Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 I think it really depends on the doctor. We didn't have cranial x-rays until after our appt., but our doc x-rays all kids if they are going into a helmet just as a precaution (he didn't think Connor had craniostenosis). Having the x-rays ahead of time could speed up the process for getting Kellan into a helmet if he needs it. Connor (PPO helmet grad 8/04, tort) --- In Plagiocephaly , " babykellan " <babykellan@y...> wrote: > My son seems to have what looks to us like Brachycephaly. Also, his > brow is very sloping. Our dr. said, yes, there is some flattening, > but it will round out on its own. This bothered me and I contacted a > dr. who deals with cranio issues and before even seeing my son, they > prescribed X-rays (skull series) and then they will evaluate him with > the x-rays in hand in a few weeks. IS THIS TYPICAL? The orthotics > company will have someone there when the dr. sees my son in case they > decide to prescribe a helmet? I am so nervous. I don't want to do > anything to my son that isn't necessary and it is hard to put your > trust in people you don't know. What is the typical process for > diagnosis? Is is odd that they would prescribe x-rays without even > seeing my son first? > > Looking for advice, > > babykellan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 Hello Babykellan I see you have gotton replies already, so I just wanted to welcome you to the group. Let us know how the x-rays go, and what the docs say. Sandy Willow's Mom Torticollis resolved Cranio Germany Grad --- In Plagiocephaly , " babykellan " <babykellan@y...> wrote: > My son seems to have what looks to us like Brachycephaly. Also, his > brow is very sloping. Our dr. said, yes, there is some flattening, > but it will round out on its own. This bothered me and I contacted a > dr. who deals with cranio issues and before even seeing my son, they > prescribed X-rays (skull series) and then they will evaluate him with > the x-rays in hand in a few weeks. IS THIS TYPICAL? The orthotics > company will have someone there when the dr. sees my son in case they > decide to prescribe a helmet? I am so nervous. I don't want to do > anything to my son that isn't necessary and it is hard to put your > trust in people you don't know. What is the typical process for > diagnosis? Is is odd that they would prescribe x-rays without even > seeing my son first? > > Looking for advice, > > babykellan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 Babykellan, Welcome to the group. So many doctors still think it'll round out on its own. Sometimes repositioning works, but when it doesn't no one can guarantee that it will round out. I think it's great that they're doing the x-rays before you see the doctor. That way he knows exactly what condition he is dealing with. Did you say that an orthotics company is sending an orthotistst to your doctors appt just in case the doc decides to band??? I've never heard of that. That seems like a lot of pressure to have to make a decision right then and there. Also, does your insurance require pre authorization?? If so, this usually takes time and is required before you can make a casting appointment. Good Luck to you! Dianna Mom to DOC Band 9/13 plagio/brachy Good luck at your appt. Keep us posted Plagiocephaly , " Sandy " <samipa74@y...> wrote: > Hello Babykellan > I see you have gotton replies already, so I just wanted to welcome > you to the group. Let us know how the x-rays go, and what the docs > say. > Sandy Willow's Mom > Torticollis resolved > Cranio Germany Grad > > > > My son seems to have what looks to us like Brachycephaly. Also, > his > > brow is very sloping. Our dr. said, yes, there is some flattening, > > but it will round out on its own. This bothered me and I contacted > a > > dr. who deals with cranio issues and before even seeing my son, > they > > prescribed X-rays (skull series) and then they will evaluate him > with > > the x-rays in hand in a few weeks. IS THIS TYPICAL? The orthotics > > company will have someone there when the dr. sees my son in case > they > > decide to prescribe a helmet? I am so nervous. I don't want to do > > anything to my son that isn't necessary and it is hard to put your > > trust in people you don't know. What is the typical process for > > diagnosis? Is is odd that they would prescribe x-rays without even > > seeing my son first? > > > > Looking for advice, > > > > babykellan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Welcome to the group. I see you ahve gotten some good replies so I won't repeat them. mom to na DOC Grad SC www.thefilyaws.combabykellan <babykellan@...