Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Dear Niki, Thanks for the welcome. Lauryn has had a CT done. That is how they found out about the Brachycephaly. Her pediatrician sent me a statement of her condition and they have been consulting with a neurosurgeon named Dr. Billmire and a Dr. Crone out of Cinci Children's Hospital. Basically what the paper says is that Lauryn has a head shape consistent with Brachycephaly. He noted that there is some prominence of the subarachnoid space over the frontal converities along the interhemispheric fissure. ( I have loads of questions on this one lol) He is not sure if this is related to Burst related trauma. What is that? I talked to her pediatrician on the phone the other day and he said that her sutures are completely fused together basically. I hope she does not have to have surgery but, I will find out on March 6. If you know anything about what I just typed please elaborate for me. As I am as confused as I can get right now. Thankyou, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Hi and welcome to the group! Has your daughter had any xrays or CT scans done? Usually with plagio and brachy, surgery would be the last option for correction. However, if the xrays or CT scans shows that one or more sutures are closed then surgery will be more than likely needed since you would then be dealing with craniosynostosis. If it is just brachy, then Lauryn is still at a great age to to receive correction with the help of a band. Please let us know how your appointment goes next week. I'll be keeping my fingers crossed for you! Niki Kaylie & Danny (STAR grads) Phila., PA > My name is . My daughter was recently diagnosed with Brachycephaly and > plagiocephaly is of course simular so I decided to join this group for > support. My daugthers name is Lauryn. She may have to have surgery next > month. We go to see Dr. Billmire in Cincinatti, Ohio for a consult and find > out exactly what can be done to correct this. I am hoping he opts for a > helmet and there will be no surgery needed but, I am fearing the worst right > now. Lauryn is 8 months old. She is doing really good as far as motor > skills go. I am proud of her. I also have a son named Heath. He is 2. I > have been married for almost 4 years to Heath Sr. . If any of you have any > advice you would like to give me or any information on what to expect from > this it would be greatly appreciated. I will attach a picture of Lauryn. > Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 Dear Niki, Thankyou very much. I appreciate your thoughts and concerns and taking the time out to help me. MUCH LOVE TO YA! Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 Dear Mel, Thanks for all the info. I really am thankful to have someone like you all to talk to about this. It can get mighty confusing! Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 Dear Debbie, Thankyou very much. I am getting more and more nervous as I read up on this. Is that normal or am I going insane? I am about to cry. It is late and I can't sleep and I just don't feel right because I am soooo worried for Lauryn. I keep going over and over in my mind what is going to happen next. What is going to happen next? I hate the unkown. Thanks though, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 : Hi & welcome to our group. I have to agree with everyone else's reply, from the description from you Dr's report, it does sound like Lauryn has craniosynostosis. Definitely check out the support group for cranio that Kendra gave as well as cappskids.org - the address Marci gave you. It has great cranio information on it. I am sure you are confused & very overwhelmed. I hope you find some information about it all. There is no reason why craniosynostis happens, but it does. It is usually corrected thru surgery. We have had a few members of our group whose baby had craniosynostosis, I'm sure one will chime in with better help to you than me . Best of luck - and please, let us know whatever you find out. Debbie Abby's mom DOCGrad MI > My name is . My daughter was recently diagnosed with Brachycephaly and > plagiocephaly is of course simular so I decided to join this group for > support. My daugthers name is Lauryn. She may have to have surgery next > month. We go to see Dr. Billmire in Cincinatti, Ohio for a consult and find > out exactly what can be done to correct this. I am hoping he opts for a > helmet and there will be no surgery needed but, I am fearing the worst right > now. Lauryn is 8 months old. She is doing really good as far as motor > skills go. I am proud of her. I also have a son named Heath. He is 2. I > have been married for almost 4 years to Heath Sr. . If any of you have any > advice you would like to give me or any information on what to expect from > this it would be greatly appreciated. I will attach a picture of Lauryn. > Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 There is no reason why craniosynostis happens, but it does. Jeeze this is going to sound bad but the cranio mommy has to speak up on this one. ;O) LMAO There actually is a reason why cranio occurs. It involves the FGFR gene which is a gene that is supposed to tell the cranial bones when to grow and when not to grow. Rather it is genetically inheriated(in my daughter's case who is suspected to have muenke's syndrome or quite possible crouzon's syndrome) or just a random FGFR mutatation all cranio is related to that gene. Once a child has craniosynostosis they have a 50/50 chance of passing on the condition to future children. I will get a link to the document that discusses this and post it after this. I would also like to see some research done on baby's effected with plagio and see if there is something that makes their skulls more malluable than others( ;O) i don't know maybe there is a think skull syndrome....just seems some babies can be on there backs all the time and not be effected, like my son, while others get plagio.) Anyways had to share that bit of info..I am on a roll tonight..tee hee. Also cranio can only be corrected with surgery, there is no other way of correcting it. Mel > > My name is . My daughter was recently diagnosed with > Brachycephaly and > > plagiocephaly is of course simular so I decided to join this group > for > > support. My daugthers name is Lauryn. She may have to have > surgery next > > month. We go to see Dr. Billmire in Cincinatti, Ohio for a consult > and find > > out exactly what can be done to correct this. I am hoping he opts > for a > > helmet and there will be no surgery needed but, I am fearing the > worst right > > now. Lauryn is 8 months old. She is doing really good as far as > motor > > skills go. I am proud of her. I also have a son named Heath. He > is 2. I > > have been married for almost 4 years to Heath Sr. . If any of you > have any > > advice you would like to give me or any information on what to > expect from > > this it would be greatly appreciated. I will attach a picture of > Lauryn. > > Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 , Awwwwwww- so cute Lauryn is!! I'm so glad for you that everyone has been able to help you- especially !!! Hoping for the best outcome for you all- but just know that we have seen a few kids go through the surgery with flying colors- including Mel's Leigha, so have faith that all we be ok in the end! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 Dear Kelli, Hello! Yes, she came out of me fast at the end because my uterus ruptured. She was vaccuemed out. I hope this helps. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 , here's a thought... Burst related.... hummm, the first thing that came to my mind was... did she come out of you really fast at the end??? I know, kindof stupid, but it's what I thought. Kelli __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 Mel, Interesting information - thanks! I actually didn't know those things about cranio. I appreciate the education! Marci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 , It broke my heart to read your post about how worried and anxious you are for your daughter. Of course, I'm not going to tell you not to worry, but I will tell you that you will get through this and we are going to help you. If you need to know what is going to happen next - just ask! We'll probably be able to help you! You will make whatever decision is needed to help your daughter and that is the bottom line - that's just what mommies do! :-) In the meanwhile she is going to be ok and so are you! Stick with us and we will help you - we'll make sure you don't sit around wondering what is next and feeling helpless. Researching is a good start - it's better to go into it prepared and with a clear understanding rather then trusting 100% of what is thrown at you. You're doing great and you will continue to do so! I'm praying for you and your sweet baby. Hang in there - you're going to come out on the other end a stronger person with an even healthier daughter!! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 Dear , Thankyou! I am glad I joined this group and you have been very helpful to me. I just need to stay focused. I appreciate you thoughts on my situation. Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 Dear Debbie, I talked to my friend and she said the same thing. So, I am going to try to get in sooner than March 6 which is when her appointment is scheduled for. It is very confusing. I hate this confusion and I hate the worry. Thankyou , Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 Dear Marci, Thankyou for the words. I am glad I joined this group too! I feel I am already getting help and becoming focused just from the support. Thanks again, Quote Link to comment Share on other sites More sharing options...
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