Seeking Moms with Plagiocephaly Babies

My daughter has plagiocephaly and she will be 6 in March. We did go to a doctor and he recommeneded a helmet but said that her case was severe enough that even the helmet would not normalize the head completely. And her insurence didn't cover it.So we opted to not proceed with the helmet. She has since grown hair and while I notice it most others don't. It does sometimes make doing her hair a little more difficult but for the most part it's just a fact for us. Her plagiocephaly was caused by her being born with a nystagmus that she would turn her head to the left to dampen so she could see better. The head does continue to grow and may lose some of the flat as your child grows. The other posts have more info than I do and I found it interesting to read the different treatments. I think my daughter is now too old to have it treated.

My son(now 15mos) wore a full cranial helmet, because he had plagiocephaly. He wore his helmet for 6 mos, before completely outgrowing it. His case was severe, and now is considered mild/moderate, so it didn't fix it all the way, and we could have paid the $2800 to get another helmet fitted, but decided against it. We felt how he is now was a HUGE improvement over how it was. It was a fight with the insurance to cover this, but it can be done. It just takes a lot of patience and talking to many many people. There are great options out there.

Hope this helps.

E.

S.,
My son had a moderate, well mod - severe case of this. He wore a helmet for awhile, but that didn't seem to work for us. His head has grown out of it for the most part, probably 95%, and with his hair, you wouldn't ever notice anyway. If you google plagiocephaly, you can find a support group for parents with alot of FAQ's. Hope that helps you.
K.

While the thought of your baby developing plagiocephaly (flat head syndrome) or torticollis can be quite scary, it's great that you are doing your research and finding out as much as you can, in order to be proactive! The position of an infant’s head needs to be changed throughout the day so that they do not begin to favor a certain area of the head, which can ultimately lead to the development of a flat spot on the head and elongated neck muscles on one side. A few more techniques to consider implementing: when approaching and feeding baby, parents can alternate the direction from which they come, encouraging baby to turn their head in a different direction each time. Another technique is to place interesting and stimulating toys in new locations around baby’s room so they will have to turn their head different directions, depending on where the toys are. Make sure to implement lots of supervised tummy time during the day, and finally, massaging baby’s neck muscles when they are relaxed can help them stretch both sides of the neck. You may want to speak with your pediatrician who can point you in the right direction. Education and awareness are key to ending plagiocephaly!

Hi, My daughter was a twin born with plagiocephaly. We discovered this when she was 3 months, through Special Childrnes Clinic (in NV) We've went back and forth to dr's for awhile. The specialist opted to just let her head grow out itself, she did not require a helmet.
Her head started shaping on its own after about 1 year and she is now 4 years old.
I wish you luck, and our prayers are with you.

Hi S.,
I don't have personal experience with plagiocephaly with my children but I am an RN and work for an insurance company and see the request for cranial helmets for children with plagiocephaly all the time. Unfortunately the benefits are limited and the child has to fit a certain criteria but often it's not covered. But I do let the parents know of other alternatives and direct them to organizations that may help them. You can try looking at: http://www.plagiocephaly.org, http://health.groups.yahoo.com/group/PositionalPlagioSupp..., http://www.dailystrength.org, http://hannahsnoggin.typepad.com.

I hope this help you in any way!!

Hi S.,
My 5.5 month old has positional plagiocephaly and we are in the process of getting him treated for it. There is a place in Toluca Lake called Cranial Therapies that we are going to. They use something called a DOC Band (dynamic orthotic cranioplasty). My son hasn't received the band yet, but it should arrive next Tuesday, so hopefully he won't mind it too much. In the course of trying to decide whether to do it or not, I spoke with a couple moms on both sides of the treatment vs. no treatment debate. I just don't want to end up regretting not doing it. It seemed like the most common refrain I heard was "If you're even thinking about treatment, you should do it." Several moms I spoke to regretted not doing it. I get a hard time from people sometimes saying that they can't see how his head is misshapen, but it is so obvious to me. Anyway, if you want to talk more (though I'm not "experienced" at this yet!), feel free to send me an email at ____@____.com
Good luck deciding!
J.