Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 I am wondering if any of you with a child with plagio have noticed any developmental delays. I am new to all of this and my 7 month old who just get a starband helmet last week is not rolling over yet. She does sit up unassisted. We are having PT come in a few weeks to evaluate her. I just feel totally in the dark about all of this. I thought we had a wonderful pediatrician, but just looking all the postings at this site, she never told us a lot of things. I have been finding out this stuff myself. Thanks for any advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 My DD isn't developmentally delayed but she has floppy muscle tone though she isn't wearing a helmut but I am doing aggressive repo which is working for her since she doesn't have severe plagio . Its great that your LO will be getting an assessment soon. If there are some delays or muscle tone weakness its better to get it taken care of soon as possible so its good to have those gut feelings about your child . I am lucky to have a Ped that listens to what I have to say about my DD's health and she takes the next steps in getting the things I need to set my mind and her mind at ease. Hope that you get all the answers that you need when the PT comes to see your LO. GL with everything.jmandyo <jmandyo@...> wrote: I am wondering if any of you with a child with plagio have noticed any developmental delays. I am new to all of this and my 7 month old who just get a starband helmet last week is not rolling over yet. She does sit up unassisted. We are having PT come in a few weeks to evaluate her. I just feel totally in the dark about all of this. I thought we had a wonderful pediatrician, but just looking all the postings at this site, she never told us a lot of things. I have been finding out this stuff myself. Thanks for any advice. Need a vacation? Get great deals to amazing places on Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 YES My daughter has had plagio since birth and torticolis as well. We went through 2 helmets and then had to have cranial reconstruction surgery. Her developmental was so delayed until her surgery as the brain was under so much pressure by the skull. Once the skull was removed the brain was able to expand and two days later she was talking and walking. At that point she had never done any of those things. So we have experienced it all. Unfortunately Maddie's neck is not fixed and her head has started to move back so we are on a 3 helmet. But her case is fixing to be published in the pediatric neurosurgery journel soon as they are proving that plagio needs to be fixed not for cosmetic purposes but for dev. delays too. Just so you know. Our daughter was born breech emergency Csection 6 wks early. We knew something was wrong once she was born as her head shape was odd but the dr said it would change once she sat up. We started noticing that she would only turn her head one direction. By her 6 months visit she was unable to use her left arm or turn her head to the left. Her doc the entire time said nothing was wrong she would be fine when she sat up. She never sat up til she was 10 months old. She did not walk or talk or make really any sound until her surgery in Oct she was 16 mo. She took her first real step alone unasisted at age 19 months. She has gone to therapy for a little over a year now. At first it was once a wk then it was 3 hours 3 times a week. Lately we have graduated and now we are down from 6 therapist a week to 2 and we are getting ready to let go of another session. We have 26 specialty clinics we see in the military. We have like 5 neurologist. Its crazy but when Maddie was 18 months we did Botox injections in her neck to help with the torticollis and it caused a blood clot the size of a baseball and it almost killed her so if its not one things its another. She has face asymetry from the plagio so we see craniofacial surgeon too. Madison also has PVL Periventricular Leukomalacia which is a long word for not allowing the messages from your brain to get to the rest of your body correctly so she struggles some but she is coming along. She is a really a cutie. I hope I have helped some and if you have any question please email me. I read a lot but don't write often anymore unless I see anything that stands out and when I saw your post I had to jump on because that is exactly what happenned to my Maddie. jmandyo <jmandyo@...> wrote: I am wondering if any of you with a child with plagio have noticed any developmental delays. I am new to all of this and my 7 month old who just get a starband helmet last week is not rolling over yet. She does sit up unassisted. We are having PT come in a few weeks to evaluate her. I just feel totally in the dark about all of this. I thought we had a wonderful pediatrician, but just looking all the postings at this site, she never told us a lot of things. I have been finding out this stuff myself. Thanks for any advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2007 Report Share Posted June 1, 2007 My daughter could roll over but just never did often. She got her DOC band at 7 months and now at 9 months old she is crawling and pulling up all over the place. So to answer your questions in our case we did not have any developmental delays - however we also did not have tort present. Mom to Madison 9 1/2 months Severe Plagio - 3/30/07 DOCjmandyo <jmandyo@...