Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Candy I'll respond to one of your questions regarding private therapy. I think you'll find a wide range of answers to this, depending on the services provided by your local EI as well as the individual therapist. We moved during my daughter's time in EI and (at current count) have had 5 different EI therapists in two states. Without boring you with details, there can be a HUGE difference in what you get in different locations...even within the same county but with a different therapist. My learning has been it all comes down to the therapist. If you get an EI therapist that is experienced with these sorts of problems AND can engage your child, (to me, these are two completely different things!),try to maximize the visits/time you can get with that therapist, especially if your child has more than a few months before turning 3. If your therapist in EI doesn't offer both -- try to get another, but in our experience the time/difficulty in 'switching' within EI wasn't worth it. At that point, or as your child gets closer to 3, you may want to start a search for a private SLP. The benefit will be you can completely pick who it is, and ensure they are knowledgeable and can engage your child. Once you find one you like, you can stick with them as long as needed, not just until they turn 3. This consistency can be very helpful if your child ends up in a developmental preschool environment at age 3. Of course, the downside of a private SLP is cost... check the resources on the website for tips in securing insurance coverage. Not that I can claim scientific proof, but my daughter starting showing significant improvement after we found the 'right' private SLP and being on EFAs for a few months. We've kept the EI services in the meantime, and asked the private SLP to work with the EI SLP to coordinate approach. As my daughter is 3 in June, I'm toying with increasing the frequency of private therapy and stopping EI a few months early. (I've got a newborn as well and there is only so much scheduling I can handle...when I prioritize, what I think is contributing the least right now is the EI therapy). I think one more reason why private therapy has helped us so much is that after a year of EI-only therapy in our home, my daughter became rather un-cooperative. In-home therapy is great and convenient, but for Ellie, she didn't want to play the therapists' games when we were in her home turf. When we are at the private therapists, she's much more cooperative. But, I'm sure there are parents who have had the opposite experience as well! Hope this helps [ ] New with Questions > Hello, I just joined the board and thought I'd introduce > myself and ask a few questions. My son turned two this past > December and is currently receiving speech therapy through Early > Intervention. He has only had a handful of sessions so far so I > don't really have any opinions yet from the therapist. He says a > couple of two word sentences like hi doggie and hi mommy. He says > bye but then he says eye eye when he adds an extra bye. The > therapist says he shows some apraxia symptoms. He can't blow > bubbles, bites his straw, and even though he understands just about > everything refuses to use the words for them except occasionally. I > just started him on ProEfa two days ago so I have my fingers crossed > that will help. > My son's history: born breech at 38 weeks gestation with > dislocated hip, asymmetrical headshape, and severe torticollis. > Underwent PT for torticollis from 4 months to 14 months and 2 > DOCbands from 9 months through 18 months. Sees an osteopath every > three months for cranial manipulation. > Now to the questions: One of my questions is that when my son is > playing he totally focuses on that toy to the extent that he will > ignore anyone asking him questions or asking him to do something. > He doesn't like to make eye contact when asked. His therapist says > this is an indication that he won't follow direction. Does anyone > else's child do this? > Also, I heard someone mention a neurodevelopmentist in > sonville, land; Carol Samango-Sprouse, which is only a few > minutes from my home. What does a neurodevelopmentist do? > I have an appt. next month to have my son evaluated by a private > speech therapist. Does anyone's child see a private therapist as > well as the one in the EI Program at the same time? > Thanks for listening and I look forward to any response. > > Candy, mom to > land > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Hi Candy - Welcome - I am so glad you found us!! Your has a lot of the same characteristics my son had when he was his age. Focusing on a certain toy and seeming to block everything else out - did this. Looking back I think it was his way of having control of something. Since he couldn't talk at the time he would " control " what he was playing with. I also like to think that since these boys will grow into men, they are practicing their " selective hearing " !! Eye contact is another big thing that many kids with apraxia have trouble with. would not make eye contact with anyone, especially when he was non-verbal. I think this is because he knew he couldn't verbally communicate, so he didn't want to try. Think about it - If you were in a foreign county and didn't know their language, would you make eye contact with people? I wouldn't because I would be afraid that would open the " air " for a hello or some sort of communication. Usually people don't come up and talk to you unless they have made eye contact first. When I wanted to look at me, I would take his hands and put them on my face. He would then look at me in the eye. I would not put my hands on his face as this was an invasion of his space and he did not like it. Once we got in the routine of this I would start verbally cueing him by saying - , look at me when I am talking to you please. He is 5 1/2 now and I still remind him. He still does not like making eye contact - but he does when he needs too. We went to a private therapist since was 2 1/2. When he turned 4 we started through the school system (even though you can start at 3.) I would not have changed our private therapist for anything...she is the reason is doing so well. I know many people that use early intervention, and then supplement with private therapy. I believe that you, as 's mom, knows what he needs. You are his biggest advocate and always will be. My goal was for to catch up to his peers by the time he started Kindergarten. He has met that goal. We still have many hurdles ahead, but at least one goal is behind us!! Good luck - let me know if there is anything else I can help with!! North CArolina ......... > Now to the questions: One of my questions is that when my son is > playing he totally focuses on that toy to the extent that he will > ignore anyone asking him