> wrote: My son seems to have what looks to us like Brachycephaly. Also, his brow is very sloping. Our dr. said, yes, there is some flattening, but it will round out on its own. This bothered me and I contacted a dr. who deals with cranio issues and before even seeing my son, they prescribed X-rays (skull series) and then they will evaluate him with the x-rays in hand in a few weeks. IS THIS TYPICAL? The orthotics company will have someone there when the dr. sees my son in case they decide to prescribe a helmet? I am so nervous. I don't want to do anything to my son that isn't necessary and it is hard to put your trust in people you don't know. What is the typical process for diagnosis? Is is odd that they would prescribe x-rays without even seeing my son first? Looking for advice,babykellanFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 My daughter's doctor didn't even ask for x-rays. They just gave me a phone number and said to call as soon as possible. I am completely confused and unsure as to what to do with the information I have collected on the Internet. I would like to know if there are any negative side effects and what is typical protocol for a new plagio patient. I don't understand why my doctor suddenly decided at 5 months of age, after I have been asking about her head for four months, why I have to do something and do something quickly. It is all a little confusing. I got the impression my doctor didn't really know very much about the treatment. Have you found anything new since joining this site? Thanks and good luck. Kristyn (mom) and Skylar (5 months old-Indiana) & #65007;Plagiocephaly & #65007; , " babykellan " <babykellan@y...> wrote: > My son seems to have what looks to us like Brachycephaly. Also, his > brow is very sloping. Our dr. said, yes, there is some flattening, > but it will round out on its own. This bothered me and I contacted a > dr. who deals with cranio issues and before even seeing my son, they > prescribed X-rays (skull series) and then they will evaluate him with > the x-rays in hand in a few weeks. IS THIS TYPICAL? The orthotics > company will have someone there when the dr. sees my son in case they > decide to prescribe a helmet? I am so nervous. I don't want to do > anything to my son that isn't necessary and it is hard to put your > trust in people you don't know. What is the typical process for > diagnosis? Is is odd that they would prescribe x-rays without even > seeing my son first? > > Looking for advice, > > babykellan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 I got really confused with all of the internet information too. My son had torticollis and mild to moderate plagio on the right side of his head. We went to 2 different pediatric neurologists because we wanted to make sure we were doing the right thing. The first guy said we could get a band if it made us feel better. The second one (much more thorough) checked my son's reflexes, development, etc. He said everything looked great, but you never REALLY know if you are dealing with craniocephaly (fusion of sutures in the skull) without doing a CATscan. If a baby has cranio and needs surgery, the baby needs to have surgery before wearing a band. We had my son fitted for a helmet and he had 2 CATscans during the entire process. Thankfully, both scans turned out fine. Basically what I am trying to say is that it seems to be completely up to the parents. I chose to be extra cautious with second opinions and CATscans and I am glad I did because it gave me the peace of mind I needed for myself. Probably the reason why your doctor is finally telling your to hurry is because the quicker you get the helmet or band, the quicker and typically the better the results. I hope this helps. Re: New to this > My daughter's doctor didn't even ask for x-rays. They just gave me > a phone number and said to call as soon as possible. I am > completely confused and unsure as to what to do with the information > I have collected on the Internet. I would like to know if there are > any negative side effects and what is typical protocol for a new > plagio patient. I don't understand why my doctor suddenly decided > at 5 months of age, after I have been asking about her head for four > months, why I have to do something and do something quickly. It is > all a little confusing. I got the impression my doctor didn't > really know very much about the treatment. Have you found anything > new since joining this site? Thanks and good luck. > > Kristyn (mom) and Skylar (5 months old-Indiana) > > > > & #65007;Plagiocephaly & #65007; , " babykellan " <babykellan@y...> wrote: > > My son seems to have what looks to us like Brachycephaly. Also, > his > > brow is very sloping. Our dr. said, yes, there is some > flattening, > > but it will round out on its own. This bothered me and I > contacted a > > dr. who deals with cranio issues and before even seeing my son, > they > > prescribed X-rays (skull series) and then they will evaluate him > with > > the x-rays in hand in a few weeks. IS THIS TYPICAL? The > orthotics > > company will have someone there when the dr. sees my son in case > they > > decide to prescribe a helmet? I am so nervous. I don't want to > do > > anything to my son that isn't necessary and it is hard to put your > > trust in people you don't know. What is the typical process for > > diagnosis? Is is odd that they would prescribe x-rays without > even > > seeing my son first? > > > > Looking for advice, > > > > babykellan > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 Hi Kristyn, Well 5 months is kind of a "magic" number. According