Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 - Sorry to hear about the dx. But it seems that you are very confident in 's dr and as we can all tell you that makes a huge difference. Prayers are heading your way that rebounds from his surgery with flying colors! Dane's mom DOC Grad > Hi everyone, > went for his CT yesterday.The dr says he has craniosynostosis, he > said it is the rariest form of it. I'm still very confused about how it > started out as plagio and turned into craniosynostosis. Anyway, he has > alittle pressure on his brain so he said we have to have surgery to fix it > with in the next 3 months.so i think we are going to get it done ASAP. I took > everyones advice and ask him 10 thousand questions and he did good answering > them all. We saw all the CT pictures and everything....and theres no doubt > about it , its all very visible in the pics. Know we are just worried sick > about how he will handle the surgery but the Dr assures us that hes much > stronger than before and that he will be fine and be home in 3 days, but as a > parent i guess thats part of our job. anyway i wont make this to long but i > want to thank everyone for there help and prayers, and we will let you guys > know how things go. ty again and god bless you all. > > > s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Im so sorry to hear that. I am sure will be a real trooper through the whole thing. I cant imagine how worried you must be. You guys will be in my prayers!!!! Please let us know how he does!! Christi mom to MYA > Hi everyone, > went for his CT yesterday.The dr says he has craniosynostosis, he > said it is the rariest form of it. I'm still very confused about how it > started out as plagio and turned into craniosynostosis. Anyway, he has > alittle pressure on his brain so he said we have to have surgery to fix it > with in the next 3 months.so i think we are going to get it done ASAP. I took > everyones advice and ask him 10 thousand questions and he did good answering > them all. We saw all the CT pictures and everything....and theres no doubt > about it , its all very visible in the pics. Know we are just worried sick > about how he will handle the surgery but the Dr assures us that hes much > stronger than before and that he will be fine and be home in 3 days, but as a > parent i guess thats part of our job. anyway i wont make this to long but i > want to thank everyone for there help and prayers, and we will let you guys > know how things go. ty again and god bless you all. > > > s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 , I am so sorry to hear the scans showed that has cranio. I can't even imagine what you must be feeling right now. I honestly don't recall ever hearing of plagio turning into cranio. But I have heard of a few cases of cranio being misdiagnosed as plagio, although that is pretty rare. It might be possible that this is what has happened in your case. There is a great website where you can get a lot of info and support for cranio, I highly reccommend you check it out if you haven't already http://www.cappskids.org/ Please keep in touch and let us know how things are going for you and your sweet little boy! Your family will be in my thoughts! Niki Kaylie & Danny (STAR grads) Phila., PA > Hi everyone, > went for his CT yesterday.The dr says he has craniosynostosis, he > said it is the rariest form of it. I'm still very confused about how it > started out as plagio and turned into craniosynostosis. Anyway, he has > alittle pressure on his brain so he said we have to have surgery to fix it > with in the next 3 months.so i think we are going to get it done ASAP. I took > everyones advice and ask him 10 thousand questions and he did good answering > them all. We saw all the CT pictures and everything....and theres no doubt > about it , its all very visible in the pics. Know we are just worried sick > about how he will handle the surgery but the Dr assures us that hes much > stronger than before and that he will be fine and be home in 3 days, but as a > parent i guess thats part of our job. anyway i wont make this to long but i > want to thank everyone for there help and prayers, and we will let you guys > know how things go. ty again and god bless you all. > > > s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Hi , I am so sorry about s CT results. I have faith that he's going to be fine. I researched the internet about craino, when I was starting on my daughter's road to plagio. She had a CT scan done to rule out plagio. I joined a cranio support group, the ppl there are so wonderful, supportive and helpful. They will answer any and all questions that you may have. Most of their children have cranio, most were treated with surgery, so they have all been where you are. Look into it. I think they could offer you a lot of help and support. CranioChat/ Please keep us updated on . You and your family are in my prayers!!! > Hi everyone, > went for his CT yesterday.The dr says he has craniosynostosis, he > said it is the rariest form of it. I'm still very confused about how it > started out as plagio and turned into craniosynostosis. Anyway, he has > alittle pressure on his brain so he said we have to have surgery to fix it > with in the next 3 months.so i think we are going to get it done ASAP. I took > everyones advice and ask him 10 thousand questions and he did good answering > them all. We saw all the CT pictures and everything....and theres no doubt > about it , its all very visible in the pics. Know we are just worried sick > about how he will handle the surgery but the Dr assures us that hes much > stronger than before and that he will be fine and be home in 3 days, but as a > parent i guess thats part of our job. anyway i wont make this to long but i > want to thank everyone for there help and prayers, and we will let you guys > know how things go. ty again and god bless you all. > > > s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 : Oh, I'm so sorry to hear of 's diagnosis :'( How heartbreaking. I wish you nothing but the best with the surgery & 's recovery. He is such a handsome little boy. Know you'll be in my prayers. Please let us know when the surgery is scheduled. Keep us posted please. Maybe