Maysa's Blog

Our journey through plagiocephaly and brachycephaly

Front Page Star… Maysa!

Posted by mymaysa on July 13, 2009

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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…)

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4 Responses to “Front Page Star… Maysa!”

  1. Lisa said

    I love the pictures, and thanks for sharing your story! My son was just started in a Starband. He is 5 months old. I love how you have decorated Maysa’s helmet. Can you give me any advice on how to do this? I have tried stickers, but they don’t seem to stay on well. I would appeciate any name brand if you remember them!

    My best to you and your family. Maysa is a beautiful little girl, and your story gives me hope for the future for my little guy!

  2. Cris said

    Thank you so much for creating this site! I’ve come back to it many times in the last couple of weeks. My family and I are stationed in Germany and my 9 month old daughter is scheduled to be fitted for a cranio helmet with Dr. Blecher here. I was surprised that I needed to twist his arm a bit for him to agree to put her in a helmet. Her cephalic index is .93 but it’s fairly even with only 4mm of asymmetry. I have the same worry about Elena’s head shape as you have about Maysa’s. Elena’s head is definitely getting wider and no amount of repositioning has worked. After reading your site, I’m a bit worried that we’re using a passive helmet instead of an active band, but in Germany I think this is our only option. Have you ever heard of the cranio helmet? Do you have any advice you could share? I tend to think that it’s worth a shot even with a passive helmet because her head is just getting wider, making her eyes look close together. 😦 I hope she doesn’t hate me for not dealing with this sooner — her pediatrician kept telling me it would even out.

    Thanks again, so much, for writing this!

    Take care,
    Cris

  3. mymaysa said

    Hi Cris,

    I am glad that you are finding this blog useful. We’ve got to find a way to spread the word and raise awareness about plagio/brachy, right?

    I think that at 9 months of age, and with a CI of 93%, banding is definitely worth it. I don’t know what’s the headshape of your daughter now and it might never look perfectly right to you but it will hopefully look normal to most people out there. Also, the band should help round out her head in the back which is the main issue with babies that have brachy. Repositioning is very hard in regards to brachy, so going the helmet route is probably you best option at this time.

    I did a quick search for the “Cranio Helmet” and it looks very similar to the DOC band. Are you sure that it is a passive band? Maysa’s passive band was made of a clear material with no foam inside. Nothing was ever shaved off of it. The Cranio Helmet seems to have foam that can also be shaved off. If that’s right, then it should work more or less like the DOC band and it should also be an active band.

    Also, I recommend that you join the Yahoo Plagio Group. I just did another quick search for “Blecher” and several posts came up from other parents who’ve had to deal with him in Germany. The Yahoo Plagio Group has been the greatest support for me and I think it’s a great resource.

    Right before she actually gets her helmet, try to take pictures of her the way Cranial Technologies does. There were really hard for me to take but I am so glad I did because sometimes you forget how bad it was/looked at first until you are able to compare them to pictures that show progress. Do it periodically, at least every two weeks and the top, profile and front pictures are the best.

    How can your daughter ever hate you? You did and are doing what you think is best for her. I personally think that a good number of peds need to be better informed themselves on plagio and brachy and that it should be mentioned at the hospital, after birth, to every parent… How I wish I was someone a little more affluent right now!

    Finally, I would love it if you kept me posted on Elena’s progress in her band. I know she’ll do great, yet never refrain from being her best advocate.

    Leila

  4. mymaysa said

    Lisa,

    Your son should see wonderful results in his STARband. He is only 5 months old and the band is good for 6 months, so plenty of time to catch some good growth spurts.

    I never had to gutts to paint Maysa’s band, so I only used stickers and sometimes rub-ons for her name in the front. Some stickers lasted up to three weeks, others were off by morning time! The brand name of the ones I liked the most was I think “sticko” or “stickos”. I bought them at Michaels. I know that some people use modge podge on their stickers but I never had. I actually liked changing them every two weeks or so.

    I hope you see great results fast.

    Leila

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