Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 I am married, for 6 years. Eli is my 3rd (and last). Aurora is almost 6, and Emma is almost 4. They are great big sisters. I am a SAHM, and spent most of my pregnancy on bedrest due to pre-term labor. We just got back from PT, and they want Eli to start coming 2x a week. Yuck! Its such a bad drive down there. Too much traffic! J <lickjohnson@...> wrote: Crissy,Yes, I totally agree. Way too much in common. Are you married? Is Eli your first child? Are you a working or stay-at-home mom? So many questions I have for you now!=)> > I honestly think one of the best things we can do as> > parents of banded children is to show them off. By> > showing them off, in a small scale, we will build> > awareness out there about plagio/tort and hopefully> > help another parent, and so on and so on (I sound like> > that 70s shampoo commercial!). > > > > It might seem like a small thing and not really doing> > anything, but ask yourself, how many people ask you> > about the helmet. And who do you go to first when you> > have a problem -- another parent. Way before you talk> > to your pediatrician about it. > > > > I have already had 2 people ask, in addition to those> > at daycare who have asked the teachers, about my son's> > helmet. Now, if one of those parents has a friend who> > is a new parent talking about the problems their child> > is having -- they just might remember our situation> > and someone talking about a helmet. Am I making sense?> > > > > > So show your children off proudly! Plus, it might help> > with the stigma that seems to be attached to the> > helmet.> > --- usviteacher <usviteacher@h...> wrote:> > > > > Hello..your families story sounds just like> > > mines..Plagio..was noted > > > in DS charts from early-on..Pedi never discussed it> > > with me..months > > > and months went by..and of course..I would ask PEDI> > > about the shape of > > > DS head..and I got the "it will round out..when the> > > baby starts > > > sitting and crawling"..it did not!> > > > > > Now, at 9 1/2 months..Andres received his Hanger> > > Helmet (been wearing > > > it for almost 2 weeks now) after..I told the PEDI> > > that I need a RE: to > > > find out whats going on with Andres head! It brings> > > tears to my eyes > > > to know that if Andres's PEDI referred us to see the> > > specalist much > > > earlier..reposition would of probably worked..or> > > Andres would of had > > > to wear a Helmet..for a much shorter time..and> > > would of probably > > > gotten much better results!> > > > > > What can we do as parents?> > > > > > Hazel> > > > > > Andres.. 9 1/2 months, Hanger Helmet ( almost 2> > > weeks), Southern, CA> > > > > > > > > > > > > > > __________________________________________________> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 I am married, for 6 years. Eli is my 3rd (and last). Aurora is almost 6, and Emma is almost 4. They are great big sisters. I am a SAHM, and spent most of my pregnancy on bedrest due to pre-term labor. We just got back from PT, and they want Eli to start coming 2x a week. Yuck! Its such a bad drive down there. Too much traffic! J <lickjohnson@...> wrote: Crissy,Yes, I totally agree. Way too much in common. Are you married? Is Eli your first child? Are you a working or stay-at-home mom? So many questions I have for you now!=)> > I honestly think one of the best things we can do as> > parents of banded children is to show them off. By> > showing them off, in a small scale, we will build> > awareness out there about plagio/tort and hopefully> > help another parent, and so on and so on (I sound like> > that 70s shampoo commercial!). > > > > It might seem like a small thing and not really doing> > anything, but ask yourself, how many people ask you> > about the helmet. And who do you go to first when you> > have a problem -- another parent. Way before you talk> > to your pediatrician about it. > > > > I have already had 2 people ask, in addition to those> > at daycare who have asked the teachers, about my son's> > helmet. Now, if one of those parents has a friend who> > is a new parent talking about the problems their child> > is having -- they just might remember our situation> > and someone talking about a helmet. Am I making sense?> > > > > > So show your children off proudly! Plus, it might help> > with the stigma that seems to be attached to the> > helmet.> > --- usviteacher <usviteacher@h...> wrote:> > > > > Hello..your families story sounds just like> > > mines..Plagio..was noted > > > in DS charts from early-on..Pedi never discussed it> > > with me..months > > > and months went by..and of course..I would ask PEDI> > > about the shape of > > > DS head..and I got the "it will round out..when the> > > baby starts > > > sitting and crawling"..it did not!