questions or asking him to do something. > He doesn't like to make eye contact when asked. His therapist says > this is an indication that he won't follow direction. Does anyone > else's child do this? > Also, I heard someone mention a neurodevelopmentist in > sonville, land; Carol Samango-Sprouse, which is only a few > minutes from my home. What does a neurodevelopmentist do? > I have an appt. next month to have my son evaluated by a private > speech therapist. Does anyone's child see a private therapist as > well as the one in the EI Program at the same time? > Thanks for listening and I look forward to any response. > > Candy, mom to > land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Michele: Welcome to this group. You will learn so much just by reading all of the posts and messages, even about things that are not a topic for you at that time....read them as much as you can. About your Pro-EFA question, the (time)results are varied, but the " usual " time is approximately 3 weeks before seeing progress. Some parents see results earlier, some later. For me, it took about 6 weeks before we saw significant progress, and the progress is still happening. I only used one capsule a day for my son, who was 2.6 at the time. He is now 3.1 years old and is still on one capsule a day. When my son was 2.6 years old, he only had a few words in his vocabulary, mostly signs. It helped me to keep a list on our refridgerator of his words that he was using consistently. It helped me to see that he was making progress, and I shared that list with his therapist. Although we have a LONG way to go, and I get discouraged often, my son now speaks in 3-5 word sentences and has an unlimited vocabulary.....he is just having a tough time putting them together. NOW, we are dealing mostly with attitude problems and tantrums/behavior. Go figure, when he couldn't speak, he was a sweetheart. Now that he is verbal, he is tough to take! It is great that you got him into therapy, for speech, OT and PT. Keep it up and Good Luck! Kim Hi there, I just joined this group yesterday and thought I would give a background why I am here and ask a few questions. My son is 2.5 years old and has apraxia. He also has reflux, food allergies, sensory integration dysfunction, hypotnia and epilepsy (current controlled on medications). He only babbles and although I think he says single words from time to time, I think it is just babble. He cannot blow bubbles, or kiss with his lips, or drink from anything but a bottle (probably more behavioral). He has been in EI ST for about a year but for the first 8 months the therapist said she only needed to see him once a month, then for a few months after I pushed for it they increased it to 1x a week and then finally a month ago 2x a week. My son also gets OT once a week and PT twice a month through EI. We pay for two private therapist as well, a feeding/oral motor specialist and will be starting with a sensory inegration therapist this Monday. My son has made progress overall, but expressive speech has been so slow. He does not have a single word in his vocabulary that he will use on a daily basis. He can sign about five things now. We had him on Cod Liver Oil for a month and now we are switching to Pro EFA I am hoping he has success like some apraxic kids. My questions: 1) How long did it take to see if Pro EFA works? How many pills did you start with a day? 2) Anyone from CT that can recommend a very good private ST? I want the best even if it cost me. 3) Any support groups in CT? Thanks- Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Michele, My apraxic son is now a month away from 4 years old. He had reflux and still has sensory integration dysfunction, hypotonia, dysarthria, global apraxia. My older child has epilepsy, he is 6yrs old. The apraxic son was only making the ah and eh sound at the age of 2.5 years and started saying his first words about 5 months ago. He is now up to 45 words consistently and many others he can say with prompting and we are beginning to put two words together i.e. apple sauce (his favorite food) and ball up. He puckers his lips with prompting now put not always. He does intense oral motor therapy at home and in private and public speech. He has been on ProEFA for I think a little over a year and it took about a month to see big spurts and in the beginning it was in OT. He started on one ProEFA a day, we increased to two about 4-5 months later when he plateaued and now we are on One ProEFA and One EPA a day. I can't help you with CT but good luck. Daphne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2003 Report Share Posted April 24, 2003 Please read Children with Starving Brains by Dr. McCandless. Her 2003 edition is just out and it will sum up everything you need to know and it will help formulate questions to ask. It is an easy read and written by a DAN doctor. Dr. McCandless is trying to cure her grandaughter from autism so she has a vested interest in finding the cure!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 Elayna, Welcome to the list. Check the FAQs of this list for info about how to get a hair analysis from DDI with or without a doc of your own. Many on this list chelate without a doc. Digestive enzymes, probiotics, and for some the gfcf diet help with the gut issues. S Where can I get a metals (hair) test done on my child? Also Is there <BR> a book I can buy about chelating? Is this only done under a Dr's care?<BR> I do have access to a Dan Dr. in my area. But you first have to go to <BR> a meeting and everyone brings 10.00??? Seems shady to me. Also, I <BR> keep hearing about healing the gut, how is this done? Thanks,<BR> <BR> Elayna<BR> <BR> </tt> <br> <!-- |**|begin egp html banner|**| --> <table border=0 cellspacing=0 cellpadding=2> <tr bgcolor=#FFFFCC> <td align=center><font size= " -1 " color=#003399><b> Sponsor</b></font></td> </tr> <tr bgcolor=#FFFFFF> <td align=center width=470><a href= " http://rd./M=249982.3179269.4495679.2595810/D=egroupweb/S=1705061\ 616:HM/A=1524963/R=0/*http://hits.411web.com/cgi-bin/autoredir?camp=556 & lineid=3\ 179269 & prop=egroupweb & pos=HM " ><img src= " http://us.a1.yimg.com/us.yimg.com/a/sl/sleepangel/sleep_300x250.gif " alt= " " width= " 300 " height= " 250 " border= " 0 " ></a></td> </tr> <tr><td><img alt= " " width=1 height=1 src= " http://us.adserver./l?M=249982.3179269.4495679.2595810/D=egroupmai\ l/S=:HM/A=1524963/rand=729707452 " ></td></tr> </table> <!