Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Hi... I'm getting frightened about my daughter. I just posted pictures under Our Plagio Kids-- Blythe. Would some of you mind please taking a peek and giving me your opinion? We are scheduled to see a Craniofacial Specialist in 2 weeks, do I need to push to move up the appointment? The pictures aren't " cute " ones. I just snapped a few while she was resting... she wasn't too happy about it I have her in a hat in most of her fun pictures. It is hard to see the bossing on her forehead since that is the side against the mattress, but you can tell a bit in the straight-on picture. I've posted a couple of times to introduce myself. My 3 mo old daughter (a twin) was diagnosed a week ago with Torticollis, Macrocephaly, and Plagiocephaly.. My Pediatrician was not 100% about the diagnoses because while there is some bossing (left forehead), he couldn't find any corresponding flatness in the back. Her head is just BIG, particularly in back and her forhead has also seems too rounded. The more I read about Plagio and Tort. the more concerned I am getting that this isn't the problem and maybe I have something else I need to be researching. Or maybe I'm just freaking out. Hard to say. My concerns are based on- #1) It seems like most of the plagio kids have heads which are smaller around than normal while my daughter's head is VERY big. Plus, it isn't flat, it is too rounded. #2) She can turn her neck both ways, it is just awkward. I think the issue is more that her head shape restricts her neck movement, than the other way around. My daughter has a steep protrusion from the back of her head. If she tried to lay and look flat out, her head would fall one way or the other. If it falls to the right she just lies with her cheek to the matterss and looks fairly comfy, if it falls to the left (the side with the bossing) her entire body will arch around. She won't cry and seems comfy. In fact, the " arch " is the position in which she sleeps if I put her on her back. I stuck in a picture of this. If I put her in a carseat and use infant pillow things to force her to keep her head straight, her chin is crammed down into her chest. The back of her head sticks out at such an angle, it can't rest against the back of the carrier w/o pushing her face down. 3#) Her most restful position is on her tummy. HOWEVER, at 3 mo, she can't lift her head up at all when she is face down. She just leaves her cheek to the side, as usual. Is there a form of Plagio in which BOTH SIDES of back of the head bulge out? Is the flattening ALWAYS in the back? My daughter has never been able to put the weight of her head on the back and usually has it turned to the side... but the sides of her head don't seem particularly narrow or asymmetric side-to-side. I know Craniosynostosis is a concern which has to be ruled out. We had a CT 3 weeks ago to make sure there wasn't any fluid causing the head to swell. There wasn't. If it was Cranio, wouldn't this have been evident on the CT? I appreciate any thoughts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 , Take a look at my daughters before & after pictures under (Dustie) in the DOCBand photos. Your daughters head really is simular to my daughters was in a profile shot. My daughter had that same ridge at the back and had frontal bossing as well. She was diagnosed with Scaphocephaly. It is the most uncommon of the headshapes, but is treatable!!! I think if you were to wait 2 weeks for your appointment with the specialist you would be fine. On the other hand, if you want to push for an earlier appt, that would be fine too. Also, she is a little doll! She just was absolutely beautiful just sleeping there! thanks for posting her pictures. Now onto my craziness, how do you pronounce Blythe? Dustie > Hi... I'm getting frightened about my daughter. I just posted > pictures under Our Plagio Kids-- Blythe. Would some of you mind > please taking a peek and giving me your opinion? We are scheduled to > see a Craniofacial Specialist in 2 weeks, do I need to push to move > up the appointment? The pictures aren't " cute " ones. I just snapped > a few while she was resting... she wasn't too happy about it I > have her in a hat in most of her fun pictures. It is hard to see the > bossing on her forehead since that is the side against the mattress, > but you can tell a bit in the straight-on picture. > > I've posted a couple of times to introduce myself. My 3 mo old > daughter (a twin) was diagnosed a week ago with Torticollis, > Macrocephaly, and