ponytail that kept her off her back for about a year now.
I quickly took it apart and fixed it a little higher on her head. When I asked her if it was better, she said “Yeah”. Within 5 to 10 mn, she was fast asleep. I, however, kept thinking about it. It is hard to sleep on a tight ponytail. I say so because I couldn’t. For about a year post graduation, she’s had to (a little less lately, but still). Last night, I kept telling myself that her head has kept improving, that while she can’t comfortably sleep on her back because of it, she can still sleep on her tummy and sides and sleep the whole night through. I guess I wish that it never bothered her really, but her saying so made me feel a bit sad.
So this morning, looking at her head once again, I can’t tell you how happy I am with the way it looks. She has come a very long way and I still believe in further improvement. I guess, soon enough she’ll figure out how to loosen that ponytail and it won’t be an issue anymore.
Just sharing along the way.
Posted in post DOC band | 2 Comments »
Posted by mymaysa on May 26, 2010
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!
Posted in Pictures, doc band, eastern cranial affiliates, post DOC band | Tagged: brachycephaly, plagiocephaly, doc band, Maysa, Cranial Technologies, Pictures, ct, measurements, asymmetry, cephalic index, 531, passive helmet, comparison, ECA, kidcap | Leave a Comment »
Posted by mymaysa on May 13, 2010
… I know.
Posted in Maysa, Pictures, post DOC band | Tagged: Maysa, Pictures | 1 Comment »
Posted by mymaysa on May 13, 2010
I just want to share with the world what a well fitting clear helmet should look like. If you look at some of my earlier posts, and compare it to this one, you’ll notice that I am not only comparing apples to oranges. I am comparing apples to bananas…
Baby Miguel was back here last week. His daddy and mommy brought him. I didn’t know they were coming again and I didn’t have my camera, but we figured out something else using a Flip camera. So, here is how his helmet looks like on him. Now, look further down and see how Maysa’s helmet from ECA looked like on her. Apples and bananas, I tell you!
I enjoyed seeing Baby Miguel again and cannot get over his composure. He has it all together, it is amazing! Oh! and yes, his head is reshaping beautifully. So happy for mom and dad, and Baby Miguel of course…
On a somewhat similar note, a co-worker’s daughter brought in her son yesterday. They have been suspecting that he has a “flat head” as well but weren’t sure. I actually got to meet the other little guy and fair enough, he showed textbook characteristics of brachycephaly to me. I gave mom lots of advice and recommendations as the ped she saw said that it will round out eventually… I know the story too well, I told her.
Posted in Orthomerica, Pictures, Star Cranial Center of Excellence, eastern cranial affiliates | Tagged: brachycephaly, comparison, ECA, Laura Plank, Orthomerica, passive helmet, Pictures, STAR band, Star Cranial Center of Excellence | Leave a Comment »
Posted by mymaysa on May 3, 2010
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- Maysa – Mount Washington – Pittsburgh, PA
Posted in Maysa, Pictures, post DOC band | Tagged: Maysa, Pictures | 6 Comments »
Posted by mymaysa on April 12, 2010
I saw Baby Miguel on Friday. His daddy brought him to work. Miguel is 6 months old and has/had craniosynostosis. Despite his parents concerns, he went undiagnosed by his pediatricians for a long time. When his daddy first told me that he was going to have to wear a helmet, the clear type, I got worried. Then he explained to me that he didn’t have plagio or brachy and that post operation, he would have to wear one of the clear ones from Starcranial in Columbia, MD. I felt much better then. I have nothing but good things to say about that place and the people who work there. I knew that as long as everything went well with the operation, he would be in good hands with Laura Plank and Orthomerica.
So, it’s been just about a month since Miguel got his helmet. When I saw him on Friday (unexpectedly), I had to hold him and give him an extra special hug. Of course, after drooling over his cute little face and chubby puffy cheeks, I checked out his helmet. It was a beautiful helmet. The shape of that helmet was flawless. It camed down just barely above his eyebrows. The contour around his ears WAS traced right around his ears. It came ALL THE WAY down to the base of his neck. It was beautifully and perfectly ROUND in the back and just the right width and length. A perfect ratio! It also had a few holes and the pads (two at the sideburns and two in the back were extremely soft and clean).