> > > > > > Now, at 9 1/2 months..Andres received his Hanger> > > Helmet (been wearing > > > it for almost 2 weeks now) after..I told the PEDI> > > that I need a RE: to > > > find out whats going on with Andres head! It brings> > > tears to my eyes > > > to know that if Andres's PEDI referred us to see the> > > specalist much > > > earlier..reposition would of probably worked..or> > > Andres would of had > > > to wear a Helmet..for a much shorter time..and> > > would of probably > > > gotten much better results!> > > > > > What can we do as parents?> > > > > > Hazel> > > > > > Andres.. 9 1/2 months, Hanger Helmet ( almost 2> > > weeks), Southern, CA> > > > > > > > > > > > > > > __________________________________________________> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2008 Report Share Posted May 28, 2008 Hi ! I'm glad you found this group. You'll probably find that many of us share your frustrations with the whole process. It is frustrating. The whole staring issue is actually what drew me to join this group. My son got his helmet 7wks ago and I wasn't worried about what people thought of it until we started going places with it on. People can really be nosey! I've gotten more comfortable with it now, but it really really bothered me at first. I've had the same person stop me twice in the grocery store, then follow me out to my van to ask about it, people stopping me in full stride to ask about it, laughing...it drives me nuts! People need to mind their own business a little more I think. But, I told myself that every person I take the time to explain it to will be one more person who won't have to ask the next person and might not stare as much in the future. The greater lengths they go to to get my attention, the stronger the language/more drama I use to explain it. The woman who followed me out to my van got the " he had a deformity and the helmet is supposed to fix it " answer. The more polite people get " he had a flat spot and the helmet is reshaping his head " answer! Hang in there! It sounds like he's adjusting to it well and it will all be worth it in the end! *9mo*tort resolved*lft plagio*STARband 7wks Conner *2yrs NC USA > > Hi my name is and I just joined this group yesterday so I am a > little unsure of how it works.. I have an 8 month old son Gavin who was > diagnosed with plagiocephly around 3 months. The doctors assured us it > would fix itself once he started sitting up, rolling etc...well it > didn't. Around 5 months I asked to see a specialist at Dornbecker > Children's hospital in Portland, Oregon. The specialist said if she were > me should would wait another 6 weeks to see if it improved on its own. > So we left and I began thinking if I wanted anything done about this I > was going to have to take charge. It was almost like they didn't want to > hassle with it. I called back and told them I was going ahead with the > helmet. So we made a appointment for the scan at Hanger. We had the scan > done on a Friday and the helmet was supposed to be done in 2 weeks, so > when 2 and ½ weeks went by and I hadn't heard anything I decided to > call. The receptionist told he that the she didn't know what was going > on with the helmet and she would have to call me back. So the next day > she called to tell me that they were holding off to hear if the > insurance was going to cover the helmet. I was so angry, at the initial > scan I told the man that I was paying for the helmet wether the > insurance covered it or not! I feel like since I am a younger mother > they maybe thought I wouldn't pay for it or something. So almost 3 weeks > later they were just sending the scan to have the helmet made. Last > Friday more than a month after the first appointment we got the call > that the helmet was finally in. Gavin was fitted and he made a few > adjustments but he seemed to tolerate it fairly well, he even fell > asleep with it on in the car on the ride home. So today is day 6 and he > just slept with the helmet on all night for the first time, he did ok, > only waking once. I am having a way harder time than I think he is. I > feel awful when he gets really upset and I can tell he is frustrated > with this giant plastic thing on his head. I hate not being able to kiss > his head and snuggle with him without fear of a black eye. I know I > should care what other people say or the stares but it is way harder > than I expected. People can be so rude! I was wonder if anyone could > tell me how they clean their helmet? I was told to use alcohol and water > but it seems that the area of the helmet that touches his forehead is > stinky and that doesn't seem to help. Also it seems that his helmet sits > so low on his face that he can barely see. He has to tip his head back > just to look at things. I was thinking of asking to have it trimmed at > our check up but I don't even know if that is possible. I'm sorry this > post is so long and thanks to anyone who spent the time to read it...I > am feeling very alone and a bit helpless. I'm glad I found this group. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2008 Report Share Posted May 28, 2008 Hi - Welcome. I totally understand your frustration - good for you for taking charge of the situation! I would be concerned with the 4 week delay between cast and fitting as well, 2 weeks should be the limit because younger babies grow so fast that a month can make a big difference in the head shape and the helmet might not fit correctly. However, it doesn't sound like you are overly concerned about the fit, aside from it coming down low on his forehead. Are you comfortable with the way it is fitting overall? If it's not too tight or leaving red marks, hopefully it is fine. I looked at Gavin's pictures (very cute!) and I would say his band comes down as far as my son's band does (you can see pictures of him under Jake W. in Our Plagio Babies/J to compare). Does he have significant forehead bulging? If so, it's important that the band covers the entire forehead all the way down, just over the brow line to hold the prominent side in place. I mentioned it to my therapist at our initial fitting as well, but he didn't shave any of it away and my son has been fine with it (he sometimes almost falls over looking all the way up at planes in the sky, but generally, he's fine). Strangers are sometimes hard to deal with, but it does get better as time goes by. I don't notice people staring very much because I'm usually in my own little world, and sometimes they even catch me off guard and I have to think, " wait, are they talking to me? oh right, the helmet, " because I am just so used to him wearing it. In the end, you're doing what's best for your son, and as long as you know that, who cares what other people have to say? Hang in there and good luck! Jake-20m (tort resolved/rt plagio/DOCBand 15 weeks) Jordan-4 > > Hi my name is and I just joined this group yesterday so I am a > little unsure of how it works.. I have an 8 month old son Gavin who was > diagnosed with plagiocephly around 3 months. The doctors assured us it > would fix itself once he started sitting up, rolling etc...well it > didn't. Around 5 months I asked to see a specialist at Dornbecker > Children's hospital in Portland, Oregon. The specialist said if she were > me should would wait another 6 weeks to see if it improved on its own. > So we left and I began thinking if I wanted anything done about this I > was going to have to take charge. It was almost like they didn't want to > hassle with it. I called back and told them I was going ahead with the > helmet. So we made a appointment for the scan at Hanger. We had the scan > done on a Friday and the helmet was supposed to be done in 2 weeks, so > when 2 and ½ weeks went by and I hadn't heard anything I decided to > call. The receptionist told he that the she didn't know what was going > on with the helmet and she would have to call me back. So the next day > she called to tell me that they were holding off to hear if the > insurance was going to cover the helmet. I was so angry, at the initial > scan I told the man that I was paying for the helmet wether the > insurance covered it or not! I feel like since I am a younger mother > they maybe thought I wouldn't pay for it or something. So almost 3 weeks > later they were just sending the scan to have the helmet made. Last > Friday more than a month after the first appointment we got the call > that the helmet was finally in. Gavin was fitted and he made a few > adjustments but he seemed to tolerate it fairly well, he even fell > asleep with it on in the car on the ride home. So today is day 6 and he > just slept with the helmet on all night for the first time, he did ok, > only waking once. I am having a way harder time than I think he is. I > feel awful when he gets really upset and I can tell he is frustrated > with this giant plastic thing on his head. I hate not being able to kiss > his head and snuggle with him without fear of a black eye. I know I > should care what other people say or the stares but it is way harder > than I expected. People can be so rude! I was wonder if anyone could > tell me how they clean their helmet? I was told to use alcohol and water > but it seems that the area of the helmet that touches his forehead is > stinky and that doesn't seem to help. Also it seems that his helmet sits > so low on his face that he can barely see. He has to tip his head back > just to look at things. I was thinking of asking to have it trimmed at > our check up but I don't even know if that is possible. I'm sorry this > post is so long and thanks to anyone who spent the time to read it...I > am feeling very alone and a bit helpless. I'm glad I found this group. