Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Hi there, I was the relative that thought medications was terrible. After all he was only 4 when they started him on meds. Boy, am I a believer now. What a difference. Xander is on Risperdal for the rages and it has been the single best thing so far. It has for the most part stopped the rages. He still gets frustrated but my daughter no longer has to put him in his room and hold the door shut to keep him from beating his baby brother. I think you should try the medication. If the relatives are not nearby, do not even tell them. You really need to see the results of the medication in order to understand the need for them. If they are so far away, they can not see the day to day difference, I would not even bother telling them. Xander will also be 6 in February. Looks like we may be here together for awhile. Xander has lots of the same problems. Currently the insurance my daughter has will not allow for a full neurological evaluation. He is being treated by a psychiatrist who insists only the bi polar needs to be treated and the asperger is just a side problem. I totally disagree. Hopefully, my son in law will get the new job he applied for and the insurance will change. Then maybe Xander can receive the full neurological evaluation. He is scheduled to be tested at school the first of Feb also. Becky Nana to Brad (6, ADHD on Concertra), Xander (5 Bi-Polar and Asperger, on Depokate and Risperdal, and (2 born with a tumor and currently being tested for a reoccurence) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 I'm I'm very new to this website and very new to " Apraxia " but my daughter , 22 months was just diagnosed a month ago, sounds just like your son. She is very athletic and very happy, but hating trying to talk! She actually got very frustrated when we tried to push her. I would highly recommend trying the EFA's. You need to read all about them,I liked " The LCP Solution " book and you should talk to your pediatrician also, but please consider trying them. My daughter has made great changes in just 3 weeks. She still has some very serious problems, but her willingness to try is unbelievable. I also think she is even happier then before, it's like the lightbulb has turned on upstairs and she knows it. Good Luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 > Any comments appreciated > All I can really add is take comfort that your child has a diagnosis that someone is researching. My son has a genetic abnormality that has no name and no one is researching it. Just knowing you are not alone helps. Good luck to you, Land Virginia Beach, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 Lynn - so glad you have a diagnosis even if it doesn't change too much (except that funding thing - maybe there's even a foundation for the syndrome that can offer more dollars for school stuff?). It's very frustrating to be in the position of having doctor after doctor tell you that it (a child's delays or issues) are " just " there. We went through the geneticist route and got no answers. The drs all say Josh's issues were the result of a prenatal " incident " whatever that means (he was adopted and we have no clue what might have happened). However, Josh's SLP is now suggesting that, in addition to the apraxia, that he has dysarthria. In looking up dysarthria on some websites, one possible cause is infection either prenatally or as infant - Josh had sepsis when he was born and we came close to losing him shortly after we brought him home at age 4 days. We were told at the time that the sepsis would not have any long-term effects but now I'm wondering (again) if there's a correlation. It seems the questions keep coming. Glad your's appear to have been answered. Sherry /Lynn Hergott <Hergs@...> wrote: I just wanted to let everyone know that my daughter Kaylin has a new diagnosis and I was wondering if anyone else has this or has heard of it. She had a genetist appt. and they have finally diagnosed her with Floating Harbour Syndrome. This is a very rare syndrome only about 30 kids in the whole world have it. The Drs having been disscussing this syndrome for around 2 yrs on whether or not Kaylin has this, but after this appt. they are convinced. And so am I. There is no blood test to diagnose this syndrome but it goes by charcteristics in which Kaylin has most of them. They are speech delay (signifacant), bone delay, short statute, thin upper lip, deep set eyes, long eyelashes, among other things. The genetisits mailed me some infor on it and there is a picture of another little girl and it looks just like my daughter. There is nothing you can do except treat the symptoms in which we already are. The good that comes out of this diagnoses is that now the schools will get more funding in order to help her more. She is doing really well and is moving on to 1st grade next year in the regulare school. I am only taking 1 year at a time she may have to go back to the special school at some time but for now she will be attending regular 1st grade. Thanks for Listening, Lynn Any comments appreciated Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Hi there Glad you found us- there really is a wealth of support and advice here so you should get some good help. Are you doing repositioning at the moment? I know it is pretty hard with a 7 month old- how can you control how they sleep etc, but at least making sure little time is spent on the flat spot would help. I found it pretty difficult with my daughter once she started moving around the cot- as she had severe plagio, we were happy to go ahead and get her a helmet. If you are relatively happy with your son's head shape and think it is relatively mild, you might not want to go the whole orthotics route, but it is certainly worth monitoring it to see it if it gets any worse. If you take photos from above with the ears in view every week, then this will help you judge. I found it helps to do this in the bath as the hair is wet and you can really see what is going on!! As for worsening or improving, the problem is no-one really knows, which is why we all have to second-guess this a little bit and think about the future if nothing changes. If we knew it would round out on its own or get worse, we'd always know what to do, but I think plagio is a little unpredictable, in that it does improve for some and not for others. At least if you are halting it in it's tracks by repo and monitoring it for changes, you will be doing all you can to help. If you feel after a set period of time (e.g. another month, or two) that is is worsening, why not get a consultation with a local orthotics company (are you in the US or UK?)- they are pretty honest and in my experience in the UK with Dr Blecher, he won't give a baby a helmet unless he thinks it is necessary (i.e. worse than mild). It is good to get a second opinion- it is hard to judge the severity yourself sometimes. Good luck- let us know a bit more about where you are and what you have been doing so far, and let's see if we can help. Hannah (mum to Lucia, London, UK) Plagio, passive helmet, 4/7/04 -- In Plagiocephaly , " jennw2503 " <jennw2503@y...