Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 hmm it should have worked.. i uploaded them into the plagio kids section under C. Briggs.... Re: HONEST OPINIONS When i clicked on the link i didn't see any picture. I don't know if i did something wrong. Before even looking at the pictures, the decision to see the neurosurgeon has to be something you can be happy with. If you think you will look back and wonder what if i had gone then i say go. That's the question i asked myself when deciding to band Jenna. I n my case i knew i would always wonder what if.I know it has to be very hard without much support from the medical community.Angie and JennaAngie and Jenna> If this was your child would you see the neurosurgeon??? > > http://members.tripod.com/connorsmom0/1share.jpg> > TIA> > Ali and Connor... 7 monthsFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Ali, I second what said. Since you are questioning yourself then I say go to the neuro. Get as much info and as many opinions as you can and then make your decision. Like Christie said they kept gathering info and repoing up until it was time to cast and then they determined they were happy with Remy's head shape. I thought na was all 1's on the severity charts. When they actually did the measurements she was moderate instead of mild. Her ears were off more than I imagined and her forehead bossing was worse too. We had a free evaluation at Cranial Technologies. We drive 2.5 hours each way for her adjustments. HTH & na DOC #1 10-27 to 11-26 DOC #2 12-10 Re: HONEST OPINIONS Hello,If I were you, I would go to see the neurosurgeon, but I would alsoplan to get as much information as possible about Connor's headshapefrom lots of other sources as well. Understanding the plagio shape canbe difficult since the head is such a complex shape. Understandinghow and from whom to get treatment is also very complex and confusing.Some doctor's consider it to be a "real" problem that needs treatmentand others don't. We saw a neurosurgeon for my daughter's plagio, but it was not untilwe went to a cranio-facial center and saw a plastic surgeon that thediscussion started making sense to me. Everyone's experience seems tobe different.I would recommend posting another picture of Connor where the shapeyou are worried about can more easily be seen (perhaps taken from thetop down in the bath (with wet hair) to this site to get other parentsinput). In addition, I'd look into visiting one or more orthotists whomake helmets to treat plagio to have them take a look. CranialTechnolgies does free evaluations. I'd say its even worth traveling tohave them do an evaluation. And, I'd check into seeing a cranialfacial specialist as well. The thing is - there is such a smallwindow of opportunity (optimally during the first year) to correct theshape that it requires fast action to get all the information you needto understand what to do before its too late. Best Wishes, (mom to , plagio and tort mostly resolved).> If this was your child would you see the neurosurgeon??? > > http://members.tripod.com/connorsmom0/1share.jpg> > TIA> > Ali and Connor... 7 monthsFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Ali, We will support your decision. A lot of us have been in your shoes. We see it but sometimes our families don't. It was hard for my family to see it in the beginning. Now that na is in DOC band #2 they can see a difference from pre-band. Go with your mommy instinct and follow through with this. I'm sensing from your posts that you would always wonder. Let us know how your thought process progresses. Also, the link worked for me and I forgot to say last time that Connor is a cutie like the previous posters have noted. & na Re: Re: HONEST OPINIONS Ok this is the thing... I feel he needs treatment, I think its bad, and its all I see when I see him. The way everyone else is like I don't see much makes me question myself to the severity. Im persuing the treatment because I think he needs it and I feel like others think its all in my head and I'm seeing things. I guess I just need a support system behind me that sees what I'm seeing so I can get through this. Ali For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Ok this is the thing... I feel he needs treatment, I think its bad, and its all I see when I see him. The way everyone else is like I don't see much makes me question myself to the severity. Im persuing the treatment because I think he needs it and I feel like others think its all in my head and I'm seeing things. I guess I just need a support system behind me that sees what I'm seeing so I can get through this. Ali Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Thank you Christie, that is VERY helpful! You have been a great resource while I was repo'ing Connor.. unfortunately it stopped working... his head actually improved to almost perfect and then very suddenly started getting worse again (making me fear Cranio). I have decided I AM definately going to go to the appointment and fight for what I believe in my heart he needs =) Ali Re: HONEST OPINIONS Ali,Except for my husband, whom I had to force to look at measurementsfrom photographs, everyone else in my family thought I was crazy. Only one friend that I work with, renowned for her bluntness,acknowledged a problem with my daughter's head shape. If you look atRemy's before and after photos, she CLEARLY had a problem with plagioand some brachy. I think it was too painful for most of the peoplewho love Remy to think she had a problem, so they chose not to. Ialso think most of my family felt in their hearts that there wasnothing one could do about it anyway, so why recognize it as an issue.It was especially, especially lonely for me not being able to talk tomy mom about Remy's plagio, all of our hard work with repo, and all ofour wonderful success with repo. However, despite the lack ofvalidation at every turn, I felt extremely secure in our diagnosis andtreatment of Remy. It was a lonely journey for us, but I'm thankfulwe made it!Christie (Mom to Repo'd Remy)> Ok this is the thing... I feel he needs treatment, I think its bad,and its all I see when I see him. The way everyone else is like Idon't see much makes me question myself to the severity.> > Im persuing the treatment because I think he needs it and I feellike others think its all in my head and I'm seeing things.