Maysa's Blog

Our journey through plagiocephaly and brachycephaly

About

Maysa in her DOC band

Maysa in her DOC band

I am starting this blog about my daughter Maysa a little late in the game but I have my reasons for it.  In this blog, you will find information about her journey through plagiocephaly and other related topics.  As is the case for any blog, this is a work in progress and will always be. 

My hopes are to educate other parents on the topic and raise awareness throughout the world.  Therefore, feel free to send this blog to others or link it to your own blog or website.  Comments are always welcome and will keep it alive.

Thanks for reading and checking my Maysa’s Blog!

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22 Responses to “About”

  1. lucyshouse said

    Hi there, My little guy had the doc-band for a while with great success. We are very pleased with the results! Sounds like you are too. Your daughter is gorgeous! Good luck to you!

  2. kk ford said

    sorry about the random comment, but I love the lulu bird boutique and she is no longer on etsy. do you have any contact information like phone number/email address for marian?? i really would like for her to make a cape for my son. thank you in advance for your help. KK Ford

  3. mymaysa said

    I hadn’t realized that she had closed shop. I do know that she is on Facebook. Look for Mariann Stolte.

  4. kk ford said

    Thanks for your quick response. I will try facebook.kk

  5. svetlana said

    Hello, I am from Latvia. My son is 6 month old, and he has a problem like Maysa. But in our country there are not any company which imports doc band in Latvia. How to and where it is possible to buy it.

  6. mymaysa said

    Hi Svetlana,

    You are right. As far as I know, there are no DOC band providers close to your area. The only location I am aware of is in Spain.

    There are, however, STARband providers closer to you in Germany and in the Netherlands. Their helmet is comparable to the DOC band although different and depending on the expertise of the orthotist, you might get great results. You might want to check out the Orthomerica website, maker of the STARband to find out more.

    Your son is still young, but now is the time to get help. Keep him off his flat spot as much as you possibly can and if he has torticollis, make sure he gets physical therapy.

    If you decide to get him a band, it will need to be adjusted every 1 to 2 weeks and he might have to wear it for up to 6 months.

    Either way, good luck. I am sorry I cannot be of better help to you. I hope all works out.

    Leila

  7. svetlana said

    Thank you Leila. My son has this problem only because he likes to sleep on the back. But few weeks ago he began to play and to sleep on sides. I just thought that with DOC BAND his head becames normal faster. I will look the website you write me about.

  8. svetlana said

    I just looked this website, you know we had this expertise of the orthotist in hospital and the doctor sad the we have to try to sleep on sides. Do you know maybe it is possible to order doc band helmet in Spain using the internet and some logistic company? Or helmets are made by individual size and only wiht the doctor`s control?

  9. mymaysa said

    Svetlana,

    If traveling to Spain on weekly to bi-weekly basis for the next few months won’t be a problem for you, then all you need is a prescription for your son’s pediatrician saying that you son needs a helmet to correct his brachycephaly.

    The DOC band is a custom made band and your son will have to go for an initial DSi for them to make his band. After that, he’ll have to go every week or every two weeks for adjustments

    Leila

  10. svetlana said

    Thank you, Leila!

  11. Jodi said

    Hi! I live in Columbia, MD and have just found out that my sone has plagio. He is 3 months old so we are going to try a month of PT before deciding onthe helmet. I have had a consult with STAR and am scheduled to have one in VA with CT. Ws wondering if you could give me some info onyour experience with each– I am wondering if it is worth it to drive to VA for the DOC band.

  12. Carlan I. said

    Hi Maysa,

    We are the Engineer Peers of Memorial Middle School in Conyers, GA. We are a team of 6th, 7th, and 8th Graders. Our team was challenged to research an interesting topic in preparation for our Bioengineering theme in Lego Robotics. We chose the topic of Plagiocephaly. We are amazed at your progress. Your mother’s blog really helped us research and understand Plagiocephy as well as the bio engineers who helped create the DOC band.

    We wanted to thank you for such a wonderful website. With your help, we won 3rd place out of 27 teams in robotics.