-- |**|end egp html banner|**| --> <br> <tt> =======================================================<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 Hello, > Where can I get a metals (hair) test done on my child? details here: /files/HOW_TO_hair_test > Also Is there > a book I can buy about chelating? not really, but there are a few books that have some info on it: /files/Books_about_autism The first section about biomedical and metals issues may be some help. > Is this only done under a Dr's care? A lot of people do it under a doctors care, some do it without a doctor directing it. > I do have access to a Dan Dr. in my area. But you first have to go to > a meeting and everyone brings 10.00??? I don't know if I understand what you mean here. What is the meeting? Like a lecture or something? > Seems shady to me. I don't know, I don't get what the meeting is about yet. Most doctors will want to do an inintial intake visit, and a bunch of tests, and possibly a number of visits, before chelating. That is a LOT more than $10. best, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2003 Report Share Posted April 26, 2003 > Hi, > > Where can I get a metals (hair) test done on my child? Also Is there > a book I can buy about chelating? There is info here /files >> Is this only done under a Dr's care? Not necessarily. It depends on your philosophy and what your child needs. > I do have access to a Dan Dr. in my area. But you first have to go to > a meeting and everyone brings 10.00??? Seems shady to me. Yep Also, I > keep hearing about healing the gut, how is this done? Depends on what your child's issues are. In general, it means removing food intolerances [with diet, enzymes, or both] and yeast/bacteria issues http://www.danasview.net/parent3.htm#diet Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 > > Hi there. I stumbled upon this group purely by accident, but as it > turns out have a ton of questions. My son is 4 mos old and the right > side of the back of his head is flat. He favors this side when > sitting, sleeping, eating, etc. Our pediatrician has not made any > diagnosis of plagiocephaly in so many words, but has mentioned the > flat spot at both of his visits and told us we have to do something > about it (i.e. repositioning). I've done some basic internet > research and am wondering if we shouldn't be a bit more concerned > than we are or if we are making a big deal out of this. I've tried > to compare his head to pictures I've seen and while his ears are > symmetical, his head is very slanted when looking down on it from > above. I've had people tell me it will fix itself once he starts > sitting up and crawling and others tell me that if we don't do > something now, he'll have to wear a helmet 20 hours a day! > > We have tried repositioning several times during the night, but he > always winds up looking straight up (which is still better than to > the right like he used to). We bought the noggin nest for his > carseat, bouncy seat, etc., but don't know if this was a total waste > of money or not. I don't want to use a sleep positioner, since I've > read that those can be dangerous in cribs. We alter how we feed him, > position him, etc. > > I guess I'm just looking for a bit more info, advice, and ideas. > Hopefully this is the correct forum for me! Sorry for such a long, > wordy post and thank you. > > -J. Welcome J, My son was 11 wks when I started noticing the back right of his head looking flat. Actually it looks alot worse in the front left side where its not filled out as much. Put your son in the mirror and look at his image. Can you tell if he has any asymetry? That's what I based my decision on. His image looked terrible in the mirror. Really asymetrical. He's been in his band for about 4 weeks and I'm beginning to see improvement.Good luck. Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Hello, Welcome to the group! You are absolutely in the right place for your questions. We have extensive repositioning sections in both our files and links areas. We also have many success stories on the board of parents who have avoided a helmet through repositioning. It is a difficult task though, and needs to be done 24/7 to be effective. Has your son been evaluated for torticollis? At his age repoing will get a bit more difficult now b/c he's not going to want to sleep where you put him, but at the same time he should be able to spend some time in an exersaucer now. Another product you should look into is www.babybumboseat.com. As far as sleep repositioners, there are two fairly new ones at www.nightform.com and www.sleepshaper.com. Sleeping is the most important time for him to be off his flat spot, so it's something I would strongly consider. How severe do you think he is? We have severity assessments in our links section. Could you post a picture of his head from a birds eye view? Laying him on a boppy pillow will help with getting one. It's important to record your progress with pictures as well, so you know the repiong is working. Also, where are you located? Cranial Technologies, www.cranialtech.com, offers free consultations. They'll give you an idea of his severity and will help you track his progress. If he does end up needing a helmet it is worn 23 hrs a day, but really isn't as bad as it sounds. My daughter had severe right sided plagio and wore three bands for 14 months. Her before and after pics are on her website below if you're interested. Looking through our before and after photo area may help out in determining your son's severity as well. , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.typepad.com > > Hi there. I stumbled upon this group purely by accident, but as it > turns out have a ton of questions. My son is 4 mos old and the right > side of the back of his head is flat. He favors this side when > sitting, sleeping, eating, etc. Our pediatrician has not made any > diagnosis of plagiocephaly in so many words, but has mentioned the > flat spot at both of his visits and told us we have to do something > about it (i.e. repositioning). I've done some basic internet > research and am wondering if we shouldn't be a bit more concerned > than we are or if we are making a big deal out of this. I've tried > to compare his head to pictures I've seen and while his ears are > symmetical, his head is very slanted when looking down on it from > above. I've had people tell me it will fix itself once he starts > sitting up and crawling and others tell me that if we don't do > something now, he'll have to wear a helmet 20 hours a day! > > We have tried repositioning several times during the night, but he > always winds up looking straight up (which is still better than to > the right like he used to). We bought the noggin nest for his > carseat, bouncy seat, etc., but don't know if this was a total waste > of money or not. I don't want to use a sleep positioner, since I've > read that those can be dangerous in cribs. We alter how we feed him, > position him, etc. > > I guess I'm just looking for a bit more info, advice, and ideas. > Hopefully this is the correct forum for me! Sorry for such a long, > wordy post and thank you. > > -J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Hi J, You've already got some wonderful replies! I see that nighttime