Guest guest Posted December 30, 2002 Report Share Posted December 30, 2002 Hi and welcome to the group. I think that we all can relate with your story. I think that you made the right decision, and you should find a new ped. Do you know where you are going to doctor for a helmet, or what kind of helmet that they use? Best of luck and please keep us posted. Heidi, mom to Jeffry, local helmet, MN New Mom I am a new mom to 11 week old . At her 8 week visit, I expressed my concern to her pedi about her head shape and right ear being pushed forward. Having read all the posts on this site, I went to the doctor with lots of questions. When I asked about possible Plagio, the Dr told me that her head shape was purely cosmetic and by the time she was 5, I would not even notice it. Her only suggestion was to increase tummy time. She told me if I felt I needed reassurance as a new mom, to go see a specialist. Boy, I felt like a bad mommy! So, I immeadiately made an approintment to see a neurologist. had her appt last Saturday, and without question, the neuro ordered a CAT Scan with bone windows. He is worried about possible Cranio. He said the Lambdoid bone may have prematurely closed. He said if the tests results indicate Cranio, he will refer us to a nuerosurgeon. Otherwise, he said we should think about a band. Well, her test is scheduled for next Monday, my first day back at work from maternity leave!! I saw her pedi on Monday because had a bad cold. When I told her we saw the neuro and her ordered the test, she looked so shocked and preceded to tell me that she sees this quite often and most parents do nothing for the head flattening except positioning. When I asked her what she would do if it was her child, she ignored me and just handed me a script for rash ointment. In the meantime, my fiance and I have increased tummy time and do side to side sleeping. I have noticed a change in her head shape Other than her head shaping, is completely healthy! (Thank God) She is my little angel. She was born 5 weeks premature due to placenta previa.I want to thank everyone for sharing all of their experiences. When I first read about plagio, I would just hold and cry for hours. I now know that this seems to be a common problem and there is lots of support available. I feel so much better about the situation. I just can't wait until the test is done. And I am looking for a new pedi!Thank you! (mom to )For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2002 Report Share Posted December 31, 2002 , Good for you for being on top of this- your ped sounds unfortunately all too familiar as far as Docs/advice/plagio goes. I hope the tests results prove no cranio (many times this is just a formality to rule out cranio before banding/helmeting), and its great to hear that you've already had some success with repositioning. You sound like a very smart, tough cookie, and awesome to hear that your looking for a new ped, when a Doc ignores a parents questions/concerns, its time to look for one that will be professional enough to work with the paying customer with the proper respect/ medical advice they deserve. Good for you Mom! Keep us posted on the results- and wishing you continued success with repo! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2002 Report Share Posted December 31, 2002 In a message dated 12/30/02 4:16:43 PM Eastern Standard Time, Andie74@... writes: the neuro ordered a CAT Scan with bone windows. He is worried about possible Cranio. He said the Lambdoid bone may have prematurely closed. He said if the tests results indicate Cranio, he will refer us to a nuerosurgeon. Otherwise, he said we should think about a band. Well, her test is scheduled for next Monday, my first day back at work from maternity leave!! i hope your test goes well. we all know what it's like to "not know" and to wait out the results. my thoughts are with you. good luck. *hug* /gaby, adam's mom in nj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Hello all, I am new to this message board and was hoping all the mothers out there could give me some insight into blepharophimosis. My boyfriend Jon is 24 and was diagnosed with blepharophimosis when he was born. He had surgery performed on his eyelid muscles to make them strong. He is a strong, smart, handsome man who I am proud to have as my boyfriend. We just found out that we are expecting in July, and I told my doctor about blepharophimosis and she did not seem concerned. I actually felt like everything I told her she blew off, like oh no big deal? So I am searching for other mothers who have someone in the family who has this condition, and have had offspring with or without this condition. Pregnancy is a very scary thing, and I want to be sure that I give the doctors and myself all the information and insight regarding this condition. Thank you for any replies and have a happy holiday season! Quote Link to comment Share on other sites More sharing options...
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