> wrote: I am wondering if any of you with a child with plagio have noticed any developmental delays. I am new to all of this and my 7 month old who just get a starband helmet last week is not rolling over yet. She does sit up unassisted. We are having PT come in a few weeks to evaluate her. I just feel totally in the dark about all of this. I thought we had a wonderful pediatrician, but just looking all the postings at this site, she never told us a lot of things. I have been finding out this stuff myself. Thanks for any advice. Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2007 Report Share Posted June 1, 2007 My son is not delayed. There are some things that my son did later than his peers; however, our pediatrician was not concerned as every baby has their own time table and their is such a huge range of accepted time frames to accomplish different milestones. Other things as to when he started them (some of which seem delayed but the doctor was not concerned in the least).... 4 months roll from tummy to back 6 months sit-up (with assistance) 8 months roll from back to tummy 9 months army crawl 11 months pull-up to stand; get from laying down to sitting up; regular crawl One thing I've noticed with my son is he'll do something a couple times and then won't do it consistently for a few more months (ie. he would roll from back to tummy 2 or 3 x between 6 and 8 months but it wasnt consistent until 8). Another thing if a child is really excelling in language skills then they may not be excelling as much is physical. If you are concerned though then it is definitely worth continuiing PT and asking your ped. Good luck. PS: Another thing, I don't know if the rolling over could be that its not very comfortable. I say this because it was only after the band that my son started to roll over. He wore his band from 7.5- 9.5 months. > I am wondering if any of you with a child with plagio have noticed any > developmental delays. I am new to all of this and my 7 month old who > just get a starband helmet last week is not rolling over yet. She does > sit up unassisted. We are having PT come in a few weeks to evaluate > her. I just feel totally in the dark about all of this. I thought we > had a wonderful pediatrician, but just looking all the postings at this > site, she never told us a lot of things. I have been finding out this > stuff myself. Thanks for any advice. > > > > > > > --------------------------------- > Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's economy) at Games. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2007 Report Share Posted June 1, 2007 I was actually not that worried until people started saying things to me. She sits up just fine by herself and jabbers non stop. We went and got her helmet adjusted today and it goes on much easier and she seems happy with it--that is encouraging! Mandylka_236 <lka_236@...> wrote: My son is not delayed. There are some things that my son did later than his peers; however, our pediatrician was not concerned as every baby has their own time table and their is such a huge range of accepted time frames to accomplish different milestones. Other things as to when he started them (some of which seem delayed but the doctor was not concerned in the least)....4 months roll from tummy to back6 months sit-up (with assistance)8 months roll from back to tummy9 months army crawl11 months pull-up to stand; get from laying down to sitting up; regular crawlOne thing I've noticed with my son is he'll do something a couple times and then won't do it consistently for a few more months (ie. he would roll from back to tummy 2 or 3 x between 6 and 8 months but it wasnt consistent until 8). Another thing if a child is really excelling in language skills then they may not be excelling as much is physical. If you are concerned though then it is definitely worth continuiing PT and asking your ped. Good luck.PS: Another thing, I don't know if the rolling over could be that its not very comfortable. I say this because it was only after the band that my son started to roll over. He wore his band from 7.5-9.5 months.> I am wondering if any of you with a child with plagio have noticed any > developmental delays. I am new to all of this and my 7 month old who > just get a starband helmet last week is not rolling over yet. She does > sit up unassisted. We are having PT come in a few weeks to evaluate > her. I just feel totally in the dark about all of this. I thought we > had a wonderful pediatrician, but just looking all the postings at this > site, she never told us a lot of things. I have been finding out this > stuff myself. Thanks for any advice.> > > > > > > ---------------------------------> Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's economy) at Games.> oneSearch: Finally, mobile search that gives answers, not web links. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2007 Report Share Posted June 1, 2007 Thanks for your note . Maddie's story is amazing. It is also scary that things could go so long before they realized she needed surgery. For other moms in the group I wanted to mention that with tort, there can be developmental delays, but Maddie's case is an exception in that most babies aren't constrained in brain growth, they just grow in funny shapes. If the brain is constrained (cranio) then surgery is needed. For most people physical therapy and banding are sufficient to correct the problems. it is good to keep your eyes out for something more serious, and definitely push your doctor to do more if you're not satified with his/her response. -christine sydney 17 mo starband grad > I am wondering if any of you with a child with plagio have noticed any > developmental delays. I am new to all of this and my 7 month old who > just get a starband helmet last week is not rolling over yet. She does > sit up unassisted. We are having PT come in a few weeks to evaluate > her. I just feel totally in the dark about all of this. I thought we > had a wonderful pediatrician, but just looking all the postings at this > site, she never told us a lot of things. I have been finding out this > stuff myself. Thanks for any advice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2007 Report Share Posted June 1, 2007 That is great that your little one is doing well with the helmet. I know exactly what you mean when people start saying things and then I start to worry (i.e. well should he be doing X?, well so and so's kid does X, etc). From the sounds of it your daughter is right on target for her and that is what is important! Good luck in your helmet journey. Have fun with it...decorate! > > I am wondering if any of you with a child with plagio > have noticed any > > developmental delays. I am new to all of this and my 7 month old > who > > just get a starband helmet last week is not rolling over yet. She > does > > sit up unassisted. We are having PT come in a few weeks to > evaluate > > her. I just feel totally in the dark about all of this. I thought > we > > had a wonderful pediatrician, but just looking all the postings at > this > > site, she never told us a lot of things. I have been finding out > this > > stuff myself. Thanks for any advice. > > > > > > > > > > > > > > --------------------------------- > > Boardwalk for $500? In 2007? Ha! > > Play Monopoly Here and Now (it's updated for today's economy) at > Games. > > > > > > > > > --------------------------------- > oneSearch: Finally, mobile search that gives answers, not web links. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2007 Report Share Posted June 1, 2007 Hi Mandy, Has your daughter been evaluated for torticollis? Does she seem to have any trouble turning left or right? My son also had motor skill delays due to minor torticollis - not much tilt, he just couldn't turn left very well. The doctors kept telling me it was nothing, but by 12 months it had caused quite a few delays as well as facial asymmetries and when we finally got a referral to a pediatric physical therapist she confirmed that he should have been in therapy all along. Had we started earlier it would have been much easier to resolve. Hopefully the evaluation next week will check for tort. Good luck! Sheila, mom to , 21 months > > I am wondering if any of you with a child with plagio > have noticed any > > developmental delays. I am new to all of this and my 7 month old > who > > just get a starband helmet last week is not rolling over yet. She > does > > sit up unassisted. We are having PT come in a few weeks to > evaluate > > her. I just feel totally in the dark about all of this. I thought > we > > had a wonderful pediatrician, but just looking all the postings at > this > > site, she never told us a lot of things. I have been finding out > this > > stuff myself. Thanks for any advice. > > > > > > > > > > > > > > --------------------------------- > > Boardwalk for $500? In 2007? Ha! > > Play Monopoly Here and Now (it's updated for today's economy) at > Games. > > > > > > > > > --------------------------------- > oneSearch: Finally, mobile search that gives answers, not web links. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2007 Report Share Posted June 1, 2007 My son is 7, and was in a DOCband for scaphocephalic/dolchiocephalic (long and narrow) head shape from 6-1/2 months until 11-1/2 months. (He was a breech, C-section). He did things on "his time" -- rolled over around 6-7 months -- did an "army crawl" (belly to floor, scooted with his arms) -- and because he got where he was going, and never seemed to be in distress, we just let him move the way he wanted to. He loved to walk holding hands (around 10 months?) -- and took his first steps on his first b-day. A series of things I've noticed in the last year and a half prompted me to ask for an evaluation for a connective tissue disorder. The pediatrition thought I was a little crazy, possibly, but she gave it to us, and my "gut" was unfortunately correct. He was found to have Ehlers-Danlos Syndrome, which is rare, but which explains a lot -- including his minimal movement in the womb, and his mild low tone, and his really weird head shape, and all of the other "little" things that started occuring in the