to the AAP if repo hasn't worked by then a cranial helmet/band should be used. Of course it sounds like your doc didn't even have you do repo for the past 4 months - ugh. Preemies are a little more suceptible to plagio because of extra time in the hospital and being a little behind in development (i.e. neck strength). So, have you called the number? Who did he refer you to a specialist or just the ortho? Did he write a RX? Sorry for so many questions. My ped didn't ask for xrays either. DD had classic plagio signs. A recent post had some links to research about plagio vs cranio. They had some pics of what the difference look like in real life. I believe there are also links in the files or links section. mom to na DOC grad SCpugsy__@... wrote: My daughter's doctor didn't even ask for x-rays. They just gave me a phone number and said to call as soon as possible. I am completely confused and unsure as to what to do with the information I have collected on the Internet. I would like to know if there are any negative side effects and what is typical protocol for a new plagio patient. I don't understand why my doctor suddenly decided at 5 months of age, after I have been asking about her head for four months, why I have to do something and do something quickly. It is all a little confusing. I got the impression my doctor didn't really know very much about the treatment. Have you found anything new since joining this site? Thanks and good luck.Kristyn (mom) and Skylar (5 months old-Indiana) & #65007;Plagiocephaly & #65007; , "babykellan" <babykellan@y...> wrote:> My son seems to have what looks to us like Brachycephaly. Also, his > brow is very sloping. Our dr. said, yes, there is some flattening, > but it will round out on its own. This bothered me and I contacted a > dr. who deals with cranio issues and before even seeing my son, they > prescribed X-rays (skull series) and then they will evaluate him with > the x-rays in hand in a few weeks. IS THIS TYPICAL? The orthotics > company will have someone there when the dr. sees my son in case they > decide to prescribe a helmet? I am so nervous. I don't want to do > anything to my son that isn't necessary and it is hard to put your > trust in people you don't know. What is the typical process for > diagnosis? Is is odd that they would prescribe x-rays without even > seeing my son first? > > Looking for advice,> > babykellanFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 Kristyn, It really is very treatable and nonevasive. If you dealt with Skylar being a preemie this should be a piece of cake. Please let us know how the appointment goes. We'll be with you the whole no matter if you band or not. Feel free to ask any questions or just vent frustrations. mom to na DOC Grad SC www.thefilyaws.compugsy__@... wrote: ,Thanks for your reply. I am starting to feel a little bit better about all of this. My doctor didn't have me doing any repositioning, but my husband and i felt like there were some obvious things we could try, so we did. Unfortunatetly, nothing seemed to work. We are going straight to the orthosist-actually tomorrow we go in for our cast. Still alittle nervous about the decision, but I think that it will all be for the best.Thanks,Kristyn, mom of Skylar 5 1/2months> > My son seems to have what looks to us like Brachycephaly. Also, > his > > brow is very sloping. Our dr. said, yes, there is some > flattening, > > but it will round out on its own. This bothered me and I > contacted a > > dr. who deals with cranio issues and before even seeing my son, > they > > prescribed X-rays (skull series) and then they will evaluate him > with > > the x-rays in hand in a few weeks. IS THIS TYPICAL? The > orthotics > > company will have someone there when the dr. sees my son in case > they > > decide to prescribe a helmet? I am so nervous. I don't want to > do > > anything to my son that isn't necessary and it is hard to put your > > trust in people you don't know. What is the typical process for > > diagnosis? Is is odd that they would prescribe x-rays without > even > > seeing my son first? > > > > Looking for advice,> > > > babykellan> > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 Hi Welcome to the group. From what I have read, and the people I have met (about 20), hardly any people have the type of problems with vision which you describe. I did meet one little girl who lives in Boston, age about 10 now, who had poor vision from early childhood, similar to how you describe Kenley's vision. I know that sometimes people have BPES and some other additional problems. So perhaps this might be the situation with your little girl. Last time I went to Moorfields Eye Hospital (in London, England - one of the best hospitals in Europe, with expertise in dealing with BPES) to see the specialist, I asked him if it was straight forward to diagnose somebody with BPES. His reply was that it was a very easy diagnosis, which can be done visually, in other words, a doctor can simply look at a person and tell (no blood samples or anything needed). He may have been summarising it all for me, but the bottom line is that