misshapen heads

Discussion in 'The First Year' started by rebekahj, Aug 23, 2009.

  1. rebekahj

    rebekahj Well-Known Member

    I'm sure that this has been discussed recently but the search function isn't working (?). My boys are seeing a PT for their torticulus and are doing well on that, but we're having a lot of trouble positioning S to get rid of the "point" at the back of his head. He's just too active. A's head is a better shape but still lopsided. Have others done those helmets? Do they help? Or has anyone had luck with repositioning or their babies just growing out of it? My PT keeps telling me that right now is when it needs to be fixed (they're 5 months adjusted)
     
  2. jnholman

    jnholman Well-Known Member

    Please dont kill me, but Jonathan had a badly misshapen head and I was not going to put a helmet on him. He is my demanding child and it is was going to beat the death of me. No science about it...but while I was in the church nursery, his sitter was speaking to me about what she did for her child and she was doing this with Jonathan....doing a bunch of PT stuff that I am sure you are already doing. But the big thing was having him sleep on his belly. At first, I did a ton of tummy time so I knew he could move his head from side to side and it really helped.

    My pediatrician was shocked at how much better he was at his 4 month visit without using PT. Unfortunately, my children are never flat on their backs anymore. The activity mat is on the couch so their heads are supported by memory foam and not the hard floor.

    Good luck, it is hard I know
    Jenn
     
  3. seamusnicholas

    seamusnicholas Well-Known Member

    Sometimes, repositioning will help but if it is severe, a helmet is needed.

    My son had torticollis also and had pt and also a misshapen head. We took him to get his head measurements and he was moderate and the repositioning helped him.

    My sisters son was more severe and needed the helmet. Your PT is correct, this is the time that the helmet is recommended. I think babies with helmets are so darn cute!
     
  4. sharongl

    sharongl Well-Known Member

    Kyle's Story

    Here is a link to an essay by a TS member whose son had to have a helmet. I have met Kyle many times, and his head is now perfectly round. There are many reasons for plagio, and many times with multiples it is due to being squished up in the womb, and in that case positioning isn't likely to help. I can also tell you that I know kids who were never treated who now, at age 7, have funny looking heads when they swim (otherwise their hair puffs up to cover), when my boys were babies, not as much was known about plagio as there is now.

    Personally, I would follow the advise of the PT, she does know what she is talking about, and the window for the helmet working is very short.
     
  5. orangeyaglad

    orangeyaglad Well-Known Member

    My little isabelle is currently wearing a helmet. she had severe plagiocephaly where one side of her head was completely flat. at her 4 month visit the spot seemed to have gotten a lot worse, so they referred us to the neuro doctor where he did an evaluation. sure enough as soon as he walked in the room he said that she need a helmet badly. we forked out $2000 and got her into PT for her torticollus. At about 4.5/5 months she started sleeping on her belly and doing much better with belly time. that's when her head started to round out. she doesn't wear the helmet to bed at night or during her naps...she absolutely refuses to wear it while she sleeps (her doctor informed us that this is normal), so she wears it during the day for only a few hours. I can tell you from experience that it absolutely, positively works. Her head is so beautiful now. In a month or two her head will be perfectly round. I think with the combination of sleeping on her belly, playing off her back, PT, and the helmet her head has rounded out quite well.

    My husband and I struggled with the decision to get her one, but came to the conclusion that her head needed that extra "push" to get rounded out. I cried for many nights thinking if I was doing something horrible by constricting her to wear a helmet, but she really doesn't mind it much at all. She goes weekly for adjustments and she seems to do well with it for the few hours of the day that she does wear it.

    I agree with PP, the window for a helmet is very small. Around 4-5 months is the perfect time to get one. Soon after that the skull isn't has pliable and starts to harden to it's current shape. If it's truly a concern talk with their pedi and have them give you a referral. Our pedi wanted to wait until she was 12 months for the helmet, which is WAY too late. I did not let her doctor get away with that and really persisted because it wasn't getting better. Good luck and I hope this helps!

    Here is a photo of izzi in her helmet: http://www.facebook.com/photo.php?pid=33789194&l=66c40f722b&id=57208067
     
  6. DATJMom

    DATJMom Well-Known Member

    Christine, she is soo cute with that yellow helmet on.