repo seems to be your biggest challenge area. already replied with postioners that are actually a combination mattress/positioner that can assuage concerns of loose positioner wedges coming loose, etc. It's critical for repo results that you are able to place your son's head so that he is on or just to the side of his bulging area on the back of his head, as if you were trying to " squish " the bulging part over to the flattened area. There are some aggressive repositioning tips, including how to measure progress, etc. in the Files/Repo Headquarters folder that may be of help to you. Bouncie seat use should be non-existant or at an absolute minimum, even with a noggin nest (although I know this isn't always practical.) We aggressively repo'd our daughter Remy for her plagio/brachy from 5 to 13 months. It was a grueling and exhausting 24 hour a day job. She was never on her back except for diaper changes and the carseat. Her progress pics are in the Photos/Before and After/Repositioned folder if you'd like to take a look. You mentioned that your ped has brough up in a round-a-bout way the flattened area of his head at " both appt's. " Does this mean both his 2 and 4 month appts? If you started repo at 2 months of age, you should have realized some great correction in a month's time or less, but it sounds to me from your post that you haven't seen any improvement - is this correct? The AAP's guidelines on plagio treatment say that repo should be tried for 2-3 months, but that in cases where the headshape worsens or results stall, babies should be referred for evaluation for a helmet/band. If you are unable to properly repo at night (some babies can be very stubborn) it may be best to start down the path of banding so that you don't inadverdently let the headshape worsen while waiting a few months to see what happens. At your baby's age, you should be taking top, front, side, back view photos every couple of weeks or so to see if your repositioning efforts are working. This can help with dialogue with your pediatrician in that it may show repo is just not working for you particular baby. Regarding your son's severity, sometimes it can be helpful to post a few pictures here at the group and get feedback from some of the other members. I know you said that from the top, your son's heashape appears very slanted. It's impossible to know from your words, but in my mind, there might be some facial asymmtry happening with that kind of description. It's so difficult to judge ears - are you open to taking another look at his ear symmetry? A low- tech, but effective way is to look down at the top of your son's head, and stick one of your fingers in each of his ears,and seeing how they are oriented to his nose. You can judge facial asymmetry best by holding your baby in front of a mirror, which nulls the self- correcting our own eyes do naturally when we look at someone. Knowing about any facial asymmetry involvement can be helpful in deciding on treatment options. At first glance, helmets and bands may seem like something you'd want to be the last resort. However, the babies do just fine in them, and they look so cute in their decorated bands! Also, they work, which is wonderful. Some babies just do not respond to repositioning for a variety of reasons, tort included, and it's important that those babies move on to a helmet/band in a timely enough manner to optimize correctin. There are also those babies who do round out on their own. It is impossible to predict who those lucky babies will be, however, so it really is a roll of the dice. Your son is young enough that all of his treatment options are in front of him. I'm glad you discovered this condition actually has a name, and are taking a more serious look at defining what you would like to do as far as treatment. Would you let me know if I can be of any help at all with repo? Take care, Christie (Mom to Repo'd Remy) > > Hi there. I stumbled upon this group purely by accident, but as it > turns out have a ton of questions. My son is 4 mos old and the right > side of the back of his head is flat. He favors this side when > sitting, sleeping, eating, etc. Our pediatrician has not made any > diagnosis of plagiocephaly in so many words, but has mentioned the > flat spot at both of his visits and told us we have to do something > about it (i.e. repositioning). I've done some basic internet > research and am wondering if we shouldn't be a bit more concerned > than we are or if we are making a big deal out of this. I've tried > to compare his head to pictures I've seen and while his ears are > symmetical, his head is very slanted when looking down on it from > above. I've had people tell me it will fix itself once he starts > sitting up and crawling and others tell me that if we don't do > something now, he'll have to wear a helmet 20 hours a day! > > We have tried repositioning several times during the night, but he > always winds up looking straight up (which is still better than to > the right like he used to). We bought the noggin nest for his > carseat, bouncy seat, etc., but don't know if this was a total waste > of money or not. I don't want to use a sleep positioner, since I've > read that those can be dangerous in cribs. We alter how we feed him, > position him, etc. > > I guess I'm just looking for a bit more info, advice, and ideas. > Hopefully this is the correct forum for me! Sorry for such a long, > wordy post and thank you. > > -J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Hi J....You have already received some wonderful repo advice from Christie. So I will simply say welcome to the group and please let us know if there's anything we can help you with. Becky, mom to , repo grad in Pgh, PA > > > > Hi there. I stumbled upon this group purely by accident, but as it > > turns out have a ton of questions. My son is 4 mos old and the > right > > side of the back of his head is flat. He favors this side when > > sitting, sleeping, eating, etc. Our pediatrician has not made any > > diagnosis of plagiocephaly in so many words, but has mentioned the > > flat spot at both of his visits and told us we have to do > something > > about it (i.e. repositioning). I've done some basic internet > > research and am wondering if we shouldn't be a bit more concerned > > than we are or if we are making a big deal out of this. I've tried > > to compare his head to pictures I've seen and while his ears are > > symmetical, his head is very slanted when looking down on it from > > above. I've had people tell me it will fix itself once he starts > > sitting up and crawling and others tell me that if we don't do > > something now, he'll have to wear a helmet 20 hours a day! > > > > We have tried repositioning several times during the night, but he > > always winds up looking straight up (which is still better than to > > the right like he used