Anyone have a Little One with Plagiocephaly?

Maggie - posted on 04/11/2012 ( 21 moms have responded )

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Anyone have a Little One with Plagiocephaly? My 6 month old just started in her helmet. We are on her 5th week and she has had so much progress. :)

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Maggie - posted on 05/02/2012

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I have gotten tons of advice from them. :)

This is at a babycenter.com They have many groups you can join its pretty awsome. I love it here. For example I am in the torticollis group, Plagio cephaly, There October 2010 mommies, and October 2011 mommies groups.

Here is the link to the Plagiocephaly group.
http://community.babycenter.com/groups/a...

If you have a facebook there is a group of mommies who have littleones in helmets and also little ones who have already graduated out of helmets. This is the link to the group.
http://www.facebook.com/#!/groups/plagiocephaly/

and last I bought some cute helmet decals here if your intrested. This mommy who makes them also had a daughter in a helmet and is on the facebook group.
http://www.facebook.com/#!/pages/Plagiocephaly-Band-Designs/213410388700411

Hope you get use of these links. :)

Logan - posted on 05/26/2012

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My daughter who is now almost 4 had it along with torticollis and it was all caused by scoliosis. She was diagnosed with all of it at 6 weeks old. She wore her helmet for 3 months :D they were thinking that she would have to wear close up to 6 months. Just keep your head up sometimes babies just favor one side and of course most parents not knowing about it they dont ever think twice about a child favoring one side. :D good luck to you guys :D

Vicki - posted on 05/09/2012

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I would suggest not using vinegar...

I have a baby who has been in his helmet for 8 months now (he is 20 months now)... The improvement has been huge, but the smell has not been too bad, it is only noticeable when the helmet is removed. The clinic should provide you with a cleaning solution and at the worst case scenario you can use some diluted baby shampoo thourally wiped out.

Hope this helps and would love to chat to anyone

Katherine - posted on 04/19/2012

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No, but I found this:





If a doctor determines that your baby has positional plagiocephaly, his recommendations will depend on your baby's age and the severity of the condition.



If your baby is young enough and the condition is mild, he'll probably recommend repositional therapy, a combination of simple measures designed to help your baby's head round out. In severe cases, cranial orthotic therapy (using a helmet to change the shape of the head) may be required. Keep reading to find out more about these therapies.

Repositional therapy



Repositional therapy involves regularly changing your baby's position to avoid putting pressure on the flattened area of the head. (Babies tend to settle into the same comfortable position in their crib and infant seats.)



Here are ideas for changing your baby's position during daily activities and strengthening neck muscles:



Bedtime and naps: Alternate the direction your baby's head is facing when you put her to sleep. To encourage this, lay her down with her head at a different end of the crib for naps and each night. If her crib is against a wall, she should naturally turn her head to look out into the room. (Or you could hang a mobile outside the crib to attract her attention.) Vary the direction she has to turn to look and she'll change the side of her head that's pressed against the mattress.



Caution: Don't use rolled up towels or positioners in the crib to get your baby to keep her head to one side. These increase the risk of SIDS and suffocation.



Feeding time: Alternate sides whenever you feed your baby a bottle. (You'll do this automatically when you breastfeed.) Adjusting your baby's position during feeding helps avoid pressure on the flat spot.



Sitting time: Avoid leaving your baby for extended periods of time in a car seat, infant seat, baby swing, baby carrier, or other place where her head is likely to rest on the same spot.



Tummy time: During waking hours, supervised tummy time is essential for the development of motor skills. Tummy time also helps prevent plagiocephaly by strengthening babies' neck muscles. Stronger neck muscles enable babies to move their head around while sleeping so it doesn't always rest in the same position. To make sure your baby enjoys being on her tummy, take the opportunity to put her on her tummy when she's not asleep starting in the first few days of life. Babies who aren't used to being on their tummy from day one may have to be coaxed into it, starting with a minute or two at a time.



Physical therapy: The doctor may also recommend daily physical therapy exercises to help increase the range of motion in your baby's neck. These must be done gently but consistently.



If these measures aren't successful, the next step is to consider cranial orthotic therapy.

Cranial orthotic therapy



Babies with severe plagiocephaly usually wear either a custom-fitted helmet or a headband (called a cranial orthotic) for about 23 hours a day to correct the shape of their head. This treatment generally lasts two to six months, depending on how early you start and how severe the problem is.



Helmet therapy is always coordinated with physical therapy to achieve the best results. It's most successful when started around 6 months of age. Some experts think the headgear offers little help after 12 months of age because the skull resists reshaping as the bone thickens.



If your baby needs cranial orthotic therapy, your doctor can recommend a helmet or band and tell you where you can have it made. You'll need to have a 3-D photographic image taken of your child's head so the device can be custom-fitted.



Wearing headgear all the time may sound awful, but the helmets and bands are lightweight, and most babies quickly get used to wearing one.



