Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 You have joined the right group for support and answers. I didn't know what plagio was until my sons were diagnosed in August. One son has been wearing a helmet since September 1, 4 weeks short of his first birthday. In just 7 weeks I have been amazed at the reshaping of his head. You have a lot of time for your child to reshape his head. Don't feel so bad about blaming yourself about his condition, your not alone. We all wish we had known more about plagio and tort and had better medical treatment early in their lives. Good luck with 's treatment. You will get a lot of support from this group. Virginia (Mom to Zach and Matt) Oklahoma > -----Original Message----- > From: justbryandkim@... [sMTP:justbryandkim@...] > Sent: Thursday, October 26, 2000 4:02 PM > Plagiocephalyegroups > Subject: New member - 's Story > > is now 6 1/2 months and is the joy of our lives. At 2 months, > I noticed that his head was sloping from left to right in the back. > I immediately called the dr and had him checked. We were told to > incourage him to sleep on his side. Even with side sleepers, he > would push himself onto his back. At 3 months I mentioned it again. > At 4 months I was insistent that something was wrong. Our > pediatrician recommended that we keep him off his head, and keep him > sitting in chairs during the day to give his head a rest. At 5 > months I insisted that I wanted to see a specialist. Of course it > took a month just to get an appointment. They told us our options > were surgery if the bones had fused, or a helmet if they had not > fused. Either situation, we were scared and upset. We finally got > the spiral CT done yesterday. Thank goodness the bones are not > fused, except one in the front. The doctor said he thought his head > would round out on its own, but if we wanted to consider the helmet, > we better hurry because it would be too late in 3 months. We go Nov > 3 to the team who will make the helmet. My husband and I had not > heard of any other children who had a misshaped head. We are full of > questions and guilt that this is our fault...if only we had rolled > him more. We have no idea what to expect with the helmet...how well > will adjust, the time frame he has to wear it, or how people > will treat him. I would love to find another child and parent in the > Raleigh, NC area so could see other kids with helmets too. My > prayers are with you all. These are very stressful times. > > Thanks for listening! > Kim and > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 , It is within your right to get a second opinion. He is not a specialist, and should not hold to his own opinion. If you have concerns, then they need to be addressed. Many of the members have done so, and are now better off for doing it. Go with your gut instinct!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 Thank you so much! After reading a few messages from other people and hearing that they are going through the same thing - it has already lifted a great weight off my shoulders. We had never heard of anything like this, and we are the first patient our ped has recommended a helmet too. Because of that, we felt we were the only people faced with this. I am glad to hear your son is responding so well. I was so afraid that we (I should say my ped) waited too long, and treatment would not help. Please keep me posted on your son! Kim and -----Original Message----- From: Pingry, Virginia A. [mailto:Virginia.A.Pingry@...] Sent: Thursday, October 26, 2000 5:27 PM 'Plagiocephalyegroups' Subject: RE: New member - 's Story You have joined the right group for support and answers. I didn't know what plagio was until my sons were diagnosed in August. One son has been wearing a helmet since September 1, 4 weeks short of his first birthday. In just 7 weeks I have been amazed at the reshaping of his head. You have a lot of time for your child to reshape his head. Don't feel so bad about blaming yourself about his condition, your not alone. We all wish we had known more about plagio and tort and had better medical treatment early in their lives. Good luck with 's treatment. You will get a lot of support from this group. Virginia (Mom to Zach and Matt) Oklahoma > -----Original Message----- > From: justbryandkim@... [sMTP:justbryandkim@...] > Sent: Thursday, October 26, 2000 4:02 PM > Plagiocephalyegroups > Subject: New member - 's Story > > is now 6 1/2 months and is the joy of our lives. At 2 months, > I noticed that his head was sloping from left to right in the back. > I immediately called the dr and had him checked. We were told to > incourage him to sleep on his side. Even with side sleepers, he > would push himself onto his back. At 3 months I mentioned it again. > At 4 months I was insistent that something was wrong. Our > pediatrician recommended that we keep him off his head, and keep him > sitting in chairs during the day to give his head a