to). We bought the noggin nest for his > > carseat, bouncy seat, etc., but don't know if this was a total > waste > > of money or not. I don't want to use a sleep positioner, since > I've > > read that those can be dangerous in cribs. We alter how we feed > him, > > position him, etc. > > > > I guess I'm just looking for a bit more info, advice, and ideas. > > Hopefully this is the correct forum for me! Sorry for such a long, > > wordy post and thank you. > > > > -J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2005 Report Share Posted January 21, 2005 Thanks to everyone for the replies. I apologize in advance this second wordy post. I read up on the links provided for torticollis and while I'm hardly well versed on the subject, it doesn't seem like this is the problem. He has really good range of motion and our attempts at getting him to look to his left as opposed to the right are starting to see success. Looking back I think we're to blame a bit because we were positioning him with stimulus usually to the right without even thinking about it. I wish they told you to mix it up with crib positioning, etc. in child birth classes or in the hospital! The ped did mention the flatness at his two month and told us to watch it and move his crib toys to the opposite side of the crib so he would look the other way. Unfortunately, we did this, but I guess we just didn't take it seriously enough to be aggresive. Too many people told us it would work iteself out. By the 4 month check up, the ped was much more serious with us and told us to do it now as our window of opportunity to fix it this way was closing. He basically said to do whatever worked to get him off the flat spot. Of course I feel like a jerk for not being more vigilant earlier. Now we rarely have him on his back and if we do he is positioned so he is looking to the left. If we use the bouncy seat, we use the noggin nest and turn it so that he has to look to the left to see whatever it is he is interested in. He spends most of his time in an exersaucer or in our arms. When we feed him, we position him so he is looking left. So far he is cooperating without a problem. You are correct that night is the hardest time, though we have got him to sleep without looking to the right. I position him looking to the left with a receiving blanket rolled up and placed under the right side of his head like a wedge. He does move his head slightly from the left facing position to face up, but not to the right anymore. But I will definately look into the mentioned sleep positioners. What angles of picture are the most helpful for opinions from the group besides top view? Thanks again for the quick response. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2005 Report Share Posted January 21, 2005 J - You have come to the right place! Welcome to the group. Ask as many questions as you like we have all been in your shoes At this point you are probably at the right level of concern. Please go visit the files section and read up on repo tips. We have some very good tips for aggressive 24/7 repo. I would incorporate as much as you can. At 4 months a sleep poisitioner may be useless since you son is probably pretty wiggly. However, if you were to secure a positioner to his sleeper it might work. The basic concept is get some foam, a cover, and some velcro. Attach velcro to back of sleeper under right shoulder going up and down body. Put a cover over the foam piece. Attach another piece of velcro to foam lengthwise. Attach foam piece to sleeper at naps and night! Pick the size of the foam "roll" based on how far you want to tilt him on his side. Just a little maybe enough to keep him off the flat spot. Timewise you have caaght this early which is great. He has no ear asymmetry that you can see which is also great (ears are stubborn to move). Time is of the essence to correct without a band. This would be my game plan ... Document current level of flatness with pictures. Take from aerial view, front, sides and back. Repeat every 2 weeks from same angels. Check the photos section -->before and after --> doc bands for examples of good angels. Be as aggressive as possible with repo 24/7, see files section for many tips. See links section for helpful products. Tummy time!!! Every day! Multiple times! Start with 30 seconds every hour and work up from there as he tolerates. If he can do 15 minutes an hour then go for it. Don't wait for him to be sitting to get off the flat spot. Work on stretching and strengthening his neck muscles. It sounds like he has a definite preference. He may have torticollis or possibly just neck tightness. We have some tips in the file section with pictures for how to stretch and strengthen (look for torticollis tips). At 6 month well baby or any visit with ped between now and then ... bring photos, discuss your repo efforts and progress, discuss neck and possible range of motion issues and possible tilt. The AAP says repo is a good first step up until 5 months of age. Some parents have found if it is working well for them (i.e. they can manage agressive repo and they are seeing desirable results) they will attempt repo up until 7 or 8 months. After that point if you are still unhappy with the headshape the AAP recommends band treatment. Document any purchases made for repo. Document any discussion with dr (tell him to put note in chart). Document repo efforts and stretching and strengthening efforts (a journal, pictures, emails, etc.). This may come in handy for insurance approval at a later date. Good luck. mom to naDOC Grad 2/04Tort ResolvedSouth Carolinawww.thefilyaws.comjrawla@... wrote: Hi there. I stumbled upon this group purely by accident, but as it turns out have a ton of questions. My son is 4 mos old and the right side of the back of his head is flat. He favors this side when sitting, sleeping, eating, etc. Our pediatrician has not made any diagnosis of plagiocephaly in so many words, but has mentioned the flat spot at both of his visits and told us we have to do something about it (i.e. repositioning). I've done some basic internet research and am wondering if we shouldn't be a bit more concerned than we are or if we are making a big deal out of this. I've tried to compare his head to pictures I've seen and while his ears are symmetical, his head is very slanted when looking down on it from above. I've had people tell me it will fix itself once he starts sitting up and crawling and others tell me that if we don't do something now, he'll have to wear a helmet 20 hours a day! We have tried repositioning several times during the night, but he always winds up looking straight up (which is still better than to the right like he used to). We bought the noggin nest for his carseat, bouncy seat, etc., but don't know if this was a total waste of money or not. I don't want to use a sleep positioner, since I've read that those can be dangerous in cribs. We alter how we feed him, position him, etc. I guess I'm just looking for a bit more info, advice, and ideas. Hopefully this is the correct forum for me! Sorry for such a long, wordy post and thank you.