    The Engineer Peers, Team #7056
    First League League

  13. mymaysa said

    Hi Engineer Peers, Team #7056,

    Maysa is not quite three years old yet and wouldn’t understand your message but I’ll let her know one day that her story inspired some young students in GA. I, her mother, on the other hand would love to see the outcome of your research. Did you have to submit a final product? Would you be willing to share? The more people know about plagiocephaly the better.

    Take care,
    Leila

  14. Hello my name is Brandi Murray and i have a 3.5 month old daughter named Adalynn. I started noticing her head flattening when she was about a month old and asked her pediatrician about it and she just kept telling me it will get better lots of tummy time and it will get better. I knew there was something wrong and everyone friends and family all told me she will be fine when she gets hair it will cover it. So i started just alternating sides and proping her neck she she wouldn’t lay on it. It still kept getting worse. I am so relieved to know im not crazy!! Your blog is very inspirational and informative. I am going to get her into a doctor this week and im gonna get the answer and hopefully get her head back to normal. So Thank You so much..

  15. mymaysa said

    Hi Brandi,

    You are not crazy. What is crazy is seeing so many new parents going through the same thing every day and so many doctors who are not aware of plagio and its complications. Good luck with the doctor’s appointment and please keep me posted.

    Leila

  16. Tara said

    Leila,

    I came across your site when I was looking up Eastern Cranial Affiliates. My son is 4 months old and has severe plagiocephaly. I noticed the right side of his head was becoming flat around a month and a half, mentioned it to pediatrician at his 2 month visit and have been working on positioning techniques for a long time. At his 4 month appointment I mentioned my concerns again and also noted that his ears were becoming asymmetrical. He agreed with me and sent us to Cranial Technologies. We had our appointment last week and they said it would not resolve on it’s own and that they definitely recommended getting the DOC band. After looking at the pictures they took of him as well as hearing what they had to say, I also agreed. However, when we went to get our insurance to approve it, they said they wouldn’t cover it because it was an out-of-network company. They gave us a list of all the companies that were in-network that fell under “durable medical equipment.” The majority of them were just places that sold wheelchairs, oxygen tanks, crutches…oh, and Hoveround (like my 4 month old needs an electric mobile device!). We had them review the case and they denied it stating that they were out-of-network and that there was a place that did the same thing: Eastern Cranial Affiliates in Arlington, VA. Which brings me to your site…I am just sickened by what I have read on your site and the thought of taking a chance and putting my baby in something like their helmet has me scared and in tears. Would you be able to tell me a little bit more about your experience? I saw the warning letter from the FDA, which concerns me a ton and also saw that it looks like it was resolved in June of this year. Still..scary, nonetheless. I would appreciate any extra info you could tell me! We want to get him in (preferably) a band ASAP! Thanks so much! 🙂

  17. Silvia said

    Hi! I’m from Italy,my son is now 16 monthes ,he has a mild brachicephaly,his head appear a little bit large,because he has bumps above the ears…
    The head shape is similar to reverse pear…
    He’s similar to Maysa at the same age…Perhaps a little bit more pronunced…
    How is it now Maysa’s head ?
    I hope my son’s head will be’ batter with time
    Thanks in advance
    Silvia

  18. mymaysa said

    Silvia,
    Maysa’s head will never be what it should have been. I have had two dreams about her where her head looked normal (similar to that of her sister). This said, no one picks up on it. It is still wider above the ears. Her temples do not dip in like the rest of us, however, the back of her head is no longer flat. It is no longer asymmetrical and I am thankful for that. I will try and post some recent pictures of her soon.
    Leila

  19. Charlotte Goodman said

    Hi, I found your blog today and I am so pleased your started this. I have 2 girls, Scarlett is 2 and my new one is Daisy she is 11 weeks. For the last 3/4 weeks I cannot stop worrying about her head shape it is extremly flat.. As you said she, daisy is a really good sleeper. Like you my husband thinks I’m being silly worrying about it. I asked my doctor and all I get is they grow into their heads don’t worry. But I can’t not worry its not just a flat bit it’s the whole back of myer head, and I’m tired of people telling me its normal. We belong to a mothers group of over 20 people and no other baby has her shape head. Can I ask did you need a referral to go to these places or can I just find a place and see what they say? I feel as if I’m going insane and people are just ignoring me and passing it off as me being a paranoid mum. Was it all worth it for you and did it caused little Maysa and discomfort? I just don’t know what to do? I would really appreciate your opinion? Thank you