> wrote: > Hi, I am new to this group. My son is 7 months old and was just > diagnosed with plagiocephaly. It appears pretty mild, but I am just > trying to educate myself as much as possible. I am concerned about > it getting worse if we choose not to try any orthotics. Any advice? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Hi and welcome! I'm glad that you found this site. There is so much information in the files/links section for you to read. you are wise to do your research. I think there are many products you could buy to keep your child off of his/her flat spot. Good luck and let us know if you can't find the answer to anything. Sue Colin F. 10 mos. StarBand 6/29 Buffalo, NY --- In Plagiocephaly , " jennw2503 " <jennw2503@y...> wrote: > Hi, I am new to this group. My son is 7 months old and was just > diagnosed with plagiocephaly. It appears pretty mild, but I am just > trying to educate myself as much as possible. I am concerned about > it getting worse if we choose not to try any orthotics. Any advice? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Hi, Welcome to the group. Our repositioning moderator will reply to you as soon as she gets a chance. --- In Plagiocephaly , " jennw2503 " <jennw2503@y...> wrote: > Hi, I am new to this group. My son is 7 months old and was just > diagnosed with plagiocephaly. It appears pretty mild, but I am just > trying to educate myself as much as possible. I am concerned about > it getting worse if we choose not to try any orthotics. Any advice? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Hello, and welcome to our group. Like Dustie already said there is tons of information on repo in our file section. When you have some time just browse through it, and see what you can make work for you. Also when you get a chance you could post some pictures of your son. We always like to look at cutie pics Sandy Willow's Mom torticollis resolved Cranio Germany Grad --- In Plagiocephaly , " jennw2503 " <jennw2503@y...> wrote: > Hi, I am new to this group. My son is 7 months old and was just > diagnosed with plagiocephaly. It appears pretty mild, but I am just > trying to educate myself as much as possible. I am concerned about > it getting worse if we choose not to try any orthotics. Any advice? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2007 Report Share Posted November 5, 2007 WELCOME! 1st I want to say - YOu are very lucky to have drs who are so pro-active! SOme of us have had to really fight to get treatment for our babies - How wonderful that your drs saw the issue and took it seriously. Also, the band is really not that bad. My baby actually didn't roll over UNTIL she got her band at 6.5 months. I understand the shock of it all since you didn't see the problem to begin with - give it some time - and do alot of research. I think knowledge and time will help you get more used to it. HANG IN THERE!!! Jen and Luli - 23 months Left tort - Right Plagio - Hanger Band Grad - CA http://www.babiesonline.com/babies/j/jens5th/ New diagnosis I have a five month old son that has been diagnosed with plagio and tort. At his 2 month check-up the doctor noticed that he held his head to the left and mentioned torticollis and that he may possibly need a helmet for the flat spot on his head. His ears are misaligned too. I had not even noticed any of this. I have spent the past three months repositioning and taking him to PT, so when we went back to the Plastic Surgeon today I had high hopes that he was improving. I was devestated to learn that his head shape hasn't changed at all and he gave us a prescription for a helmet. I have been crying all morning and can't believe that I may have to put him through the trauma of a helmet. I have looked at the photos of babies in helmets and can't imagine my little boy's face sticking out of one. I can't imagine putting my son through all of this, yet I also don't want him to look deformed for his whole life. He is a very easy going boy who sleeps very well and is always happy. I am terrified that this experience will be a terrible one and I don't know how he will ever learn to crawl, roll over, sit up, etc. with a helmet on, not to mention sleep with it. Christmas is coming and we are traveling across the country, and I don't want the first and only impression of our family members to be in a helmet. I don't know how to deal with the stares of strangers, or how his daycare provider will be able to handle this. Basically I havn't been able to think of anything else or stop crying every time I look at him. I feel guilty because I know there are much worse things that he could have. I should feel grateful that he is healthy. I don't know if there is anything I can do, but does anyone have any advice for how I can deal with this? Email and AIM finally together. You've gotta check out free AOL Mail! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2007 Report Share Posted November 5, 2007 Every parent prior to banding is nervous and would rather not band. BUT let me tell you it is NOT traumatic for the baby at all. Yes, there may be some adjusting (but for most babies it doesn't take that long). The only real adjustment was adding something new to our routine and figuring out pajamas the first 2 nights as my son was too hot or too cold BUT by night 3 he was backing to sleeping 11-12 hours straight. The band is extreemly light (the DOC band is less than 6 oz.). My son learned to roll and army crawl with his band on. A band would NOT be FDA approved if it prevented children from learning their milestones. Our son was the SAME happy baby the entire time banded! Just like you, our ped. told us at 2 months that my son's head was flat on the left side...I hadn't noticed it. We repositioned until we finally got the band at 7.5 months. My son was measured at CT at 3 months and 6.5 or 7 (can't remember) and the measurements were the EXACT same (just like your child's). As far as daycare workers, I am sure they will be supportive. I am sure your family will be supportive too. You can always explain the risks of not fixing his headshape besides his head being deformed looking (i.e. TMJ, headaches, vision issues, bike helmets not fitting right, etc.) Your little one will pick up on you being upset about the helmet. I highly recommend making yourself " okay with it " or not letting your little one see how upset about it you are. OR you could choose NOT to band but to me if this was my child that would NOT be an option for the risks involved of not banding plus I was not happy with our little guys headshape. Your little one won't even remember this time (other than you showing pics or showing him his headsicle, etc.) Good luck in your decision. Hang in