#plagiocephaly

[ljf613]

The real reason it took so long for us to see baby Jack this season is because the actor's parents finally went to a doctor who realized that the kid had a serious case of plagiocephaly (flat head syndrome) and told them their baby needed to start wearing a helmet-- which obviously would not look good on camera.

[lightandwinged]

The twins have flattish heads, so they’re getting cranial bands/helmets to round them out. They had their fitting today, and they looked like tiny cosmonauts while they had their heads 3D scanned👨🏻‍🚀👩🏻‍🚀

[lightandwinged]

Working my way through decorating the twins’ helmets for fall! I’m using stickers and eventually ModPodge to seal it all. Carrie also has a Velcro piece for bows because I have waited my entire life to put bows on someone and everyone looks at me funny when I put bows on the boys.

They’re adjusting beautifully so far, could not give less of a fuck about the bands being on them. With any luck, they’ll be out of them by the new year.

[vincareblog]

10 FAQs about Plagiocephaly

[newmom94]

Plagiocephaly

My daughter has plagiocephaly and torticollis. Also known as a flat head. If you are concerned about your baby’s head shape then please read this and learn from my mistakes.

It affects 1 in 4 babies. Out of the 1 in 4 that have plagiocephaly, only 1 in 10 get diagnosed and need treatment. It is usually caused from sleeping in the same position which will result in a flat spot on the head. Some babies have it and then grow out of it fairly quickly.

It was most likely caused by her position in the womb. She was always on my right side during the last few months of my pregnancy. I was unaware that it could cause issues with her growth. She then developed neck tightness known as torticollis. After she was born the neck tightness caused her to only want to sleep on one side of her head. I would try over and over again to roll her to her other side and would stay up all hours of the night to reposition her. Nothing was working.

She developed a bump on her forehead around 3 months of age, her ears are off alignment, her right eye droops down, her left cheek is larger, and her skull base shifted causing facial asymmetry/ a slant to one side. I didn’t know what plagiocephaly was and asked her pediatrician at her 3 month appointment when I was brushed off and ignored. The doctor said “I wouldn’t even care by my second child”. So much was wrong with that statement I couldn’t believe it and decided to find a new pediatrician.

Next I did as much research on my own as possible and came across cranial technologies which makes cranial headbands for babies like cast for their skull. I took her in and got her scanned. She had moderate plagiocephaly and needed treatment. You need a prescription for a helmet so I had to wait for her next appointment with the new pediatrician.

A month later and her head shape was getting worse. I went to the new pediatrician and was blown off again and this doctor told me “I would never put my own kids through that” referring to the helmet. I was at a loss and even broke down crying in the office and asked her to review the paperwork I brought from cranial technologies and she wouldn’t even do it. I left thinking I would never get help for my daughter. But my husband was convinced that the we needed to listen to the doctor and wait to see what would happen. The doctor assured my that most babies with plagiocephaly will grow out of it by 1 years old. Which by the way it is too late to intervene by that time if you were to wait. I felt like maybe I was being overdramatic so I decided to listen to what everyone else was saying. The doctor referred me to a physical therapist for her next tightness.

We went to the physical therapist for a month and it was a complete waste of time since they only showed me two stretches for her neck the same ones that come up if you google it. The physical therapist also was so dismissive about her condition and told me it wasn’t that bad. That mindset just doesn’t make sense to me why ignore the problem when steps can be taken to correct it?

Another month goes by because I didn’t have a prescription and my husband was telling me to listen to the doctor. Her head shape continued to worsen and I finally broke down again and called cranial technologies for their suggestions. They were able to call my daughter’s pediatrician’s office and get another doctor to sign the prescription. I wish I would have known that was an option an done it sooner.

Anyway finally at 7 1/2 months old my daughter stated the helmet. It would have been better to start it sooner because we missed the growth spurt that happens between 4-6 months old. The cost of the helmet is astronomical for us because insurance doesn’t cover “cosmetic procedures”. We ended up paying $2500 for the one helmet but her treatment may require a second helmet.

Starting the helmet was such an emotional burden. I can see why some people feel that the helmet is controversial. But for me, I truly believe my daughter will be happier later in life that I at least tried to stop her from having a permanent deformity. Even though the helmet is not meant to make her head “perfect” it can prevent it from become worse. It may seem to some people like it is not worth all the trouble to go through with the helmet for a slight change. But some babies have a major chance in their head shape. For the first few days I had to make sure my daughter wasn’t overheated. She was very upset and wouldn’t sleep in it.