rest. At 5 > months I insisted that I wanted to see a specialist. Of course it > took a month just to get an appointment. They told us our options > were surgery if the bones had fused, or a helmet if they had not > fused. Either situation, we were scared and upset. We finally got > the spiral CT done yesterday. Thank goodness the bones are not > fused, except one in the front. The doctor said he thought his head > would round out on its own, but if we wanted to consider the helmet, > we better hurry because it would be too late in 3 months. We go Nov > 3 to the team who will make the helmet. My husband and I had not > heard of any other children who had a misshaped head. We are full of > questions and guilt that this is our fault...if only we had rolled > him more. We have no idea what to expect with the helmet...how well > will adjust, the time frame he has to wear it, or how people > will treat him. I would love to find another child and parent in the > Raleigh, NC area so could see other kids with helmets too. My > prayers are with you all. These are very stressful times. > > Thanks for listening! > Kim and > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 Kim: Hi there and welcome to the group!! Unfortunately, your story is very similar to many of our member's. Doctors are still truly uneducated on this topic!! Thank goodness the bones are not fused, except one in the front. I need to comment on this statement that you made. It is very important that you see a pediatric neurosurgeon that is experienced at reading CT scans! 6 1/2 months is too early for ANY of the cranial sutrues to fuse, and a helmet will not help this condition. It is called craniosynostosis, and usually requires surgery to be corrected. In many cases, the doctor who reads the CT scan is not experienced with this condition, and it is often misdiagnosed. I don't want to scare you, but you need to know one way or the other. It may turn out that there are no bones fused, but if the one suture is fused, you need to know your options. I know this is scary, but we are all here for you! I'm sure Pitchke will be jumping in to talk to you, she is the "cranio. guru". Please visit CAPS 2000.org, and the cranio. eGroup. Kendra justbryandkim@... wrote: is now 6 1/2 months and is the joy of our lives. At 2 months, I noticed that his head was sloping from left to right in the back. I immediately called the dr and had him checked. We were told to incourage him to sleep on his side. Even with side sleepers, he would push himself onto his back. At 3 months I mentioned it again. At 4 months I was insistent that something was wrong. Our pediatrician recommended that we keep him off his head, and keep him sitting in chairs during the day to give his head a rest. At 5 months I insisted that I wanted to see a specialist. Of course it took a month just to get an appointment. They told us our options were surgery if the bones had fused, or a helmet if they had not fused. Either situation, we were scared and upset. We finally got the spiral CT done yesterday. Thank goodness the bones are not fused, except one in the front. The doctor said he thought his head would round out on its own, but if we wanted to consider the helmet, we better hurry because it would be too late in 3 months. We go Nov 3 to the team who will make the helmet. My husband and I had not heard of any other children who had a misshaped head. We are full of questions and guilt that this is our fault...if only we had rolled him more. We have no idea what to expect with the helmet...how well will adjust, the time frame he has to wear it, or how people will treat him. I would love to find another child and parent in the Raleigh, NC area so could see other kids with helmets too. My prayers are with you all. These are very stressful times. Thanks for listening! Kim and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 Get a second opinion .. a fused bone is something to be concerned about.. that is what craniosynositis is! Please get a second opinion. You see if the bones (sutures) sre not suppoed to be closed at this point. If they are closed the brain has no where to grow (since it is fused shut) and will compensate by growing more to the other side of the forhead. I dont believe a helmut can help the front of his forhead.. I think helmuts only work for open sutures Not trying to scare you.. my daughter is 13 months and she was just diagnosed with coronal synostosis.. I will be seeing a specialist in Nov Liz -----Original Message----- From: & Kendra [sMTP:kbgarv@...] Sent: Thursday, October 26, 2000 6:17 PM Plagiocephalyegroups Subject: Re: New member - 's Story Kim: Hi there and welcome to the group!! Unfortunately, your story is very similar to many of our member's. Doctors are still truly uneducated on this topic!! > Thank goodness the bones are not > fused, except one in the front. > I need to comment on this statement that you made. It is very important that you see a pediatric neurosurgeon that is experienced at reading CT scans! 