Maysa's Blog

Our journey through plagiocephaly and brachycephaly

Posts Tagged ‘JT’

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 »

Head Width Comparison 2:

Posted by mymaysa on January 17, 2009

Would you believe that Maysa was in a previous helmet from another company for 3.5 months in the picture on the left?  I took her out of it for good reasons.  Look at her head width back then. It looked so wide and so deformed. That helmet didn’t seem to work for her.  Looking at her didn’t spell progress, in my opinion, and neither did the numbers on the graph.  

Look at her now, 10 weeks into the DOC band.  It’s amazing how more proportionate her head looks…  It is too bad we didn’t switch earlier, yet I am glad that we did switch when we did.

Another Head Width Comparison

Another Head Width Comparison

Posted in doc band, Maysa, Pictures | Tagged: , , , , , , | Leave a Comment »

It’s most likely a dermoid cyst

Posted by mymaysa on January 8, 2009

A few months back I posted on the Yahoo Plagio Group about a bump that started popping out on the back of Maysa’s head. It started the size of a pea and is now the size of a knuckle. You certainly cannot see it because of her hair but you definitely can feel it.

I remember mentioning to her previous orthotist about a dent in that same area while she was in her passive helmet. He assured me that it was just a imprint like those left by the elastic of a sock on an ankle and that it would go away once she would be out of the helmet. I always thought that the padding on that lower right corner of the helmet had something to do with it, like it was digging a hole in her skull, but he didn’t think so.

Well, it looks like the dent led to a bump and it grew bigger the moment we got her out of her passive helmet. We mentioned it right away to Amber from CT who at first thought it was a lymph node but then thought that it felt too hard. I also took her to Kaiser to have it checked out and posted a message on the Yahoo Plagio Board again, but nobody could tell me exactly what it was. At Kaiser, they just told me that it didn’t look too serious. Well how reassuring is that? I wasn’t satisfied with that answer, so her pediatrician referred us to a neurosurgeon, John Myseros, in Fairfax, VA.

We paid him a visit yesterday. After his clinical assistant came and took a bunch of notes and measurements, he came in, felt her head and said: “That’s a dermoid cyst”. I asked him: “what’s that?” and he said that it a piece of skin and other components trapped between her skull and her outer skin. He then drew it on a piece of paper. This is my best representation of it (look at Figure 1):

He said that it could also be the way her skull is shaped in that area, plain and simple, but in case it is in fact a dermoid, that it could be something to worry about if it is lodged too deep inside the skull bone. In certain cases, he also said that a dermoid can be touching the brain like in Figure 2:

He also said that although she was most likely born with, he believes that the way her previous passive helmet sat on her head could have probably made it worse by rubbing against it. In any case, he wouldn’t be able to tell for sure unless he took a CAT scan of her head. He gave us a referral but it’s now up to us to decide whether we want to go forward with it or not…

dermoidf1f21
One more thing: John Myseros was absolutely against helmet treatment for plagio/brachy. He said it was all purely cosmetic and that in no way did the shape of the skull affected the functionality of the brain or any other parts of the body. I could barely place a word, he was going on and on about it… He told me that Maysa looked fine to him. I said, well, she started with a CI of 98% and he said: “So what?”.  At that point, I knew there was no use talking to him about plagio or brachy anymore.

Posted in Dermoid, Maysa, neurosurgeon | Tagged: , , , , , , | 4 Comments »

The three reports:

Posted by mymaysa on January 6, 2009

Alright, I had a minute to scan Maysa’s reports this morning and here they are:

The first one was taken on 6/24/08 during our initial evaluation, when we were still trying to determine what she actually had and if she would benefit from helmet treatment or not.

 STAR Scan June 2008

The second one was taken on 10/13/08 back when I had doubts about how well Maysa’s passive helmet from Eastern Cranial Affiliates was working for her.  I let you be the judge, but in my opinion and looking at the report itself, the helmet didn’t do anything about keeping her head from growing on the sides.  It didn’t correct her plagio at all either.  In fact, Laura Plank from Orthomerica, explained to me that looking at both scans, both her brachy and plagio got worse.

STAR Scan June/October 2008

The third one shows how she’s progressed since she’s been in the DOC band and since we’ve done CST.  Her plagio is now within normal range at 2.1mm and her brachy has gone down from 98.2% to 93.2%.

STAR Scan October 2008/ January 2009

There you have it.  Love the DOC band and love the Starscanner a lot!

Posted in Cranial Technologies, CST Appointments, doc band, Maysa, Orthomerica, Pictures, Star Cranial Center of Excellence | Tagged: , , , , , , , , , , , , , | 1 Comment »