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 We have a PPO Standard Option. Does that help? [sPAM]Re: Re: New to the group.. Hello , I thought I was reading my mind when I read your message. I'm so happy you found this support group, it helped me so much from the beginning. About the stare outside, I put stickers on his helmet "staring is rude". I couldn't help it, after 3 weeks I couldn't stand it anymore & got tired of explaning what I consider my business, not everybody's business at the store... I washed the helmet once with shower gel, it was way to stinky for me even when we clean it twice a day with alcool. The orthotist didn't notice anything, to me it is just plastic & foam so I thought that was ok to do it... I also use the toodler shampoo "burst of watermelon" from l'Oreal Kids, it's really helping too. (my orthotist told me to use that shampoo). Sorry for the spelling mistake, I'm french & still learning English... I just want you to know that you are not alone in this. You will see results really soon & that helps a lot too to get use with the idea of your baby wearing a helmet. Bye-bye, Karine. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 Hi - Blisters are definitely not good. I would maybe give them one chance to fix/adjust the helmet, and if it is causing major red spots or still seems too tight, I would demand for them to make a new one (from a new cast). I really think the culprit is waiting 4 weeks for the helmet to be made. That's really inexcusable on their part. I don't think I've seen a Hanger band that opens in the back before. My son's opens on the right, the side of his flat spot. At Cranial Tech, they make the adjustments by visually assessing the change in his head (they compare it to his beginning head mold) and measuring the circumference of his head to see how much it's grown. I think some other orthos may scan at every visit. Generally though they just shave a little at a time, so that the head has room to grow in that area (they should only shave in the area of the flat spots) and younger babies that grow fast might have to go in sooner for another adjustment if the band gets too snug before the next scheduled appointment. Please let us know what the ortho says today. Good luck! Jake-20m (tort resolved/rt plagio/DOCBand 15 weeks) Jordan-4 > > > > > > Hi my name is and I just joined this group yesterday so I am > > a > > > little unsure of how it works.. I have an 8 month old son Gavin > > who was > > > diagnosed with plagiocephly around 3 months. The doctors assured > > us it > > > would fix itself once he started sitting up, rolling etc...well it > > > didn't. Around 5 months I asked to see a specialist at Dornbecker > > > Children's hospital in Portland, Oregon. The specialist said if > > she were > > > me should would wait another 6 weeks to see if it improved on its > > own. > > > So we left and I began thinking if I wanted anything done about > > this I > > > was going to have to take charge. It was almost like they didn't > > want to > > > hassle with it. I called back and told them I was going ahead with > > the > > > helmet. So we made a appointment for the scan at Hanger. We had > > the scan > > > done on a Friday and the helmet was supposed to be done in 2 > > weeks, so > > > when 2 and ½ weeks went by and I hadn't heard anything I decided > to > > > call. The receptionist told he that the she didn't know what was > > going > > > on with the helmet and she would have to call me back. So the next > > day > > > she called to tell me that they were holding off to hear if the > > > insurance was going to cover the helmet. I was so angry, at the > > initial > > > scan I told the man that I was paying for the helmet wether the > > > insurance covered it or not! I feel like since I am a younger > > mother > > > they maybe thought I wouldn't pay for it or something. So almost 3 > > weeks > > > later they were just sending the scan to have the helmet made. Last > > > Friday more than a month after the first appointment we got the > > call > > > that the helmet was finally in. Gavin was fitted and he made a few > > > adjustments but he seemed to tolerate it fairly well, he even fell > > > asleep with it on in the car on the ride home. So today is day 6 > > and he > > > just slept with the helmet on all night for the first time, he did > > ok, > > > only waking once. I am having a way harder time than I think he > > is. I > > > feel awful when he gets really upset and I can tell he is > > frustrated > > > with this giant plastic thing on his