The latest report(s)…

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?

ECA Vs. Cranial Tech

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 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.

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.

Day 1 and 15.5 months later…

Maysa’s graduation from her second DOC band is fast approaching and I have been looking at several of her pictures from when she was much younger.  Well it doesn’t get younger than this.  Here are two pictures of Maysa below.  See how perfectly normal her head looked from this front view: not wide, not asymmetrical, not cony (her hair is sticking up a little, but that’s all), and look at her ears.  Where are they?  They are so flat against her head you can hardly see them.  I will be posting other pictures of her showing how her plagio and especially brachy altered her appearance throughout the months.  In the meantime, on the right is a picture of her now.  Her head looks wider and her ears kind of stick out, but it is not as bad as before she got treatment through the DOC bands.  The DOC bands really helped, I believe.  Not only did they stop it from getting worse, it made it so that she actually looks better.

Top View Comparison

Here comes another post about Maysa’s progress thanks to the DOC bands she wore for the past few months.  Pictures like these were a challenge to take each time.  Being able to take a top view picture showing both ears was hard at first but is even harder now that her ears don’t stick out as much.  However, they have helped me keep my sanity and they’ve all been worth it.

Week 15 in DOC band 2

After a beautiful weekend, we woke up to rain this morning.  I thought that traffic was going to be bad but we actually got to our appointment with Amber at Cranial Technologies right on time.  We are always seen right away and I’ve loved that about them right from the start. 

Today was our last “shaving” appointment with Amber.  Maysa was extremely playful in the examination room, dancing and all.  The rocking dog and the musical flowers kept her entertained.  When Amber walked in to remove her band and take her circumference measurement, she kept shaking her head “no”.  She always does.  Then, when Amber took the band to go shave off some foam for the last time, Maysa wasn’t too happy.  It’s the first time that she’s gotten upset at her taking it away from her…

Amber came back and had shaved off the foam all the way to the plastic shell.  I truly didn’t think that we were going to get all the way down to the plastic shell before the end of the 16 weeks.  I am extremely happy with the results we got, with the fact that Maysa’s head will be free again after almost 11 months, with the fact that no one will ever be able to tell that there was ever anything wrong with her head shape.  I am so glad we were able to treat her with the DOC band.

Her next and last appointment is scheduled for May 26th.  They will again take pictures of her, do another DSi and hand measurements of her head.  I will be posting about that for sure!

Left Profile Comparison

Too often people will ask questions as these: Do plagiocephaly helmets really work?  Do they really help a baby’s head round out?  Are they really worth the price?  We know too well that many pediatricians will tell you they don’t.  Many will tell you that babies head round out on their own, that they are a waste of time and money.  Well, unless you want to gamble it, wait and see and then possibly regret not doing anything about it later, here are two pictures for you that speak for themselves:

 

 

I do want to add that I outlined both pictures and trimmed them (including Maysa’s pony tail in the 5-09-09 picture) so no one would be distracted by the background.  The DOC band rocks!

Looking back…

Here is another comparison picture of Maysa.  On the left, she was 9 months old, awaiting her first DOC band.  On the right, she is 15.5 months old, six months into her DOC band treatment.  I couldn’t be happier that we switched to the DOC band after the failed passive helmet she wore for 3.5 months.  Now, her head doesn’t look so wide above her ears anymore and her ears have straightened up a tiny bit more.

Thanks, Melanie…

Thanks to Melanie (one of my online Plagio parent), I now understand why I wasn’t coming up with the same measurements as those from Orthomerica.  Back when Maysa got her first scan from Orthomerica, the part where her head was the widest was right at the center horizontal line of the graph.  Her head was also the longest at the center vertical line.  I always though that the cephalic index was taken by measuring those two lines, no matter whether they were the longest or not.  Apparenlty not.  Melanie explained to me that I have to measure the widest width on her head as well as the longest length.  Since she’s been in the DOC band, Maysa’s widest width has moved down below the center horizontal line (which is what should happen as the head should be wider in the back rather than the front of the head) and that’s why I was getting different numbers.

So…  After I took my ruler again and remeasured her width in the right spot, I basically came up with the same numbers.  Her last CI was a little better using the ruler: 92.68% as opposed to 92.99%. 

I also looked back at the two pictures from Tim’s report and the CI I came up with in the sliced view was 92.4%, so quite comparable after all.  The CI I got from the whole top view of her head was more like 89.7% which tells me that her head still comes out more on the top back than the bottom back by a few millimiters.

This said, I am still really happy with the results we got this far.  Thanks Melanie for clarifying things for me!