-J.For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2005 Report Share Posted January 21, 2005 Hi and welcome to the grp! Please post again w/any questions... Sue Colin F. 15 mos. STARband grad > > Hi there. I stumbled upon this group purely by accident, but as it > turns out have a ton of questions. My son is 4 mos old and the right > side of the back of his head is flat. He favors this side when > sitting, sleeping, eating, etc. Our pediatrician has not made any > diagnosis of plagiocephaly in so many words, but has mentioned the > flat spot at both of his visits and told us we have to do something > about it (i.e. repositioning). I've done some basic internet > research and am wondering if we shouldn't be a bit more concerned > than we are or if we are making a big deal out of this. I've tried > to compare his head to pictures I've seen and while his ears are > symmetical, his head is very slanted when looking down on it from > above. I've had people tell me it will fix itself once he starts > sitting up and crawling and others tell me that if we don't do > something now, he'll have to wear a helmet 20 hours a day! > > We have tried repositioning several times during the night, but he > always winds up looking straight up (which is still better than to > the right like he used to). We bought the noggin nest for his > carseat, bouncy seat, etc., but don't know if this was a total waste > of money or not. I don't want to use a sleep positioner, since I've > read that those can be dangerous in cribs. We alter how we feed him, > position him, etc. > > I guess I'm just looking for a bit more info, advice, and ideas. > Hopefully this is the correct forum for me! Sorry for such a long, > wordy post and thank you. > > -J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 Hello J Welcome to the group. I'm glad you found us, and I see you have gotton exellent replies already. Set yourself a timeline for the repo. Take pictures top down, and then retake them every wk so you have comparison. And please feel free to ask any ? you have. Sandy Willow's Mom > > Hi there. I stumbled upon this group purely by accident, but as it > turns out have a ton of questions. My son is 4 mos old and the right > side of the back of his head is flat. He favors this side when > sitting, sleeping, eating, etc. Our pediatrician has not made any > diagnosis of plagiocephaly in so many words, but has mentioned the > flat spot at both of his visits and told us we have to do something > about it (i.e. repositioning). I've done some basic internet > research and am wondering if we shouldn't be a bit more concerned > than we are or if we are making a big deal out of this. I've tried > to compare his head to pictures I've seen and while his ears are > symmetical, his head is very slanted when looking down on it from > above. I've had people tell me it will fix itself once he starts > sitting up and crawling and others tell me that if we don't do > something now, he'll have to wear a helmet 20 hours a day! > > We have tried repositioning several times during the night, but he > always winds up looking straight up (which is still better than to > the right like he used to). We bought the noggin nest for his > carseat, bouncy seat, etc., but don't know if this was a total waste > of money or not. I don't want to use a sleep positioner, since I've > read that those can be dangerous in cribs. We alter how we feed him, > position him, etc. > > I guess I'm just looking for a bit more info, advice, and ideas. > Hopefully this is the correct forum for me! Sorry for such a long, > wordy post and thank you. > > -J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2005 Report Share Posted March 6, 2005 Hello Kim Welcome to the group. I'm sorry to hear that your little one is having a rough start. may I ask what type of surgery she had? I know that the usual bands from CT can go upto 24months at the end of treatment, but I'm not sure about other types. I know they do post op bands as well, but like I said I do not know much about those. You might be able to contact a Cranial Tech facility and get more specific info on that. They are very helpful there. Any other questions you might have feel free to ask them here. Sandy Willow's Mom > > My daughter is almost one year old. She has had a very difficult start in life and several > medical issues to deal with. I was told that the surgeon that did her skin graft was very > experienced with using DOC bands and that would likely need to be our next step. > Unfortunately he does not feel that she is stable enough to begin therapy for her head > shape at this time and needs at least six months to heal. Other surgery will be required, > so I am not sure that the traditional bands can be used in her case as she will be close to > two years old by then. When I asked if we would then be out of luck to adress the head > shape issue, I was told " No, it just becomes more complex at that point " . > > I am now wondering what can be done to correct this problem at such a late time? Any > insight you may have would be greatly appreciated. Thanks! > > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2005 Report Share Posted March 6, 2005 Hello Kim Welcome to the group. I'm sorry to hear that your little one is having a rough start. may I ask what type of surgery she had? I know that the usual bands from CT can go upto 24months at the end of treatment, but I'm not sure about other types. I know they do post op bands as well, but like I said I do not know much about those. You might be able to contact a Cranial Tech facility and get more specific info on that. They are very helpful there. Any other questions you might have feel free to ask them here. Sandy Willow's Mom > > My daughter is almost one year old. She has had a very difficult start in life and several > medical issues to deal with. I was told that the surgeon that did her skin graft was very > experienced with using DOC bands and that would likely need to be our next step. > Unfortunately he does not feel that she is stable enough to begin therapy for her head > shape at this time and needs at least six months to heal. Other surgery will be required, > so I am not sure that the traditional bands can be used in her case as she will be close to > two years old by then. When I asked if we would then be out of luck to adress the head > shape issue, I was told " No, it just becomes more complex at that point " . > > I am now wondering what can be done to correct this problem at such a late time? Any > insight you may have would be greatly appreciated. Thanks! > > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Hi Kim, I'm so sorry to hear that your daughter has had a rough start. I'm assuming the skin grafts are on her head. You definitely want all of that to heal before starting band therapy. If she can start by 18 months then you may be able to get good correction with a DOC band. It would all depend on severity and her growth. By any chance was she a preemie? Cranial Tech (DOC band makers) use adjusted age for determining banding cutoffs. They will keep a baby in a band up until 24 months or until there are signs (or xrays) showing the sutures have closed too much) whichever is first. If your daughter is too old for a band then surgery may be the only option. They is usually only used in severe cases. We have had one recent surgery - Jax. He did great and looks great. Please keep us posted and let us know if you have anymore quesitons. mom to na DOC Grad South Carolina www.thefilyaws.com emiliasmommy1 <emiliasmommy1@...