Maysa's Blog

Our journey through plagiocephaly and brachycephaly

Posts Tagged ‘ECA’

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!

Advertisements

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 »

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 »

The latest report(s)…

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: , , , , , , , , , , , , , , , | 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 »

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 »