Really, I almost cried I was so happy to see him wearing such a well-fitted helmet. I haven’t seen Miguel’s latest scan. Daddy keeps forgetting to swing it by, but from what he told me, he’s made great progress already. To tell you the truth, when daddy took off the helmet for me to look at, Baby Miguel’s head looked pretty darn good to me! He needs to grow in width a little more, but considering his age, I have absolutely no doubt that nobody will ever be able to tell that he’s ever had surgery or that he had to wear a helmet (for a year, they are saying).
I’ve never given a really good review about passive helmets, namely Maysa’s passive helmets (kidcaps) from ECA. However, thumbs up for the one from Starcranial in Columbia, MD. I wish I could put the two side by side. It’s like night and day. Maybe I’ll ask daddy to let me have it for a photo shoot once he’s done with it…
Posted in Orthomerica, Star Cranial Center of Excellence, eastern cranial affiliates | Tagged: Laura Plank, Orthomerica, columbia, maryland, Star Cranial Center of Excellence, 531, passive helmet, comparison, craniosynostosis | Leave a Comment »
Posted by mymaysa on February 25, 2010
A post like this is long over due but I owe it to Amy from the AllAboutPlagio Yahoo group. So Amy and everybody else who wonders what the kidcap from ECA looked like on my Maysa, look at this and tell me what is wrong with these pictures:
Maysa had a combination of brachy and plagio which means that her head was too wide, not long enough in the back and that it was also asymmetrical. Maysa’s head was wider right above the ears. The entire back needed to pop out and the back right side needed to fill out more than the left to reduce her asymmetry.
The pictures below were taken about a week after she got her kidcap:
  
You are probably wondering about that big space between her left ear and the helmet. You are also probably wondering about how uneven it looks in the back and about how high it sits on her head looking at the back also. Doesn’t look like it was made for her does it?
Here is another one taken at two weeks:
Another one at three weeks:
Not much different, huh?
Here are a few other shots taken after one of the sideburns broke (Joe Terpenning had heated it because it was digging into her cheek and the next day it broke). It took over two weeks for her to get a new one:
 
Mind you, we expressed our concerns to him but he always assured us that she was making good if not great progress. As for the big gap above her ear, he said that there was one big bone plate there and that there was no way her head would just grow out in that one spot because on either side her head was covered by the helmet.
Also, the fact that it was sitting high was no concern to him. He would say that the more she grew, the more the helmet would go down…
What a bunch of non-sense! Shouldn’t that have been my red flag? Shouldn’t that be everybody’s red flag? I am not an expert by any means but those pictures speak volume to me now and a competent orthotist should be able to tell you that there is more than one thing wrong with these pictures and act accordingly.
Posted in Pictures, eastern cranial affiliates | Tagged: 531, brachycephaly, ECA, helmet, kidcap, passive helmet, Pictures, plagiocephaly | 3 Comments »
Posted by mymaysa on January 28, 2010
There are a few things you all need to know before you look at the reports:
- First of all, we didn’t see Laura Plank so the reports that I have do not reflect a comparison between now and her April scan.
- The orthotist we saw was really nice and compationate and we actually didn’t have to pay a penny for the time he spent with us or the reports he handed us.
- Right before he scanned her (and Maysa was screaming her lungs out and mad at the world) he told us that because of the thickness of her hair we were most likely to see a flat area on the scan. To tell you the truth, I thought he was going to say that he wouldn’t be able to scan her BECAUSE of her hair.
- To reassure me that her head wasn’t flat at level 3, he also gave me a level 2 report that shows how round it is right below level 3. As you can see below, there is no way (anymore) that her head could be that flat at level 3 to then be round again at level 2
- Also, remember that Maysa’s flat spot was never on the back left side but rather on the back right side. So, in other words, ignore the flatness you see in the level 3 report.
