Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 I'm only referring to plagiocephaly. I don't know anything about cranio. Congratulation on the adoption and good for you for being so proactive in getting assistance for your daughter. The specialist we are seeing explained the risks of not getting treatment like this: The brain has to grow. If it can't grow backwards it will grow up or forward or to the sides causing the head to be abnormally shaped." The bands will work as long as the bones haven't fused together. An x-ray or CT will let the doctor know if the bones are open. We had a CT. It was scary because they had to sedate , but he did great. The anesthesia was a liquid and it wore off quickly. The sedation is necessary because the child has to be still for the scan to be accurate. At 6 months we are pleased that the helmet was an option. I'm new to this group, but I have heard success stories after a year. I think that generally speaking the later treatment starts the longer it can take. The helmet basically encourages growth in the areas that are flat by offering some resistance (not pressure) in the other areas. The head grows in the spot of least resistance. It can take longer for older children because their growth has slowed down. Be persistent when you talk to your pediatrician and find another one if he/she won't refer you to a specialist. So many children go without treatment because of lack of knowledge within the medical community. Good luck. Ronica Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Charlotte, First let me say congrats on your new baby! I'm so happy for you and your family. Your baby could still benefit from a band and Cranial Technologies will band babies through 24 months. We have soooo many parents in this group whose babies started after a year old and are thrilled with the results. The views differ greatly on whether untreated plagio causes other medical conditions. My specialist is a neurosurgeon with a university hospital and has done tons of research on plagio. He is of the opinion that plagio can (but not necessarily will) lead to TMJ, vision problems, speech and language delays, other developmental delays etc. Surgery for this condition is very rare because bands are so effective. The surgery is usually performed for babies with craniosynostosis, a condition involving the premature fusing of sutures in the skull. You might check out www.cranialtech.com to see if CT has a clinic near you. They usually give free consultations and known to be very honest and straightforward. Let us know what you decide to do! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Charlotte, Congratulations on the adoption of your daughter! I have a niece that was adopted out of China and she is an absolute joy in our family. She is now 9 years old and an amazing little girl. She also has a very flat head. She was nearly 3 years old when she was adopted, so she was too old to receive any treatment for plagio. From what I was told about her orphanage, the babies spent most of their time laying in cribs with not much variation in their positions. You are probably right to suspect plagio with your daughter and you will feel much better if you pursue your options by seeing a specialist. She is at a good age and could receive great correction with a band. Gail, Sam and Sara's mom, DOC grads adopted daughter My husband and I just returned from China with our 13 month old adopted daughter--who is large for her age at 25 lbs and 31 inches with no soft spot that I can find. She is happy and bright but her head is very mishapened and her ears are not aligned. We suspect positional plagiocephaly. Our pediatrician did not seem concerned but after researching this topic on the internet we feel we should see a specialist. It is so difficult to sift through the viewpoints to find the truth. What could happen if this condition is left untreated? Will helmets and bands work at 13--almost 14 months? When is surgery warranted? Your feedback would be very much apprecaited.Many thanks,Charlotte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Charlotte, Congratulations on your new baby girl!!!! My sister's best friend is only months away from making the trek to China for her baby daughter to be as well! I see you have gotten tons of good advice, so just wanted to say welcome to the group! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Ronica, Great post!!! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Great post Sue Ellen- thanks so much! beck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Cranio synostosis is something I actually have info on. Maybe I can offer some advice that will help! My son, 3 months old, was thought to have Cranio synostosis, meaning prematurely fused sutures (there are 4 sutures, or openings, between the 5 pieces of the skull). The skull expands in direct correlation to the growth of the brain. If these sutures are closed, the brain cannot grow. This is called Cranio synostosis. My son needed a CAT scan, and actually avoided the need for the anesthesia....simply give your child a nice cereal bottle while in the waiting room, and be sure she is sound asleep during her scan. Usually, the head part of the scan will be clear. Only the jaw portion is less than accurate because of normal breathing occurring during sleep. The head part is the part that matters....ask about that. I will make a guess here: I would bet that your daughter has untreated plagiocephaly, because most children adopted from China, as you probably are aware, are in orphanages for extended periods of time. These babies lay in their cribs on their backs for extended periods, therefore, causing plagiocephaly. Unfortunately, their culture thinks little of female children, who are "forgotten" or not necessarily cared for so well unless they are lucky enough to be adopted by wonderful people such as yourselves. This does not mean the people caring for them are not well-intentioned, but there are SOOO many children with SOOO few people attending to them in the orphanages! The only way to correct it, provided that the sutures are already closed, is surgery, called a Craniectomy. However, only the Scan will show you for sure. Believe me, the risks (brain bleeds and stroke) for a craniectomy are significant, and not worth it unless the deformity is quite severe. If you are in or near NY State, I can refer you to some excellent specialists in Rochester, NY. There is a husband & wife team at the University of Missouri who provide a less-evasive procedure to correct closed sutures, called an "Endoscopic Strip Craniectomy", whereby there is only a one-inch incision made instead of an ear-to-ear incision. Usually no blood transfusion is needed with this procedure as with the full craniectomy. This is normally an option only if there is one, or possibly two sutures closed at most. They are nationally recognized for this procedure. Regardless of what you decide, get the scan locally first, preferably with a 3D CAT Scan (which is highly accurate) instead of the normal CAT Scan. They will want to see the scan to tell you if they can help your child, if you consider them as an option. Any questions, feel free to e-mail me at sholmes1@.... Good luck with your new daughter. It sounds like she is very lucky to have parents who are concerned for her health and well being!!!! -Sue Ellen Re: adopted daughter I'm only referring to plagiocephaly. I don't know anything about cranio.Congratulation on the adoption and good for you for being so proactive in getting assistance for your daughter. The specialist we are seeing explained the risks of not getting treatment like this: The brain has to grow. If it can't grow backwards it will grow up or forward or to the sides causing the head to be abnormally shaped." The bands will work as long as the bones haven't fused together. An x-ray or CT will let the doctor know if the bones are open. We had a CT. It was scary because they had to sedate , but he did great. The anesthesia was a liquid and it wore off quickly. The sedation is necessary because the child has to be still for the scan to be accurate. At 6 months we are pleased that the helmet was an option. I'm new to this group, but I have heard success stories after a year. I think that generally speaking the later treatment starts the longer it can take. The helmet basical! ly encourages growth in the areas that are flat by offering some resistance (not pressure) in the other areas. The head grows in the spot of least resistance. It can take longer for older children because their growth has slowed down. Be persistent when you talk to your pediatrician and find another one if he/she won't refer you to a specialist. So many children go without treatment because of lack of knowledge within the medical community.Good luck.Ronica For more plagio info Quote Link to comment Share on other sites More sharing options...
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