Plagiocephaly

Updated on February 03, 2007
L.A. asks from Fayetteville, AR
10 answers

Has anyone had a baby diagnosed with Plagiocephaly? My doctor is encouraging us to get our seven month old into a helmet, and we are struggling with the decision. We don't want him to be upset later that we could have helped re-shape his flat head and did not, but the helmets look cumbersome and the cost is outrageous. Also, I don't think insurance will help pay. Has anyone used the helmet, and is it uncomfortable for the baby? Is it very effective? Just to be clear, I am not concerned with the idea of this being cosmetic surgery. I feel cosmetic surgery is changing something that is already normal. His head is completely flat in the back, and that is not normal. I just want to know what has worked for other children and what to expect from this intervention.

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M.N.

answers from Shreveport on

I don't know anything about it, but Jenny McCarthy mentioned her son needing a helmet to reshape his head in her book "Baby Laughs."

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E.C.

answers from Little Rock on

My 18 month old son was not diagnosed with plagiocephaly but the right side of his head is somewhat flat. We put him in a helmet about 8 months ago and there were pluses and minuses. On the plus side, the helmets are very lightweight and easy to get on. We were blessed that he slept through the night from the time he was 3 weeks old. He never slept through the night with a helmet. During the day it didn't bother him much but he couldn't sleep in it. We just had him wear it during the day and still saw some improvement in as little as a month. After three months in the helmet, he learned how to take it off and even after we put a buckle on it he wouldn't keep it on. We finally gave up a few months ago. I can still tell that his head is not perfect, but with his hair most people don't notice. Our orthotist has said that the only time it would be noticeable is if he loses his hair later in life. I don't know if this helps, but that was my experience.

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R.M.

answers from Houston on

My daughter, Emily, was born at 24 weeks and developed Hydrocephalis. After surgery to install a shunt they kept her on one side too long and her head was misshaped. We had her in a helmet for a year and it did help. We only kept it on her at home, which was a difficult task. Her head is still somewaht awkward but it would have been much worse had we not used it.

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M.E.

answers from Little Rock on

I am a nurse.. My best friends baby was born at 24 weeks and has cp. He is 10 now and used a helmet only at night for a while (not sure how long). His head looks really normal. If you have seen premature babies heads they are really flat from us turning their heads from side to side, and laying in their isollette for such a long time. If you are able to get the helmet that would be a tremendous help for your son. No one has to see it. Just your family or friends- your son would just wear it at night.

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C.S.

answers from Sherman on

There was a little boy a few months younger than my daughter that had to where a helmet. Him and my daughter shared a babysitter. I got the courage to ask her about it one day. She said he got used to it really qucikly and the other babies were so small- 9 months to 18 months- they didnt think he was any different. He did develop slower than the others. It took him longer to crawl and roll over but what would you expect with that heavy thing on his little head? When he finally got it off he looked much better and he caught up with the other kids in no time. In my opinion it is definitely something you should invest in for your childs' sake. I don't know much about the costs or where to purchase them but you may look into charity. I know a lot of people don't like the sound of that but it is a necessity and if you can't afford it you do what you have to. Maybe the company that makes them or sells them can help you out, maybe even finance. Check all your options.

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K.T.

answers from Pine Bluff on

I have a friend who's daughter had the same condition. She waited until Becca was just over a year old before getting the helmet. It was very uncomfortable for Becca by then. Only 2 years later, Ryan made his appearance with the same problem, and this time my friend got the helmet by six months and it was much more comfortable for him. I think it is a personal choice. I don't know if there are any health problems associated with a flat head and am not a doctor, but if it were me, I would go ahead and get the helmet. They even have some very cute ones now.
Good luck with your decision.
K. T.

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K.A.

answers from Houston on

my sisters' boy was very overweight and did not turn throughout the night. He had this problem and believe me the boy's head was flat in the back. they had set up an appointment to see the plastic surgen about getting the helmet. he didn't get to go because of scheduling issues an and the appointment was a hours away from where they live. Anyway to get to the point ever since he started moving around and becoming more active his head as started to correct itself. It is not one hundred percent round but way better and not flat. So I think your child's head can be corrected but it won't be completely rounded, but my sister's boy just needed time to get his plump little body moving to correct his.

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K.B.

answers from Houston on

I don't know about plagiocephaly, but my ex sister-in-law's son was born very premature (24 weeks I think) and he had to wear a helmet. It helped him tremendously. I know money is an issue, but to me I would spend the money now instead of having complications later in life. Hope everything works out for your family. God bless.

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K.E.

answers from Anchorage on

My son was diagnosed with Plagiocephaly. We got his helmet when he was about 9 months old. I was really torn about getting it, so I totally understand what you are going through. Ultimatly we decided to do it and I am glad we did. The doctor told us that having a flat spot was more than just cosmetic. As he grows the flat spot can actually affect things like depth perception, hearing and jaw alignment. The place wear we got Jayden's helmet did a free consultation where they measured his head and they were really up front with us about whether or not he could benefit from the helmet and in Jayden's case he could. As far as the helmet being bulky. They look a lot bulkier than they actually are. They are very light weight and jayden barely even noticed he had it on. It was actually kind of nice because wearing the helmet coincided with him learning to walk. We were able to avoid a lot of the bumps a bruises a lot of parents go through because the helmet protected him. His daycare actually said they wished they had one for all of the babies! It was awkward at first because a lot of people stared and I was really conscious of it, but the more he had it the less I noticed people looking and I came to really like that he looked like a little tough guy. I was also amazed at the number of people who came up to me and said their babies had just gotten finished with their helmet. Some people choose to paint or decorate the helmets. I chose not to because I likened it to wearing the same baseball cap everyday. I didn't want to have to match his clothes to his helmet! One of the hardest things for us was driving to Dallas every 2 weeks for an adjustment. I don't know where Fayetteville is, but we live in Bossier City, LA and Dallas was the closest clinic for us. I imagine it would be for you guys too. The cost is the other thing that is difficult. It's $3000 and many insurance companies don't cover it. Ours didn't cover any of it, but yours may depending on the severity of your sons case. They do offer several payment plans though. That is something that the clinicians would be able to tell you about in a consultation. I'm glad we did it. I can see a total difference in the shape of my son's head. He actually only wore it for a couple of months and had it off just in time for his first birthday.Good luck to you! I know this can be an agonizing decision. My son is only 15 months old know, so it hasn't been long since we did this. PLEASE feel free to message me if you have any more questions. I know this can be tough.

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A.P.

answers from Houston on

I am not familiar with this condition personally but I did a bit of web surfing for you. The internet is a powerful resource. There have to be organizations that help with this sort of thing as far as paying and appealing with your insurance company.

Here is what I found:

This website has all sorts of great info. They talk about how to prove to your insurance its NOT cosmetic. Also they have information about possible free airfare and that you can deduct traveling expenses from your taxes etc.

http://www.plagiocephaly.org/help/
http://www.plagiocephaly.org/support/insurance.htm
http://www.plagiocephaly.org/support/travel.htm

A treatment provider:

http://www.cranialtech.com

A non-profit organization that can help you:

http://www.cappskids.org/

I hope some of this helps you!

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