    I agree with that you should follow the recommendation of your PT. They are the experts in that field and should guide you the right way.
     
  7. rebekahj

    rebekahj Well-Known Member

    I thought that you had to wear the helmet for 23 hours a day? I'd feel much better if it could be done for a few hours rather than all the time.

    My mom was at the apt with the PT and she was absolutely horrified that I'd consider a helmet! :faint:
     
  8. pamallhoney

    pamallhoney Well-Known Member

    Just consider if it would be something you would regret. One of my twins had a flat spot on the upper backside of his head when he was born. I let him sleep on his belly starting at 3 months old to see if it would help. It's not horrible, but I can definitely tell the twins apart by their head shape. So can other people. It is something that I think about the what if's. What if we would have got him a helmet, etc. Now there is nothing we can do. It's such a short time to correct something that would last a lifetime.
     
  9. becky5

    becky5 Guest

    I would definitely do it if it was recommended. We had flat spots around 4 months, and were able to correct using aggressive repositioning. If there wasn't improvement at their 6 month appt, we would have gone for helmet consults.
     
  10. orangeyaglad

    orangeyaglad Well-Known Member

    Thank you! She loves yellow and always goes for yellow things, so we figured that a yellow helmet would be right for her.


    The recommend amount of time to wear the helmet is 18-23 hours, but since isabelle will not sleep in her helmet at all that time is drastically reduced. With a combination of the helmet, PT, and sleeping/playing on her belly her head has rounded out significantly. If she didn't sleep on her belly or play on it or have PT she probably would wear the helmet all day. I think that it's pretty drastic to wear it all day. It's a decision that DH and I battled with, but it has help just wearing it a few hours a day. It won't be a perfect round baby head, but I don't have a perfectly round head either. Her doctor said she will be to 80-90% when finished.
     
  11. tinalb

    tinalb Well-Known Member TS Moderator

    If it were me, I would do my research, but in the end I would most likely follow the recommedations of the PT. Now is the time to fix it & if you miss that window, it might or might not ever be corrected. In my mind, what's a few months with a helmet in the grand scheme of life? :hug:
     
  12. debid

    debid Well-Known Member

    My kids wore helmets 23 out of 24 hours every day for 7 months. They really liked their helmets and adapted to wearing them immediately. One had moderate and one had moderate-severe flattening and since we didn't start until after a few months of aggressive repositioning efforts, they were 7 months when they started wearing their helmets (CT scan at 6 months -- it took a month to get from there to having the helmets). It took a long time for the correction and we were told at the ortho office that they like to see them start at 4-5 months. So if you're going to do it, don't wait!

    My husband worried a lot about it but the worry was all his. Once the kids were wearing their helmets, I was surprised at how many people approached us and said their child went through it and how happy they were with the results. A few people asked why they had helmets. We had ZERO negative reactions or remarks. I also had one gal tell me she opted not to helmet even though it was recommended since it was in the back but wished she had done it because the flat spot was still very noticeable at 3. I also saw twin boys at the airport who had the same side-flattening that my boys did and they looked to be 3-4 years old. I know there is some rounding out as the head grows IF the child is not sleeping on the flat spot but I couldn't keep my boys off of it until they had the helmets on and I tried everything. I have no doubt that they'd still have obvious flat spots today if I hadn't used the helmets.

    ETA: I forgot to mention that treatment stopped when they learned to remove their helmets and that became the cool new thing and I couldn't get them to leave the helmet alone. One boy (the one who had less flattening) was fully corrected but the other was not. However, he no longer favors that side and his head shape continues to improve.
     
  13. weberboys

    weberboys Member

    Both of our boys have helmets and they look sssoooo CUTE in them. They started at around 4 months old. The younger they are the greater success you will see. We saw tremendous results in just the first week. They are in the process of getting their 2nd helmet now - a decision we had to make personally but if anyone saw their heads they would not even know they had flat heads before. They look very normal but it is one of those things as a parent you just have to decide what is best for your child. The helmets do not bother the boys at all. We are so glad we did it; not that insurance does not cover it so it is A LOT of money out of pocket for us. Our boys have always slept on their backs and do lots of tummy time!! Doctors told us it is very common for twins to have flat heads because there just was not that much room in my belly for them to move around. Again, we are very greatful we started them on the helmets at a young age. All our family and friends have seen the tremendous results in both of our boys head shapes. If you have any other questions let me know I would love to answer them.
     