as soon as you get to see the right doctor, I am sure you will get some fast answers. You may find it useful to look here: http://freespace.virgin.net/andy.bowles/ and here: http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html I have extracted the section on diagnosis, and pasted it below. Perhaps if you mention where you live, members of this group may be you may be able to provide you with names of specialist paediatricians and ophthalmologists with experience in this field. Normally this would be to point you in the best direction to get information, rather than endorsing a particular person or treatment. I hope this helps. Take care Shireen, London, England Diagnosis Clinical Diagnosis The diagnosis of blepharophimosis syndrome (BPES) is based primarily on the following clinical findings, which are present at birth [Oley & Baraitser 1995]: Blepharophimosis: Narrowing of the horizontal aperture of the eyelids. In normal adults, the horizontal palpebral fissure measures 25-30 mm; in individuals with BPES, it generally measures 20-22 mm. Ptosis: Drooping of the upper eyelid causing a narrowing of the vertical palpebral fissure. In individuals with BPES, ptosis is secondary to dysplasia of the musculus levator palpebrae superioris. To compensate for the ptosis, affected individuals Use the musculus frontalis, wrinkling the forehead to draw the eyebrows upward, which results in a typical facial appearance Tilt their head backward into a chin-up position Epicanthus inversus: A skinfold arising from the lower eyelid and running inwards and upwards. Telecanthus: Lateral displacement of the inner canthi with normal interpupillary distance. From: kenleyejp [mailto:kenleyejp@...] Sent: 22 January 2005 08:32blepharophimosis Subject: blepharophimosis New to this Hello all. We are still reeling from all that is going on. Kenley, a very very cute little 3 year old girl, was given to us by God by way of DHR. Her mother and father were,are, both drug addicts. We knew from day one that something was not right. At 6mnths they tested kenley for E.D. HOwever the test came back and we were told not to worry everything was fine. However at 3 years when she went back they still didn't like how her eyes looked. The Drs now think she MAY have this syndrome. We are confussed because kenleys eyes look a little like many of the pics however the effects do not seem to be as several as some of the pics. On the other hand there is nothing normal about this childs eyes. EVery part of her eye has failed to form right or not form at all. At age 3 kenley's glass prescription is already at a +6. We had to have the lenses in her glasses cut special by nikon so they could get them thick enough and still fit in toddlers frames. We dont really know what is coming next because they THINK this may be the problem. We are just sort of lost out here in "waiting to see land". Does this normally cause such hugh problems with the eyes themselves are is this seperate and something else we have to look forward to finding the cause of? God Bless each of you and may HE bless you and all of your children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 , My son Garrett is very poor vision. He's been wearing glasses since he was 1½ and his prescription changes every 4 months. Although the new eye doctor he has said that his prescription is fine now. I find that hard to believe since for one he's been getting new ones every 4 months and two he keeps telling me he can't see out of his glasses, but anyway..his lenses are pretty thick, but it sounds like Kenley's may be thicker. My husband blames the eye doctor for not opening his eyes soon enough. We were told when he was a baby that if his eyelids weren't so far above his pupils that he could end up blind. My husband feels they waited too long to raise his eyelids above that point and because of that his vision is poor. Not sure if that's true or not, but i guess it could be. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 , The eye surgeon's argument to perform an operation on , our granddaughter with BEPS, was exactly what your husband thinks. She had a stiff discussion with the Plastic surgeon, who was not to keen on the operation. Her arguments were stronger and they decided to operate (3 months old) immediately. Regards, Dolph Heideman The Netherlands Re: blepharophimosis New to this ,My son Garrett is very poor vision. He's been wearing glasses since he was1½ and his prescription changes every 4 months. Although the new eye doctorhe has said that his prescription is fine now. I find that hard to believesince for one he's been getting new ones every 4 months and two he keepstelling me he can't see out of his glasses, but anyway..his lenses arepretty thick, but it sounds like Kenley's may be thicker. My husband blamesthe eye doctor for not opening his eyes soon enough. We were told when hewas a baby that if his eyelids weren't so far above his pupils that he couldend up blind. My husband feels they waited too long to raise his eyelidsabove that point and because of that his vision is poor. Not sure if that'strue or not, but i guess it could be. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 , Not 100 % sure on this one but as I am told...I thought this condition was mostly cosmetic and doesn't effect vision...unless the lids are so closed they can't see. (I know my kids had little pereficails until sergury was done.) Then the brain tells the eyes to shut down because something is wrong...Had anyone else heard this ? kenleyejp <kenleyejp@...> wrote: Hello all. We are still reeling from all that is going on. Kenley, a very very cute little 3 year old girl, was given to us by God by way of DHR. Her mother and father were,are, both drug addicts. We knew from day one that something was not right. At 6mnths they tested kenley for E.D. HOwever the test came back and we were told not to worry everything was fine. However at 3 years when she went back they still didn't like how her eyes looked. The Drs now think she MAY have this syndrome. We are confussed because kenleys eyes look a little like many of the pics however the effects do not seem to be as several as some of the pics. On the other hand there is nothing normal about this childs eyes. EVery part of her eye has failed to form right or not form at all. At age 3 kenley's glass prescription is already at a +6. We had to have the lenses in her glasses cut special by nikon so they could get them thick enough and still fit in toddlers frames. We dont really know what is coming next because they THINK this may be the problem. We are just sort of lost out here in "waiting to see land". Does this normally cause such hugh problems with the eyes themselves are is this seperate and something else we have to look forward to finding the cause of? God Bless each of you and may HE bless you and all of your children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 Shireen, I was told that too...A Dr. who knows about the condition can look at you and tell. I too ( as most of us can I think ) look at someone and just know. I believe the condition (weather severe or mild ) kind has the same look to it. In most cases my Dr. says it is only cosmetic, your eye site is fine.....Think more reseach and education needs to be done on this condition. Sharon Andy Bowles & Shireen Mohandes <andy.bowles@...> wrote: Hi Welcome to the group. From what I have read, and the people I have met (about 20), hardly any people have the type of problems with vision which you describe. I did meet one little girl who lives in Boston, age about 10 now, who had poor vision from early childhood, similar to how you describe Kenley's vision. I know that sometimes people have BPES and some other additional problems. So perhaps this might be the situation with your little girl. Last time I went to Moorfields Eye Hospital (in London, England - one of the best hospitals in Europe, with expertise in dealing with BPES) to see the specialist, I asked him if it was straight forward to diagnose somebody with BPES. His reply was that it was a very easy diagnosis, which can be done visually, in other words, a doctor can simply look at a person and tell (no blood samples or anything needed). He may have been summarising it all for me, but the bottom line is that as soon as you get to see the right doctor, I am sure you will get some fast answers. You may find it useful to look here: http://freespace.virgin.net/andy.bowles/ and here: http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html I have extracted the section on diagnosis, and pasted it below. Perhaps if you mention where you live, members of this group may be you may be able to provide you with names of specialist paediatricians and ophthalmologists with experience in this field. Normally this would be to point you in the best direction to get information, rather than endorsing a particular person or treatment. I hope this helps. Take care Shireen, London, England Diagnosis Clinical Diagnosis The diagnosis of blepharophimosis syndrome (BPES) is based primarily on the following clinical findings, which are present at birth [Oley & Baraitser 1995]: Blepharophimosis: Narrowing of the horizontal aperture of the eyelids. In normal adults, the horizontal palpebral fissure measures 25-30 mm; in individuals with BPES, it generally measures 20-22 mm. Ptosis: Drooping of the upper eyelid causing a narrowing of the vertical palpebral fissure. In individuals with BPES, ptosis is secondary to dysplasia of the musculus levator palpebrae superioris. To compensate for the ptosis, affected individuals Use the musculus frontalis, wrinkling the forehead to draw the eyebrows upward, which results in a typical facial appearance Tilt their head backward into a chin-up position Epicanthus inversus: A skinfold arising from the lower eyelid and running inwards and upwards. Telecanthus: Lateral displacement of the inner canthi with normal interpupillary distance. From: kenleyejp [mailto:kenleyejp@...] Sent: 22 January 2005 08:32blepharophimosis Subject: blepharophimosis New to this Hello all. We are still reeling from all that is going on. Kenley, a very very cute little 3 year old girl, was given to us by God by way of DHR. Her mother and father