Flat head syndrome

This topic contains 44 replies, has 22 voices, and was last updated by  Nicky2009 1 year, 5 months ago.

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  • #6928993

    JenniferSD
    Member

    My little girl has had her ‘helmet’ on for almost 2 months now and the difference has been amazing. If any one would like to see her ‘before & after’ photos, contact me on my page with your e-mail address and I will send them to you (it’s a pdf file, so I don’t think that I can add it to this site). She has actually outgrown her helmet so she is scheduled to be finished with it in 3 days. They didn’t recommend a 2nd helmet but I am pushing for one because her ears are still uneven. They are running it through my insurance to see if they will pay for the majority of it.

    #6928994

    anniemarie
    Participant

    elliel- it is tough to reposition them without waking. i think it’s much easier said than done. after being with the twins i was a little nervous about my son ever needing a helmet i’m very fortunate that he turns his head from side to side when he sleep so i’m lucky to not have to worry about it. the other thing you can do is really work on keeping your LO not on their back when they’re awake. that will help to balance out during the day if you’re not able to get her to be on the ‘right’ side when she’s sleeping. best of luck with everything.

    #6928995

    Mylilangel
    Member

    Looks like im the only one in here. So forgive me if i have a conversation with myself. lol I just figured someone might can use this info.

    Well i was referred to a Cranial technologies by my pediatrician because my 6 mth old girl has a flat head. I panicked as a mom and always had her sleeping on her back. My fault i know. But SIDS scares me to death. The doctor their says she has brachycephaly which is flat in the back, wider face and increased head height . So we opted to start the helmet and see how it goes. I have united healthcare and was worried they wouldnt cover it. I have seen alot of cases where they havent, luckily they are covering 60% of it. The cost of the doc band (helmet) was 3600.00. I know pretty steep. But for her to be normal, ill pay anything. Beside it was my fault for putting her on her back. Anyways, we got the helmet on 2/13/09. For the first two days Every 4 hours you have to take the helmet off and check for red spots (pressure points) and documet how long it takes for the red spots to go away. Then put the helmet on for another 4 hrs. They dont wear it overnight until the third day. On the third day you go see the doctor and they check the head and make adjustments. Then you have to have her wear it for 23 hours a day for the rest of the time. I thought it would bother her really bad but she hasnt noticed it that much. Little cranky the first day but now shes fine. Her teething seems to bother her most. Its too early to tell if its making any changes with her head yet. So i will give it a month and see where she is with it. She is supposed to wear it anywhere from 10 weeks to 14 weeks, depending on progress.

    i have already decorated it with pink acrylic paint and alot of stickers. Hobby lobby had alot. The only problem is the paint is every easy to scratch. kind of like painting your fingernails. Not much for the paint to stick to very long. I tried putting Modge podge over it all as a sealer, and that seems to help alot. But i would recommend trying another coat of some sort of non toxic sealer.

    Some of yall might have heard of the star band, same concept just a competitor i think. But they use a star band. Dont know which works best but i was told the star band helmet is alot heaver. Maybe not so good for small babies.

    Well ill keep posting in here every so often to give updates on her progress. Im crossing my fingers that this works great. At the doctors office they have a whole book of before and after photos of kids they have worked on and you wouldnt believe the changes it did. So if your in the same boat and are not sure what to do, do some research and get your butt into gear because you think you have all the time in the world but you dont, they prefer you to start the treatment no later than 6 mths. I know some have started after but their is a deadline for them to be able to help. The skull gets too hard and cant get reshaped. So dont delay go to the doctors and research as much info as you can. Ive also read where adults who never got help are upset and cant get help and have had self esteem issues their whole life because their head was mishaped and when your heads mishaped your whole face is out of alignment. My daughter is only 6 mths and her ears are already slightly uneven because of this and one of her eyes are pulling back to make the eye smaller. They should be able to correct both. I will post a pic of her helmet.

    #6928996

    Mylilangel
    Member

    I just added photos of the helmet on my profile.

    #6928997

    Mylilangel
    Member

    Its been 4 weeks my lo has had her helmet on. After just two weeks i could see a surprisingly major difference. Its has started rounding out in the back. I really didnt think i would see any changes for awhile. But it was very drastic. Now im hoping the top of her head will start to change. Its real high in the back and slopes downward in the front. That part still looks abnormal. But we got time for it to change. Her apt is tomorrow so im hoping they take a new set of photos. It did take her a week or two to get used to the helmet. The worst part is at bedtime. Its hard for her to get comfortable. Also, i was worried that many people would look down on her but everyone has treated her with so much attention and really hadnt acknowledged the helmet at all. Im so glad everything is working out.

    #6928998

    anniemarie
    Participant

    just wanted to share this with you. i was a nanny for twins and they both had to have helmets. their mom was devestated and felt like it was all her fault (they slept in their carseats for their first month of life) anyway they started when they were about 6months old and both had them off by the time they were 8-9 months, i can’t remember. anyway the results were phenominal! luckily they both had growth spurts that occured when they helmets were on so we noticed a change w/in the first 4 weeks. it was a very expensive investment (they had acutally already reached their max so it didn’t matter for insurance) i called them my little skydiver babies, cuz that’s what the helmets looked like on them. just wanted to let you know how beneficial it was for them. hope everything turns out well for you LO!