6 1/2 months is too early for ANY of the cranial sutrues to fuse, and a helmet will not help this condition. It is called craniosynostosis, and usually requires surgery to be corrected. In many cases, the doctor who reads the CT scan is not experienced with this condition, and it is often misdiagnosed. I don't want to scare you, but you need to know one way or the other. It may turn out that there are no bones fused, but if the one suture is fused, you need to know your options. I know this is scary, but we are all here for you! I'm sure Pitchke will be jumping in to talk to you, she is the " cranio. guru " . Please visit CAPS 2000.org, and the cranio. eGroup. Kendra justbryandkim@... wrote: > is now 6 1/2 months and is the joy of our lives. At 2 months, > I noticed that his head was sloping from left to right in the back. > I immediately called the dr and had him checked. We were told to > incourage him to sleep on his side. Even with side sleepers, he > would push himself onto his back. At 3 months I mentioned it again. > At 4 months I was insistent that something was wrong. Our > pediatrician recommended that we keep him off his head, and keep him > sitting in chairs during the day to give his head a rest. At 5 > months I insisted that I wanted to see a specialist. Of course it > took a month just to get an appointment. They told us our options > were surgery if the bones had fused, or a helmet if they had not > fused. Either situation, we were scared and upset. We finally got > the spiral CT done yesterday. Thank goodness the bones are not > fused, except one in the front. The doctor said he thought his head > would round out on its own, but if we wanted to consider the helmet, > we better hurry because it would be too late in 3 months. We go Nov > 3 to the team who will make the helmet. My husband and I had not > heard of any other children who had a misshaped head. We are full of > questions and guilt that this is our fault...if only we had rolled > him more. We have no idea what to expect with the helmet...how well > will adjust, the time frame he has to wear it, or how people > will treat him. I would love to find another child and parent in the > Raleigh, NC area so could see other kids with helmets too. My > prayers are with you all. These are very stressful times. > > Thanks for listening! > Kim and > > > eGroups Sponsor > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2000 Report Share Posted October 27, 2000 I am more confused now than ever. The suture that is fused, is in the exact middle of his forehead. It is fused from 1/2 way down to his nose. What greatly concerns me, is that this has developed over the past month. I rub across his forehead every night to put him to sleep. I noticed the ridge about a month ago. When we went to the dr on Oct 10, I told them about it and they said they were not concerned unless his forehead came to a point or was narrowing. Within 2 weeks it is now visibly noticeable. I expressed my concerns again. Again they said not to worry - this is the head of neonatology. I asked if it would get worse and they said maybe, but the CT shows it is not affecting his brain and they will not do surgery for cosmetic reasons. They said that the only part they are worried about is the back, and those sutures are still open. I babysit the child of one of the dr's in this practice. When he picked up his son today, I asked him to recheck 's head, and he said that he would not worry about it if it were his son. He said that he will continue to follow 's progress very carefully, and they will watch that suture. I feel that maybe I should get the opinion of a neurosurgeon, but I am not sure I can get the referal. What do you think? -----Original Message----- From: M Ayres [mailto:layres@...] Sent: Thursday, October 26, 2000 6:51 PM 'Plagiocephalyegroups' Subject: RE: New member - 's Story Get a second opinion .. a fused bone is something to be concerned about.. that is what craniosynositis is! Please get a second opinion. You see if the bones (sutures) sre not suppoed to be closed at this point. If they are closed the brain has no where to grow (since it is fused shut) and will compensate by growing more to the other side of the forhead. I dont believe a helmut can help the front of his forhead.. I think helmuts only work for open sutures Not trying to scare you.. my daughter is 13 months and she was just diagnosed with coronal synostosis.. I will be seeing a specialist in Nov Liz -----Original Message----- From: & Kendra [sMTP:kbgarv@...] Sent: Thursday, October 26, 2000 6:17 PM Plagiocephalyegroups Subject: Re: New member - 's Story Kim: Hi there and welcome to the group!! Unfortunately, your story is very similar to many of our member's. Doctors are still truly uneducated on this topic!! > Thank goodness the bones are not > fused, except one in the front. > I need to comment on this statement that you made. It is very important that you see a pediatric neurosurgeon that is experienced at reading CT scans! 