This kind of treatment can cost up to $4,000. Some insurance companies will cover it in their orthotic benefits, but others consider it cosmetic or experimental and won't pay. However, many parents have successfully appealed their insurance company's rejection and received payment in the end.



The success rates for this kind of therapy are high when it's started early (around 6 months). If you're starting late, your baby's skull may not become perfectly symmetrical. Keep in mind that some asymmetry is normal. And as your child's hair grows, it will likely hide some of the remaining flattening.

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21 Comments

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Ashley - posted on 04/04/2013

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My youngest had a helmet till he was 13m old. And did physio therapy for tortocollis which is what cause his positional plagiocephaly

Rose - posted on 04/03/2013

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Mine is getting his helmet next week. Trying to smooch his sweet head as much as I can before it goes on.

Rachel - posted on 12/03/2012

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ShunrI Paige- It will help that he stil has a soft spot, My son needs a helmet and our insurance would not cover we lost time with the insurance battle and then coming up with the cost ourselves...I have a friend whos son did not go into helmet until 10 months...yes it is possible to correct it just may mean he is in helmet a little longer than say a 4 mo old or 6 month old...my firends baby was in helmet for 8 months...he started like I said at 10 months my son is only 4 months and they say he will only need to wear for 3-4 months...so I think it can be done just may take a bit longer....good luck and it is good that you pushed...a mommy always knows when something is not right!!

Shuntai - posted on 12/03/2012

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Hello I am truly upset. My son came out the womb with Plagiocephaly from him laying on my pelvic. I had a c-section and i was concerned about his head.The doctors said it would shape on its own. At two months old i took him to his pediatrician and told her i was concern about the left side of his head being flat. She lead me a stray every month after that. saying just give him tummy time. i had to do research on my own to find out what was wrong with my baby. i already had alot on my plate because my mother was dying of lung cancer. so i confronted the pediatrician about his head at six in a half months. then she only told me he had plagiocephaly because i told her first. What bothers me the most is Dorian will be eight months on the 9th on this month and he just now been in his helmet a week. She made us lose valuable time and I don't feel like he will get any corrections because everything i read says you will get better result at 4-6months and he is way past that age. He will have to wear the helmet for three months.. my concern is will the helmet even do anything. i thought as long as he had a soft spot it would help :-(

Vicki - posted on 05/23/2012

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Leo has had his helmet of for almost two days this week as he has had a streaming cold and a high temp... Plus coupled with the weather, he has truly been suffering.

We take Leo swimming once a week and naturally the helmet has to come off... But an occasional hour here and there isn't going to do any harm as long as the majority of the day it is on, as it is unlikely that in tat hour the head would have grown significantly.

Glad to hear that you managed to get the problem sorted bobbie, and welcome Presley.

Yeah, cot death has reduced by 10 times but occurrences of plagiochephaly or brachychephly has increased by 10 times. Unfortunately tummy time is not promoted enough by GPs and other health professionals and most don't even know about these cranial deformities and just shrug them off saying that it will correct itself over time. My eldest (8 years old) is at a small school with only 44 children (juniors and infants) and I know of a least 7 of them have some cranial deformities, 3 have learning difficulties, 1 has jaw, teeth and speech problems, and 1 of the girls has her hair constantly long and never tied back as she is aware of her head shape. Almost all of the parents have said that they wished that the GO would have said something when they mentioned it and had not just taken it as truth that it would correct itself just because a GP said it.
Our clinic is always compaigning for more awareness and for leaflets to be handed out at birth and whenever a child sees a health professional regarding tummy time...
If only we had put Leo on his tummy for a few minutes even time we changed him(even if he screamed), or even putting a rolled up towel under his mattress and alternating the sides, then all this might have been prevented. I am going to speak to my consultant tomorrow reading having some info on tummy time so I can create and pass leaflets out to any pregnant mums or mums of small babies that I meet so that they can be aware of tummy time

Xxxx

Bobbie - posted on 05/23/2012

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Hi Vicki!

Thanks for your advice! I didn't see this before - but our appt discovered that her helmet was in fact too tight - her head apparently grew quite bit since our visit!

Anyway, we've been doing 23 hours on / 1 hour off and it's going great. The first day we checked it here and there and no red spots. Thank goodness! And she's getting more comfortable with it too.

Glad to hear it's not so strict though if it has to be off for sicknesses and whatnot - I wondered that! And also, we had my daughter in our kiddy pool last weekend and had to take it off - we worried it was off too long (1-2 hours).

I go to Cranial Technologies.

Presley - welcome aboard! You are most certainly not alone - it seems this is very popular these days. I see a lot of kids wearing the helmet these days. If you need anything, let us know :).

-Bobbie-

Presley - posted on 05/16/2012

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My son does and he should start his helmet next week.. I'm glad to see this post so I know i'm not alone.

Vicki - posted on 05/16/2012

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No two days should be fine...

