My son was just recently diagnosed with plagiocephaly. I am just getting over the feelings of guilt that it was something I had done to make him have this. It is caused by being cramped in the uterus, or by being head down and very low before birth, both of which he was for quite a long time before he was born. We are seeing an osteopathic doctor and a physical therapist, both of which seem to be working. We will find out May 17 if a DOC band or helmet is recommended to fix the the flat spot on his head. The other thing is that they think his bones in the back of his head may have fused early, as they can't feel the soft spot that is supposed to be in the back. He will probably have a CT scan to find this out. Are there any other moms out there that have gone through this?? I seem to feel all alone about this, except for the few and far between articles I have read online, none of which are even near Maine! Thank you for your help.
I'd like to thank everyone for sharing their advice with me on plagiocephaly. Mason's CT scan came back normal, so there is nothing to worry about concerning synostosis, what a relief!! His measurements were taken again after 1 month of physical therapy and seeing an osteopathic doctor, and things have improved by 7mm. The helmet is our choice now, and we have decided to go ahead and do it. It will most likely have to be worn for only a short time, and it will make his head shape even more normal. There is a slight flattening still present, but it is much better than it was! His appointment with the orthotic doctor is May 31!! I can't wait to get this started and see the results :o) Thanks again for all the support!
Hi L.,
I haven't had this problem, but I have a friend who's son does. Her name is Jen M. Perhaps I could get in touch with her and see if she would talk with you. C.
I had read an old article in either Parents magazine or American Baby. Maybe you could check there websites? In the article, I remember the little boy wearing the helmet and it was all very positive. I'm sorry I don't remember more. I have some of the old magazines which I plan on re-reading. If I come across it, I will put out a post as to which issue. Good luck!
Hello L.,
My son was diagnosed with Saggital Synostosis...our pediatrician called it Plagiocephaly, however, when we went to meet the nuerosurgeon he said it was classic Saggital Synostosis - which is the fusing of the two side cranial plates, his head was super long growing only the front and back, the sides were not growing outward at all.
What a roller coaster ride the whole thing was. Guilt, anger, and anxiety were pretty much all we felt the first few days.... of course, nothing we did had anything to do with it!
At exactly 2 months our son had surgery. Luckily, we had the option of 2 different procedures, one was endoscopic which results in 2 tiny scars but a helmet for 6 months, and the other is a much bigger procedure (hours long) and a week stay in the hospital, but no helmet. We chose the endoscopic surgery which took about a 1/2 hour. We were in the hospital for 1 night and home the very next day. Our son was off the pain medication the next day as well. Because we chose the less invasive procedure, he does need a helmet for 6 months. We are now on month 5 of the helmet. Hopefully next month he will be done with it...that being said, he doesn't notice the difference. The helmet is just something he wears, like socks. And let me tell you...sometimes it comes in handy! He's starting to roll and crawl, and we dont' have to worry too much about him hitting his head!!! If you have any questions, please feel free to talk to me. I can tell you the name of the surgeon we had (who is very good at the endoscopic procedure) where we went, what to expect etc...should you need that info! I couldn't find much info on this condition when he was first diagnosed and it would have been helpful to talk to someone who knew about it. If anyone out there has any questions, please feel free to ask me! It's not nearly as bad as the anticipation of not knowing. No matter the diagnosis, don't worry, kids are really quick healers and some of the helmets are pretty cool! Good Luck! Last thing...there is a really helpful web site called Cappskids...www.cappskids.org
-S.
Sorry to hear. Hope you find some answers. Good luck and best wishes.
Hi,
I have a daughter who was born 2/11 she had a hematoma not sure on spelling sorry. How did they diagnose your son with plagiocephaly? I am nervous because she still has the lump on her head also she favors that side more then the other so it is getting flat on the back of her head. I try to place her the other way when I wake to get her out of her crib shes on that side again. Also, could you please let me know if your son favored one side more then the other the dr says my daughter is fine but to keep turning her so the back side of her head is even. They did say that it takes awhile for the lump to go away and her soft spots are fine. I am just way nervous as any mom would be. Thank you, J.