- At home, when I overlaid the scans (January and April), I found that the January scan was a little bit off-center, a little too much to the right and that is probably why her right side looks fuller than her left in that one.
Now, here are the reports:
Level 3 Report:
So, first of all, I removed some info at the top and added in the “Shape 2″ column her numbers from the April scan. Again, as you can see, she grew over 2cm in circumference. She only grew about 1mm in width and almost 10mm in length. Her plagio also got slighty better, although in real life it looks even better, and most importantly her cephalic index is down to 88.4% at this level (Level 3).
Now, in the Level 2 report below, you’ll notice how much rounder her head is in the back. Non of that non-sense flatness that you can see in level 3:
You might also be wondering why her ears look funny. That is because her hair was sticking out a little on the right hand side. The cranial breadth changes at that level but the orthotist told me that it was mainly because of the ears that show at that level.
One thing I am still not sure of is where her head actually grew in length. When I overlay the April and the January scan, most of the growth seems to have happened in the front and a little bit in the back. I never thought that her head would grow that much up front. It is hard to say because the center point of the two scans are a bit off center. That is really matter: No. What matters is that we have an oval looking head that is not flat anymore with such little asymmetry.
Can you believe that the report below belongs to Maysa?
Posted in Maysa, Orthomerica, Pictures, post DOC band | Tagged: brachycephaly, plagiocephaly, Maysa, Pictures, Laura Plank, Orthomerica, starscanner, measurements, asymmetry, cephalic index, circumference, 531, Virginia, report, comparison, ECA | 5 Comments »
Posted by mymaysa on January 27, 2010
I can’t wait another day to start blogging about what happened yesterday. Eight months ago, yesterday, Maysa graduated from her DOC band. Eight months ago, yesterday, Maysa was 16 months old and not much more could be done about what was remaining of her plagio/brachy. Eight months ago, yesterday, I was happy with the results but had wished for a little more. According to Maysa’s last scan from April 2009, her CI was at 93% and we were told not to expect much more…
That was over eight months ago.
Yesterday, Maysa went for one more scan, and what we got on her report this time was far better than what I expected, although if you look at my post The ruler, you’ll notice that I was actually right on the dot as far as what I thought her measurements were. The bottom line is that at level 3, her CI is now at 88.4%. That is a drop of 4.6% eight months after treatment in a child that is now 2 years old. No CST, no other alternative treatment, simply a faithful pony tail at night and no more back to sleep.
I will be posting her reports in another post, but for now, here are her numbers from April 2009 to January 2010:
Circumference: 500.8 to 521.9
Cranial Breadth: 152.7 to 153.8
Cranial Length: 164.2 to 174.1
Diag 1 – Diag 2 = 5.1 to 4.7
Bottom line is that her head barely grew in width, she grew almost 10 mm in length and her plagio improved by 0.4. We are finally in the 80′s and to tell you the truth, I don’t see any asymmetry anymore, front or back…
Posted in Uncategorized | 3 Comments »
Posted by mymaysa on January 23, 2010
Petra asked me some really good questions on Babycenter and the best way for me to answer them is by creating another post. Here is what she said in her post:
“Leila, Maysa’s head seems to be doing better and better. I am curious as to how you feel about the growth after the helmet came off. Do you feel that her head has grown equally all around or more to the back than her sides? And if so how has she been sleeping since the helmet, sides, stomach or on her back?”
In my previous post, the ruler, I posted a comparison picture of Maysa’s head from the time her plagio/brachy looked at its worse to the way it looks now. In the one below, the comparison is between the way her head looked two weeks prior to graduating from her 2nd DOC band and now. Notice that the horizontal rulers on both pictures indicate the same width. However the vertical rulers indicate that her head has gotten a tidbit longer since May. Overall, it also has taken on a slightly different shape. Her ears have moved back.