Protected: The Mid Treatment DSi Report from Tim

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Tim’s report

I haven’t forgotten to post about Tim’s report.  It was very informative and allowed me to view things from many different angles and perspectives.  I will post more, later, in an update.

The two reports since the DOC bands

Alright, so here are the two reports I got yesterday. 

The first one shows the comparison between January 5th and April 7th (3 months difference).  Just so you know, Maysa got into her second DOC band on February 2nd.

January 5th to April 7th, 2009

 
The second one shows the comparison between October 13th and April 7th (almost 6 months).  Maysa got her first DOC band on October 31st. 

October 13th, 2008 to April 7th, 2009

 

I have to say that I am very happy with the fact that her width has practically remained the same and that her growth has mainly been in her cranial length.  According to another report, the first passive helmet she was in did nothing to keep her head from getting wider.  The DOC bands did.  Thank you CT team!

Needless to say that after getting these reports yesterday, I contacted Amber who scheduled me in this morning at 8:00 AM.  That’s coming in another post…

Plagio Plague

What a pain, what a pain… You’d think that Maysa is my first child, but no.  She is my second and I worry more about her and this plagio plague than about anything around.  At least for now.

Remember how I told you that I was taking her for another scan at Orthomerica today?  Well, I was able to take her yesterday instead (impatient me) and my head has been spinning ever since I got her latest report.

Before I get started on the report, I want to say something about Laura Plank, the orthotist at Orthomerica in Columbia, MD.  Love her a lot.  She is wonderful.  Not only does she do and take her job seriously, she is also extremely caring.  When you talk to her, you know that you are also talking to the “Mom”, not just the specialist, and that means a lot to me since most people don’t quite relate to the struggle we are faced with for the rest of our little ones lives.  She is positive too and will get you to focus on the brighter side of things…  Yet, I am worried and once again ready to battle this curse.

So, back to the reports now.  The last one she got was back on 1/05/09.  Her brachy was at 93.2%.  Her plagio was at 2.1mm.  Yesterday, 4/07/09, her brachy is at 93% (92.99%).  Her plagio at 5.1mm.  What in the world?  I thought I didn’t have to worry about plagio anymore.  I truly don’t get it.  I was expecting her brachy to be closer to 90% and her plagio to be down to 0mm.  She grew 9mm in circumference in 3 months, not much, but I was expecting more…

Laura tells me that her growth is slowing down and that her sutures are probably starting to fuse.  She says that considering her age and the 5.5 weeks left in the band not to expect much more improvement.  This is basically it.

Feel my frustration.  Help me get through this.  I am loosing my sanity!

I’ll be posting the reports in the following post.

Scheduled for Another Scan

I just called Orthomerica this morning. I scheduled another appointment with Laura Plank to have her scan Maysa’s head once more. She will see us on April 8th. I can’t wait to see what her head shape looks like on paper and what her numbers will tell us then. The last scan she got was on January 5th. Pray with me that her brachy is well below 90% by then.

The three reports:

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.

 

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.

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%.

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

This is how I feel…

As happy as I am to see how Maysa has improved in her band, I can’t help but feel sad deep inside for the time we wasted in her passive helmet and for what I see as not only a lack of improvement but regression as well.  According to her third scan taken yesterday, her plagio has gone down from 8mm to 2.1mm, and her brachy from 98.2% to 93.2%.  She’s only grown about 1cm in circumference between 10/13 and 01/05 but basically her asymmetry is gone.

What am I sad about then? 

Well, I am sad because while in her passive helmet, and according to the numbers on the graph from Orthomerica, she grew 3.5cm in circumference, which is huge, yet her plagio went from 6.4mm to 8mm.  Going by her scan again, her brachy also got worse from 97.9% to 98.2%.  She stayed in that helmet for 3.5 months.  You always hear about such great results in active bands and I can’t help wonder what the results would have been had she been in a DOC band or even a STAR band back when she started treatment at 5.5 months.  Could she have seen perfect correction?  That’s what makes me sad and sick all over again:  regrets, regrets, regrets…

With a cephalic index of 93% Maysa still has brachycephaly (although mild, Laura Plank said) and in my opinion could benefit from another band.  I so want her to get below the 90% somehow.  Why should we stop trying now while things are going so well?  If she’s improved by 5% after nine weeks of treatment, couldn’t we see another 5% of improvement in another band? 

I know that her growth is slowing down but she is not quite 1 year old yet and so many babies start at that age and even later with good results too.  She doesn’t mind the band.  Family is supportive and I could care less what people say or think when they see her in her band, really.

I will be posting her three reports tomorrow once I get them scanned…