were,are, both drug addicts. We knew from day one that something was not right. At 6mnths they tested kenley for E.D. HOwever the test came back and we were told not to worry everything was fine. However at 3 years when she went back they still didn't like how her eyes looked. The Drs now think she MAY have this syndrome. We are confussed because kenleys eyes look a little like many of the pics however the effects do not seem to be as several as some of the pics. On the other hand there is nothing normal about this childs eyes. EVery part of her eye has failed to form right or not form at all. At age 3 kenley's glass prescription is already at a +6. We had to have the lenses in her glasses cut special by nikon so they could get them thick enough and still fit in toddlers frames. We dont really know what is coming next because they THINK this may be the problem. We are just sort of lost out here in "waiting to see land". Does this normally cause such hugh problems with the eyes themselves are is this seperate and something else we have to look forward to finding the cause of? God Bless each of you and may HE bless you and all of your children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 Dolph, Garrett did end up having surgery as a baby. He was almost 5 months old when he had it done, but my husband still felt they waited too long. He felt that he should have had the surgery as a newborn because he couldn't open his eyes for the first 3 wks. Guess we'll never really know if that is what caused his vision to be so bad. For the longest time we were patching his right eye because he wasn't using his left eye, but when we switched doctors she said that he was using boths eyes equally now. When he watches television he doesn't even look straight at the tv. His head is always turned to the left. Makes me think he's still not using his left eye. When he has his vision test and they cover up one eye to test the other, he can't even see what they are showing him. He has to use both eyes to be able to see or he can't see what they are showing him. , The eye surgeon's argument to perform an operation on , our granddaughter with BEPS, was exactly what your husband thinks. She had a stiff discussion with the Plastic surgeon, who was not to keen on the operation. Her arguments were stronger and they decided to operate (3 months old) immediately. Regards, Dolph Heideman The Netherlands Re: blepharophimosis New to this ,My son Garrett is very poor vision. He's been wearing glasses since he was1½ and his prescription changes every 4 months. Although the new eye doctorhe has said that his prescription is fine now. I find that hard to believesince for one he's been getting new ones every 4 months and two he keepstelling me he can't see out of his glasses, but anyway..his lenses arepretty thick, but it sounds like Kenley's may be thicker. My husband blamesthe eye doctor for not opening his eyes soon enough. We were told when hewas a baby that if his eyelids weren't so far above his pupils that he couldend up blind. My husband feels they waited too long to raise his eyelidsabove that point and because of that his vision is poor. Not sure if that'strue or not, but i guess it could be. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 , did not open her eyes the first 3 weeks. Then she tried to open up and bit by bit she succeeded but according to the eye specialist by far not enough, that's why she operated being 3 months old. Of course one always tries to understand if the things that happened (or did not happen) in the past were the right things and if not what was it that went wrong. Sometimes one gets the answers but mostly thats negative. If I were in your position I would focus on the future, work on that and do everything possible for Garret. Did you post pictures of him in the photo section? What's his age? Best regards, Dolph Re: blepharophimosis New to this ,My son Garrett is very poor vision. He's been wearing glasses since he was1½ and his prescription changes every 4 months. Although the new eye doctorhe has said that his prescription is fine now. I find that hard to believesince for one he's been getting new ones every 4 months and two he keepstelling me he can't see out of his glasses, but anyway..his lenses arepretty thick, but it sounds like Kenley's may be thicker. My husband blamesthe eye doctor for not opening his eyes soon enough. We were told when hewas a baby that if his eyelids weren't so far above his pupils that he couldend up blind. My husband feels they waited too long to raise his eyelidsabove that point and because of that his vision is poor. Not sure if that'strue or not, but i guess it could be. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Dolph, Yes, i do have one picture of Garrett in the photo's section. It's not the best though. I have one of my oldest son who also had surgery for BPES. His eyes look wonderful since surgery. He has formed some sort of deposit on the inside corner of his eye and the surgeon said that they would remove it when he's a little older. He's 11 now and had his final surgery when he was 6. I'll have to take some recent pictures of both of them and find some baby pictures of them and put them in the photo section. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 dear About your childs head tilting, Aedan is being condidered for eye surgery because of his head tilting to the side as well. Our opthamalogist, Dr. Campolataro feels that he uses both eyes equally but his eye jiggle more that usual and therefore he angles his head in order to steady his eyes. Anyone ever hear of this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 , I found the pic. under . He sure has a nice smile that Garret of yours and so does Austin. Dolph Re: blepharophimosis New to this Dolph, Yes, i do have one picture of Garrett in the photo's section. It's not the best though. I have one of my oldest son who also had surgery for BPES. His eyes look wonderful since surgery. He has formed some sort of deposit on the inside corner of his eye and the surgeon said that they would remove it when he's a little older. He's 11 now and had his final surgery when he was 6. I'll have to take some recent pictures of both of them and find some baby pictures of them and put them in the photo section. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 , Garrett also had surgery on his eyes because his eyes couldn't move around like they were supposed to. He tilted his head to the side that way before that surgery, but nothing has ever said anything about his eye being too jiggly, but when you cover one eye the other eye is jiggly and can't focus on what he's looking at. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 It sounds to me as if for many of you this is more than just cosmetic. There are some real eye problems for others than Kenley. Keep us in your prayers Kenley goes for her first " early intervention " interview today with the school. > , > > Garrett also had surgery on his eyes because his eyes couldn't move > around like they were supposed to. He tilted his head to the side that way > before that surgery, but nothing has ever said anything about his eye being > too jiggly, but when you cover one eye the other eye is jiggly and can't > focus on what he's looking at. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2005 Report Share Posted February 10, 2005 Thank you so much. I was nervous about knowing whether or not to get a second opinion. I have a lot of family members who have very strong opinions both ways. Either they really want her to get the band or they are really discouraging me. So that makes me feel better. And thanks for all the info. My doctor said that CT is very good. She seemed to know a lot and said they are trustworthy but I still didn't know what to do. I felt like even if she didn't need it, they would tell me she did just to sell their product. So thank you for everything. It's a big help! > > Hi Everyone, > My daughter is a little over 6 mo. old and at her last well visit, her ped. referred > me to Cranial Technologies in Chicago. (We're from Illinois). I knew her head > was flatter in the back but I guess I didn't realize how much. I feel sooo guilty. > I feel like it's my fault for letting her be on her back too much. I have a few > questions for anyone that could help...Has anyone else had only their > pediatrician refer them to get a DOC Band? Should I get a second opinion > before I go through with it? like from a pediatric neurosurgeon? Also, does > anyone know of any long term effects or has anyone had any negative > experiences with this? Most of the stuff I've read has been positive but I want > to make sure before I go through with it. Thanks! > Haley > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2005 Report Share Posted February 10, 2005 I know, I have never heard of this either. I wish more doctors would warn you a little more about repositioning and how important it is for " tummy time " . I will keep you all posted. We go for our first appointment tomorrow. --- In Plagiocephaly , " Angie Pope " <apope04@c...> wrote: > Haley this isn't your fault. I at first blamed myself too. But it isn't > our faults. Jenna was my 3rd. I didn't do anything different with her then > my 1st two. I had never heard of plagio before. > > Our Dr. referred us to a specialist only because he was very unfamiliar with > plagio. Many members have been refered from the pediatrician. > > We didn't have any negatives from Jenna's STArband. She wore it from age 9 > to 12 months. She has pictures under Jenna. Also she has before and after > under STARbands. > > Good luck with your decision. Please keep us posted. > > Angie and Jenna(STAr grad 1/21/03) > new to this > > > > > > > > Hi Everyone, > > My daughter is a little over 6 mo. old and at her last well visit, her > > ped. referred > > me to Cranial Technologies in Chicago. (We're from Illinois). I knew her > > head > > was flatter in the back but I guess I didn't realize how much. I feel > > sooo guilty. > > I feel like it's my fault for letting her be on her back too much. I have > > a few > > questions for anyone that could help...Has anyone else had only their > > pediatrician refer them to get a DOC