Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Oy, yes, we hear this from my extended family but not so much from my in-laws, thank goodness. We've also heard it from personnel at Sasha's school -- last day of second grade today, hooray! It's annoying, but what can we do? It's hard to understand, truly, unless one can walk in our shoes. T mom of Sasha, 7 (and Gena, 5) At 04:35 AM 6/17/2005 +0000, you wrote: > B, >Thank you for your response. > >As far as the " clearance " thing...he was meaning that my son could >never have a goverment job. > >My son is very special and knowing now about his AS and having a >wonderful therapist has helped me appreciate ny's view of the >world. It also has helped make those not so nice remakes about my >baby boy and my parenting ablities not hurt so much. > >I do have one question though......has anyone else has someone tell >them that they are just looking for an excuse for their child's >behavior? sorry just a little bothered by the in-laws comments. > >Mandi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2005 Report Share Posted June 20, 2005 Thank you everyone for the responses. Sometimes I feel soo alone and that no one else is going through it. I have just decided I am not going to discuss anything about his AS or his treatment with them. He does tell everyone that he goes to therapy and when they look at me I just get busy doing something else and let my husband handle his family. Thank you all again.... Mandi M. No. CA Haili-9-Heart condition -6-ADHD ny-4-AS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Welcome Darren and ... Hope you find this to be a good place for information and encouragement...I think there are others on the list from UK. Looking forward to getting to know you and your family better...jump in to the conversation... Blessings, Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2005 Report Share Posted July 17, 2005 Delmar, We are from Lancaster County and we see Larry , DO in Lansdale, PA (215-412-4910). He is a family practice physician and also a DAN doctor. He is also treating a child with autism. He is wonderful, compassionate physician who listens to his patients. Another plus is he is a covered provider by our BC/BS insurance. Here are some readings on questions on finding a physician: http://home.earthlink.net/~moriam/HOW_TO_find_doctor.html Most of us get our hair elements testing done through DDI since they have the largest data base and Andy Cutler has developed 'counting rules' to determine the probability of mineral transport derangement based on heavy metal toxicity. Read more here: http://home.earthlink.net/~moriam/HOW_TO_hair_test.html If you want more information about Dr. , please feel free to e-mail me offlist at ( jhines @ ptd.net ) without the spaces before and after the @. I believe that I corresponded with your wife through Generation Rescue. This list has a lot of wonderful information to help you heal your son. I have learned a lot and continue to learn from these wonderful people! Jackie--- > Greetings! We are new to this group. We have a 3 year old son that has > been diagnosed with autism. In our searching journey, we discovered that > he > has a high level of lead, first through blood testing and then through > hair > testing. We have developed a home program of therapy for him, following > the > Lovus method somewhat. We are currently chelating him using an oral > chelation product. We haven't seen a huge improvement yet, but are > assuming > that it will take time. We are considering trying to find a DAN doctor > that > will be able to assist us in finding out whether he has mercury poisoning > also. He did have some of his shots, but we got cold feet before he had > all > his shots. So there is a possibility of mercury poisoning. We are > looking > for all the info we can get as it relates to finding a good DAN doctor as > local as possible. Looking forward to learning and sharing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2005 Report Share Posted July 17, 2005 Delmar, Welcome! You might want to spend several weeks just looking in the files section of this group. I've been on this list for five years and there is tons of information. Barb [ ] New to group > > Greetings! We are new to this group. We have a 3 year old son that has > been diagnosed with autism. In our searching journey, we discovered that > he > has a high level of lead, first through blood testing and then through > hair > testing. We have developed a home program of therapy for him, following > the > Lovus method somewhat. We are currently chelating him using an oral > chelation product. We haven't seen a huge improvement yet, but are > assuming > that it will take time. We are considering trying to find a