> wrote: My daughter is almost one year old. She has had a very difficult start in life and several medical issues to deal with. I was told that the surgeon that did her skin graft was very experienced with using DOC bands and that would likely need to be our next step. Unfortunately he does not feel that she is stable enough to begin therapy for her head shape at this time and needs at least six months to heal. Other surgery will be required, so I am not sure that the traditional bands can be used in her case as she will be close to two years old by then. When I asked if we would then be out of luck to adress the head shape issue, I was told "No, it just becomes more complex at that point". I am now wondering what can be done to correct this problem at such a late time? Any insight you may have would be greatly appreciated. Thanks!Kim For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Hi Kim, I'm so sorry to hear that your daughter has had a rough start. I'm assuming the skin grafts are on her head. You definitely want all of that to heal before starting band therapy. If she can start by 18 months then you may be able to get good correction with a DOC band. It would all depend on severity and her growth. By any chance was she a preemie? Cranial Tech (DOC band makers) use adjusted age for determining banding cutoffs. They will keep a baby in a band up until 24 months or until there are signs (or xrays) showing the sutures have closed too much) whichever is first. If your daughter is too old for a band then surgery may be the only option. They is usually only used in severe cases. We have had one recent surgery - Jax. He did great and looks great. Please keep us posted and let us know if you have anymore quesitons. mom to na DOC Grad South Carolina www.thefilyaws.com emiliasmommy1 <emiliasmommy1@...> wrote: My daughter is almost one year old. She has had a very difficult start in life and several medical issues to deal with. I was told that the surgeon that did her skin graft was very experienced with using DOC bands and that would likely need to be our next step. Unfortunately he does not feel that she is stable enough to begin therapy for her head shape at this time and needs at least six months to heal. Other surgery will be required, so I am not sure that the traditional bands can be used in her case as she will be close to two years old by then. When I asked if we would then be out of luck to adress the head shape issue, I was told "No, it just becomes more complex at that point". I am now wondering what can be done to correct this problem at such a late time? Any insight you may have would be greatly appreciated. Thanks!Kim For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Thank you for your responses! To answer a few questions, here's a bit more information. Emilia was born full term and with no signs of any problems. A few days later we noticed a mark on her head, eventually learning it was a hemangioma (vascular tumor/birthmark). Because of many complications she had been on oral steroids and a chemotherapy drug to try and stop the growth. Eventually things began to improve, except the large open ulcers on her head. Because of these, she was only able to sleep, be heald on one side of her head. This of course has caused the shape problems along with a lot of contracture along her neck when healing finally began. Just over a month ago, Emilia had a skin graft from her butock/thigh to her scalp. We have been working with the early intervention program in our state since August. PT, OT and speech. While we are still hoping that her range of motion will improve, it is likely not a quick fix. Surgery is a possibility later on to fix it as well as multiple other procedures after the graft has time to heal. I guess I am just trying to gather more information at this point so that I am better informed about what options are available. I will continue reading the older posts on this board and gain much insight I'm sure. Thanks again! Kim > > My daughter is almost one year old. She has had a very difficult start in life and several > medical issues to deal with. I was told that the surgeon that did her skin graft was very > experienced with using DOC bands and that would likely need to be our next step. > Unfortunately he does not feel that she is stable enough to begin therapy for her head > shape at this time and needs at least six months to heal. Other surgery will be required, > so I am not sure that the traditional bands can be used in her case as she will be close to > two years old by then. When I asked if we would then be out of luck to adress the head > shape issue, I was told " No, it just becomes more complex at that point " . > > I am now wondering what can be done to correct this problem at such a late time? Any > insight you may have would be greatly appreciated. Thanks! > > Kim > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Thank you for your responses! To answer a few questions, here's a bit more information. Emilia was born full term and with no signs of any problems. A few days later we noticed a mark on her head, eventually learning it was a hemangioma (vascular tumor/birthmark). Because of many complications she had been on oral steroids and a chemotherapy drug to try and stop the growth. Eventually things began to improve, except the large open ulcers on her head. Because of these, she was only able to sleep, be heald on one side of her head. This of course has caused the shape problems along with a lot of contracture along her neck when healing finally began. Just over a month ago, Emilia had a skin graft from her butock/thigh to her scalp. We have been working with the early intervention program in our state since August. PT, OT and speech. While we are still hoping that her range of motion will improve, it is likely not a quick fix. Surgery is a possibility later on to fix it as well as multiple