Guest guest Posted April 8, 2001 Report Share Posted April 8, 2001 Christy, I just joined the group myself a couple of days ago. However, my son has had his helmet 4 weeks now. I have been researching this subject for about five months now. Husbands always think you worry to much, mine did too. Just because your daughter is healthy doesn't mean you don't care if her head is mis shaped. My ped did not think it was serious either. I demanded he send me to a ped neurosurgeon. It was the ped neurosurgeon, that took x-rays to rule out sysnotois or anything major. Then he took measurements for a month to see if it would improve. I new it wouldn't because his physical therapist has been taking measurements since he was 8 weeks old, for 2 1/2 months. With Aggressive repositioning for 3 1/2 months it didn't get worse, but it didn't get better either. It was off 18 mm and 3 1/2 months later it was still off. I don't think 12 months is to old, they just have to where it longer. However, I would do something as soon as possible. If your ped doesn't want to send you to a ped neurosurgeon, go see another ped. This is the only chance you have to reshape her head. My oldest daughters name is lynn, I just love that name. Cherie - 's mom. -----Original Message----- From: mrsstoutsclass@... [mailto:mrsstoutsclass@...] Sent: Saturday, April 07, 2001 11:42 PM Plagiocephaly Subject: Just a few questions I just joined this group tonight. I was hoping that maybe I could find a few answers about my daughter's head shape. My daughter is 12 months old. At her 4 month check-up a student doctor was with my daughter's pediatrician. He immediatley noticed that Brooklyn's head was flat on one side and protuded on the other. He also made note of the fact that her ears were uneven (I had noticed this before, but was told not to worry about it). When he brought in our regular doctor, she told me not to worry and that it would reshape on its own. Until tonight, I had never heard of this condition. I found it surfing on the net because, like every night, after Brooklyn's bath I began to worry about her head shape again. Now I am very afraid that this is what is wrong and that it is too late to correct it. Okay, I went through all of to get to my questions. Here they are: Have I waited to long for there to be treatment? What happens if there is no treatment? How do I get my pediatrician to take me seriously about this? I feel silly every time I mention it. I feel like she thinks I am overly concerned with apperances. Has anyone ever had lack of support from their husband? Mine gets upset with me when I bring the subject of Brooklyn's head up. He says I am borrowing trouble just because our first daughter had three holes in her heart at birth and that I can't accept that Brooklyn is healthy. What should I do? Sorry that was so long. Thanks for your patience! Christy Stout Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 I am sorry if this has been answered but I have been out of town. If the flat spot is on the opposite side of the bump on the forehead it could be Coronal Craniosynostosis and you should go to a peds neurosurgeon and get a CT scan done to confirm if it is Craniosynostosis or Positional. If you have any questions please email me at CAPPSORG@... and check out our website at www.cappskids.org I am here for you if you need anything. Pitchke Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 Christy: Have I waited to long for there to be treatment?No. The DOC band and the STARband can both be used (started) in the second year. What happens if there is no treatment? This is still unclear, but many have suggested that vision/jaw problems may occur in the future, also migraines, self esteem issues, fitting glasses to misaligned ears/asymmetrical face, wearing safety helmets on a parallelogram shaped head..... How do I get my pediatrician to take me seriously about this? I feel silly every time I mention it. I feel like she thinks I am overly concerned with apperances.If you are not comfortable talking to this ped., find a new one. Your doctor MUST take your concerns seriously. Ask (demand!) for a referral to a pediatric neurosurgeon/p. neurologist/p. plastic surgeon and physical therapist for a torticollis evaluation. Has anyone ever had lack of support from their husband? I think that husbands feel the need to "hold it all together". The doctor says everything is fine, but you worry, so hubby feels that he needs to make it clear that it's OK. Daddies are very protective of their babies, and if the doctor says it's OK, then why do you want to put your baby in a helmet? You have the privilege of educating both your doctor and your husband about this. Hubby should be more accepting after you talk to a doctor who will acknowledge your concerns. p.s. before asking for your referral, call around to local neuros to find one who sees plagio babies. This can make all the difference! See the Cranial Technologies page (www.cranialtech.com ) for a list of clinics/doctors, or go to Plagiocephaly.org (http://www.plagiocephaly.org/ppcs-location.asp ) to find a list of preferred physicians. Kendra in CanadaFor more plagio info, go towww.plagiocephaly.org/support ----- Original Message ----- From: mrsstoutsclass@... Plagiocephaly Sent: