Maysa's Blog

Our journey through plagiocephaly and brachycephaly

Archive for the ‘eastern cranial affiliates’ Category

FDA Warning Letter to Eastern Cranial Affiliates

Posted by mymaysa on December 17, 2010

Somebody in Central MA loves me, my Maysa, and a lot of other babies in the Metro DC area.  Whoever you are I love you too and THANK YOU!  

Yesterday, I received the best piece of mail of the season, maybe the best piece of mail in my entire life.  The letter was addressed to me with no return address, but a stamp on the envelope shows that it came from Central MA.  It looked suspicious so I opened it first.  The letter contained three sheets.  On the first one, a big:

NOTICE

RE: FDA WARNING LETTER – EASTERN CRANIAL AFFILIATES, LLC

I am thinking what now?  What is Joe Terpenning sending me this time?  So, I go on to the next two pages only to realize that this one is really not addressed to me but to Joe Terpenning himself.  It is available to the public on the web.  Here it is: http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm234347.htm.  If you’ve been following Maysa’s story and wondered even a tiny bit if any of what I wrote was ever a little bit too much, then you have got to read this letter.  The FDA actually paid his firm a visit and the warning letter that they issued as a result is a loaded three page document.  Needless to say that I knew nothing about it until yesterday.

I feel vindicated.  Happy Holidays!

Posted in eastern cranial affiliates, Maysa | Tagged: , , , , , , , , , , , | 8 Comments »

A Year Ago Today…

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 doc band, eastern cranial affiliates, Pictures, post DOC band | Tagged: , , , , , , , , , , , , , , | 4 Comments »

Baby Miguel Part 2…

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 eastern cranial affiliates, Orthomerica, Pictures, Star Cranial Center of Excellence | Tagged: , , , , , , , , | Leave a Comment »

Baby Miguel…

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 eastern cranial affiliates, Orthomerica, Star Cranial Center of Excellence | Tagged: , , , , , , , , | Leave a Comment »

What’s wrong with these pictures…

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 eastern cranial affiliates, Pictures | Tagged: , , , , , , , | 5 Comments »

ECA Vs. Cranial Tech

Posted by mymaysa on October 7, 2009

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's 2nd Helmet ECA

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.

ECA Vs DOC Band

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.

Posted in Cranial Technologies, doc band, eastern cranial affiliates, Maysa, Pictures | Tagged: , , , , , , , , , , | 6 Comments »

Front Page Star… Maysa!

Posted by mymaysa on July 13, 2009

DSC_1346 - Copy

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 »