there...the band will become part of your routine in no time. PS: Decorate the band and make it cute! Your son will look so cute in it that he'll look 'funny' when he graduates and doesn't have a band anymore. I would band sooner than later as the results will be better and the time in the band will be shorter. > > I have a five month old son that has been diagnosed with plagio and > tort. At his 2 month check-up the doctor noticed that he held his > head to the left and mentioned torticollis and that he may possibly > need a helmet for the flat spot on his head. His ears are > misaligned too. I had not even noticed any of this. I have spent > the past three months repositioning and taking him to PT, so when we > went back to the Plastic Surgeon today I had high hopes that he was > improving. I was devestated to learn that his head shape hasn't > changed at all and he gave us a prescription for a helmet. I have > been crying all morning and can't believe that I may have to put him > through the trauma of a helmet. I have looked at the photos of > babies in helmets and can't imagine my little boy's face sticking > out of one. I can't imagine putting my son through all of this, yet > I also don't want him to look deformed for his whole life. He is a > very easy going boy who sleeps very well and is always happy. I am > terrified that this experience will be a terrible one and I don't > know how he will ever learn to crawl, roll over, sit up, etc. with a > helmet on, not to mention sleep with it. Christmas is coming and we > are traveling across the country, and I don't want the first and > only impression of our family members to be in a helmet. I don't > know how to deal with the stares of strangers, or how his daycare > provider will be able to handle this. Basically I havn't been able > to think of anything else or stop crying every time I look at him. > I feel guilty because I know there are much worse things that he > could have. I should feel grateful that he is healthy. I don't > know if there is anything I can do, but does anyone have any advice > for how I can deal with this? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2007 Report Share Posted November 5, 2007 Don't worry!!! It won't be traumatic for him. My dd wore a band from age 5 to 10 mo and learned to sit up, crawl, and walk all while wearing a helmet. She did everything on time or early, and it didn't slow her down in anything. Sometimes kids with tort have slight delays, but the helmet shouldn't be a factor - my daughter had brachy (flat in back) with no tort. You'll be surprised how easy the adjustment is. My daughter never slept well and that was a struggle for us. I guess I should say she never slept alone well, so I've semi-reluctantly been co-sleeping with her. Most babies adjust very quickly, and sleeping may take a little longer, but within a week or two most babies are back to normal. For me the hardest part at first was going out with her (afraid of stares) but even that wasn't too bad, and I quickly forgot her band was there. I saw a lot of improvement in the first two weeks - so that makes it tons easier. You quickly KNOW it is working and will be amazed you can see changes week by week. Also for your son's sake PRETEND you're okay with it. Kids pick up on our emotions, so it will be best for him if you stay positive. I know it is hard, but it really will be much easier than you think. take care. -christine sydney 22 mo starband grad > > I have a five month old son that has been diagnosed with plagio and > tort. At his 2 month check-up the doctor noticed that he held his > head to the left and mentioned torticollis and that he may possibly > need a helmet for the flat spot on his head. His ears are > misaligned too. I had not even noticed any of this. I have spent > the past three months repositioning and taking him to PT, so when we > went back to the Plastic Surgeon today I had high hopes that he was > improving. I was devestated to learn that his head shape hasn't > changed at all and he gave us a prescription for a helmet. I have > been crying all morning and can't believe that I may have to put him > through the trauma of a helmet. I have looked at the photos of > babies in helmets and can't imagine my little boy's face sticking > out of one. I can't imagine putting my son through all of this, yet > I also don't want him to look deformed for his whole life. He is a > very easy going boy who sleeps very well and is always happy. I am > terrified that this experience will be a terrible one and I don't > know how he will ever learn to crawl, roll over, sit up, etc. with a > helmet on, not to mention sleep with it. Christmas is coming and we > are traveling across the country, and I don't want the first and > only impression of our family members to be in a helmet. I don't > know how to deal with the stares of strangers, or how his daycare > provider will be able to handle this. Basically I havn't been able > to think of anything else or stop crying every time I look at him. > I feel guilty because I know there are much worse things that he > could have. I should feel grateful that he is healthy. I don't > know if there is anything I can do, but does anyone have any advice > for how I can deal with this? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2007 Report Share Posted November 5, 2007 our son was diagnosed at 2 months with plagiocephaly and torticolis i we hadnt really noticed till my mother said something about it and looked it up on-line. so i started doing the exorcises for tort and now at 5months its almost gone. we haven't seen to much improvement in his head shape but he goes for his final fit of his helmet soon. all in all he has been happy through most of the process (the ct scan to rule out craniosytosis wasn't fun but we got through it) which is all that matters to us is Dalton being happy and having the best possible start to life. your on the right track and have an early start. so ask questions and learn all you can so you can explain to others. from the sounds of it you have a good doctor and are already on the way to making it better. Besides now i have something i want to decorate for Christmas I'm thinking Rudolph. Best wishes hows his torticollis doing? Jer New diagnosis I have a five month old son that has been diagnosed with plagio and tort. At his 2 month check-up the doctor noticed that he held his head to the left and mentioned torticollis and that he may possibly need a helmet for the flat spot on his head. His ears are misaligned too. I had not even noticed any of this. I have spent the past three months repositioning and taking him to PT, so when we went back to the Plastic Surgeon today I had high hopes that he was improving. I was devestated to learn that his head shape hasn't changed at all and he gave us a prescription for a helmet. I have been crying all morning and can't believe that I may have to put him through the