Re: Re: Eastern Cranial Affiliates Experience

[Guest guest]

WOW Amy! That sounds great! I am happy that you are so pleased with the band and the experience.

Please post pics in our folders so others can see the before and after.

:-)

Jen

Mom to Luli - 4 yrs old

Torticollis, Plagio, Syringomyelia

Re: Eastern Cranial Affiliates Experience

Jen,

Yes, tomorrow will be 8 weeks since my daughter was banded by the orthotist at Eastern Cranial Affiliates in Rosslyn( in VA just outside of Wash, DC.) We are very pleased with the treatment we have received. began treatment exactly at 8 months with 13mm asymmetry(forehead bossing, 6mm right ear shift forward, very slight facial.) She began PT for severe torticollis just before she turned 7 months and was recently released.

was scanned Monday and the results showed that she is now down to 7mm after about 7 weeks in ECA's helmet known as the "KidCap." We went with this provider initially because of our insurance, but I did lots of research before making the final decision. I like the fact that a board-certified orthotist sees every 2-3

weeks and makes the adjustments himself as well as the fact that the lab is located on site, so any changes can be made right there.

I like the orthotist, Joe Terpenning. I have asked him tons of questions and continue to do so at every visit and he never rushes through appointments, answering anything I ask. He seems genuinely interested in his profession--definitely a good thing. The staff is very friendly and they have been very helpful, calling me with insurance updates, etc.

One Saturday morning, I had to call when the office was closed because had an abrasion on the back of her head from the helmet. The on-call orthotist(not the one we see) called back in less than 5 minutes to tell me what to do about it until Monday when we had a scheduled appointment.

Most of all, I am pleased with the results. looks great and with only 7mm of asymmetry left and several weeks to go, it looks like we are only going to need one

band as promised and treatment is going to last about 3 months. Cranial Tech told us to expect 2 bands and a much longer treatment time based on 's age of 8 months the the severity of her plagio. The KidCap hardly has any padding compared to other bands and it is clear, so I can see what's going on with 's skin at all times. It also fully covers the head, like a helmet(more control directing growth.)

The flat spot in the back of 's head is almost completely rounded out and her ear has shifted significantly . She just needs to grow more in the left front area to even out the forehead bossing on the other side.

I hope this helps and I will be sure to post an update when treatment concludes to let everyone know how things turned out.

-Amy

[Guest guest]

Hi all,

This is Leila, Maysa's mom and we were out of town this weekend with no internet access...

I first want to comment on 's progress and say that I am happy to hear that her head is rounding out, if it is really rounding out that is but I don't want it to come out the wrong way. I don't doubt you, Amy, I doubt Joe T. and always will.

When we were treated in the kidcap by Joe T. we were always "making good progress". I believed it at first as I knew her head was growing in the back (I never said she didn't grow in the back). However, when I noticed that it was also growing on the sides, we were still told that she was "making good progress". My husband agreed with him 100%. He couldn't see what I was seeing so I kept on trying to believe Joe as well. I would be the one, however, to give her a bath at night and that's where things were always so obvious to me. I also was watching all those other babies who had started after Maysa and who were graduating before her with much rounder heads. Maysa was/still is a big baby and grew/still grows considerably. I was convinced that the growth wasn't going in the right place, so I went again to Star Cranial in Columbia, MD and then to CT in ndale, VA and both confirmed my

fears with a scan, a photostudy and a DSi... When my husband saw what they had to show us and heard what they had to tell us, he felt terribly cheated and admitted that he had blindly trusted Joe T... He also commended me for seeking other opinions and going with my mommy instinct.

Now, going back to your email below, closing and securing the helmet properly was never an issue for us. We knew how to operate it. Also, I wasn't one of those parents who felt bad taking their kids out in a helmet. It never phased me so Maysa wore her helmet as prescribed by Joe T. She never had rashes or skin problems so she never had to be out of it for any long period of time. We were "lucky" there.

Now for my comments on Maysa's asymmetry based on the scan from 4/2009, I confronted CT as well and got to talk to its VP Tim Littlefield who then put together a detailed report about Maysa's progress. It is the best report, even better than the scans from Orthomerica with graphs, overlays, cross sections and a histogram. After going through it together with him, I had no doubt that I was still in good hands and that although the star scanner showed a bit of an increased asymmetry, her asymmetry was visually not an issue to me anymore... Now, I wish I could share that report with all, but Tim made me promise not to make public on the web. He said that I could share it with family and friends (which I have) but not to the www...

I've always encouraged parents to stay on top of things and to question things when things don't look right. While I do recommend people to seek treatment with CT in ndale, VA and/or Star Cranial in Columbia, MD, if you see or feel that things are NOT going the right way, then I always urge people to find satisfactory answers and/or solutions. I didn't get a satisfactory answer/solution from Joe T. Instead, he tried to intimidate me hiring a lawyer requesting that I stop blogging about my experience with him and his company...