6 1/2 months is too early for ANY of the cranial sutrues to fuse, and a helmet will not help this condition. It is called craniosynostosis, and usually requires surgery to be corrected. In many cases, the doctor who reads the CT scan is not experienced with this condition, and it is often misdiagnosed. I don't want to scare you, but you need to know one way or the other. It may turn out that there are no bones fused, but if the one suture is fused, you need to know your options. I know this is scary, but we are all here for you! I'm sure Pitchke will be jumping in to talk to you, she is the " cranio. guru " . Please visit CAPS 2000.org, and the cranio. eGroup. Kendra justbryandkim@... wrote: > is now 6 1/2 months and is the joy of our lives. At 2 months, > I noticed that his head was sloping from left to right in the back. > I immediately called the dr and had him checked. We were told to > incourage him to sleep on his side. Even with side sleepers, he > would push himself onto his back. At 3 months I mentioned it again. > At 4 months I was insistent that something was wrong. Our > pediatrician recommended that we keep him off his head, and keep him > sitting in chairs during the day to give his head a rest. At 5 > months I insisted that I wanted to see a specialist. Of course it > took a month just to get an appointment. They told us our options > were surgery if the bones had fused, or a helmet if they had not > fused. Either situation, we were scared and upset. We finally got > the spiral CT done yesterday. Thank goodness the bones are not > fused, except one in the front. The doctor said he thought his head > would round out on its own, but if we wanted to consider the helmet, > we better hurry because it would be too late in 3 months. We go Nov > 3 to the team who will make the helmet. My husband and I had not > heard of any other children who had a misshaped head. We are full of > questions and guilt that this is our fault...if only we had rolled > him more. We have no idea what to expect with the helmet...how well > will adjust, the time frame he has to wear it, or how people > will treat him. I would love to find another child and parent in the > Raleigh, NC area so could see other kids with helmets too. My > prayers are with you all. These are very stressful times. > > Thanks for listening! > Kim and > > > eGroups Sponsor > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2000 Report Share Posted October 27, 2000 Kim: I would definitely get a second opinion, and a third, if it makes you more comfortable. You can never have too many when it comes to your baby! ) If it's nothing to worry about, then you will have more comfort in knowing so. If you don't get a second opinion, you will be second guessing yourself all the time, and that's torture! Just make sure that you get in to see a neurosurgeon that deals with craniosynostosis on a daily basis. What a horrible day this must have been for you! Keep your chin up, and let us know what happens. Good luck Kendra & Kim wrote: I am more confused now than ever. The suture that is fused, is in the exact middle of his forehead. It is fused from 1/2 way down to his nose. What greatly concerns me, is that this has developed over the past month. I rub across his forehead every night to put him to sleep. I noticed the ridge about a month ago. When we went to the dr on Oct 10, I told them about it and they said they were not concerned unless his forehead came to a point or was narrowing. Within 2 weeks it is now visibly noticeable. I expressed my concerns again. Again they said not to worry - this is the head of neonatology. I asked if it would get worse and they said maybe, but the CT shows it is not affecting his brain and they will not do surgery for cosmetic reasons. They said that the only part they are worried about is the back, and those sutures are still open. I babysit the child of one of the dr's in this practice. When he picked up his son today, I asked him to recheck 's head, and he said that he would not worry about it if it were his son. He said that he will continue to follow 's progress very carefully, and they will watch that suture. I feel that maybe I should get the opinion of a neurosurgeon, but I am not sure I can get the referal. What do you think? -----Original Message----- From: M Ayres [mailto:layres@...] Sent: Thursday, October 26, 2000 6:51 PM 'Plagiocephalyegroups' Subject: RE: New member - 's Story Get a second opinion .. a fused bone is something to be concerned about.. that is what craniosynositis is! Please get a second opinion. You see if the bones (sutures) sre not suppoed to be closed at this point. If they are closed the brain has no where to grow (since it is fused shut) and will compensate by growing more to the other side of the forhead. I dont believe a