trauma of a helmet. I have looked at the photos of babies in helmets and can't imagine my little boy's face sticking out of one. I can't imagine putting my son through all of this, yet I also don't want him to look deformed for his whole life. He is a very easy going boy who sleeps very well and is always happy. I am terrified that this experience will be a terrible one and I don't know how he will ever learn to crawl, roll over, sit up, etc. with a helmet on, not to mention sleep with it. Christmas is coming and we are traveling across the country, and I don't want the first and only impression of our family members to be in a helmet. I don't know how to deal with the stares of strangers, or how his daycare provider will be able to handle this. Basically I havn't been able to think of anything else or stop crying every time I look at him. I feel guilty because I know there are much worse things that he could have. I should feel grateful that he is healthy. I don't know if there is anything I can do, but does anyone have any advice for how I can deal with this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2007 Report Share Posted November 5, 2007 It will be okay- for all of you! My son had to get the Starband helmet when he turned six months. Prior to that, I was upset and in a deep funk. From the moment our pediatrician said, "torticollis" and "plagiocephaly", I felt so guilty like it was all my fault. A couple of things to help think of (and make you feel better) 1. The boy you love will look cute with or without a helmet. You can kiss every inch of his face that isn't covering the helmet. 2. You have to be smiling and strong for him. Kids feel what we're feeling. When someone looks at him questioningly or oddly, kiss his face and make him feel happy. 3. He will still learn to sit up, crawl and walk. Thank goodness for the helmet when he starts moving! There were so many times when I was grateful for the helmet. 4. Sleep will be different, but better. Most of our plagio babes learn to sleep on their stomach- which is good for when the helmet comes off! Just keep him in a onesie or t-shirt and socks the first week or so. 5. This is personal and to each own- we took the helmet off for a few minutes if he was introduced to new family and then put it on with them around and made a big show of how great it was. We also did take it off for pictures and some events (but quickly put it back on). Use your best judgement- if you are miserable wishing it was off for a half hour event or a quick trip somewhere- take it off. 6. Daycares really work to help with this- if you have a good one! I took a day off to show his teachers how his helmet worked (the paperwork, diagrams, etc), how to change his clothes without taking it off (or how to gently remove and reapply it if they needed to), and to just have fun with him. 7. Make sure you stop blaming yourself! You are awesome for doing this for him and he will be so thankful for it! If you need anything, feel free to email me. I went through the same thing and was really depressed for about two months- it was awful! I will help you any way I can. Laurel, mom to Drew (10 mos. yesterday) starband graduate on October 2nd, 2007! Laurel A. Garner Chattahoochee Elementary Fifth Grade You're happiest while you're making the greatest contribution. F. Kennedy New diagnosis I have a five month old son that has been diagnosed with plagio and tort. At his 2 month check-up the doctor noticed that he held his head to the left and mentioned torticollis and that he may possibly need a helmet for the flat spot on his head. His ears are misaligned too. I had not even noticed any of this. I have spent the past three months repositioning and taking him to PT, so when we went back to the Plastic Surgeon today I had high hopes that he was improving. I was devestated to learn that his head shape hasn't changed at all and he gave us a prescription for a helmet. I have been crying all morning and can't believe that I may have to put him through the trauma of a helmet. I have looked at the photos of babies in helmets and can't imagine my little boy's face sticking out of one. I can't imagine putting my son through all of this, yet I also don't want him to look deformed for his whole life. He is a very easy going boy who sleeps very well and is always happy. I am terrified that this experience will be a terrible one and I don't know how he will ever learn to crawl, roll over, sit up, etc. with a helmet on, not to mention sleep with it. Christmas is coming and we are traveling across the country, and I don't want the first and only impression of our family members to be in a helmet. I don't know how to deal with the stares of strangers, or how his daycare provider will be able to handle this. Basically I havn't been able to think of anything else or stop crying every time I look at him. I feel guilty because I know there are much worse things that he could have. I should feel grateful that he is healthy. I don't know if there is anything I can do, but does anyone have any advice for how I can deal with this?__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2007 Report Share Posted November 5, 2007 He will adjust to the helmet faster than you can ever imagine. It is really, really not a big deal! Every baby is different, but my son got his helmet just before 6 months, and he just accepted it without any fussiness at all. Chances are, if your son is an easy going baby he is going to be easy going about having a band on.  As for what other people think, that only affects you and this all depends on your attitude. If you think that the helmet is awful, then you will convey that to your family and friends, and that will be their impression too. And your son will read into our emotions and react the same way – they are clever little babies! Just be positive that you are doing the best thing for your son.  Your confidence that you are doing the best thing for your son will have a real impact on how other people see the helmet. I have had a lot of questions, and surprisingly most people say something like, “I wish I would have known about that when my (son/niece/godson/friend’s daughter) was a baby, because he/she has a really flat head.  At this age, it may bother you as a mother but your son can be oblivious to that fact. If you don’t try now to give him a more normal head shape, then he could be the one dealing with the trauma of a an odd looking head for his whole life. And you are so lucky that you have a pediatrician that is recommending it – so many of us had doctor’s that said it was cosmetic and not to worry about it, or told us our babies would grow out if it.  As many parents on this site can attest, children learn to crawl, sit, walk, play, etc all at a normal pace – so you can take that off of your list of worries right now.  