Maysa's Blog

Our journey through plagiocephaly and brachycephaly

Archive for January, 2009

Cranial Osteopathy and Visit from the Physical Therapist

Posted by mymaysa on January 23, 2009

We had two appointments back to back today; one with Frances Demmerle, the DO and one with Kara Kiernan, Maysa’s initial PT.

The osteopathy session wasn’t too much fun for Maysa. She was cranky the moment I put her in the car and all the way to the DO’s office. While there, she kept fighting her and got mad. You could see her annoyance turning into a tantrum. It is hard to say how much cranial osteopathy does actually contribute to the progress she’s been making and as much as I want to put that time and money elsewhere, I don’t want to deny Maysa the chance of making even better and faster progress by discontinuing treatment with cranial Osteopathy. I just hope she appreciates it when she grows up…

The visit from the PT was a lot more fun. She came to Maysa’s daycare and first observed her. Maysa is very social and didn’t mind her presence at all. She gathered some information and from what she saw and heard was very pleased with the progress she’s made in such a short time. Just so you know, Maysa didn’t start rolling over until close to 9 months of age. She didn’t start crawling until 11.5 months but ever since has been pulling herself to a stand. She also will stand on her own for a few seconds and cruise around the couch or the ottoman at home. She is also trying to climb up the stairs, scary!

Today, she was babbling, humming, going up and down the slide, crawling, walking with help, pulling herself to a stand. It really seems like all of a sudden she doesn’t need physical therapy. When she was first evaluated, just two or three weeks ago, they put her at 9 months old for her gross motor skills. Today, the PT told me that she was right at the 11 months mark, which is great!  She thinks that she can still benefit from physical therapy and she is now putting us on the waiting list for a specific PT for Maysa.  I have a feeling that she will be walking before that PT sees us next.

That’s the news for the day.

Posted in Cranial Osteopathy, CST Appointments, Maysa | Tagged: , , , , , , | 2 Comments »

Second DSi, on our way to a second DOC band:

Posted by mymaysa on January 20, 2009

We had our appointment at Cranial Technologies today in Annandale, VA. Maysa has been in her DOC band for 11 weeks now.  A second one was approved by our insurance, Kaiser Permanente, and looking at the progress that she’s made thus far, why not go for a second one?  I had really wanted to videotape Maysa’s second DSi and brought my camcorder with me.  My husband had assured me that it was ready for filming.  Well, once I got there, I realized there was no disk inside!  Arrrgh…  I did feel a bit silly!

Maysa did cry during the DSi.  Having that little sock over her head wasn’t her thing, plus, she wouldn’t sit up which made things a little harder.  Her long hair was also hard to tuck in under the sock.  Her sister, Soraya, came with us today and was really good.  She did tell me that she felt sad, though, to see Maysa cry.  How sweet!  Amber and her team got it after a second try and the drama was all over. 

I really liked looking at the comparison between the two DSi.  Her head has rounded out quite a bit (ok, a lot) at the bottom.  The right profile shows it the most and I couldn’t be happier.  The top view also shows that she has gained some length.  Really, this whole experience with Cranial Technologies has been fantastic and so uplifting.

Our fit appointment is scheduled for February 2nd.  Amber suggested that I bring my camcorder (with a disk this time) and that I could record the difference between the two DSi on their computer screen.  I’d love to do that and share it here on her blog.  I’ll just have to make sure that the camcorder IS ready for filming this time.

Today was a good day…

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Happy Birthday Snow White…

Posted by mymaysa on January 17, 2009

My little MaySnow White turned one this week. We got to celebrate this weekend. She is just so precious. Many thanks to Mariann of http://www.lulubirdboutique.org/ for making this Snow White inspired tutu dress just for her and to the Pastry Shop of Alexandria for their excellent tasty cake!

Wishing you many more little angel…

Happy 1st Birthday!

Happy 1st Birthday!

Yummy cake!

Yummy cake!

Posted in Birthday, Maysa, Pictures | Tagged: , , , , , , | 2 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

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Kaiser approved our second DOC band. Hooray!

Posted by mymaysa on January 13, 2009

I am so happy; I can’t find the words to express myself! Kaiser Permanente is now covering our second DOC band in full after initially sending us a denial letter in the mail.