past year. He's fine now, we just have to watch his joints, and be proactive as he grows.Every baby is on his/her own time table, and it's important to remember that they won't all do things at the same time -- and they may do things in unconventional ways (as a compensation). It's important to be aware of your baby's growth and development, and just ask your pediatrician if you have any concerns. Because every baby is on a different time table, the pediatrician may tell you not to worry, that everything is fine. And it probably is! However, because most of us have been told not to worry about our children's head shape -- we are more aware of other things going on. This hyper-observation isn't a bad thing, as long as we are able to talk to someone who can truly communicate with us. I strongly recommend the book "How Doctors Think" -- which challenges the way that doctors make snap decisions, and who make broad statements. It is written by a doctor, who inteviewed and observed many doctors, and the quick synoposis is that he recommends that patients be informed, and that the doctor/patient relationship be a conversation/relationship (which is hard to get in the world of 10 minute examinations). Write questions down, and star at least 2 or 3 you know you want answers to. If a doctor brushes you off -- calmly ask why he/she has that opinion. Ask when the last research article was read about the issue, or when he/she last attended a conference which the issue was covered, or even when was the last time he/she treated a child with a similar issue. Doctors dismiss Internet research as silly because they put in so many years in to get their degree. 99% of the time they are probably correct with there analysis of an issue, but if there is something in your gut you want more clarification about, initiate a discussion. The key is to be calm, not intimidated or demanding. Practice in front of a mirror (or with your best friend), and anticipate a brush off, so you have a follow-up question/statement. mom to Quinn, born 11/99, DOCband grad 10/00>------- Original Message ------->From : jmandyo[mailto:jmandyo@...]>Sent : 5/31/2007 6:47:57 PM>To : Plagiocephaly >Cc : >Subject : RE: developmental delays>>I am wondering if any of you with a child with plagio have noticed any developmental delays. I am new to all of this and my 7 month old who just get a starband helmet last week is not rolling over yet. She does sit up unassisted. We are having PT come in a few weeks to evaluate her. I just feel totally in the dark about all of this. I thought we had a wonderful pediatrician, but just looking all the postings at this site, she never told us a lot of things. I have been finding out this stuff myself. Thanks for any advice.For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2007 Report Share Posted June 2, 2007 Hi Sheila, As far as I know she does not have tort. Most people tell me she will roll over when she wants to, but this being my first child, I am nervous. She is teething right now and with the new helmet things have been very stressful around here! MandySheila <lotspeis@...> wrote: Hi Mandy,Has your daughter been evaluated for torticollis? Does she seem to have any trouble turning left or right? My son also had motor skill delays due to minor torticollis - not much tilt, he just couldn't turn left very well. The doctors kept telling me it was nothing, but by 12 months it had caused quite a few delays as well as facial asymmetries and when we finally got a referral to a pediatric physical therapist she confirmed that he should have been in therapy all along. Had we started earlier it would have been much easier to resolve. Hopefully the evaluation next week will check for tort. Good luck!Sheila, mom to , 21 months> > I am wondering if any of you with a child with plagio > have noticed any > > developmental delays. I am new to all of this and my 7 month old > who > > just get a starband helmet last week is not rolling over yet. She > does > > sit up unassisted. We are having PT come in a few weeks to > evaluate > > her. I just feel totally in the dark about all of this. I thought > we > > had a wonderful pediatrician, but just looking all the postings at > this > > site, she never told us a lot of things. I have been finding out > this > > stuff myself. Thanks for any advice.> > > > > > > > > > > > > > ---------------------------------> > Boardwalk for $500? In 2007? Ha! > > Play Monopoly Here and Now (it's updated for today's economy) at > Games.> >> > > > > > > ---------------------------------> oneSearch: Finally, mobile search that gives answers, not web links.> Expecting? Get great news right away with email Auto-Check.Try the Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Reagan- I am also a psychologist and was thinking about research in this area- as I have become so frustrated with the inconclusive research. Do you have access to a clinical population (beyond this group)? If you want to brainstorm together I would be interested if we could get our hands on some records this could be an decent retrospective design. Quote Link to comment Share on other sites More sharing options...
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