DAN doctor > that > will be able to assist us in finding out whether he has mercury poisoning > also. He did have some of his shots, but we got cold feet before he had > all > his shots. So there is a possibility of mercury poisoning. We are > looking > for all the info we can get as it relates to finding a good DAN doctor as > local as possible. Looking forward to learning and sharing. > > Delmar > > > > Thanks! > > Delmar & Martha Binkley > Email: walcom@... > 236 Deep Run Road > Myerstown, PA 17067 > Phone/Fax: 717-933-8094 > If calling about our > long distance service use > Phone/Fax: 1-866-616-7435 > > > Outgoing mail is Virus Scanned byNorman Data Defense. Inbound Spam > reduced 98.2% byVircom Sieve. > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2005 Report Share Posted July 17, 2005 Welcome to the list. What chelation product are you using. DMSA is used to chelate lead but with Andy's recommended dosing and schedule in case he also has mercury. If you had the hair element testing done through DDI you can post it here (including colors and over or under) or apply the counting rules found in the FAQs of this list. S S <tt> <BR> Greetings! We are new to this group. We have a 3 year old son that has<BR> been diagnosed with autism. In our searching journey, we discovered that he<BR> has a high level of lead, first through blood testing and then through hair<BR> testing. We have developed a home program of therapy for him, following the<BR> Lovus method somewhat. We are currently chelating him using an oral<BR> chelation product. We haven't seen a huge improvement yet, but are assuming<BR> that it will take time. We are considering trying to find a DAN doctor that<BR> will be able to assist us in finding out whether he has mercury poisoning<BR> also. He did have some of his shots, but we got cold feet before he had all<BR> his shots. So there is a possibility of mercury poisoning. We are looking<BR> for all the info we can get as it relates to finding a good DAN doctor as<BR> local as possible. Looking forward to learning and sharing. <BR> <BR> Delmar<BR> <BR> <BR> <BR> Thanks!<BR> <BR> Delmar & Martha Binkley<BR> Email: walcom@...<BR> 236 Deep Run Road<BR> Myerstown, PA 17067<BR> Phone/Fax: 717-933-8094<BR> If calling about our <BR> long distance service use <BR> Phone/Fax: 1-866-616-7435<BR> <BR> <BR> Outgoing mail is Virus Scanned byNorman Data Defense.       Inbound Spam reduced 98.2% byVircom Sieve.       <BR> </tt> <!-- |**|begin egp html banner|**| --> <br><br> <tt> =======================================================<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2005 Report Share Posted July 19, 2005 Larraine Kember <larrydot@...> wrote: Hello Everyone, My name is Larraine and my son is diagnosed Aspergers with autistic tendencies, and they are ruling out bipolar (even though he is taking medication for it). He also las learning disabilities. He's a wonderful boy and I am looking for ideas and support from anyone. We have just recently been approved for services from Regional Center (after trying for almost 2 years) and they are providing, in addition to other things, respite care. This is all new to me as I've always taken care of him, but the break will be nice and a good chance to spend some one on one time with my daughter. I look forward to reading the messages here. Thank you! Larraine Hi Larraine, What an interesting name you have! Glad you found us and feel free to jump in and join us. Sounds like you are on the right track in getting some help as well! Roxanna ô¿ô Don't take life too seriously; No one gets out alive. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2005 Report Share Posted July 19, 2005 darren chapman <bonzia1975@...> wrote:hi everyone ive just joined this group as we have just found the my son josh has asperfers syndrome im not shocked that he has some form of autism or learning problems just now have a name for it im from crawley in west sussex uk is anyone else from around my area or know of any groups that are regards darren and tracey Welcome Darren and Tracey! We do have a few people from England hanging out here from time to time. Feel free to join in the conversation here anytime! Roxanna ô¿ô Don't take life too seriously; No one gets out alive. --------------------------------- Start your day with - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2005 Report Share Posted July 24, 2005 Hi Randi, By " mainstreamed " , do you mean it as it's used in education, or do you mean " recovered " -- as in physically recovered and indestinguishable from a typically developing child? Either way, the answer to your question is yes, but it's a road that takes a lot of patience and requires a lot of support. And as all children are different, they