other procedures after the graft has time to heal. I guess I am just trying to gather more information at this point so that I am better informed about what options are available. I will continue reading the older posts on this board and gain much insight I'm sure. Thanks again! Kim > > My daughter is almost one year old. She has had a very difficult start in life and several > medical issues to deal with. I was told that the surgeon that did her skin graft was very > experienced with using DOC bands and that would likely need to be our next step. > Unfortunately he does not feel that she is stable enough to begin therapy for her head > shape at this time and needs at least six months to heal. Other surgery will be required, > so I am not sure that the traditional bands can be used in her case as she will be close to > two years old by then. When I asked if we would then be out of luck to adress the head > shape issue, I was told " No, it just becomes more complex at that point " . > > I am now wondering what can be done to correct this problem at such a late time? Any > insight you may have would be greatly appreciated. Thanks! > > Kim > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Hello Kim I am sorry to hear of your daughters start in life .. makes me hurt thinking of it. It is so frustrating to see tiny ones in pain. I sure hope everything starts going good for her! I would definately ask around, if possible, to other clinics, doctors about banding an older baby. I am the mother of the kiddo that had the surgery recently to correct his plagio. We tried many times to get him into another helmet before finally finding out that surgery was the only way he'd get corrected. I hope that it doesnt come to that for your daughter, especially given what she's already been through. In the meantime, feel free to ask many questions here... so many helpful people here. Kim mom to Jaxson 20 mo CranioCap grad 04/04 Craniotomy to correct plagio 01/10/05 > > My daughter is almost one year old. She has had a very difficult start in life and several > medical issues to deal with. I was told that the surgeon that did her skin graft was very > experienced with using DOC bands and that would likely need to be our next step. > Unfortunately he does not feel that she is stable enough to begin therapy for her head > shape at this time and needs at least six months to heal. Other surgery will be required, > so I am not sure that the traditional bands can be used in her case as she will be close to > two years old by then. When I asked if we would then be out of luck to adress the head > shape issue, I was told " No, it just becomes more complex at that point " . > > I am now wondering what can be done to correct this problem at such a late time? Any > insight you may have would be greatly appreciated. Thanks! > > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Hi Kim, So sorry again about Emilia's rough start. I can see why she developed the range of motion and plagio issues - really no other option. You are so right that range of motion improvement is a long process. With a good PT program and work at home it can be greatly improved. We have quite a few members whose children have had PT, OT and speech - you are not alone. You are wise to start your research early. If you are near a CT you may want to call them and get a consult now (first eval is free). They may have some insight as to things you can do to help prepare. Or they may just be able to help you track any progress. They have a ton of experience with Plagio and range of motion issues. Keep us posted. mom to na DOC Grad South Carolina www.thefilyaws.comemiliasmommy1 <emiliasmommy1@...> wrote: Thank you for your responses!To answer a few questions, here's a bit more information. Emilia was born full term and with no signs of any problems. A few days later we noticed a mark on her head, eventually learning it was a hemangioma (vascular tumor/birthmark). Because of many complications she had been on oral steroids and a chemotherapy drug to try and stop the growth. Eventually things began to improve, except the large open ulcers on her head. Because of these, she was only able to sleep, be heald on one side of her head. This of course has caused the shape problems along with a lot of contracture along her neck when healing finally began. Just over a month ago, Emilia had a skin graft from her butock/thigh to her scalp.We have been working with the early intervention program in our state since August. PT, OT and speech. While we are still hoping that her range of motion will improve, it is likely not a quick fix. Surgery is a possibility later on to fix it as well as multiple other procedures after the graft has time to heal.I guess I am just trying to gather more information at this point so that I am better informed about what options are available. I will continue reading the older posts on this board and gain much insight I'm sure. Thanks again!Kim> > My daughter is almost one year old. She has had a very difficult start in life and several > medical issues to deal with. I was told that the surgeon that did her skin graft was very > experienced with using DOC bands and that would likely need to be our next step. > Unfortunately he does not feel that she is stable enough to begin therapy for her head > shape at this time and needs at least six months to heal. Other surgery will be required, > so I am not sure that the traditional bands can be used in her case as she will be close to > two years old by then. When I asked if we would then be out of luck to adress the head > shape issue, I was told "No, it just becomes more complex at that point". > > I am now wondering what can be done to correct this problem at such a late time? Any > insight you may have would be greatly appreciated. Thanks!> > Kim > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 Hi and welcome to the group. My daughter had 11 mm of cranial vault asymmetry (think X on top of the head). She was conisdered moderate. 17 mm is considered severe. However, inexperienced measurers can be off +/- 5 mm. Don't be alarmed. It is treatable. At your daughter's age the sooner she is banded the better. She's not too old but not getting younger Where are you located? mom to na DOC Grad South Carolina www.thefilyaws.comkstavop <kstavop@...> wrote: Hi - My daugher is 9 months old with Torticollis. We just started physical therapy and have been referred to a Craniofacial clinic. Our appt. is April 22 for measurements and evaluation. Her PT took her measurments and came up with 17(an estimate). Since some of you sound like veterans with this, is this borderline to where she may need a headband? What were your children's measurements?I am all for the headband if it corrects the shape of her head.Thanks.For more plagio info 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.