We got a referral to see a physical therapist from cranial technologies and finally got her some help for her neck tightness by someone who specializes in plagiocephaly and torticollis. I was shown a lot more exercises and stretches for her neck than the first PT showed us. She also told me about how she has worked with babies with plagiocephaly for 20+ years and that she agrees with helmets ever for more milder cases of plagiocephaly. She said that the outcome is always unknown and that the helmet has only had positive results in her experience.

On top of it all was the fear of judgment from others. I chose not to tell even certain family members about it. I am afraid of people thinking that “I didn’t do something right” or “how could she let that happen”. I also didn’t want anyone to think that she had a learning disability because of her appearance. Because I know exactly how shitty people can be. And to only prove my own point, two of the people I considered friends had something to say about it. One “friend” happened to say something without even knowing that we were about to start the helmet. He had kids and his exact words were “helmet babies are the worst”. I don’t even know how the conversation led to him saying that but I was besides myself with anger. He said it at a party over at a friends house so I only heard a part of what was being said. The other “friend” of mine made a comment at my birthday party and I decided to keep my daughter in her helmet because it was only my close friends there. He said the second he saw her in a sarcastic way “why does she have to wear that weird thing on her head” to which I replied “she has plagiocephaly” and I did not care to explain it any further since I was so mad at the way he said that on my birthday of all days.

Sorry for the long rant but plagiocephaly is really a misunderstood issue by pediatricians. It is not just a cosmetic issue! She has neck tightness which effects her physically and plagiocephaly can lead to a number of issues such as hearing and vision problems, or premature fusion of the skull plates which can result in brain damage if surgery is not preformed. I just wish we could have done something sooner. I know my daughter’s head will never be “perfect” and that’s not the point I have by getting treatment. I love my daughter and just want what is best for her. She shouldn’t have to live her life with neck tightness/torticollis and have a deformity because of it. It just isn’t fair. Which btw torticollis can last throughout her life and most likely be the case for my daughter.

I want to bring awareness to this issue because I want other moms and parents to know that it is not YOUR fault! The fact that you care is already proof in itself that you are doing a good job as a parent! I am working on letting go of the guilt I had around feeling like I didn’t get her help fast enough. Listen to your instincts as a parent! I wish I didn’t let myself get swayed by others. I’m not blaming anyone else either just that now I know moving forward that I should listen to my heart more and trust my motherly instincts. I can only look forward at this point and do what I am capable of. I am letting go of my guilt and trusting myself. I plan on posting the outcome of her treatment. Feel free to ask me any questions or comment about your personal experience.

[lovemamadews]

Plagiocephaly Baby Pillow Review

Plagiocephaly Baby Pillow Review

As parents we all want the best products to help our kids grow and develop. Starting even before birth, we do our research on the best gear, feeding, bathing, and diapering systems for our child and family needs. For some people, the use of a baby pillow is high on the list, because they have older children who suffered from Plagiocephaly or Flat Head Syndrome. So, in an attempt to be prepared…

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[oneblendedbunch]

Testing out Finley’s new baby bath! She is loving this inflatable Duck Bath! She now enjoys bath time, as opposed to not being super fond of it! I can’t believe that after 5 kids, and 20 years, I FINALLY found a baby bath that I like 😊 #babybathtime #babybathtub #babyproductreview #babymusthaves #plagiocephaly #rainbowbaby🌈 #rainbowbaby #momblogger #momlifeisthebestlife #smallyoutubercommunity #familyvloggers #babygirl🎀 #oregonmom #familyvloggers https://www.instagram.com/p/CJroyAmpUs-/?igshid=1secqu5v0mqqo

[aisalynn]

Clara got her helmet today. She's preferred to lay on one side of her head since birth, and no matter how many times we repositioned it or did excercises to loosen up her neck muscles she still would turn back to that side at night, so she developed a pretty significant flat spot. She'll need to wear the helmet for 23 hours a day for 6-9 weeks, shaving parts of the helmet down every week to direct the growth.

Thankfully, my extremely expensive and somewhat traumatic c-section meant that I have definitely met my out of pocket max for the family, so the helmet is free.

Otherwise it would be $4000.

Yikes.

Zach and I are arguing over how we are going to decorate it. He wants it to look like a Colts football helmet. I think the Super Mario Big Mushroom would be adorable.

...we'll probably never agree and end up leaving it blank.