Here is the story:

On December 31st, Kaiser sends a denial letter for a second DOC band stating that “insufficient clinical information has been provided to determine if the requested service is medically indicated. Current clinical information that documents Maysa’s history, examination findings including the current measurements pertinent to establishing the medical necessity of DOC banding that reflects the extent of her response to prior treatment, is required in order to establish whether the requested service is a covered benefit and medically necessary. Therefore, A Durable Medical Equipment (DME) item, DOC banding/cranial remolding banding, from Cranial Technologies, Inc., is not a covered medical benefit, at this time.”

The letter also gave the name of the doctor who denied the claim, Dr. Gregory Alexander, his phone number and address.

Another paragraph also states that our pediatrician could call a number to discuss our case and request a reconsideration on our behalf.

First things first, I try to call Dr. Alexander and leave two messages on his voicemail but I never hear back from him. The third time I call, I get him on the line. He explains to me that the reason why he denied the claim is because he couldn’t read the numbers that CT faxed him. He also said that he asked for new copies but that he never heard back from them. I then contact Sandra Vatalaro. She tells me that Kaiser never tried to contact them. She then emails me all the paperwork she faxed them. I print them out and fax them to Dr. Alexander along with the scans of Maysa from Orthomerica. I attach to that a letter explaining things a bit further.
I also contact my pediatrician via email and ask if she would request a reconsideration on our behalf. I also fax her all the documents I faxed Dr. Alexander and then I wait. The letter said that I should receive an answer within 10 days of submitting the request.

Today, 01/13/2009, I get a call from Tammy, Dr. Alexander’s assistant, with the news that after reviewing the documents I faxed them, that the doctor has approved a second DOC band for Maysa.

I am just so so happy, so happy for my Maysa!

Posted in Cranial Technologies, doc band, Maysa, Orthomerica | 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 »

This is how I feel…

Posted by mymaysa on January 6, 2009

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…

Posted in doc band, Maysa, Orthomerica, Star Cranial Center of Excellence | Tagged: , , , , , , , , , , , | Leave a Comment »

Laura Plank, thank you…

Posted by mymaysa on January 6, 2009

I took Maysa to her third scan on Monday to Orthomerica in Columbia, MD.  I couldn’t wait for my 2 o’clock appointment to come.  I made it there on time.  There was no traffic, and Maysa slept for the entire hour it took me to get there.  We went in.  She scanned her.  She showed me her report.

Thank you for putting my mind at ease.  Although I have known from the start that the DOC band was doing what it’s supposed to be doing, I just had to see it on paper in numbers and shape.

Again, thank you.

Posted in doc band, Maysa, Orthomerica, Star Cranial Center of Excellence | Tagged: , , , , , , , , , | Leave a Comment »

Cranial Technologies – Week 9 of Treatment

Posted by mymaysa on January 3, 2009

I took Maysa to Cranial Technologies on Friday. Her older sister, Soraya, came along. She is a restless, talkative three year old and I didn’t get to interact much with Amber. In short, a little bit more was shaved off of Maysa’s helmet. Amber also told me that depending on her future growth she has another one to two adjustments left before she is out of it. I doubt if Kaiser is going to pay for another DOC band so we have to make up our mind soon on whether or not to go for a second one.

I am going on Monday to Starcranial Orthomerica in Columbia, MD to get another scan of her head. I can’t wait to get more accurate measurements.

Also on Friday I took my oldest to her 3 year check up and with me I took Maysa’s progress pictures from CT to show the pediatrician. She barely glanced at them and acted as if she really didn’t care to look at the progress she’s made.  She is one of those who don’t really believe in helmet treatment and who told me from the start that her head would round out on its own. She only gave me a prescription the first time because I broke down crying out of frustration back in October when things were looking grim after many months of trying to do something about it to no avail.

Needless to say that I am ticked off. There is something wrong with the pediatricians denial and non-chalence about treating plagiocephaly across the country, I wonder if they get penalized for prescribing helmet treatments to patients!

I will be posting again after Monday’s appointment…

Posted in Cranial Technologies, doc band, Maysa | Tagged: , , , | 6 Comments »