Maysa's Blog

Our journey through plagiocephaly and brachycephaly

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.

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5 Responses to “What’s wrong with these pictures…”

  1. Jennifer Wells said

    Such a shame that this person is certified to do this. As you know, I had some issues with my StarBand and it took them weeks to finally cut some helmet off so it wasn’t pushing S’s ear out. Now it slightly sticks out, but is looking better as time goes by. I can imagine how furious you were about this situation, plus when they act like everything is great, it’s even more frustrating. I’m sorry you lost valuable time with that helmet.

    Thanks for keeping up with our blog 🙂 I’m always so excited to see when you have updated yours.

    Jennifer

  2. elijahroo said

    Well, it’s completely amazing that the ECA helmet didn’t do irreversible damage. What does this guy even do to customize these devices???? Hack off the sides and back until it fits? Thank goodness for Cranial Tech!

    Also, does she still get that rash on the cheeks? My son has the same thing and I am trying to figure out what it is.

    Elizabeth

  3. mymaysa said

    Elizabeth,
    In my opinion, there was irreversible damage. My daughter’s head grew in width considerably when it shouldn’t have and no helmet or band after that could undo the damage. This said, Cranial Tech still does wonders!
    I’ve been using Soothing Naturals from Johnson & Johnson. It comes in a green container and it has really helped. I put it on her skin almost everyday and it has really taken care for that awful rash she used to get on her face. I wish I had known about that when her skin first started breaking. I kept trying something new each time until this worked on her.
    Take care,
    Leila

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  5. Martina said

    Unfortunately I haven’t read your story earlier – otherwise I would have been more watchful to the changes our helmet induced on my son’s head. His head shape underwent irreversible damage, the head being pushed upwards due to lack of space in the back.. I noticed too late, but still could prevent greater damage by taking the helmet off. I wasn’t told that a crappy helmet can destroy a good head shape, leaving the flat spot flat.. (his plagio was mild and not worth treating – that is what I know now). No words can express how sad I am that my boy’s beautiful little head has been changed forever. I understand what you feel..

    Martina

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