> > I guess I just need a support system behind me that sees what I'mseeing so I can get through this.> > AliFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Ali please let us know how the appointment goes. eVERYONE IS HERE TO OFFER SUPPORT AND ENCOURAGEMENT. aNGIE AND jENNA Re: HONEST OPINIONS Ali,Except for my husband, whom I had to force to look at measurementsfrom photographs, everyone else in my family thought I was crazy. Only one friend that I work with, renowned for her bluntness,acknowledged a problem with my daughter's head shape. If you look atRemy's before and after photos, she CLEARLY had a problem with plagioand some brachy. I think it was too painful for most of the peoplewho love Remy to think she had a problem, so they chose not to. Ialso think most of my family felt in their hearts that there wasnothing one could do about it anyway, so why recognize it as an issue.It was especially, especially lonely for me not being able to talk tomy mom about Remy's plagio, all of our hard work with repo, and all ofour wonderful success with repo. However, despite the lack ofvalidation at every turn, I felt extremely secure in our diagnosis andtreatment of Remy. It was a lonely journey for us, but I'm thankfulwe made it!Christie (Mom to Repo'd Remy)> Ok this is the thing... I feel he needs treatment, I think its bad,and its all I see when I see him. The way everyone else is like Idon't see much makes me question myself to the severity.> > Im persuing the treatment because I think he needs it and I feellike others think its all in my head and I'm seeing things.> > I guess I just need a support system behind me that sees what I'mseeing so I can get through this.> > AliFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Ali, Just to let you know , if you did see an improvement by repo'ing than you can pretty much rule out cranio. If he did have cranio you would defiantly not see any improvement as the suture or sutures would be fused and not malleable. Please understand I'm in no way saying don't pursue treatment but I just don't want you to worry to much about cranio as is sounds highly improbable in Connor's case. HTH, ~~Buffalo, NYMama to:, Jordan (cranio,plagio & tort~Starband 10-24-03) & http://members.ebay.com/aboutme/mama2jared/ Re: HONEST OPINIONS Ali,Except for my husband, whom I had to force to look at measurementsfrom photographs, everyone else in my family thought I was crazy. Only one friend that I work with, renowned for her bluntness,acknowledged a problem with my daughter's head shape. If you look atRemy's before and after photos, she CLEARLY had a problem with plagioand some brachy. I think it was too painful for most of the peoplewho love Remy to think she had a problem, so they chose not to. Ialso think most of my family felt in their hearts that there wasnothing one could do about it anyway, so why recognize it as an issue.It was especially, especially lonely for me not being able to talk tomy mom about Remy's plagio, all of our hard work with repo, and all ofour wonderful success with repo. However, despite the lack ofvalidation at every turn, I felt extremely secure in our diagnosis andtreatment of Remy. It was a lonely journey for us, but I'm thankfulwe made it!Christie (Mom to Repo'd Remy)> Ok this is the thing... I feel he needs treatment, I think its bad,and its all I see when I see him. The way everyone else is like Idon't see much makes me question myself to the severity.> > Im persuing the treatment because I think he needs it and I feellike others think its all in my head and I'm seeing things.> > I guess I just need a support system behind me that sees what I'mseeing so I can get through this.> > AliFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 Hi Ali, Good luck with your appointment! It can be such a difficult journey when so many people, including the medical professionals don't seem to support you! But this group is here for you and they are so helpful and supportive. Mostly everyone we knew as well didn't "see" anything wrong with 's head, but I would get so stressed about it everytime I looked at him. We definitely see improvement and we are so glad we banded. We have a little ways to go, yet, but so far we are very happy with the results. /DOC/10-7-03 at 10mos./PAAli <briggs@...> wrote: Thank you Christie, that is VERY helpful! You have been a great resource while I was repo'ing Connor.. unfortunately it stopped working... his head actually improved to almost perfect and then very suddenly started getting worse again (making me fear Cranio). I have decided I AM definately going to go to the appointment and fight for what I believe in my heart he needs =) Ali Re: HONEST OPINIONS Ali,Except for my husband, whom I had to force to look at measurementsfrom photographs, everyone else in my family thought I was crazy. Only one friend that I work with, renowned for her bluntness,acknowledged a problem with my daughter's head shape. If you look atRemy's before and after photos, she CLEARLY had a problem with plagioand some brachy. I think it was too painful for most of the peoplewho love Remy to think she had a problem, so they chose not to. Ialso think most of my family felt in their hearts that there wasnothing one could do about it anyway, so why recognize it as an issue.It was especially, especially lonely for me not being able to talk tomy mom about Remy's plagio, all of our hard work with repo, and all ofour wonderful success with repo. However, despite the lack ofvalidation at every turn, I felt extremely secure in our diagnosis andtreatment of Remy. It was a lonely journey for us, but I'm thankfulwe made it!Christie (Mom to Repo'd Remy)> Ok this is the thing... I feel he needs treatment, I think its bad,and its all I see when I see him. The way everyone else is like Idon't see much makes me question myself to the severity.> > Im persuing the treatment because I think he needs it and I feellike others think its all in my head and I'm seeing things.> > I guess I just need a support system behind me that sees what I'mseeing so I can get through this.> > AliFor more plagio info Quote Link to comment Share on other sites More sharing options...
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