Hi L. -- I belong to a moms social/support group in the Lewiston/Auburn Maine area. We are Mid Maine Moms and I would be happy to share some info with you on our group if you'd like to email me directly. There is also a moms group in Portland called Mom-to-Mom, if that is closer for you. Their website is http://momtomomofme.org/. I, unfortunately don't have any info on plagiocephaly, but perhaps moms in one of our groups could offer advice!
B.
L.,
I went through this and I live in Wilmington, MA and would be love to talk to you so you can know what I went through and my experiences....my son went through this and is fine now.
My son was diagnosed with congential torticollis (It is a twisting of the neck) at age 2 months & plagiocephaly. His neck and head was tilted to one side in utero...so when he came out he always was laying on his right side...he was this way in utero and also his head developed a flat spot even more when he came out. We tried repositioning...but it was hard. He got a helmet at 5 months and had it until he was 7 months...did wonders! And he had physical therapy every week until he was 12 months. After the helmet you can not even tell he had a flat spot on his right side and developmentally he is fine.
Feel free to email me at ____@____.com and lets chat! I will give you my phone # too. Anyone else too if you want to contact me I have lots to share. :)
Jen
Hi L., well i have a lil boy....actually hes 3 today. he didnt endure what you have something much diffrent. my baby suffered a lack of oxygen during birth. he is severely brain injured, severe cerebral palsy, legally blind, hearing impaired, poor swallow & gag reflex. with many other issues. he has had ct scans, mri's. eegs & many other brain tests. so no we didnt deal with mishapped or flat skull. my babies head has just started to grow around 2.5. before that he had a very small newborn sized head. if you want to know more. let me know. also stay positive thru all you will go thu. dont sweat the small stuff. your baby will only be small for a short time. so enjoy it all now. good luck with everything. luv always C.
My son had positional plagiocephaly. He's a twin and his sister was never still. He, on the other hand, was content to flop down and sleep. The repositioning didn't work for us because he kept rolling over onto his back. So we used a helmet to correct it. He wore it for five months from the time he was 7 months old and we had enough time to correct the flatness. We went for weekly scans and adjustments to the helmet but I highly recommend that course of treatment. That said, I'm almost positive if the bones have fused (my son's didn't) it's harder to fix. If it's truly plagiocephaly use the helmet but if it's craniosynostosis (the premature closure of the sutures of the skull), it will probably require surgery. BTW, absolutely nothing you did contributed to this!
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Jennifer,
Not sure if you directed this to me or not but I'll reply anyway. ;)
My son was diagnosed because he had an obvious flat spot at the back of his head and he was starting to widen at the temples (from the weight of his head pressing forward). He never favored the right or left side, it was the back of his head no matter how we positioned him. Two months old is too young to start worrying about it though. Keep moving her head as much as possible and start tummy time soon. I don't know how much she's in a bouncy, car seat or swing but try to limit that too. At your four or five month check up if you still feel it's a concern, tell your pediatrician you think corrective measures may be in order. As long as the sutures haven't fused you could use a helmet to even out her head. HTH
My friends child had a similar issue. One side of his head was completely flat, so they had her lay him in different positions to try to correct it. Babies head are very soft so they will be able to fix it. he also couldnt turn his head to the left at all becasue of it, his neck muscles werent strong enough. And slowly he is getting better and his head is getting back to normal. Dont worry about it. There is nothing you could of done. My daughter came out face up and was stuck in the birth canal. I pushed for 5 hours before they used a vaccum to get her out. Mind you, i had no epidural. Dont worry about it, your baby will be fine.
Hey L., Plagiocephaly is actually not caused by anything before the baby is born. It is caused by the amount of time the baby spends on his back or sitting in a seat that his head is resting back on. I am not placing blame on you leaving you child laying down all day, believe me, my son was almost diagnosed with the same thing and I did not leave him sitting/lying all day. My son preferred to sleep on his back all the time and this is what it was caused from. This diagnosis is becoming more and more popular now because of the "back to sleep" teaching for SIDS prevention. Rest assured you did not do this to your child while he was still inside.
S.