  14. rebekahj

    rebekahj Well-Known Member

    Thanks for responding even though you're shy. :) I'm afraid of how they'll look in them, particularly if they have to have them through Christmas when I'm going back to my inlaws. Boy will I get flack from them! You've never gotten people assuming that something is really wrong with the boys or saying that it's cruel? Did all of their hair rub off? :( Did they wear them 23 hrs a day? Results in a week, wow! My boys are 5+ months developmentally so I want to start right away. I've made an apt to get them assessed next week. I really hope my insurance will cover them! They said the helmets are about $2800 each? :faint: My boys do tummy time a lot but the one with the real problem won't sleep on his tummy. Our other boy started out worse at birth but now sleeps on his tummy all the time and his head has really rounded out.
     
  15. weberboys

    weberboys Member

    Your boys will look adorable in them!!! I have so many pictures up at my work with the boys in their helmets and everyone walks by telling me how cute they look. We have received so many positive responses from strangers, friends, family etc about the helmets. I have had a few people ask "what is up with the helmets?" but it is only because they are unfamiliar with the whole process (I was too). I just explain what they are for and people are in AWH as to what great technology was created. My sister who lives in Puerto Rico responded to a picture I sent her of the boys and she thought I was being an over protective mommy not wanting the kids to hurt themselves - ooops I guess I forgot to inform her of what we were doing; she did not have any education on the helmets either.

    When you are back with family at Christmas time you can take the helments off every now and then to get some family photos to be helmetless. We had a friend come over to our house to do a photo session with the boys and they rolled around helmetless for about an hour "trying" to be modelike babies [​IMG]

    You are correct on the price of the helmets but ask for a twin discount. I think we got $500 off each helmet the first time and then because we are getting 2nd ones for each of the boys they knocked off $1000 each. I think they realized it is tough for families of multiples especially when both children need them and insurance won't help out! We are very gracious to the discount they gave us.

    We were often told that no matter how hard we tried to get the boys to ly with their heads the opposite direction that it would not correct their problem - basically they were born with flat heads. We did exercises with them etc etc but knew it was not going to make that big of an effect. We did what was best for our scenario and are very happy with our choice. Our boys do not sleep on their tummies they still sleep on their backs. I encourage you to go in for the consultation since in most cases this is free and get the evaluation done. You may only need one helmet. I was very nervous in the start with what types of responses I woud get but now our entire family acts like its nothing - I admit it I like to show my boys off whether they have the helmet on or off. You can decorate them (we did very basic little stickers) to make them less "medical" looking. My husband can't wait to get the 2nd helmets painted professionally - he wants them all done in the San Diego Chargers logo/colors. He is a big football fan and thought it would be fun for football season - he is crazy!!!! [​IMG] Good luck!
     
  16. orangeyaglad

    orangeyaglad Well-Known Member

    We never get negative comments and our families completely understood and were empathetic. Isabelle's hair is not rubbing off, but she doesn't wear it 23 hours a day. Also, for things like pictures, baths, swimming, and eating messy foods the helmet can be taken off. Wearing it 23 hours is not a steadfast rule, it's just the recommended amount. Isabelle's helmet doctor told us that a lot of babies just refuse to sleep in them, so wearing them as much as possible during the day also does the same trick. Yes, you will see results almost immediately. We did within just a few short days.

    I was told by the starband company here in orlando that most insurance companies will not cover the helmet because it is considered strictly cosmetic. Her helmet cost $2000. We paid $1500 upfront and paying the rest of the money in $100 installments per month. They will work with you because they understand the importance.

    Good luck!
     
  17. AmynTony

    AmynTony Well-Known Member

    I don't understand the horrified reaction from your mother or IL's...would they be just as horrified if your toddler had to wear glasses or hearing aids? The helmet time is short - a misshapen head is forever....

    also I had a friend that started her son at 5 months and he only had to wear his for 8 weeks and he was done...
     
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