someone has already given you a link, but there is a support group for craniosynostosis that you might want to consider joining. Also check out www.cappskids.org for more cranio information. Big hugs to you & your family. Debbie Abby's mom MI > Hi everyone, > went for his CT yesterday.The dr says he has craniosynostosis, he > said it is the rariest form of it. I'm still very confused about how it > started out as plagio and turned into craniosynostosis. Anyway, he has > alittle pressure on his brain so he said we have to have surgery to fix it > with in the next 3 months.so i think we are going to get it done ASAP. I took > everyones advice and ask him 10 thousand questions and he did good answering > them all. We saw all the CT pictures and everything....and theres no doubt > about it , its all very visible in the pics. Know we are just worried sick > about how he will handle the surgery but the Dr assures us that hes much > stronger than before and that he will be fine and be home in 3 days, but as a > parent i guess thats part of our job. anyway i wont make this to long but i > want to thank everyone for there help and prayers, and we will let you guys > know how things go. ty again and god bless you all. > > > s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Thanks for sending her the link , I was just going to find it for her Debbie > > Hi everyone, > > went for his CT yesterday.The dr says he has > craniosynostosis, he > > said it is the rariest form of it. I'm still very confused about > how it > > started out as plagio and turned into craniosynostosis. Anyway, he > has > > alittle pressure on his brain so he said we have to have surgery to > fix it > > with in the next 3 months.so i think we are going to get it done > ASAP. I took > > everyones advice and ask him 10 thousand questions and he did good > answering > > them all. We saw all the CT pictures and everything....and theres > no doubt > > about it , its all very visible in the pics. Know we are just > worried sick > > about how he will handle the surgery but the Dr assures us that hes > much > > stronger than before and that he will be fine and be home in 3 > days, but as a > > parent i guess thats part of our job. anyway i wont make this to > long but i > > want to thank everyone for there help and prayers, and we will let > you guys > > know how things go. ty again and god bless you all. > > > > > > s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 , not too long ago I posted an article from parents magazine about a new procedure to correct synostosis. I couldn't find the post number, but it would have been in July. You can also check out Parents.com and search the archives for " helmet therapy " or " craniosynostosis " The procedure is much less invasive than the typical surgery and maybe is a canidate. The post is somewhere in July, I'll keep looking - or maybe someone else can find it and let you know. Good luck to you and and the rest of your family. Kristi (4) and (10 1/2 mos) OH > Hi everyone, > went for his CT yesterday.The dr says he has craniosynostosis, he > said it is the rariest form of it. I'm still very confused about how it > started out as plagio and turned into craniosynostosis. Anyway, he has > alittle pressure on his brain so he said we have to have surgery to fix it > with in the next 3 months.so i think we are going to get it done ASAP. I took > everyones advice and ask him 10 thousand questions and he did good answering > them all. We saw all the CT pictures and everything....and theres no doubt > about it , its all very visible in the pics. Know we are just worried sick > about how he will handle the surgery but the Dr assures us that hes much > stronger than before and that he will be fine and be home in 3 days, but as a > parent i guess thats part of our job. anyway i wont make this to long but i > want to thank everyone for there help and prayers, and we will let you guys > know how things go. ty again and god bless you all. > > > s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Hi : I am sorry to hear of the diagnosis, but the good news is you DO have a diagnosis and it WILL be fixed! LIttle will be so relieved to not have that pressure on his brain, I'm sure. I think I know how plagio can turn into cranio. I am not a doctor, but I have taken some anatomy courses, and I think (the operative word here is think) it goes like this: Our bodies help our bones grow by " laying down calcium " where there is pressure. This is why it is good for us to work out with weights to prevent osteopoerosis. As we do weight-bearing exercise, our bodies will lay down more calcium on our hip bones, and other bones to remain strong. SO, with that in mind, I would guess that if the pressure is great between two cranial sutures, the body might respond by laying down calcium at that area, hence closing the suture. Just an idea, maybe you can ask your surgeon if this is the case? (sometimes they say the same thing, but it's in latin medical terminology so we don't catch what they are saying...) Kind regards, and we will keep little in our prayers. and Rhiannon > Hi everyone, > went for his CT yesterday.The dr says he has craniosynostosis, he > said it is the rariest form of it. I'm still very confused about how it > started out as plagio and turned into craniosynostosis. Anyway, he has > alittle pressure on his brain so he said we have to have surgery to fix it > with in the next 3 months.so i think we are going to get it done ASAP. I took > everyones advice and ask him 10 thousand questions and he did good answering > them all. We saw all the CT pictures and everything....and theres no doubt > about it , its all very visible in the pics. Know we are just worried sick > about how he will handle the surgery but the Dr assures us that hes much > stronger than before and that he will be fine and be home in 3 days, but as a > parent i guess thats part of our job. anyway i wont make this to long but i > want to thank everyone for there help and prayers, and we will let you guys > know how things go. ty again and god bless you all. > > > s mom Quote Link to comment Share on other sites More sharing options...
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