helmut can help the front of his forhead.. I think helmuts only work for open sutures Not trying to scare you.. my daughter is 13 months and she was just diagnosed with coronal synostosis.. I will be seeing a specialist in Nov Liz -----Original Message----- From: & Kendra [sMTP:kbgarv@...] Sent: Thursday, October 26, 2000 6:17 PM Plagiocephalyegroups Subject: Re: New member - 's Story Kim: Hi there and welcome to the group!! Unfortunately, your story is very similar to many of our member's. Doctors are still truly uneducated on this topic!! > Thank goodness the bones are not > fused, except one in the front. > I need to comment on this statement that you made. It is very important that you see a pediatric neurosurgeon that is experienced at reading CT scans! 6 1/2 months is too early for ANY of the cranial sutrues to fuse, and a helmet will not help this condition. It is called craniosynostosis, and usually requires surgery to be corrected. In many cases, the doctor who reads the CT scan is not experienced with this condition, and it is often misdiagnosed. I don't want to scare you, but you need to know one way or the other. It may turn out that there are no bones fused, but if the one suture is fused, you need to know your options. I know this is scary, but we are all here for you! I'm sure Pitchke will be jumping in to talk to you, she is the "cranio. guru". Please visit CAPS 2000.org, and the cranio. eGroup. Kendra justbryandkim@... wrote: > is now 6 1/2 months and is the joy of our lives. At 2 months, > I noticed that his head was sloping from left to right in the back. > I immediately called the dr and had him checked. We were told to > incourage him to sleep on his side. Even with side sleepers, he > would push himself onto his back. At 3 months I mentioned it again. > At 4 months I was insistent that something was wrong. Our > pediatrician recommended that we keep him off his head, and keep him > sitting in chairs during the day to give his head a rest. At 5 > months I insisted that I wanted to see a specialist. Of course it > took a month just to get an appointment. They told us our options > were surgery if the bones had fused, or a helmet if they had not > fused. Either situation, we were scared and upset. We finally got > the spiral CT done yesterday. Thank goodness the bones are not > fused, except one in the front. The doctor said he thought his head > would round out on its own, but if we wanted to consider the helmet, > we better hurry because it would be too late in 3 months. We go Nov > 3 to the team who will make the helmet. My husband and I had not > heard of any other children who had a misshaped head. We are full of > questions and guilt that this is our fault...if only we had rolled > him more. We have no idea what to expect with the helmet...how well > will adjust, the time frame he has to wear it, or how people > will treat him. I would love to find another child and parent in the > Raleigh, NC area so could see other kids with helmets too. My > prayers are with you all. These are very stressful times. > > Thanks for listening! > Kim and > > > eGroups Sponsor > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2000 Report Share Posted October 27, 2000 I am sorry but I must comment on something you said. The suture in the front is fused? If this is the case then it is Metopic Craniosynostosis and that is causing the misshaped head? This usually requires surgery but even if nothing is done a helmet will not help with a fused suture. Please check out www.caps2000.org or email me at CAPS2000@... if you would like more information. I am worried about what your doctor has told you? Pitchke -----Original Message-----From: justbryandkim@... [mailto:justbryandkim@...]Sent: Thursday, October 26, 2000 5:02 PMPlagiocephalyegroupsSubject: New member - 's Story is now 6 1/2 months and is the joy of our lives. At 2 months, I noticed that his head was sloping from left to right in the back. I immediately called the dr and had him checked. We were told to incourage him to sleep on his side. Even with side sleepers, he would push himself onto his back. At 3 months I mentioned it again. At 4 months I was insistent that something was wrong. Our pediatrician recommended that we keep him off his head, and keep him sitting in chairs during the day to give his head a rest. At 5 months I insisted that I wanted to see a specialist. Of course it took a month just to get an appointment. They told us our options were surgery if the bones had fused, or a helmet if they had not fused. Either situation, we were scared and upset. We finally got the spiral CT done yesterday. Thank goodness the bones are not fused, except one in the front. The doctor said he thought his head would round out on its own, but if we wanted to consider the helmet, we better hurry because it would be too late in 3 months. We go Nov 3 to the team who will make the helmet. My husband and I had not heard of any other