FAQ • Plagiocephaly, Nonsynostotic

FAQ - Plagiocephaly, Nonsynostotic
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Flat head/ plagiocephaly?

My son who is 8 months old has a flatness to the back of his head, called plagiocephaly... and is going in for the DOC band in two weeks. Just wondering if anyone out there has a child or know of a child that has gone through the same thing? Any pointers or suggestions? How did you handle stares and comments from other people? Did you see a significant improvement? Did you paint yours? If you did, how did you do it? Thank you!
To respond someones comment...
First off, of course you will not see adults walking around with flat heads because this did not become an issue in the US until after the Back To Sleep campaign started in 1994. Second... depending on the severity, it might never correct itself over time without "help". Before you answer someones question, maybe you should read up on your information.

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My 15mo. old son had brachycephaly (plagiocephaly but the term for flatness specifically in the back). He got his DOC band at about 8mo. and got it off at 11mo. The improvement from the helmet was amazing and very noticeable.

Honestly, the whole process was much worse for me than for him. He also had torticollis (crooked neck) so he was in physical therapy so between that and the 2hr. trips for the helmet fittings it was exhausting. Strangers stared and made comments before the helmet too so when they made comments afterwards I wasn't too phased. I just answered their questions and considered it an opportunity to make people aware of plagiocephaly and the DOC bands. Sometimes it was upsetting because I wanted my little boy to be "perfect" but really noone was ever mean to him. Little kids would point and say "that kid has a cool hat!".

Biggest pointer is...don't listen to people who seem to think that their experience or opinion is the only right one. Alot of people believe that plagio is just a cosmetic issue and it will resolve itself. The reality is that it can lead to actual medical issues if not resolved and it can lead to alot of psychological problems. If we have the opportunity to correct the situation and make like easier for our babies than why shouldn't we?

I did not paint my son's band because I thought I'd mess it up and be upset about it. So, I left it white and got clear backed scrapbooking stickers to decorate it. I rotated the stickers about every 2 weeks. It was kind of fun.

Good luck! Remember, its harder for you than for him. Also remember you are a good mom and only special moms are given children with needs because they have the special qualities to be able to handle it! (+ info)

What products are safe to style a 1 year olds hair with?

My baby's have the helmets (for plagiocephaly) and my husband and I thought making a faux hawk through the top would be cute. what products are safe to use on babies?

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i know that babies can start beauty pageants around 9 months and i know they use hair spray and stuff for them- so that would be my guess- i dont think a little gel would hurt as long as he doesnt have skin allergies to different chemicals (+ info)

Plagiocephaly/Brachycephaly Please sign our petition.?

Several babies that either have been born with or caused by position have Plagiocephaly/Brachycephaly. Many of the babies parents are told that the baby's head would grow out with age and by 2yrs the head would be within a normal head shape. In some cases this may be true but many babies end up with a deformed head. There is treatment available which currently is private and only a few paid for by NHS. Cost is £2000, which is alot of money. If parents were made aware of the condition then their babies might not need treatment. If the conditon was made aware then the NHS would not need to fund the treatment for many. We would like the G'ment to make this a recognised syndrome giving advice on how to prevent it and if necessary pay for the treatment if moderate to severe. Some babies heads are so bad that they cant wear cycle helmets, hats or glasses yet parents are still told not to worry it will grow out. bless you x

http://petitions.pm.gov.uk/PlagioBrachy/BvSy62BD4S2aEqE8JdAtHg5
Of course here you go ;-)

http://www.plagiocephalyuk.co.uk/demipsaila.htm

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I'm not trying to be mean or anything, but do you think you could provide some links to some trustworthy sources to find out more information?

Edit: Thanks for the info. I did not sign the petition though because it said UK residents only, I live in the US. Best of luck to you though! :) (+ info)

Plagiocephaly?