  20. mymaysa said

    Charlotte,

    I don’t regret what I did for Maysa to help improve her head shape one bit. She is will be turning 6 in a month and no one notices her once misshapen head. People actually say that she has a round face/head (which, believe me, I take as a huge compliment), but that is because it is not quite as oval as most…

    I have never seen your little girl’s head, but I don’t think that you are crazy thinking that there is something wrong with it. If I were you, I would go the extra mile and get her the help she needs now while you can. Remember, she can’t help herself, but YOU can.

    Also, Maysa did very well while in her helmets. She doesn’t remember any of it but while she wore them didn’t seem bothered at all. I hope this helps.

    Good luck,
    Leila

  21. Matt Turner said

    Leila,

    My son, Levi is a victim of the “back to sleep” campaign. We were given a “pack-n-play” as a baby shower given which came with a napper. Levi was swaddled every night for 3-4 months and placed perfectly on his back with his positioned up in the napper to sleep (8 hours). Levi was an awesome newborn and would sleep every minute of the day he was not nursing. You don’t wake a sleeping baby right, so he was allowed to sleep in his car seat when transported and in his swing during the day. My wife and I both become nausiated when we think about those time and feel like the most negligent parents. As new parents, my wife educated herself on newborn care, but we were unaware of plagiocephaly or brachycephaly. My son was born with a perfectly shaped head. Between his second and forth month ped visit, my wife and I both noticed a change in his head shape, but avoided admitting it and sharing with each other our concerns. At Levi’s 4-month ped visit, our ped immediately commented “another flat head”. Our son just turned 15mths and I haven’t had one day without guilt or shame or been without one sleepness night since that comment. Our ped assured us that his case was mild and that we only needed to practice ‘re-positioning” and increase tummy-time. My wife, spent endless hours researching every credible forum, post, etc. she could read about his brachcephaly condition. We quickly became fatigued from reading and both became emotionally drained from the images, research, and statistics. Our ped never once led us to believe Levi would suffer cosmetically from this condition, she never really defined how much (or little) he should rest on his back or how frequent Levi should have tummy time to improve his head shape. We took it in own hands to visit UNC Hospital and consult with a cranio-neuro specialist doctor, around 5-6mths. He too made light of our concerns and assured us that Levi’s head would reshape itself, did not need orthopedic treatment, no neurological issues, but results would gradual until 5 years old. My wife and I decided to try to let it rest, take their advise, I mean they were the “experts”! This meant would both agree to never google the condition again. Our ped expressed no concern at Levi’s 6,9,12mth visits and was please with his progress. Of course, every picture, every bath we were reminded of Levi’s condition.

    On 7/1/14, our second son, Luke was born. Sill experiencing guilt and doubting our decision for Levi, I made up my mind that I was going to have Levi assessed by a professional who was focused on his cosmetic condition and would show me proof that Levi’s head was fine, wasn’t perfect but was passed treatment, or needed immediate intervention for success based on measurements (scan, etc.) vs. their “professional opinion”.

    I’ve recently contacted Carolina Kinder Development in Charlotte NC. I had a quick conversation with the therapist/owner and was very encouraged! We have a phone consultation coming up and a scheduled assessment next week. I’m not sure where you are located, but can you recommended someone I can call to for the 3D scan I’ve seen on your blog and who you used for Maysa’s head gear/bands. I believe you mention Eastern Cranial Affiliates. Words can’t impress how helpful and inspriting Masya’s story is! She is a beautiful girl!

    Matt and Heather Turner

  22. Mariska said

    Dear Leila,

    I am so glad I came across your website. Our son is almost 7 months old and has brachycephaly.
    They disencourage us (the pediatrician here in the Netherlands) to use a helmet for the shape of our son’s head but we do not believe that his head will improve with exercise therapy only. I am just wondering: are we too late for the doc band? And what is the difference between a normal helmet and the doc band? Thank you for your reply. Greetings Mariska from the Netherlands

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