do not all respond the same way to treatment. But I know of several who have completely recovered. And they are all boys. Just like the " autistic " population is primarily boys, the bulk of Dr. Goldberg's patients are boys, too. My son is 7.5. He has been in treatment with Dr. Goldberg for a little over three years. When he started treatment, in addition to his " autistic " behaviors, he was a sick little boy -- he had major yeast problems, latent retroviral activity, frequent viral and bacterial infections, a low Natural Killer cell count, multiple food sensitivities, and more. His complexion was pale and he had dark circles under his eyes. These are typical of the physical markers that our children have. Under Dr. G's treatment, my son is now *physically* recovered, with none of these conditions present in his body. He has regained the sparkle he had when he was an infant, his color is good and the dark circles are gone! His brain still has a lot of catching up to do, however, and this takes a longer than the physical recovery. We still have a lot of work to do with him to get him caught up, emotionally and behaviorally, with his typical peers, but this fall he will be fully included in a regular education classroom for the first time! He is going to regular summer camp right now, three days a week, and having the time of his life. A year ago, he couldn't have been included in either of these, even with an aide. It hasn't been easy, to say the very least. It's been a wild, bumpy, roller-coaster ride, and I don't like roller-coasters!! But with loving support from my family, and great moral support and information from this group, we've been able to stick with it, and it's paid off. Hope that helps, and best wishes , Donna > has anyone goten mainstreamed using dr. goldberg prodcol. i only seem > to meet girls mot many boys if you could anwer this fior me. I son is > already six and we have done THe dan(cleation) nothing and we are > thinking of Dr. goldberg but i seem to think he gets girls better. it > this true. thanks randi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2005 Report Share Posted July 24, 2005 Dear Randi, Our son has been mainstreamed for several years now. He is currently 10.5, and we've been with Dr. Goldberg for eight years. We know of several other boys (one very personally, a good family friend) whose recoveries have similar components, so feel free to contact me personally if you wish for more information. Warren new to group has anyone goten mainstreamed using dr. goldberg prodcol. i only seem to meet girls mot many boys if you could anwer this fior me. I son is already six and we have done THe dan(cleation) nothing and we are thinking of Dr. goldberg but i seem to think he gets girls better. it this true. thanks randi Responsibility for the content of this message lies strictly with the original author(s), and is not necessarily endorsed by or the opinion of the Research Institute. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 Donna and I are raising the same kids. My son is 5 1/2 and starts kindergarten next month....public school, regular old classroom, all- day every day. Bumpy ride yes, but with a general trend always pointed up. > > has anyone goten mainstreamed using dr. goldberg prodcol. i only > seem > > to meet girls mot many boys if you could anwer this fior me. I son > is > > already six and we have done THe dan(cleation) nothing and we are > > thinking of Dr. goldberg but i seem to think he gets girls better. > it > > this true. thanks randi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 I would just say Ditto to what Donna said for my older son and my younger son is completely recovered. Praise god for Dr G. Jerri Message: 2 Date: Sun, 24 Jul 2005 17:05:15 -0000 From: " Donna B. " <donnaaron@...> Subject: Re: new to group Hi Randi, By " mainstreamed " , do you mean it as it's used in education, or do you mean " recovered " -- as in physically recovered and indestinguishable from a typically developing child? Either way, the answer to your question is yes, but it's a road that takes a lot of patience and requires a lot of support. And as all children are different, they do not all respond the same way to treatment. But I know of several who have completely recovered. And they are all boys. Just like the " autistic " population is primarily boys, the bulk of Dr. Goldberg's patients are boys, too. My son is 7.5. He has been in treatment with Dr. Goldberg for a little over three years. When he started treatment, in addition to his " autistic " behaviors, he was a sick little boy -- he had major yeast problems, latent retroviral activity, frequent viral and bacterial infections, a low Natural Killer cell count, multiple food