Leila,Maysa, 2 yo, DOC band Grad 5.26.09www.mymaysa.wordpress.com

From: Amy McGinnis <mcg_woo@...>Subject: Re: Re: Eastern Cranial Affiliates ExperiencePlagiocephaly Date: Friday, April 30, 2010, 5:28 PM

,I've been thinking about your post, trying to figure out why numbers could get worse while wearing a band/helmet. I do remember during an adjustment appointment Joe told me to make sure I had the velcro secured tight enough so that the two clasps(for lack of a better word) on the helmet wouldn't be too loose, which would allow her to grow a little in areas where we didn't want her to grow. I had indeed secured it too loose, which is why he told me to pay attention to it. The only other thing I could think of would be compliance(wearing the band as directed?)Now, I have no idea what happened with this mom's experience at ECA? After speaking with her, it is clear that she is a very nice woman who cares passionately about her daughter. There is no doubt about that. I did get a chance to look back over her blog after your post and if you notice in the below

entry, her daughter's asymmetry numbers also got worse during her treatment in a DocBand:

Posted by mymaysa on April 8, 2009

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 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 â€Momâ€, 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…

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.

Apparently, this type of thing does happen, for whatever reason? Perhaps, some parents with similar experiences could shed some light? I am no expert, I can only share my personal experience and the treatment my daughter has received at ECA. -Amy

From: Amy McGinnis <mcg_woo (DOT) com>PlagiocephalySent: Fri, April 30, 2010 11:48:11 AMSubject: Re: Re: Eastern Cranial Affiliates Experience

Jen and ,I will definitely post before and after pictures once treatment concludes.,I was aware of the other mom's experience with ECA prior to my daughter's banding, which made me do a lot more research than I would have otherwise before making the decision of whether to band and by whom. I have also emailed the mom privately and spoken with her by phone because I was so concerned about her experience. However, as a former journalist, I try to keep an open mind and get BOTH sides of the story. Before going with ECA, I did a lot of research, had consults with two different providers, asked tons of questions, consulted with physical therapists and a neurosurgeon all in an effort to check up on this provider. I even quizzed moms with babies in the ECA waiting room about their experiences. This mom's bad experience was the

only one I could find. In the end, I trusted my gut and went with the provider I believed was the best choice for . was hand-measured by Cranial Tech, hand-measured by her neurosurgeon as well as hand-measured and scanned by Joe at ECA. His initial measurements( hand and scanned) were consistent with with both Cranial Tech and the neurosurgeon. I can't explain why the other mom had such a different outcome? I do know the other little girl had been diagnosed with brachycephaly, while had been diagnosed with classic plagiocephaly caused by right-side torticollis. Some of the research I have read indicates that helmet therapy is more successful in normalizing classic plagio, but can only improve brachy. Since has classic plagio, that's where I focused most of my research. -Amy

From: <melanie.watson@ comcast.net>PlagiocephalySent: Fri, April 30, 2010 6:58:22 AMSubject: Re: Re: Eastern Cranial Affiliates Experience

I have followed the blog of the other mom who had a horrible experience and she and I have even emailed outside of the group.

It is very puzzling how her daughter's head got worse in their band but your experience is totally different. I'm not sure how anyone could go about explaining that. Maybe luck of the draw? Maybe your band was made well and hers wasn't. I'm not sure, but scan measurements can't lie. Amy, did they do computerized measurements or hand measurements? I know that Maysa's had the computerized measurements taken from where (my daughter) had her band and that is where she found out that (even though Joe had told her it was improvement) , the head had actually gotten worse. Re: Eastern Cranial Affiliates Experience

Jen,Yes, tomorrow will be 8 weeks since my daughter was banded by the orthotist at Eastern Cranial Affiliates in Rosslyn( in VA just outside of Wash, DC.) We are very pleased with the treatment we have received. began treatment exactly at 8 months with 13mm asymmetry(forehead bossing, 6mm right ear shift forward, very slight facial.) She began PT for severe torticollis just before she turned 7 months and was recently released. was scanned Monday and the results showed that she is now down to 7mm after about 7 weeks in ECA's helmet known as the "KidCap." We went with this provider initially because of our insurance, but I did lots of research before making the final decision. I like the fact that a board-certified orthotist sees every 2-3 weeks and makes the adjustments himself as well as the fact that the lab is located on site, so any changes can be made right there.I like the orthotist, Joe

Terpenning. I have asked him tons of questions and continue to do so at every visit and he never rushes through appointments, answering anything I ask. He seems genuinely interested in his profession-- definitely a good thing. The staff is very friendly and they have been very helpful, calling me with insurance updates, etc.One Saturday morning, I had to call when the office was closed because had an abrasion on the back of her head from the helmet. The on-call orthotist(not the one we see) called back in less than 5 minutes to tell me what to do about it until Monday when we had a scheduled appointment. Most of all, I am pleased with the results. looks great and with only 7mm of asymmetry left and several weeks to go, it looks like we are only going to need one band as promised and treatment is going to last about 3 months. Cranial Tech told us to expect 2 bands and a much longer treatment time based on 's age of 8

months the the severity of her plagio. The KidCap hardly has any padding compared to other bands and it is clear, so I can see what's going on with 's skin at all times. It also fully covers the head, like a helmet(more control directing growth.) The flat spot in the back of 's head is almost completely rounded out and her ear has shifted significantly . She just needs to grow more in the left front area to even out the forehead bossing on the other side. I hope this helps and I will be sure to post an update when treatment concludes to let everyone know how things turned out.-Amy