    #6928999

    elliel
    Member

    Hi – I’m hoping you can help? My LO has flat head on her left hand side. The dr. has said we should try for the next 6 weeks to do everything to ensure she sleeps on the other side. She’s 7 weeks now and so she’ll be about 3 months when she has her next check. What are our chances of getting it to correct itself? Will 3 months be o.k for her to get a helmet or is it better before? Sorry so many questions.

    #6929000

    Mylilangel
    Member

    elliel-
    My lo started to have a flat head a few weeks after birth like yours. i went to my 2 mths apt thats when my pediatrician noticed it and said for me to start repositioning her. I did somewhat but i just couldnt get her to do tummy time that much. she hated it. And she loved sleeping on her back. Well when i went back to my 4mth apt which was really in her 5 mth. They told me that i needed to decide now if i want to start the helmet because the places where you get the helmet really like to get them started no later than 6mths. After that it takes longer for the the skull to shape and if you wait to long the helmet wont be able to help at all. Not sure when that is exactly. Youll have to ask your doctor. But i wouldnt worry to much right now if she is only 7 weeks old. You would be very suprised of how much your lo’s head will change as soon as you start repositioning her. Before we got the helmet i was able to reposotion her like i was supposed to for a week (around 4 mths) and it was a big difference. I would say you have a big chance of correcting it yourself from now until the 4 mth checkup. And it wont be to late to start at 4mths if you dont want to wait until 6 mths. Personally i think they grow too much from 7 weeks to 4 mths that if you start too early you might have to have two helmets. I think thats what happened to the person who posted first on here. But its not to early to start checking on your insurance to see if that can be a covered expense. I have known people who have had to appeal theirs to get them to pay on it. There seems to be exclusions in certain insurances that will not cover this so check into it and find out for sure. Mine was covered under the ‘Durable equipment’. Also, the place i went to get my daughters helmet was Cranial Technologies
    They have a message board that you can get more info on. Let me know if you have any other questions.

    anniemarie-Thats so good to know. Thanks. Man, that must of been hard to babysit twins. More power to you. Did they decorate their helmets?

    #6929001

    anniemarie
    Participant

    i agree if you start repositioning and really working on not having her lay on that side it should correct itself. the reason they want to do the helmets as soon as possible is because after 12 months their heads will not shift anymore. their bones are fused and not able to be reformed. the twins happened to have growth spurts when they got the helmets so i think noelle only had hers for like 2.5 months and solo (solomon but we call him solo cuz he’s the only boy) had his for about 3.5 months. we didn’t decorate them cuz they came with designs on them. her’s was pink with butterflies, and his was army camo…they were so cute…here’s a pic Photobucket

    they were so much fun, i was with them from the time they were 2 months old until i left when they were 6.5 months old. if i wouldn’t have gotten pregnant i’d still be there. however, i did get amazing practice being a mom, my son’s easy compared to 2 babies! but they were both still pretty easy babies. it was most likely the best job i’ve ever had!!!

    #6929002

    Mylilangel
    Member

    oh, they are so cute!!! Its almost a good thing that they both had to have one, that way the other one wouldn’t get jealous. I didnt know some companies pre decorate them. Thats good to know. We didnt have that option with Cranial technologies but they also said their helmets isnt as heavy as the star bands.

    #6929003

    elliel
    Member

    thanks ladies – that’s really encouraging. I shall keep trying to get her off that side. Last night I thought I’d cracked it as I positioned some blankets under her mattress but I checked her later on and she’d still managed to turn her head over – urghhh! It’s then the dilema of whether to risk waking her by turning her. I did and she did wake up and refused to go back to sleep!

    #6929004

    elliel
    Member

    anniemarie – thanks – she’s so happy in her little bouncy chair but I realise that might be making it worse so I’m going to have to carry her round more. It’s a shame as it’s great having an independent baby who can sit happily (my first was the opposite) and I’m scared that will change if I can’t carry on leaving her – but she often turns her head to the side in teh chair!

    just one more thing! I thought as she was just flat on one side it would be o.k. if she laid on her back (not on that side)…or is that also bad?

    #6929005

    anniemarie
    Participant

    elliel- what i learned from the twins getting helmets is that other than the outward appearance of the head there’s no proven problems that automatically occur from a head that’s flat or mis-shaped. there are extreme cases where babies have other diabilites that have already shown up when they were born and have flat-head syndrome or an altogether head that is mis-shaped. when they went in for their consulation what they told them was this: because of the shape of their heads it can cause problems in the growth of the brain. again it might not cause any problems but at the same time it might not be able to grow the way it’s supposed to because the shape of their head. i’m not trying to scare you with any of this information, i just want you to know why they usually encourage parents to use the cranial caps. in the end the parents i was nannying for were very happy with thier decision!

    #6929006

    anniemarie
    Participant

    i also think that if you really work to keep her on the other side, do lots of tummy time and also have her on her back with a boppy seat and just really try to rotate the different things and i think he head will even out.

    #6929007

    elliel
    Member

    Thanks annemarie – I shall make sure we keep on top of it and I’ll pester my consultant if I don’t think he’s taking it seriously enough. She really does look like the picture they’ve got on teh site of the little one with the pointy head! I have an appointment with an osteopath on tues that specialises in babies/children and it’ll be interesting to see what he says. I’m hoping that as I’ve got on the case early enough we might be able to fix it ourselves. I’ve also ordered some special Goi Goi pillows for her to use when she’s in her chair and on her playmat. They do say that you can use them in their crib but that would terrify me because of the risk of SID’s (apparently in sweden all babies use these pillows but I’m still not taking the risk).

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