sensitivities, and more. His complexion was pale and he had dark circles under his eyes. These are typical of the physical markers that our children have. Under Dr. G's treatment, my son is now *physically* recovered, with none of these conditions present in his body. He has regained the sparkle he had when he was an infant, his color is good and the dark circles are gone! His brain still has a lot of catching up to do, however, and this takes a longer than the physical recovery. We still have a lot of work to do with him to get him caught up, emotionally and behaviorally, with his typical peers, but this fall he will be fully included in a regular education classroom for the first time! He is going to regular summer camp right now, three days a week, and having the time of his life. A year ago, he couldn't have been included in either of these, even with an aide. It hasn't been easy, to say the very least. It's been a wild, bumpy, roller-coaster ride, and I don't like roller-coasters!! But with loving support from my family, and great moral support and information from this group, we've been able to stick with it, and it's paid off. Hope that helps, and best wishes , Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Hi , Welcome to the group. photos is acting up, we're not sure why no one can upload pics. Keep trying hopefully it will be fixed soon. 3 months is still a very young age. Have a look in the files section under repositioning. We have tons of advice. With 3 under 3 it may be difficult. The AAP usually recommends repo until 5 months. I would start recording his headshape with pictures. Take them from aerial view, each side, front and back. Try to get the same angle each time. Repeat every 2-4 weeks. Also, note your repo efforts in a journal, with pictures (ie pictures of tummy time and sleep positioning, etc), receipts of repo products. These items can help you with insurance. If your son has been diagnosed with plagio it is not a cosmetic condition. It is an abnormality in the headshape. Your repo efforts will be hampered by his tort. Did they give you some at home stretches and strengthening ideas? or is he going to be in PT? Also in the files section we have some tips. Tummy time is key! We also have tips for fighting insurance. Repo Headquarters (if morr than one line you will have to copy & paste) Plagiocephaly/files/Repositioning% 20Headquarters/ Torticollis Help Plagiocephaly/files/Torticollis% 20Help/ Insurance Help Plagiocephaly/files/Insurance% 20Help/ Look at the 1st step for insurance document. I can't wait to see pictures. mom to na, 2 yrs (DOC Grad) & Kiersten, 2 months (Preventative Repo) www.thefilyaws.com > Hey everyone!!! I just found this group via my aunt, she sent me the > link. My son Aiden (3 months old) has Torticollis and plagio. The > doctor and the physical therapist keeps telling us that it will take > time but it will go back to its original shape. Well it has been > almost a month since we have been doing the stretchs and repositioning > and his head is just the same maybe even worse. Now what do we do? We > have an HMO which will not cover a band/helmet because it is considered > cosmetic. Any ideas? I tried to make a photo album with some pictures > but it would not work for some reason ( > > > Mommie to Three Boys under three!!! > Ethan, Connor and Aiden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Welcome , My name is Cheryl and I live in Southern CA. My daughter McKenzie is 8 1/2 months and we are getting our starband on Thursday. We also have HMO (Kaiser) Who did not cover the band. BUT they did refer us to an outside orthopedic who speicalizes in bands and casting that does it for half price for pateints that do not have insurance that will cover it. It still cost 1554.00 But it is better than full price. Maybe you can ask your Dr's or Ortho if they know of anything in your area that will do the same. I look forward to seeing the pictures of your little one once you are able to download them. It sounds like you have your hand full with 3 little boys. I have one boy and a girl and the boy is ALOT more work...(right now that is) Take care and Good luck. Cheryl Mother of McKenzie 8 1/2 months Starband on Aug 11th OLeary <seanliz2000@...