head. I hate not being able > > to kiss > > > his head and snuggle with him without fear of a black eye. I know I > > > should care what other people say or the stares but it is way > > harder > > > than I expected. People can be so rude! I was wonder if anyone > > could > > > tell me how they clean their helmet? I was told to use alcohol and > > water > > > but it seems that the area of the helmet that touches his forehead > > is > > > stinky and that doesn't seem to help. Also it seems that his > > helmet sits > > > so low on his face that he can barely see. He has to tip his head > > back > > > just to look at things. I was thinking of asking to have it > > trimmed at > > > our check up but I don't even know if that is possible. I'm sorry > > this > > > post is so long and thanks to anyone who spent the time to read > > it...I > > > am feeling very alone and a bit helpless. I'm glad I found this > > group. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 I posted a few pics in the " Gavin " folder.. I moved our appointment up today so we go at noon. Gavin woke this morning will all the skin missing between his eyes it looks comparable to when you fall down and skin your knee. I just feel sick about it. I am taking all the advice from everyone and going with a list of questions and concerns. I hope something can be done to correct the helmet because I feel as if I am torturing my baby. Someone said to me yesterday I can't help but stare at your baby with that thing on his head, I said THANK YOU we get that a lot! I am trying to stay positive and not let peoples comments get to me. All I care about at this point is making this a more comfortable experience for Gavin. I will let everyone know what happens at the appointment. Gavin-8m (plagio/ Hanger helmet 1 week) > > > > > > > > Hi my name is and I just joined this group yesterday so > I am > > > a > > > > little unsure of how it works.. I have an 8 month old son Gavin > > > who was > > > > diagnosed with plagiocephly around 3 months. The doctors > assured > > > us it > > > > would fix itself once he started sitting up, rolling > etc...well it > > > > didn't. Around 5 months I asked to see a specialist at > Dornbecker > > > > Children's hospital in Portland, Oregon. The specialist said if > > > she were > > > > me should would wait another 6 weeks to see if it improved on > its > > > own. > > > > So we left and I began thinking if I wanted anything done about > > > this I > > > > was going to have to take charge. It was almost like they > didn't > > > want to > > > > hassle with it. I called back and told them I was going ahead > with > > > the > > > > helmet. So we made a appointment for the scan at Hanger. We had > > > the scan > > > > done on a Friday and the helmet was supposed to be done in 2 > > > weeks, so > > > > when 2 and ½ weeks went by and I hadn't heard anything I > decided > > to > > > > call. The receptionist told he that the she didn't know what > was > > > going > > > > on with the helmet and she would have to call me back. So the > next > > > day > > > > she called to tell me that they were holding off to hear if the > > > > insurance was going to cover the helmet. I was so angry, at the > > > initial > > > > scan I told the man that I was paying for the helmet wether the > > > > insurance covered it or not! I feel like since I am a younger > > > mother > > > > they maybe thought I wouldn't pay for it or something. So > almost 3 > > > weeks > > > > later they were just sending the scan to have the helmet made. > Last > > > > Friday more than a month after the first appointment we got the > > > call > > > > that the helmet was finally in. Gavin was fitted and he made a > few > > > > adjustments but he seemed to tolerate it fairly well, he even > fell > > > > asleep with it on in the car on the ride home. So today is day > 6 > > > and he > > > > just slept with the helmet on all night for the first time, he > did > > > ok, > > > > only waking once. I am having a way harder time than I think he > > > is. I > > > > feel awful when he gets really upset and I can tell he is > > > frustrated > > > > with this giant plastic thing on his head. I hate not being > able > > > to kiss > > > > his head and snuggle with him without fear of a black eye. I > know I > > > > should care what other people say or the stares but it is way > > > harder > > > > than I expected. People can be so rude! I was wonder if anyone > > > could > > > > tell me how they clean their helmet? I was told to use alcohol > and > > > water > > > > but it seems that the area of the helmet that touches his > forehead > > > is > > > > stinky and that doesn't seem to help. Also it seems that his > > > helmet sits > > > > so low on his face that he can barely see. He has to tip his > head > > > back > > > > just to look at things. I was thinking of asking to have it > > > trimmed at > > > > our check up but I don't even know if that is possible. I'm > sorry > > > this > > > > post is so long and thanks to anyone who spent the time to read > > > it...I > > > > am feeling very alone and a bit helpless. I'm glad I found this > > > group. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 , i just read your post and almost cried! I am so sorry that happened! We had a similiar experience and I felt so guilty for a long time. It took me almost a month to get over it. Much longer than it did ! His sweet little head will heal, and in the end you'll surely be glad you did all you could do to reshape his little noggin! Try hard not to take it personally. It was not your fault. There was no way for you to know that would happen. Most babies fuss with a new helmet, so don't feel guilty! You are not torturing your child, you're helping him. You're a great mom to be so concerned and I'm sure they'll get it fixed (or have gotten it fixed rather). Let us know what happens. Hang in there! 9mo, tort resolved, lft plagio, STARband 7wks Conner 2yrs NC USA > > > > > > > > > > Hi my name is and I just joined this group yesterday so > > I am > > > > a > > > > > little unsure of how it works.. I have an 8 month old son Gavin > > > > who was > > > > > diagnosed with plagiocephly around 3 months. The doctors > > assured > > > > us it > > > > > would fix itself once he started sitting up, rolling > > etc...well it > > > > > didn't. Around 5 months I asked to see a specialist at > > Dornbecker > > > > > Children's hospital in Portland, Oregon. The specialist said if > > > > she were > > > > > me should would wait another 6 weeks to see if it improved on > > its > > > > own. > > > > > So we left and I began thinking if I wanted anything done about > > > > this I > > > > > was going to have to take charge. It was almost like they > > didn't > > > > want to > > > > > hassle with it. I called back and told them I was going ahead > > with > > > > the > > > > > helmet. So we made a appointment for the scan at Hanger. We had > > > > the scan > > > > > done on a Friday and the helmet was supposed to be done in 2 > > > > weeks, so > > > > > when 2 and ½ weeks went by and I hadn't heard anything I > > decided > > > to > > > > > call. The receptionist told he that the she didn't know what > > was > > > > going > > > > > on with the helmet and she would have to call me back. So the > > next > > > > day > > > > > she called to tell me that they were holding off to hear if the > > > > > insurance was going to cover the helmet. I was so angry, at the > > > > initial > > > > > scan I told the man that I was paying for the helmet wether the > > > > > insurance covered it or not! I feel like since I am a younger > > > > mother > > > > > they maybe thought I wouldn't pay for it or something. So > > almost 3 > > > > weeks > > > > > later they were just sending the scan to have the helmet made. > > Last > > > > > Friday more than a month after the first appointment we got the > > > > call > > > > > that the helmet was finally in. Gavin was fitted and he made a > > few > > > > > adjustments but he seemed to tolerate it fairly well, he even > > fell > > > > > asleep with it on in the car on the ride home. So today is day > > 6 > > > > and he > > > > > just slept with the helmet on all night for the first time, he > > did > > > > ok, > > > > > only waking once. I am having a way harder time than I think he > > > > is. I > > > > > feel awful when he gets really upset and I can tell he is > > > > frustrated > > > > > with this giant plastic thing on his head. I hate not being > > able > > > > to kiss > > > > > his head and snuggle with him without fear of a black eye. I > > know I > > > > > should care what other people say or the stares but it is way > > > > harder > > > > > than I expected. People can be so rude! I was wonder if anyone > > > > could > > > > > tell me how they clean their helmet? I was told to use alcohol > > and > > > > water > > > > > but it seems that the area of the helmet that touches his > > forehead > > > > is > > > > > stinky and that doesn't seem to help. Also it seems that his > > > > helmet sits > > > > > so low on his face that he can barely see. He has to tip his > > head > > > > back > > > > > just to look at things. I was thinking of asking to have it > > > > trimmed at > > > > > our check up but I don't even know if that is possible. I'm > > sorry > > > > this > > > > > post is so long and thanks to anyone who spent the time to read > > > > it...I > > > > > am feeling very alone and a bit helpless. I'm glad I found this > > > > group. > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.