And for the holidays, you can, of course take the helmet off for brief periods so everyone can see his beautiful little head and also for pictures! From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of bjo706 Sent: Tuesday, November 06, 2007 4:51 AM Plagiocephaly Subject: New diagnosis I have a five month old son that has been diagnosed with plagio and tort. At his 2 month check-up the doctor noticed that he held his head to the left and mentioned torticollis and that he may possibly need a helmet for the flat spot on his head. His ears are misaligned too. I had not even noticed any of this. I have spent the past three months repositioning and taking him to PT, so when we went back to the Plastic Surgeon today I had high hopes that he was improving. I was devestated to learn that his head shape hasn't changed at all and he gave us a prescription for a helmet. I have been crying all morning and can't believe that I may have to put him through the trauma of a helmet. I have looked at the photos of babies in helmets and can't imagine my little boy's face sticking out of one. I can't imagine putting my son through all of this, yet I also don't want him to look deformed for his whole life. He is a very easy going boy who sleeps very well and is always happy. I am terrified that this experience will be a terrible one and I don't know how he will ever learn to crawl, roll over, sit up, etc. with a helmet on, not to mention sleep with it. Christmas is coming and we are traveling across the country, and I don't want the first and only impression of our family members to be in a helmet. I don't know how to deal with the stares of strangers, or how his daycare provider will be able to handle this. Basically I havn't been able to think of anything else or stop crying every time I look at him. I feel guilty because I know there are much worse things that he could have. I should feel grateful that he is healthy. I don't know if there is anything I can do, but does anyone have any advice for how I can deal with this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2007 Report Share Posted November 5, 2007 My son is 6.5 months old and got his DOC band today. I was so worried that he would be uncomfortable and the band would make him miserable. He had colic and was very fussy for the first 4 months. He's been great for the last two and my greatest fear was the band would make him unhappy again. I'm keeping my fingers crossed, but he hasn't cried once since they put it on him today at 12:30. He's eating, sleeping and best of all smiling. This is such a relief for both me and my husband. You will be doing something good for him. Keep in mind that it is only temporary and in the scheme of things such a short period of time. Feel free to email with any questions. This is all new to us too...we are just taking things one day at a time and trying to stay positive. Hang in there!! -----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of HancockSent: Monday, November 05, 2007 5:56 PMPlagiocephaly Subject: RE: New diagnosis He will adjust to the helmet faster than you can ever imagine. It is really, really not a big deal! Every baby is different, but my son got his helmet just before 6 months, and he just accepted it without any fussiness at all. Chances are, if your son is an easy going baby he is going to be easy going about having a band on. As for what other people think, that only affects you and this all depends on your attitude. If you think that the helmet is awful, then you will convey that to your family and friends, and that will be their impression too. And your son will read into our emotions and react the same way – they are clever little babies! Just be positive that you are doing the best thing for your son. Your confidence that you are doing the best thing for your son will have a real impact on how other people see the helmet. I have had a lot of questions, and surprisingly most people say something like, “I wish I would have known about that when my (son/niece/godson/friend’s daughter) was a baby, because he/she has a really flat head. At this age, it may bother you as a mother but your son can be oblivious to that fact. If you don’t try now to give him a more normal head shape, then he could be the one dealing with the trauma of a an odd looking head for his whole life. And you are so lucky that you have a pediatrician that is recommending it – so many of us had doctor’s that said it was cosmetic and not to worry about it, or told us our babies would grow out if it. As many parents on this site can attest, children learn to crawl, sit, walk, play, etc all at a normal pace – so you can take that off of your list of worries right now. And for the holidays, you can, of course take the helmet off for brief periods so everyone can see his beautiful little head and also for pictures! From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of bjo706Sent: Tuesday, November 06, 2007 4:51 AMPlagiocephaly Subject: New diagnosis I have a five month old son that has been diagnosed with plagio and tort. At his 2 month check-up the doctor noticed that he held his head to the left and mentioned torticollis and that he may possibly need a helmet for the flat spot on his head. His ears are misaligned too. I had not even noticed any of this. I have spent the past three months repositioning and taking him to PT, so when we went back to the Plastic Surgeon today I had high hopes that he was improving. I was devestated to learn that his head shape hasn't changed at all and he gave us a prescription for a helmet. I have been crying all morning and can't believe that I may have to put him through the trauma of a helmet. I have looked at the photos of babies in helmets and can't imagine my little boy's face sticking out of one. I can't imagine putting my son through all of this, yet I also don't want him to look deformed for his whole life. He is a very easy going boy who sleeps very well and is always happy. I am terrified that this experience will be a terrible one and I don't know how he will ever learn to crawl, roll over, sit up, etc. with a helmet on, not to mention sleep with it. Christmas is coming and we are traveling across the country, and I don't want the first and only impression of our family members to be in a helmet. I don't know how to deal with the stares of strangers, or how his daycare provider will be able to handle this. Basically I havn't been able to think of anything else or stop crying every time I look at him. I feel guilty because I know there are much worse things that he could have. I should feel grateful that he is healthy. I don't know if there is anything I can do, but does anyone have any advice for how I can deal with this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2007 Report Share Posted November 5, 2007 The helmet was a life saver - my baby would look like she had half a head - I am NOT kidding - if she had not been helmeted at 6 mo. She has not improved all the way - but is much better - it also has helped the tort from making her darling little face more asymmetric. The tort is the culprit and the true battle - get him into pt right away. We are still in pt and still battling tort after 6 long months and just praying it will go away - but it still keeps coming back. We are almost out of the helmet and I am scared of regression. ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2007 Report Share Posted November 6, 2007 Thanks for all of your kind words. We have an appointment next Wednesday to be scanned and then the helmet should arrive two weeks after that. I hope that it will all go well, but I have read just enough of the stories on this site of kids who didn't adjust well to make me nervous. He is continuing PT for tort, but he has learned how to stiffen up his neck whenever you touch his head, which makes it very hard to do his exercises. The PT keeps on coming up with new positions, but after a week or so he has figured them out and is stiffening up his neck again. He can be stubborn I guess. I am not sure what to do about dressing him at night. I live in MN and it is already really cold out. OUr house tends to be around 67 degrees, so I don't know if I have to worry about him being too warm. He usually wears a warm sleeper and sleep sack, but will he be really hot with the helmet? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2007 Report Share Posted November 6, 2007 Hi, I can completely relate to what your thoughts are about the holidays approaching and caring what relatives think. My daughter will soon have a STAR band and I was all upset that her aunt and uncle have to meet her in her in a helmet for the first time (at Christmas time). But, so what. They had 5 months to see her prior to this and its for the best for Hallie. Hallie is completely easy going and a great sleeper. So, I have decided I am not going to worry in advance about something I cannot control. My husband and I have done the best we can to reposition her and she still has a flat head. So, this is for her. I appreciate what Staci had to say that your attitude towards others will effect others' attitude. This group is wonderful. I'll keep the group updated as to our experience as well. We go this week to be fitted. take care!! Barbie:)Staci Hyde <shyde@...> wrote: My son is 6.5 months old and got his DOC band today. I was so worried that he would be uncomfortable and the band would make him miserable. He had colic and was very fussy for the first 4 months. He's been great for the last two and my greatest fear was the band would make him unhappy again. I'm keeping my fingers crossed, but he hasn't cried once since they put it on him today at 12:30. He's eating, sleeping and best of all smiling. This is such a relief for both me and my husband. You will be doing something good for him. Keep in mind that it is only temporary and in the scheme of things such a short period of time. Feel free to email with any questions. This is all new to us too...we are just taking things one day at a time and trying to stay positive. Hang in there!! -----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of HancockSent: Monday, November 05, 2007 5:56 PMPlagiocephaly Subject: RE: New diagnosis He will adjust to the helmet faster than you can ever imagine. It is really, really not a big deal! Every baby is different, but my son got his helmet just before 6 months, and he just accepted it without any fussiness at all. Chances are, if your son is an easy going baby he is going to be easy going about having a band on. As for what other people think, that only affects you and this all depends on your attitude. If you think that the helmet is awful, then you will convey that to your family and friends, and that will be their impression too. And your son will read into our emotions and react the same way – they are clever little babies! Just be positive that you are doing the best thing for your son. Your confidence that you are doing the best thing for your son will have a real impact on how other people see the helmet. I have had a lot of questions, and surprisingly most people say something like, “I wish I would have known about that when my (son/niece/godson/friend’s daughter) was a baby, because he/she has a really flat head. At this age, it may bother you as a mother but your son can be oblivious to that fact. If you don’t try now to give him a more normal head shape, then he could be the one dealing with the trauma of a an odd looking head for his whole life. And you are so lucky that you have a pediatrician that is recommending it – so many of us had doctor’s that said it was cosmetic and not to worry about it, or told us our babies would grow out if it. As many parents on this site can attest, children learn to crawl, sit, walk, play, etc all at a normal pace – so you can take that off of your list of worries right now. And for the holidays, you can, of course take the helmet off for brief periods so everyone can see his beautiful little head and also for pictures! From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of bjo706Sent: Tuesday, November 06, 2007 4:51 AMPlagiocephaly Subject: New diagnosis I have a five month old son that has been diagnosed with plagio and tort. At his 2 month check-up the doctor noticed that he held his head to the left and mentioned torticollis and that he may possibly need a helmet for the flat spot on his head. His ears are misaligned too. I had not even noticed any of this. I have spent the past three months repositioning and taking him to PT, so when we went back to the Plastic Surgeon today I had high hopes that he was improving. I was devestated to learn that his head shape hasn't changed at all and he gave us a prescription for a helmet. I have been crying all morning and can't believe that I may have to put him through the trauma of a helmet. I have looked at the photos of babies in helmets and can't imagine my little boy's face sticking out of one. I can't imagine putting my son through all of this, yet I also don't want him to look deformed for his whole life. He is a very easy going boy who sleeps very well and is always happy. I am terrified that this experience will be a terrible one and I don't know how he will ever learn to crawl, roll over, sit up, etc. with a helmet on, not to mention sleep with it. Christmas is coming and we are traveling across the country, and I don't want the first and only impression of our family members to be in a helmet. I don't know how to deal with the stares of strangers, or how his daycare provider will be able to handle this. Basically I havn't been able to think of anything else or stop crying every time I look at him. I feel guilty because I know there are much worse things that he could have. I should feel grateful that he is healthy. I don't know if there is anything I can do, but does anyone have any advice for how I can deal with this? __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 It is natural to worry, but really your son will take to the helmet in no time. My granson has worn a helmet for 41/2 mo now and just got fitted for his second helmet. There has been no trouble getting him adjusted to it. His progress has been amazing. The reaction to the helmet is been positive: you will be amazed of how many people will just walk up to you at the mall, grocery store, etc., telling of their great experience with the helmet for their babies. A friend whom I had told that my grandson would be getting a helmet said upon first seeing him it: It looks actually cute, he now can't wait to show him off to all his friends. Crawling, walking, etc. are actually easier - no head injuries when falling. Good luck, Heidrun Benbrook On 11/5/07, bjo706 <bjo706@...