Saturday, April 07, 2001 9:42 PM Subject: Just a few questions I just joined this group tonight. I was hoping that maybe I could find a few answers about my daughter's head shape. My daughter is 12 months old. At her 4 month check-up a student doctor was with my daughter's pediatrician. He immediatley noticed that Brooklyn's head was flat on one side and protuded on the other. He also made note of the fact that her ears were uneven (I had noticed this before, but was told not to worry about it). When he brought in our regular doctor, she told me not to worry and that it would reshape on its own. Until tonight, I had never heard of this condition. I found it surfing on the net because, like every night, after Brooklyn's bath I began to worry about her head shape again. Now I am very afraid that this is what is wrong and that it is too late to correct it. Okay, I went through all of to get to my questions. Here they are:Have I waited to long for there to be treatment?What happens if there is no treatment?How do I get my pediatrician to take me seriously about this? I feel silly every time I mention it. I feel like she thinks I am overly concerned with apperances.Has anyone ever had lack of support from their husband? Mine gets upset with me when I bring the subject of Brooklyn's head up. He says I am borrowing trouble just because our first daughter had three holes in her heart at birth and that I can't accept that Brooklyn is healthy. What should I do?Sorry that was so long. Thanks for your patience!Christy Stout Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2001 Report Share Posted April 10, 2001 Christy, While 12 months is not the ideal time to begin treatment, many people in this group have started at this age and later and have had very good results. However, the earlier the better so if you think treatment is in order then starting pushing and pushing hard now!! If you can't make your current ped listen then find one who will. Untreated plagio can cause a myriad of complications like speech and language delay, TMJ, vision problems, etc. You might print off information about plagio to take to your next ped appointment. You will need your ped to give you a referral to specialist. As far as unsupportive husbands, there are many people in this group who have had this problem. He will no doubt need to be convinced right along with the ped. If Brooklyn's head has not " rounded out " on its own by now then it probably will require treatment. Sooooo many of us here have heard the famous words " it will round out on its own " and that was not the case for any of us. It is obvious that your mommy instinct has already spoken to you. You feel like something needs to be done so run with it!!! You might visit cappskids.org - it will provide a lot of information about the condition. I hope you will stick with us. You will find a wealth of information here as well as supportive and loving members who will always be there with a kind word or an answer. Marci (Mom to - helmet grad) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2001 Report Share Posted April 10, 2001 > Has anyone ever had lack of support from their husband? > I think that husbands feel the need to " hold it all together " . Ive also found that my husband subscribes to the belief that 'A problem ignored is a problem solved'. The old head in the sand treatment! Bless him! Kimberley (Evan and Hope's Mummy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 after being on xolair for 16 months, i've reached the peak benifits from it. i'm sitting here, just frustrated that i have not been able to discontinue any meds (in fact, we added one last march). not all are asthma related (some are sinus related, and one for GERD which effects the asthma), but all but one were hoped to be decreased or discontinued after xolair. (on advair 500, flovent 220, singulair, semprex-D, biaxin, uniphyl, rhinocortAQ, astelin, xolair, pepcid plus albuterol PRN). granted, i haven't needed prednisone since thanksgiving (which is a biggie i realize, before xolair, i was on a 3-5 week taper every 4-8 weeks). has anyone been able to decrease their maintainence meds? am i just overtired and therefore frustrated and whiney? i sat and talked with my dr at length on monday about this, and she really doesn't see any we can remove. once june comes (lower pollen levels) she agreed to try removing singulair. i don't think it does much anyway. my other question - my dr is in search of why, despite all the medications i'm still having some trouble. she's talking about doing some food allergy testing in june, with the thought that maybe something i eat every day is causing me trouble. (the allergy testing will be the skin prick kind...RAST/bloodwork has never been too accurate for me). does anyone know if xolair will mess up the test? i know you can't take any antihistamines within 48 hours. hope all is well. my husband and i have been busy doing serious renovations on a house we just bought. i've been wearing a mask for the bulk of it, but even still, my lungs and sinuses are complaining. all the dusty work should be done by the weekend. have a great week heather Quote Link to comment Share on other sites More sharing options...
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