children who had a misshaped head. We are full of questions and guilt that this is our fault...if only we had rolled him more. We have no idea what to expect with the helmet...how well will adjust, the time frame he has to wear it, or how people will treat him. I would love to find another child and parent in the Raleigh, NC area so could see other kids with helmets too. My prayers are with you all. These are very stressful times.Thanks for listening!Kim and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2000 Report Share Posted October 27, 2000 I am so glad you wrote more about this. Like I said it is called Metopic craniosynostosis and it is when you have a ridge in the middle of the forhead that is what you are feeling. Metopic does tend to get worse fast and you are noticing that too. Also they can't tell pressure via a CT scan. Is your child fussy or rubbing that area of the head. In some cases of Metopic that I have seen they also have a flat back of the head that I think contribute to the fused suture in the front. You need to see a neurosurgeon, they would decide if surgery was needed or not. Where are you from? Like I said in my other post check out our cranio website and let me know if I can help. Pitchke -----Original Message-----From: & Kim [mailto:justbryandkim@...]Sent: Thursday, October 26, 2000 9:31 PMPlagiocephalyegroupsSubject: RE: New member - 's StoryI am more confused now than ever. The suture that is fused, is in the exactmiddle of his forehead. It is fused from 1/2 way down to his nose. Whatgreatly concerns me, is that this has developed over the past month. I rubacross his forehead every night to put him to sleep. I noticed the ridgeabout a month ago. When we went to the dr on Oct 10, I told them about itand they said they were not concerned unless his forehead came to a point orwas narrowing. Within 2 weeks it is now visibly noticeable. I expressed myconcerns again. Again they said not to worry - this is the head ofneonatology. I asked if it would get worse and they said maybe, but the CTshows it is not affecting his brain and they will not do surgery forcosmetic reasons. They said that the only part they are worried about isthe back, and those sutures are still open. I babysit the child of one ofthe dr's in this practice. When he picked up his son today, I asked him torecheck 's head, and he said that he would not worry about it if itwere his son. He said that he will continue to follow 's progressvery carefully, and they will watch that suture. I feel that maybe I shouldget the opinion of a neurosurgeon, but I am not sure I can get the referal.What do you think?-----Original Message-----From: M Ayres [mailto:layres@...]Sent: Thursday, October 26, 2000 6:51 PM'Plagiocephalyegroups'Subject: RE: New member - 's StoryGet a second opinion .. a fused bone is something to be concerned about..that is what craniosynositis is!Please get a second opinion. You see if the bones (sutures) sre not suppoedto be closed at this point. If they are closed the brain has no where togrow (since it is fused shut) and will compensate by growing more to theother side of the forhead.I dont believe a helmut can help the front of his forhead.. I think helmutsonly work for open suturesNot trying to scare you.. my daughter is 13 months and she was justdiagnosed with coronal synostosis.. I will be seeing a specialist in NovLiz-----Original Message-----From: & Kendra [sMTP:kbgarv@...]Sent: Thursday, October 26, 2000 6:17 PM PlagiocephalyegroupsSubject: Re: New member - 's StoryKim:Hi there and welcome to the group!!Unfortunately, your story is very similar to many of our member's.Doctors are still truly uneducated on this topic!!> Thank goodness the bones are not> fused, except one in the front.>I need to comment on this statement that you made.It is very important that you see a pediatric neurosurgeon that isexperienced at reading CT scans! 6 1/2 months is too early for ANY ofthe cranial sutrues to fuse, and a helmet will not help this condition.It is called craniosynostosis, and usually requires surgery to becorrected. In many cases, the doctor who reads the CT scan is notexperienced with this condition, and it is often misdiagnosed. I don'twant to scare you, but you need to know one way or the other. It mayturn out that there are no bones fused, but if the one suture is fused,you need to know your options.I know this is scary, but we are all here for you! I'm sure Pitchke will be jumping in to talk to you, she is the "cranio. guru".Please visit CAPS 2000.org, and the cranio. eGroup.Kendrajustbryandkim@... wrote:> is now 6 1/2 months and is the joy of our lives. At 2 months,> I noticed that his head was sloping from left to right in the back.> I immediately called the dr and had him checked. We were told to> incourage him to sleep on his side. Even with side sleepers, he> would push himself onto his back. At 3 months I mentioned it again.