Amanda has severe plagiocephaly, I noticed it in Estonia, the left side of her head is flattened from the ear to the middle of her head while she has a bony knob on the right side, giving her head a severe asymmetrical appearance. I tried to take a picture of it, but it is hard to capture. Her hair sticks out straight at the bony portion. Her forehead is also pushed forward abnormally by this, in fact when we first saw her we were both afraid she may have hydrocephaly. We do not think she does any longer after spending time with her.The PNP thought it was positional, from her lying in the same position for too long. So it seems likely she was left in bed for very long periods of time, it makes me so sad for her. It seems to be related to why she grinds her teeth.
http://www.plagiocephaly.info/faqs/default.htm
What are the most important things for parents to know about positional plagiocephaly?
It is important for parents to know that plagiocephaly can often be prevented and/or corrected byrepositioning. In addition, parents should know that, if treated early (prior to 18 months of age—as young as possible), this condition can be effectively corrected without surgery. Having made those points, it also critical that parents know that if they have concerns about the shape of their child’s head, they should seeks medical advice to rule out other conditions (for example, torticollis or craniosynostosis) that require other forms of intervention, perhaps even surgery.
What are the most important things for parents to know about positional plagiocephaly?
It is important for parents to know that plagiocephaly can often be prevented and/or corrected byrepositioning. In addition, parents should know that, if treated early (prior to 18 months of age—as young as possible), this condition can be effectively corrected without surgery. Having made those points, it also critical that parents know that if they have concerns about the shape of their child’s head, they should seeks medical advice to rule out other conditions (for example, torticollis or craniosynostosis) that require other forms of intervention, perhaps even surgery.
Kevin M. Kelly, PhD16-Oct-2005
What do you see as the possible consequences of not treating positional plagiocephaly?
Left untreated, children, especially those deformity includes facial asymmetry may experience other medical issues later in life (for example, problems with the TMJ, temporomandibular joint; problems with occlusion). In addition, one should not [cannot] understate the importance of simply “looking normal” to a child’s emotional and social development, particularly as children grow into their teens.Kevin M. Kelly, PhD
What do you see as the possible consequences of not treating positional plagiocephaly?
Left untreated, children, especially those deformity includes facial asymmetry may experience other medical issues later in life (for example, problems with the TMJ, temporomandibular joint; problems with occlusion). In addition, one should not [cannot] understate the importance of simply “looking normal” to a child’s emotional and social development, particularly as children grow into their teens.Kevin M. Kelly, PhD
We are terribly concerned about her, her face is even more flattened across her nasal bridge as a result and her nose is always stuffy, she grinds her teeth terribly and also has problems opening her mouth all the way. Sometimes her jaw works it's way loose and she opens her mouth in a huge O, otherwise she can barely open it enough to get a spoon into it.
With her heart being a potential problem, we have to wait on her plagiocephaly, but I have contacted the specialist above for his recommendations for specialists near me.
I certainly do not want her to have surgery on her skull, but if this is causing issues with her jaw and sinuses, it seems cruel to leave it be. I would appreciate prayers being said for Amanda, she has so many more issues than we had thought originally. It surely does not make us love her any less, but I am a little worried about her long term health and functioning.
6 comments:
Of course I'll be praying for Amanda. I can't wait to hear what the doctor has to say.
Prayers for Amanda and the family as you all go through each of the issues that come up.
I pray that each issue can be dealt with and made better with each passing day.
Hmmm I wonder, since she's so small for her age, if there is still enough movement in her skull plates that a helmet would work for her? Lots of kids with DS have helmets as toddlers to correct the brachealcephaly (sp) (something I so wish had been an option when Angela was a baby!!!) Sure would be nice if it was an option for Amanda. I would think if it was, you'd need to get her into a cranio guy as soon as possible though. And , if a helmet WAS an option, at least it wouldn't interfere with any other medical issues. Ok..I'm praying for the helmet option. LOL
Prayers for Amanda!
This was very interesting. Caleb's head is flat in the back from the middle to the ear on one side. He has no other problems though with sinuses or grinding teeth...I assumed it was because he was laying so much with his head turned.
Amy
Hi sweet Kris! Emma, my bio dd with DS, was born with craniosynostosis and had to have surgery for it when she was almost 2 years old. Her head was very asymmetrical. It was a 3-4 hour surgery that scared me half to death, but she was home two days later with a huge swollen head! She seemed to have very little problem with pain. I, on the other hand, took several weeks to recover! It definitely needs to be taken care of, which you are obviously doing, because it can cause parts of the brain to have pressure which of course causes further problems. If I recall correctly, Arizona has some great craniofacial doctors. If for some reason you don't feel good about them, please let me know because Dr. Fearon in Dallas is unbelievable. People really do travel from all over to use him and he is one of the nicest docs we've ever used. I do believe, though, that you'll find someone near you with no problem.
I'm so sorry you guys are dealing with this; it's no fun at all, particularly when all you want to do is love on her! Please let us know what you find out, OK? Jill
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