Plagiocephaly.. > > My Pediatrician was not 100% about the diagnoses because while there > is some bossing (left forehead), he couldn't find any corresponding > flatness in the back. Her head is just BIG, particularly in back and > her forhead has also seems too rounded. The more I read about Plagio > and Tort. the more concerned I am getting that this isn't the > problem and maybe I have something else I need to be researching. Or > maybe I'm just freaking out. Hard to say. > > My concerns are based on- > > #1) It seems like most of the plagio kids have heads which are > smaller around than normal while my daughter's head is VERY big. > Plus, it isn't flat, it is too rounded. > > #2) She can turn her neck both ways, it is just awkward. I think the > issue is more that her head shape restricts her neck movement, than > the other way around. My daughter has a steep protrusion from the > back of her head. If she tried to lay and look flat out, her head > would fall one way or the other. If it falls to the right she just > lies with her cheek to the matterss and looks fairly comfy, if it > falls to the left (the side with the bossing) her entire body will > arch around. She won't cry and seems comfy. In fact, the " arch " is > the position in which she sleeps if I put her on her back. I stuck > in a picture of this. > > If I put her in a carseat and use infant pillow things to force her > to keep her head straight, her chin is crammed down into her chest. > The back of her head sticks out at such an angle, it can't rest > against the back of the carrier w/o pushing her face down. > > 3#) Her most restful position is on her tummy. HOWEVER, at 3 mo, she > can't lift her head up at all when she is face down. She just leaves > her cheek to the side, as usual. > > Is there a form of Plagio in which BOTH SIDES of back of the head > bulge out? Is the flattening ALWAYS in the back? My daughter has > never been able to put the weight of her head on the back and > usually has it turned to the side... but the sides of her head don't > seem particularly narrow or asymmetric side-to-side. > > I know Craniosynostosis is a concern which has to be ruled out. We > had a CT 3 weeks ago to make sure there wasn't any fluid causing the > head to swell. There wasn't. If it was Cranio, wouldn't this have > been evident on the CT? > > I appreciate any thoughts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 I hope parents of scapho babies respond. It appears scaphocephaly to me but I have never seen a scaphocephalic baby other than on pictures. Good luck! Vaelria (Lucia, 8 mo., DOC band 5/12/04) > Hi... I'm getting frightened about my daughter. I just posted > pictures under Our Plagio Kids-- Blythe. Would some of you mind > please taking a peek and giving me your opinion? We are scheduled to > see a Craniofacial Specialist in 2 weeks, do I need to push to move > up the appointment? The pictures aren't " cute " ones. I just snapped > a few while she was resting... she wasn't too happy about it I > have her in a hat in most of her fun pictures. It is hard to see the > bossing on her forehead since that is the side against the mattress, > but you can tell a bit in the straight-on picture. > > I've posted a couple of times to introduce myself. My 3 mo old > daughter (a twin) was diagnosed a week ago with Torticollis, > Macrocephaly, and Plagiocephaly.. > > My Pediatrician was not 100% about the diagnoses because while there > is some bossing (left forehead), he couldn't find any corresponding > flatness in the back. Her head is just BIG, particularly in back and > her forhead has also seems too rounded. The more I read about Plagio > and Tort. the more concerned I am getting that this isn't the > problem and maybe I have something else I need to be researching. Or > maybe I'm just freaking out. Hard to say. > > My concerns are based on- > > #1) It seems like most of the plagio kids have heads which are > smaller around than normal while my daughter's head is VERY big. > Plus, it isn't flat, it is too rounded. > > #2) She can turn her neck both ways, it is just awkward. I think the > issue is more that her head shape restricts her neck movement, than > the other way around. My daughter has a steep protrusion from the > back of her head. If she tried to lay and look flat out, her head > would fall one way or the other. If it falls to the right she just > lies with her cheek to the matterss and looks fairly comfy, if it > falls to the left (the side with the bossing) her entire body will > arch around. She