So in the picture taken in May 09, I come up with a cephalic index of 92%. In April, her report from STARcranial showed a cephalic index of 93%, so pretty close…
These are my own pictures and my own calculations and might be totally wrong for all I know, but I truly believe that things have slightly improved since the band came off. I do have to say that she always sleeps with a pony tail right in the back to make it uncomfortable for her to sleep on her back. So to answer the rest of your question, Maysa, who used to be a back sleeper even while in her DOC bands, only sleeps on her tummy now or on her sides, hardly ever on her back.
Also, while her head is still wider than that of her 4 year old sister, it doesn’t jump at you anymore, nor does the fact that her head is not as round as most little girls her age.
Posted in Maysa, Pictures, post DOC band | Tagged: brachycephaly, Pictures, measurements, cephalic index, comparison | 3 Comments »
Posted by mymaysa on January 23, 2010
Like I mentioned before, I don’t take that many CT style pictures of Maysa’s head anymore. We’ve been done with treatment for months now and honestly, her head looks so good, I don’t think about taking that kind of shots anymore. Yet, I can’t help but wonder what her measurements would be today. So, I pulled out one of her worse top view picture from July 08 and compared it to one taken three days ago (January 10). I then overlayed a ruler on top of each picture (vertical and horizontal) and did some math. Here are the pictures I’ve been comparing:
So, just so you know, the measurements on those rulers are not accurate. In other words, in the July picture, her head is really not 92 mm wide, nor is it 104 mm long in the January picture. What I actually did was try to use those numbers on the rulers to get an approximate calculation of what her cephalic index was back in July 08 and what it is now a year and a half later.
So:
For the July picture, 92 mm / 95 mm = 96.5%
For the January picture, 92 mm / 104 mm = 88.4%
I also want to add that while I came up with a CI of 96.5% for the July picture, it was most likely worse (around 98%)since the middle and bottom back part of her head at that time were further in compared of the top back part of her head. I also think that the CI I came up with for the January picture is probably closer to 90%.
Either way, look how much longer her head has gotten, thank God and the people at Cranial Tech for making this happen.
Posted in Pictures | Tagged: brachycephaly, cephalic index, comparison, Cranial Technologies, measurements | 3 Comments »
Posted by mymaysa on January 20, 2010
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…
Posted in Birthday, Maysa, Pictures, doc band, post DOC band | Tagged: brachycephaly, plagiocephaly, doc band, Maysa, Cranial Technologies, Pictures, ct, asymmetry, Birthday, Virginia, comparison | 3 Comments »
Posted by mymaysa on January 15, 2010
My youngest princess just turned two today. While she had a blast at her Gymboree party with a bunch of friends and while she got to blow her two candles and eat cupcakes and pizza with them, today, in the intimacy of our home, we had a fun time playing some fancy dress up before blowing out our official 2 year old candles, again…
We pulled out our favorite princess attire. Cinderella was a hit once again and it’s a good thing we have two of almost everything in this house. You are beautiful, you are bright, and you are sweet for sure. Mom and Dad can’t kiss and squeeze you enough and you don’t mind it a bit because as soon as we stop, you say “again”. We love you so much!
Just about three weeks ago, you started speaking in full sentences and it has been a delight listening to you. Some of the funny things you’ve been saying…
Teeping Booty = Sleeping Beauty (cracks your sister up)
Macaloli = Guacamole
I lob you Daddy = I love you Daddy
Dooty potty = Dirty Potty
Rite poopy = Rice Crispies (cracks your sister up too)
More nope peeze = More milk please (go figure!)
No like it wahger = I don’t want water
Go Pis = Gold Fish
The list is long but I just thought I ‘d write what’s coming to my mind at the moment. You also know all of your alphabet, upper and lower case. You know your numbers up to 10. You dance all the time and know all of your sister’s ballet moves. You love books and Elmo…
Here are a few of my favorite pictures taken of you and your sister in your Cinderella dresses around your birthday cake.
Girl Talk
A Little Dance
A Smile 
Singing Happy Birthday 
Blowing out Candles with a Little Help from Big Sister 
Gorgeous, I know... If you care to look at a few more pictures, click on the scrapbook slideshow below:
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