> wrote: Hey everyone!!! I just found this group via my aunt, she sent me the link. My son Aiden (3 months old) has Torticollis and plagio. The doctor and the physical therapist keeps telling us that it will take time but it will go back to its original shape. Well it has been almost a month since we have been doing the stretchs and repositioning and his head is just the same maybe even worse. Now what do we do? We have an HMO which will not cover a band/helmet because it is considered cosmetic. Any ideas? I tried to make a photo album with some pictures but it would not work for some reason ( Mommie to Three Boys under three!!!Ethan, Connor and Aiden__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Welcome , My name is Cheryl and I live in Southern CA. My daughter McKenzie is 8 1/2 months and we are getting our starband on Thursday. We also have HMO (Kaiser) Who did not cover the band. BUT they did refer us to an outside orthopedic who speicalizes in bands and casting that does it for half price for pateints that do not have insurance that will cover it. It still cost 1554.00 But it is better than full price. Maybe you can ask your Dr's or Ortho if they know of anything in your area that will do the same. I look forward to seeing the pictures of your little one once you are able to download them. It sounds like you have your hand full with 3 little boys. I have one boy and a girl and the boy is ALOT more work...(right now that is) Take care and Good luck. Cheryl Mother of McKenzie 8 1/2 months Starband on Aug 11th OLeary <seanliz2000@...> wrote: Hey everyone!!! I just found this group via my aunt, she sent me the link. My son Aiden (3 months old) has Torticollis and plagio. The doctor and the physical therapist keeps telling us that it will take time but it will go back to its original shape. Well it has been almost a month since we have been doing the stretchs and repositioning and his head is just the same maybe even worse. Now what do we do? We have an HMO which will not cover a band/helmet because it is considered cosmetic. Any ideas? I tried to make a photo album with some pictures but it would not work for some reason ( Mommie to Three Boys under three!!!Ethan, Connor and Aiden__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Cheryl, I am so glad to finally read that someone else is in California. I am also waiting to hear how McKenzie's fitting goes Thursday because our kids are so similar. My Aidan will be 8 1/2 months (7 adjusted) at his fitting on the 15th and he's also getting a starband. I'm glad to know that someone may be having the same issues at the same time with the same aged infant. > Hey everyone!!! I just found this group via my aunt, she sent me the > link. My son Aiden (3 months old) has Torticollis and plagio. The > doctor and the physical therapist keeps telling us that it will take > time but it will go back to its original shape. Well it has been > almost a month since we have been doing the stretchs and repositioning > and his head is just the same maybe even worse. Now what do we do? We > have an HMO which will not cover a band/helmet because it is considered > cosmetic. Any ideas? I tried to make a photo album with some pictures > but it would not work for some reason ( > > > Mommie to Three Boys under three!!! > Ethan, Connor and Aiden > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Hi ~ The error message I get when I try to add an album says NOTADD Any idea what that means??? Anyways yes he is in pt once a week and I also do stretchs with him at home 6-7 times a day. We are doing the repostioning when he sleeps by using a side sleeper for the other side. His tort is getting a little better but I am sure he has plagio because of it, it looks like someone just took the side of his head and pushed it forward. Also his soft spot is almost closed up? The doctor says its normal but I think he is a little young. He was also early so really he's 2 months. Anywho I guess I will just keep with the stretchs and pt. Thank, Mommie to Three Boys under Three Ethan, Connor, and Aiden > > Hey everyone!!! I just found this group via my aunt, she sent me > the > > link. My son Aiden (3 months old) has Torticollis and plagio. The > > doctor and the physical therapist keeps telling us that it will take > > time but it will go back to its original shape. Well it has been > > almost a month since we have been doing the stretchs and > repositioning > > and his head is just the same maybe even worse. Now what do we do? > We > > have an HMO which will not cover a band/helmet because it is > considered > > cosmetic. Any ideas? I tried to make a photo album with some > pictures > > but it would not work for some reason ( > > > > > > Mommie to Three Boys under three!!! > > Ethan, Connor and Aiden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Hi Cheryl and , We too are in Southern California, SD, to be exact. We are getting our DOC band next Thurs. Our insurance is not paying either, our first appeal was denied yesterday. However, we will keep trying. I have heard that the " cosmetic argument " is sometimes possible to " beat " since there is some research supporting the medical ramifications of uncorrected plagiocephaly. Anyway, good luck with the band. Kellie > > Hey everyone!!! I