won't cry and seems comfy. In fact, the " arch " is > the position in which she sleeps if I put her on her back. I stuck > in a picture of this. > > If I put her in a carseat and use infant pillow things to force her > to keep her head straight, her chin is crammed down into her chest. > The back of her head sticks out at such an angle, it can't rest > against the back of the carrier w/o pushing her face down. > > 3#) Her most restful position is on her tummy. HOWEVER, at 3 mo, she > can't lift her head up at all when she is face down. She just leaves > her cheek to the side, as usual. > > Is there a form of Plagio in which BOTH SIDES of back of the head > bulge out? Is the flattening ALWAYS in the back? My daughter has > never been able to put the weight of her head on the back and > usually has it turned to the side... but the sides of her head don't > seem particularly narrow or asymmetric side-to-side. > > I know Craniosynostosis is a concern which has to be ruled out. We > had a CT 3 weeks ago to make sure there wasn't any fluid causing the > head to swell. There wasn't. If it was Cranio, wouldn't this have > been evident on the CT? > > I appreciate any thoughts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Hi , I just want to second everything Dustie has already told you. Keep us posted. > Hi... I'm getting frightened about my daughter. I just posted > pictures under Our Plagio Kids-- Blythe. Would some of you mind > please taking a peek and giving me your opinion? We are scheduled to > see a Craniofacial Specialist in 2 weeks, do I need to push to move > up the appointment? The pictures aren't " cute " ones. I just snapped > a few while she was resting... she wasn't too happy about it I > have her in a hat in most of her fun pictures. It is hard to see the > bossing on her forehead since that is the side against the mattress, > but you can tell a bit in the straight-on picture. > > I've posted a couple of times to introduce myself. My 3 mo old > daughter (a twin) was diagnosed a week ago with Torticollis, > Macrocephaly, and Plagiocephaly.. > > My Pediatrician was not 100% about the diagnoses because while there > is some bossing (left forehead), he couldn't find any corresponding > flatness in the back. Her head is just BIG, particularly in back and > her forhead has also seems too rounded. The more I read about Plagio > and Tort. the more concerned I am getting that this isn't the > problem and maybe I have something else I need to be researching. Or > maybe I'm just freaking out. Hard to say. > > My concerns are based on- > > #1) It seems like most of the plagio kids have heads which are > smaller around than normal while my daughter's head is VERY big. > Plus, it isn't flat, it is too rounded. > > #2) She can turn her neck both ways, it is just awkward. I think the > issue is more that her head shape restricts her neck movement, than > the other way around. My daughter has a steep protrusion from the > back of her head. If she tried to lay and look flat out, her head > would fall one way or the other. If it falls to the right she just > lies with her cheek to the matterss and looks fairly comfy, if it > falls to the left (the side with the bossing) her entire body will > arch around. She won't cry and seems comfy. In fact, the " arch " is > the position in which she sleeps if I put her on her back. I stuck > in a picture of this. > > If I put her in a carseat and use infant pillow things to force her > to keep her head straight, her chin is crammed down into her chest. > The back of her head sticks out at such an angle, it can't rest > against the back of the carrier w/o pushing her face down. > > 3#) Her most restful position is on her tummy. HOWEVER, at 3 mo, she > can't lift her head up at all when she is face down. She just leaves > her cheek to the side, as usual. > > Is there a form of Plagio in which BOTH SIDES of back of the head > bulge out? Is the flattening ALWAYS in the back? My daughter has > never been able to put the weight of her head on the back and > usually has it turned to the side... but the sides of her head don't > seem particularly narrow or asymmetric side-to-side. > > I know Craniosynostosis is a concern which has to be ruled out. We > had a CT 3 weeks ago to make sure there wasn't any fluid causing the > head to swell. There wasn't. If it was Cranio, wouldn't this have > been evident on the CT? > > I appreciate any thoughts. Quote Link to comment Share on other sites More sharing options...
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