Maysa's Blog

Our journey through plagiocephaly and brachycephaly

Archive for July, 2009

18 months old today!

Posted by mymaysa on July 15, 2009

I took Maysa to her 18 months check up this morning.  She was as happy as happy can be until the shots that is.  It looks like she is doing great.  Her ped didn’t mention one thing about her plagio/brachy and neither did I.  Instead we focused on what we call her “stress moves”.  In a much earlier post, I had written about how Maysa gets tense, crosses her legs at the ankle, brings her arms close to her chest, and gets stiff.  She also breathes hard when she does that.  If you let her, she’ll do it for 15 minutes or more.  I don’t really know as we usually get her out of it after a few minutes.  It concerns me quite a bit.  She has been acting like this since she was about 4 months old.  While there are times when we think it’s a thing of the past, it always seems to come back.  The ped gave us a referral for an EEG.  She wants to rule out the possibility that she is having seizures…

On the charts, she is between 98 and 99% for her head, height and weight measurements.  We were told to cut down on the milk and the portions of food!  That might be hard.

Not much else besides this picture below and the fact that I am enjoying my time off with her very very much!

maysa_18_months_old

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Posted in Maysa, Pictures, post DOC band, Uncategorized | Tagged: , | 2 Comments »

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…)

Posted in Cranial Technologies, doc band, eastern cranial affiliates, Maysa, Orthomerica, post DOC band | Tagged: , , , , , , , , , | 4 Comments »

Maysa’s front views – day 1 up till now

Posted by mymaysa on July 6, 2009

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.

1-08 to 6-08

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. 

6-08 to 10-08

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. 

10-08 to 12-08

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.

12-08 to 5-09

These are the last three pictures of her May, June, July:

5-09 to 7-09

Posted in doc band, eastern cranial affiliates, Maysa, Pictures | Tagged: , , , , , | 4 Comments »

I think we just missed one…

Posted by mymaysa on July 6, 2009

It’s been over a month since Maysa graduated from her DOC band but since that time, I feel like she has gone through one big growth spurt that we just missed out of the band.  Her sandals don’t fit anymore.  We’ve had to buy her new ones.  Her dresses are getting shorter, her tee-shirts are getting tighter and she has gained 2 or 3 pounds in the past month.  Needless to say that her head has also grown.  At least, that’s the way I feel, and it seemed to have gotten wider as well.  I am starting to see where things don’t look right all over again and last night, I cut her hair up front to give her bangs in hopes to cover the width in her forehead.  She’ll always be cute, but I don’t think that she is meant to have bangs, not with hair that’s so curly.  Thank God that her hair is still long enough to be tighed up at the top of her head.

Here are a few pictures of her:

In this one, she is giggling while her sister is being silly with her.  I wish I had videotaped this moment.  Her little laughs were priceless.

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In this next one, after agreeing with me that Mommy did an awful job trimming that hair, you’ll probably notice that she is sitting on the toilet stool.  Yes, she always asks to sit on the potty to go “pee-pee”.  Then, as soon as she sits, she asks for some toilet paper to wipe her buttocks.  Needless to say that, despite the serious look, there hasn’t been any “pee-pee” yet IN the potty.  It’s a start though, and I’ll take it!

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I just found this other picture of her taken last week at Sesame Place.  It’s an awesome place for younger kids, by the way.  Do you see what I mean by “my baby has gotten bigger all of a sudden!”  She is not even a year and a half yet in this one!

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