> wrote: I have a five month old son that has been diagnosed with plagio and tort. At his 2 month check-up the doctor noticed that he held his head to the left and mentioned torticollis and that he may possibly need a helmet for the flat spot on his head. His ears are misaligned too. I had not even noticed any of this. I have spent the past three months repositioning and taking him to PT, so when we went back to the Plastic Surgeon today I had high hopes that he was improving. I was devestated to learn that his head shape hasn't changed at all and he gave us a prescription for a helmet. I have been crying all morning and can't believe that I may have to put him through the trauma of a helmet. I have looked at the photos of babies in helmets and can't imagine my little boy's face sticking out of one. I can't imagine putting my son through all of this, yet I also don't want him to look deformed for his whole life. He is a very easy going boy who sleeps very well and is always happy. I am terrified that this experience will be a terrible one and I don't know how he will ever learn to crawl, roll over, sit up, etc. with a helmet on, not to mention sleep with it. Christmas is coming and we are traveling across the country, and I don't want the first and only impression of our family members to be in a helmet. I don't know how to deal with the stares of strangers, or how his daycare provider will be able to handle this. Basically I havn't been able to think of anything else or stop crying every time I look at him. I feel guilty because I know there are much worse things that he could have. I should feel grateful that he is healthy. I don't know if there is anything I can do, but does anyone have any advice for how I can deal with this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2008 Report Share Posted May 21, 2008 hi all, i am 32 and just got diagnosed after a two month history of transitory random joint pain after having my third child. i work in a clinic and so they ran an ra panel. the only thing that came back elevated was the rheumatoid factor. I am now wating on a refferal. i was given an rx for prednisone 20mg twice a day and told to take ibp. any thoughts on this? i am not sure what to expect or what a potential prognosis would be. after 10 years of pediatric nursing, this adult stuff bewilders me any advice i could get would be appreciated! thanks in advance, laura Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 First the diagnosis is not late. My son wasn't diagnosed until age 4. He's now 8 and is considered mostly resolved. He has a language disorder which is most likely separate from apraxia so we still have struggles, but at least he can form speech clearly on command now! He had a few misdiagnoses before, but I was very suspicious of apraxia at age 2.5. Unfortunately no one around me had seen it enough to believe my hunches. Many people aren't able to even get diagnoses for their kids until after age 3. No excuses for why it's taken this long are needed, and it's NOT too late for him to get appropriate help! To answer your questions: 1. Prompt therapy was key for us. It is not the only approach for apraxia, but it has helped my son immensely as well as others here. www.promptinstitute.com You can email them your zip code or location and they will send you a list of therapists in your area who are certified in Prompt. 2. I never used it. 3. This is the right group to ask about fish oils as many here have had " responders. " There has been a lot of anecdotal success with Nordic Naturals fish oils. Take them in a ratio of 2 ProEFA (or complete omega 3-6-9) to 1 ProEPA. You can look up the amounts of EPA and DHA and stick to that ratio using other brands as well, but I have found NN to be the most palatable for my kids. Check the list archives and files sections for fish oil 101 and other things put together. Which fish oils is a question that get asked so much sometimes you won't get more feedback right away, but the archives are LOADED with info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 Hi, I have a 3.5 yr old daughter also diagnosed with apraxia. We adopted her from Russia at 18 months old, We were told at the time of her adoption that she did have a speech delay from the doctor at her baby home . when we brought her home our doctor who is Russian and trained there told us that she was indeed delayed in speech, she also had some other delays that she quickly caught up on with just being able to receive the attention of a loving family and being allowed to play and be a kid. We had her evaluated by early intervention who's caseworker said give her a chance she just got here , if it were not for our doctor saying she was delayed in russian as well they wouldn't have evaluated her and then in turn given her speech which did help somewhat. Due to some interventions in treatment by EIP we were fortunate to have my husbands ins cover speech at a local hosp it was at this point they found her to have apraxia and recommended getting her into the preschool program at our in our district. It has really helped her a lot. We started her over the summer and she is using new words almost daily if not weekly. We also started using fish oil and vit E( which she reminds us to give her if we forget) which we think has also helped. Have you had his hearing tested? After she was home a while EIP recommended to have her hearing tested and we found she had alot of thick fluidbehind her ears thus not being able to hear as well. Tubes were necessary and helped agreat deal, we could see a difference almost the next day. Gross and fine motor are at or above age level. I could go on but your letter struck home if I can offer you any more info I'd be very happy to. Debbie [ ] new diagnosis  Hi - I'm mom to a 3 yr old just diagnosed with apraxia. His diagnosis may be a bit late, because I adopted him from Russia 1 yr ago, and we weren't surprised obviously that he was not speaking english (and had been told he was saying simple russian words). So he's actually close to 3 1/2 and can't really say any words. He's getting close to mama and up, but can't always do them. I will research all information available, but wondered if any more experienced folks could answer 3 quetions for me: 1. Best advice you can give, especially on treatment 2. Boardmaker - do people use these at home and if so where did you get it? 3. Omega3? I read an article in prevention magazine today about omega 3 and it's possible connection to helping with brain issues. Anyone know more or have personal experience? Hopefully I'm not breaking any rules, or stepping on any hornet's nests but I'm just trying to figure out how to help my son as much as possible and as quickly as possible to make up for all the lost time. Thanks. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 Hi Beth, My son also has apraxia and is adopted from Kazakhstan 2 years ago at 9 months old. My son is now 2 years and 9 months. I knew from the moment I met him, something was going on. He was dead silent and did not babble at all. He has been receiving services since he was 12 months. They started off as every other week with speech and through a lot of fighting he now receives 3x a week through our Birth To Three program in C.T. and I pay private 2x a week. He has made HUGE improvements BUT is still has a long way to go. I would love to talk with you off line, I am sure we have a lot in common. You can email me at carolyn.tarpey@... Thanks, Carolyn ________________________________ From: easimerm <easimerm@...> Sent: Mon, October 26, 2009 6:58:00 PM Subject: [ ] new diagnosis Hi - I'm mom to a 3 yr old just diagnosed with apraxia. His diagnosis may be a bit late, because I adopted him from Russia 1 yr ago, and we weren't surprised obviously that he was not speaking english (and had been told he was saying simple russian words). So he's actually close to 3 1/2 and can't really say any words. He's getting close to mama and up, but can't always do them. I will research all information available, but wondered if any more experienced folks could answer 3 quetions for me: 1. Best advice you can give, especially on treatment 2. Boardmaker - do people use these at home and if so where did you get it? 3. Omega3? I read an article in prevention magazine today about omega 3 and it's possible connection to helping with brain issues. Anyone know more or have personal experience? Hopefully I'm not breaking any rules, or stepping on any hornet's nests but I'm just trying to figure out how to help my son as much as possible and as quickly as possible to make up for all the lost time. Thanks. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 Thanks all - you've given me both great support and some good ideas. To give a little more background My son was adopted at 2 yrs 3 months. He's my 3rd adopted child and I knew the system so was able to get him right into speech, ot and pt. He's been in all 3 for the past year.(prior to school starting it was 2x per week) I also had an IEP done through the school during the summer, he qualified obviously for an early education program, and is now in school 4 days per week 3 hrs a day. It's a special needs class with 2 teachers and 3 kids. He gets pulled out weekly for 2x speech, 1x ot, 1x pt, 1x aqua therapy, and then there's an ot/speech group session. Additionally we've been doing 1x private speech, ot and pt per week, and now are adding back a second private speech per week. We have had his hearing tested and is now fine after we put in tubes in June. We also removed his tonsils and upper adenoids since they were huge and possibly getting in the way of his speech. We also spend a lot of time 1 on 1 with him doing homework from therapy including a special facial massage 3 times a day. With all of this we have had almost not progress. He's picked up signs pretty well, but speech isn't coming very much. I feel the need to step it up with apraxia-specific therapies. our speech therapist I think is very good, has some but not a lot of experience with apraxia, but is very dedicated and open to learning. I found this group yesterday and did several hours of research last night and came up with a list of things I want to learn more about including but not limited to Prompt Kaufman cards Testing for food allergies Doing a dvd consultation with Kaufman Fish oil/omega 3 Bite blocks Cranial sacral massage I will be reading this board voraciously and trying everything I can, because he's such a sweet kid, and he is trying to hard, and getting very frustrated and it's just not coming. Open to any and all suggestions from those who have made progress. Thanks - Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 One more thing. If you haven't already, I would encourage you to purchase the book " THe Late Talker " by Marilyn C. Agin, F Geng and Malcolm Nicholl. This is considered the apraxia bible and will give you a TON of great information. Sharon > > Thanks all - you've given me both great support and some good ideas. > > To give a little more background > > My son was adopted at 2 yrs 3 months. > He's my 3rd adopted child and I knew the system so was able to get him right into speech, ot and pt. He's been in all 3 for the past year.(prior to school starting it was 2x per week) > > I also had an IEP done through the school during the summer, he qualified obviously for an early education program, and is now in school 4 days per week 3 hrs a day. It's a special needs class with 2 teachers and 3 kids. He gets pulled out weekly for 2x speech, 1x ot, 1x pt, 1x aqua therapy, and then there's an ot/speech group session. Additionally we've been doing 1x private speech, ot and pt per week, and now are adding back a second private speech per week. > > We have had his hearing tested and is now fine after we put in tubes in June. We also removed his tonsils and upper adenoids since they were huge and possibly getting in the way of his speech. > > We also spend a lot of time 1 on 1 with him doing homework from therapy including a special facial massage 3 times a day. > > With all of this we have had almost not progress. He's picked up signs pretty well, but speech isn't coming very much. I feel the need to step it up with apraxia-specific therapies. > > our speech therapist I think is very good, has some but not a lot of experience with apraxia, but is very dedicated and open to learning. > > I found this group yesterday and did several hours of research last night and came up with a list of things I want to learn more about including but not limited to > Prompt > Kaufman cards > Testing for food allergies > Doing a dvd consultation with Kaufman > Fish oil/omega 3 > Bite blocks > Cranial sacral massage > > I will be reading this board voraciously and trying everything I can, because he's such a sweet kid, and he is trying to hard, and getting very frustrated and it's just not coming. > > Open to any and all suggestions from those who have made progress. > > Thanks - Beth > Quote Link to comment Share on other sites More sharing options...
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