You could try one hour on, one hour off and leave off for sleep and naps... That was the beginning of our plan that we were given... Our plan was as follows

Day 1 - 1 hour on, 1 hour off, leave off for sleeps and naps
Day 2 - 2 hours on, 1 hour off, leave off for sleeps and naps
Day 3 - 3 hours on, 1 hour off, leave off for sleeps and naps
Day 4 - 4 hours on, 1 hour off, keep on for naps and sleeps
Day 5 - 6 hours on, 1 hour off, keep on for naps and sleeps
Day 6 - 23 hours on. 1 hour off, obviously keep on for naps and sleeps.

As I said, leaving it off for a few days is not going to set you back too much, we occasionally leave Leo's off if he has a high temp. About 4 months into his helmet he had chickenpox and had to keep it off for a week and it has had no detrimental effects... I personally would try to do the one hour on, one hour off and if you are still having the redness that doesn't fade after the hour off then to leave it off for two hours instead.

What clinic do you go to???

I look forward to talking more with you

Vicki

Bobbie - posted on 05/16/2012

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Hi Vicki,

Thank you for the reply!

Yea, I can't wait to start getting used to it a little more and see results. It's only been about a week since she's gotten it on, so I can't expect too much quite yet.

And yes, we started using the plan we were given - put it on, check it every 3-4 hours for redness, leave the helmet off until the redness goes away, put it back on, repeat. However, her forehead just seems to stay red. Finally, I just decided to keep it off for a night - I called the place and they said either it's heat rash or possibly too tight. I think it's the latter. Unfortunately I'm unable to take off work, but our appointment is in 2 days - we'll get it resized then.

Do you think 2 days will be that bad if she's not wearing it for that long? Just curious on your opinion.

Thank you again :).

-Bobbie-

Vicki - posted on 05/15/2012

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Bobbie,
I think we all are emotional over it to start with, but as soon as you start to see the results you are able to overcome that and be proud that you are a mum to a starbaby, and that you are doing what is best for them.
I agree with the cleaning, rubbing alcohol is the best but my consultant in steeper clinic Leeds, Kate, told me that if I go away and forget the solution then I can use baby shampoo as a last resort.
There can be quite a bit of redness to start with but hat should all fade within 1 hour, if it does not then I would contact the clinic, we had a struggle for the first month as Leonardo had an inflamed area and we had to have a bitaken out to compensate for this, but talk to your clinic they are always willing to help the best they can. If in doubt take it off.
Have you been following the plan of introducing the helmet to your little ones head??? If not then that might be the problem too...
Hope all starts to get better

Bobbie - posted on 05/15/2012

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Hi Everyone!

My little girl is 8 months and just started with a helmet as well! She's doing okay so far but I can tell it's uncomfortable for her. She has redness on the front of her head from it, like maybe it's rubbing. She's only had it a week, so I think they may need to make some adjustments to it still - I took it off last night because of this - was that wrong? I'm going to call them to make sure.

In regard to cleaning the helmet, I've been told to NOT use anything except for rubbing alcohol for cleaning. And you can scrub it pretty vigorously without worrying about messing it up.

Anyway, this is tough for me to see my little girl in that helmet. Anyone else emotional over it?

Thanks!

Bobbie

Katherine - posted on 05/02/2012

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You could probably spray some vinegar in it. It will take the smell away. Part white vinegar, part water.

Mande - posted on 05/02/2012

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My daughter has plagiocephaly and has been in a helmet for one week now, so far so good and I already see a HUGE improvement ..she has about 5-6 more months to go. I've been looking everywhere to find support groups and to see what other Moms with my situation have been goin thru. Any tips would be much appreciated! ...I hear the helmets can get a nasty odor..any ideas on how to stop that or cleaning the helmet??

Maggie - posted on 04/19/2012

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Thanks I will definetly check. I wanted to see what other mommies where doing when there little ones get dry patch spots due to the helmets or how to prevent skin tears in areas the helmet sometimes seem to rub to much on the head. It seems so painful. My little one is more comfortable with her helmet on than off. Once we remove it she just claws her head because its so itchy and irratated. The hemet makes her hot and sweaty, causing her head to itch. I feel so bad for her. I know in the end itll all be worth it though.

Katherine - posted on 04/19/2012

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That's good that you found some groups. There may be some groups on here. Go to my communities, then all communities and type it in.

Maggie - posted on 04/19/2012

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Thanks for the info...
Little Emily is already in a helmet. She wears it 23 hours a day. It is only removed for one hour while we bathe her. Clean the helmet and once her hair and helmet are dry and she gets alittle break it gets put right back on. She gets physical therapy as well for her torticollis once every two weeks and we have stretches we do with her at home daily (about 10 times a day, sometimes more).

I was just hoping to find other mommies on here with a child in a similar situation.. I did find a group with many mommy with babies in helmets on facebook and a board on www.babycener.com

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