Band? Should I get a second opinion > > before I go through with it? like from a pediatric neurosurgeon? Also, > > does > > anyone know of any long term effects or has anyone had any negative > > experiences with this? Most of the stuff I've read has been positive but > > I want > > to make sure before I go through with it. Thanks! > > Haley > > > > > > > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2005 Report Share Posted February 10, 2005 You are all so nice! This is already making me feel so much better about things. It is nice to know there are other moms who have been through this and had good results. We have a consultation with CT tomorrow but I didn't know it was free, so thanks for that. It is also helpful to know that it is common for a pediatrician to write prescriptions for this. She also wrote a letter of medical necessity which I hope will help with insurance but who knows. > > Hi Everyone, > My daughter is a little over 6 mo. old and at her last well visit, her ped. referred > me to Cranial Technologies in Chicago. (We're from Illinois). I knew her head > was flatter in the back but I guess I didn't realize how much. I feel sooo guilty. > I feel like it's my fault for letting her be on her back too much. I have a few > questions for anyone that could help...Has anyone else had only their > pediatrician refer them to get a DOC Band? Should I get a second opinion > before I go through with it? like from a pediatric neurosurgeon? Also, does > anyone know of any long term effects or has anyone had any negative > experiences with this? Most of the stuff I've read has been positive but I want > to make sure before I go through with it. Thanks! > Haley > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2005 Report Share Posted February 10, 2005 Haley, All of us feel guilty at first, but that quickly fades as you become more informed. What you need to tell yourself is that you are doing the right thing for your baby and that you are a good mommy.Our son Dominick just got his band today from CT in ndale,Virginia, and we have so far had nothing, but positive things happen with them. Dominick is 5 months old today, and you can check out his new pictures in his folder named DOMINICK to get an idea of what they look like.Also, we were reffered by only our pediatrician. The people at Cranial Tech. will let you know if they think there is more to it than positional plagiocephaly. There is a chat Friday night at 10:00pm you should join in and ask all the questions you want, they have helped us thru so much already. Hope to talk to you soon, --- In Plagiocephaly , " haley379 " <haley379@y...> wrote: > > Hi Everyone, > My daughter is a little over 6 mo. old and at her last well visit, her ped. referred > me to Cranial Technologies in Chicago. (We're from Illinois). I knew her head > was flatter in the back but I guess I didn't realize how much. I feel sooo guilty. > I feel like it's my fault for letting her be on her back too much. I have a few > questions for anyone that could help...Has anyone else had only their > pediatrician refer them to get a DOC Band? Should I get a second opinion > before I go through with it? like from a pediatric neurosurgeon? Also, does > anyone know of any long term effects or has anyone had any negative > experiences with this? Most of the stuff I've read has been positive but I want > to make sure before I go through with it. Thanks! > Haley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2005 Report Share Posted February 13, 2005 Hi Haley Many peds refer out without a second opinion, and CT will give you an honest evaluation. They are the most experienced people in banding babies. You should not feel guilty, b/c it's not something you did wrong. Many kids spend the entire infanthood on their backs, and never develope plagio, and some spend limited time on their backs, and still develope this condition. Let us know how the eval goes. Check with your insurance about the band, and then find out if you should wait for a preauth, or it might not make a difference. Sandy Willow's Mom Cranio Germany Grad Tort resolved http://www.geocities.com/samipa74/Willow_Lanette.html --- In Plagiocephaly , " haley379 " <haley379@y...> wrote: > > Hi Everyone, > My daughter is a little over 6 mo. old and at her last well visit, her ped. referred > me to Cranial Technologies in Chicago. (We're from Illinois). I knew her head > was flatter in the back but I guess I didn't realize how much. I feel sooo guilty. > I feel like it's my fault for letting her be on her back too much. I have a few > questions for anyone that could help...Has anyone else had only their > pediatrician refer them to get a DOC Band? Should I get a second opinion > before I go through with it? like from a pediatric neurosurgeon? Also, does > anyone know of any long term effects or has anyone had any negative > experiences with this? Most of the stuff I've read has been positive but I want > to make sure before I go through with it. Thanks! > Haley Quote Link to comment Share on other sites More sharing options...
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