> At 4 months I was insistent that something was wrong. Our> pediatrician recommended that we keep him off his head, and keep him> sitting in chairs during the day to give his head a rest. At 5> months I insisted that I wanted to see a specialist. Of course it> took a month just to get an appointment. They told us our options> were surgery if the bones had fused, or a helmet if they had not> fused. Either situation, we were scared and upset. We finally got> the spiral CT done yesterday. Thank goodness the bones are not> fused, except one in the front. The doctor said he thought his head> would round out on its own, but if we wanted to consider the helmet,> we better hurry because it would be too late in 3 months. We go Nov> 3 to the team who will make the helmet. My husband and I had not> heard of any other children who had a misshaped head. We are full of> questions and guilt that this is our fault...if only we had rolled> him more. We have no idea what to expect with the helmet...how well> will adjust, the time frame he has to wear it, or how people> will treat him. I would love to find another child and parent in the> Raleigh, NC area so could see other kids with helmets too. My> prayers are with you all. These are very stressful times.>> Thanks for listening!> Kim and >>> eGroups Sponsor>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2000 Report Share Posted October 27, 2000 Please know that if it is cranio the helmet will not help and I am glad you joined the cranio group also many members do that until they know for sure. I am here for you!! Pitchke -----Original Message-----From: & Kim [mailto:justbryandkim@...]Sent: Thursday, October 26, 2000 6:01 PMPlagiocephalyegroupsSubject: RE: New member - 's StoryThank you so much! After reading a few messages from other people andhearing that they are going through the same thing - it has already lifted agreat weight off my shoulders. We had never heard of anything like this,and we are the first patient our ped has recommended a helmet too. Becauseof that, we felt we were the only people faced with this. I am glad to hearyour son is responding so well. I was so afraid that we (I should say myped) waited too long, and treatment would not help. Please keep me postedon your son!Kim and -----Original Message-----From: Pingry, Virginia A. [mailto:Virginia.A.Pingry@...]Sent: Thursday, October 26, 2000 5:27 PM'Plagiocephalyegroups'Subject: RE: New member - 's StoryYou have joined the right group for support and answers. I didn't know whatplagio was until my sons were diagnosed in August. One son has been wearinga helmet since September 1, 4 weeks short of his first birthday. In just 7weeks I have been amazed at the reshaping of his head.You have a lot of time for your child to reshape his head. Don't feel sobad about blaming yourself about his condition, your not alone. We all wishwe had known more about plagio and tort and had better medical treatmentearly in their lives.Good luck with 's treatment. You will get a lot of support from thisgroup.Virginia (Mom to Zach and Matt)Oklahoma> -----Original Message-----> From: justbryandkim@... [sMTP:justbryandkim@...]> Sent: Thursday, October 26, 2000 4:02 PM> Plagiocephalyegroups> Subject: New member - 's Story>> is now 6 1/2 months and is the joy of our lives. At 2 months,> I noticed that his head was sloping from left to right in the back.> I immediately called the dr and had him checked. We were told to> incourage him to sleep on his side. Even with side sleepers, he> would push himself onto his back. At 3 months I mentioned it again.> At 4 months I was insistent that something was wrong. Our> pediatrician recommended that we keep him off his head, and keep him> sitting in chairs during the day to give his head a rest. At 5> months I insisted that I wanted to see a specialist. Of course it> took a month just to get an appointment. They told us our options> were surgery if the bones had fused, or a helmet if they had not> fused. Either situation, we were scared and upset. We finally got> the spiral CT done yesterday. Thank goodness the bones are not> fused, except one in the front. The doctor said he thought his head> would round out on its own, but if we wanted to consider the helmet,> we better hurry because it would be too late in 3 months. We go Nov> 3 to the team who will make the helmet. My husband and I had not> heard of any other children who had a misshaped head. We are full of> questions and guilt that this is our fault...if only we had rolled> him more. We have no idea what to expect with the helmet...how well> will adjust, the time frame he has to wear it, or how people> will treat him. I would love to find another child and parent in the> Raleigh, NC area so could see other kids with helmets too. My> prayers are with you all. These are very stressful times.>> Thanks for listening!> Kim and >>>> Quote Link to comment Share on other sites More sharing options...
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