Maysa's Blog

Our journey through plagiocephaly and brachycephaly

Posts Tagged ‘kidcap’

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!

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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 »

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 »