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My son had brachiocephily (sp?). Same kind of thing, it was symmetrical flattening of the back of his head. He had to wear a full helmet for 5 months. 23 hours/day. We "weened" him onto the helmet by only having him wear it and hour or two at a time, gradually working up to the 23 hours. He adapted very well. Luckily, at that age, they don't feel embarrassment like we would. I just ignored the stares. A lot of people would just ask about it, and then I would explain what it was all about.After a few weeks I wanted to just print up a pamphlet to hand to people when they asked. I got sick of explaining the whole thing over and over.
Alot of people would say, "Oh, does your son have siezures?" I got so sick of that question!! We saw very significant improvement and we're very glad we went through with it. It was difficult at times, but it's important to get that corrected.
We didn't paint ours, we were able to order from a selection of colors and patterns. We ended up choosing a very bright tie-dye pattern! We figured if people were going to stare, may as well be bold about it. People actually thought it was very cute.
Good luck! Hang in there through the process and just remember that it will be worth it in the end and this phase is just a blink of an eye in the full spectrum of your child's life. (+ info)

Doctor kept plagiocephaly Secret??? Skull misshape in baby? CT was fine!?

Okay I posted a question about my son being able to hear or see earlier this week. The doctor was unclear to us and had been sending us to lots of specialist. Today when they got the result of the CT scan they let slip the fact they were looking for plagiocephaly. I feel very put off and offended that they felt the need to hide from me what they were looking for! If you don't know what that is? It is a malformation of the skull to where one side can be flatted severely and in bad cases can have brain damage along with it! They are now saying that there is a increase in this disease! That being because of the campaign, "back sleep campaign"! I really feel hurt that they treated me as if I am an unfit mother before having any proof! They had me scared all week end and I did nothing but stress out about my baby. I stayed awake from fear he couldn't see or hear to fear he had some horrible disease that would take him from me like leukemia! I am keeping his final specialist appointment but my husband and I have both decided that if these appointment go that he is a perfectly healthy baby I will be finding a new doctor. While I want a doctor to take precautions I also want honesty! The CT scan was normal and showed no sings of plagiocephaly! I'm meeting with a physical therapist for my baby next week and plan on bringing up this and why the doctor would have kept it secret what they were looking for? When I had actually asked twice what they were looking for? All I got was he had poor eye dilation out of them! Don't we as the parents of these little patients have the right to know what they are thinking and looking for? Has anyone else had this problem with their baby's doctor? Tell us what you think of my story and if you have experienced something similar let us all know. I feel this was unacceptable of my child's doctor to do to us!

Recources: Look up plagiocephaly to understand more!

http://www.plagiocephaly.info/faqs/what_is_plagiocephaly.htm

http://kidshealth.org/parent/general/sleep/positional_plagiocephaly.html

http://www.babycenter.com/0_plagiocephaly-flat-head-syndrome_1187981.bc

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Wow that is wild. Why wouldn't he tell you what is going on? The only reason that a doctor is allowed to withhold information like that is if the doctor thinks that the child is under neglect or mistreatment. This is clearly not the case because it is demanded by the The American Academy of Pediatrics to put your child to sleep in their backs; plagiocephaly is at no possible way the parents fault.

There is an ongoing petition demanding that all doctors must discuss plagiocephaly with parents and evaluate carefully and discuss treatment if necessary. Check out http://www.petitiononline.com/0799/petition.html for more info. (+ info)

How can u tell if your infant is hurt from a fall?

My 9 month old rolled off the bed and he cried a little but i do not see any bruising on him anywhere. He wears a DOC Band helmet for his plagiocephaly. Do you think it protected his head from the fall? Serious answers only please I am a new parent and I am worried.

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I was told by my daughter's doctor:
a fall of 4 ft or more onto a hard surface
non being able to calm baby after a few minutes
a squishy, crunchy or soft spot (other than the natural soft spot) on the skull
baby falling asleep and not wanting to wake up or being lethargic
vomiting
or pupils that are very different in size (one big, one small)
are all things that warrant an urgent trip to the doctor or hospital
Hope this helps (+ info)

Is there help for plagiocephaly?

I HEAD A FLATTENED HEAD ON ONE SIDE ,IS THERE ANY HELP FOR THIS ISSUE

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Unfortunately, for an adult, there isn't any passive help for the issue... if it is affecting your face, jaw, or ears, or eyes, there may be things that a plastic or oral surgeon can do to help -- but that is only a guess. These are generally the areas that might be affected if the plagiocephaly is severe.

We used a molding device called a DOC band for our son because he had a scaphocephalic (long and narrow) head shape, and his head went straight back. He was corrected from 6 months to 11 months. http://www.cappskids.org/CAPPSPlagioKidQuinn.htm He is now almost 7, and he has a slope, and is doing well.

Yahoo has several Groups related to plagiocephaly (search Groups - plagiocephaly) -- one is for parents with older children who cannot be corrected -- you might find answers to your questions there.

http://health.groups.yahoo.com/group/OlderPlag/ (+ info)

How bad does plagiocephaly (flat head) have to be before referring to specialist?

How bad does plagiocephaly (flat head) have to be before referring to specialist?
My daughter (3.5 months) was a 7 week premmie. She has developed a flat part of her head on the right hand side as she will not turn her head any other way whilst sleeping. If looking down on her head from above, her ears are way out of alignment (one is further forward than the other). One of her eyes only opens half. (not sure if this is related).

The health visitor wouldn't even look at it and said she will grow out of it. The GP said to ask the health visitor. What should I do? I read that a plastic surgeon is the correct specialist. Is this true?

I am so worried as these so called 'health professionals' keep missing problems in my kids. I had to push for a referral for my son and it turns out he had a major problem with something else. I have no choice in doctors.

http://s291.photobucket.com/albums/ll299/beaumont620/?action=view¤t=005.jpg

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my daughter was born 5 weeks early and in hospital she also sleeping with her head tilted to the left. She developed a flat head also. The maternal nurse said not to worry it usually starts to go back into shape once they start to roll over. She is now 14 months and her head is still a little bit out of shape but is not really noticeable. If it is really bad you can get a helmet. Your daughter will need to see a paediatrician. Take care (+ info)

Baby hates to wear plagiocephaly (flat head) helmet? Please share your experience if your baby had a flat head?

My baby was born with torticollis (stiff neck due to torticollis) it got corrected with physical therapy. With it he develop a bad flat spot since his muscles were so tight that made his head laid on the same side. Try repositioninaggressivelyly and it not work. He has prescribed a helmet to wear 23 hours a day. He hates his helmet with passion. I've noticed personality changes when he wears the helmet such as head banging and pulling his hair out of frustration, that is not counting the overall unhappiness. He has no facunevennessss from the plagiocephaly, but I would say that is still kind of flat. With his hair growing it is less noticeable, but I wonder if I am causing emotional damage to him. He cries, wakes up many times trying to yank off his helmet, and is not able to sleep well until we take it off, he also seems to resent that I am the one who puts it on (he seems angry not smiling to me, unhappy) now Dad is starting to put helmet on. Please share your experience if your baby had a bad flat spot and got better with time. I am almost sure the helmet affects him emotionally since we observe weird behaviors when we leave it on. My heart just hurts because I want him to wear it, but he can just stand it. Your advice is greatly appreciated
My baby has been wearing his helmet a little over 3 months, at the beginning he did not mind, he even seemed not to noticed that he was wearing the helment. It was gradually that we started to noticed personality changes.

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they sell helmets to shape babies heads now

mark k (+ info)

Anyone ever heard of plagiocephaly?

My daughter is going to be 5 months old this friday. I was told I need to take her to have her head evaluated. They tell me it is purely cosmetic and may need to be fitted for a helmet to help mold her head as she gets bigger. My question is, her appointment is in 6 weeks, is there anything I can do in the meantime to maybe help re mold her head now? Is it unsafe to put her to sleep on her belly now since she can move if she needs to?!

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There isn't anything you can do now to mold her head. It won't be a problem to wait 6 weeks; the doctor would have given you a closer appointment if it required immediate attention.
As for her sleeping position, she should sleep either on her side or her back. She will move to her best position once she is asleep.
Thank goodness it is a birth defect that is easy to fix! (+ info)

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