just found this group via my aunt, she sent me > the > > link. My son Aiden (3 months old) has Torticollis and plagio. The > > doctor and the physical therapist keeps telling us that it will > take > > time but it will go back to its original shape. Well it has been > > almost a month since we have been doing the stretchs and > repositioning > > and his head is just the same maybe even worse. Now what do we > do? We > > have an HMO which will not cover a band/helmet because it is > considered > > cosmetic. Any ideas? I tried to make a photo album with some > pictures > > but it would not work for some reason ( > > > > > > Mommie to Three Boys under three!!! > > Ethan, Connor and Aiden > > > > > > > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Hi Cheryl and , We too are in Southern California, SD, to be exact. We are getting our DOC band next Thurs. Our insurance is not paying either, our first appeal was denied yesterday. However, we will keep trying. I have heard that the " cosmetic argument " is sometimes possible to " beat " since there is some research supporting the medical ramifications of uncorrected plagiocephaly. Anyway, good luck with the band. Kellie > > Hey everyone!!! I just found this group via my aunt, she sent me > the > > link. My son Aiden (3 months old) has Torticollis and plagio. The > > doctor and the physical therapist keeps telling us that it will > take > > time but it will go back to its original shape. Well it has been > > almost a month since we have been doing the stretchs and > repositioning > > and his head is just the same maybe even worse. Now what do we > do? We > > have an HMO which will not cover a band/helmet because it is > considered > > cosmetic. Any ideas? I tried to make a photo album with some > pictures > > but it would not work for some reason ( > > > > > > Mommie to Three Boys under three!!! > > Ethan, Connor and Aiden > > > > > > > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 , Welcome to the group! Liliana is NOT to old to be banded. It sounds like she has pretty significant brachy by your description and I'd ask your pediatrician for a helmet prescription and get her banded ASAP. Where do you live? I'm sure someone lives closeby that can recommend a place to you. Check out this link: http://www.cranialtech.com/treatment/casef.html It is a baby who was banded at 19.5 mos of age and he had excellent results still. It is definitely not desirable to wait that long, but I just wanted to show you that correction is possible at her age. Don't give up! , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.typepad.com > Hi. > My daughter Liliana is 10 1/2 months old. The back of her head is very > flat all the way across. Her pediatrician says her head won't round > out and that it's too late for banding. We tried repositioning at 4 to > 6 months but it didn't work. > > She's not crawling yet but the pediatrician says this is not related > to plagio, but the fact that her head is larger than average for her > body. > > Around six months she had a CT scan and it ruled out craniosynistosis > and torticollis but the neuro did say the flatness was " fairly > significant. " > > Upon recommendation from her pediatrician, I'm scheduling another > appointment with a neurologist to make sure there's nothing medically > preventing her from crawling at this point. > > Right now I feel so terrible for letting my daughter's head go flat. I > tried repositioning, but I can't say I was aggressive with my efforts. > I didn't force tummy time because she cried inconsolably, to the point > of falling asleep, even when I was doing it for 5 minute increments at > a time. > > I am glad there are other babies out there with plagio. I am worried > that she will be made fun of in school. With baby #2, we will do much > more tummy time, but how do I explain to my daughter that I just > didn't know enough when she was an infant? I heard " back to sleep, > tummy to play " but didn't realize that tummy time is to prevent > flattening as much as it is for developing upper body strength. > > Thanks for having a support group to help us out. > ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 , Welcome to the group! Liliana is NOT to old to be banded. It sounds like she has pretty significant brachy by your description and I'd ask your pediatrician for a helmet prescription and get her banded ASAP. Where do you live? I'm sure someone lives closeby that can recommend a place to you. Check out this link: http://www.cranialtech.com/treatment/casef.html It is a baby who was banded at 19.5 mos of age and he had excellent results still. It is definitely not desirable to wait that long, but I just wanted to show you that correction is possible at her age. Don't give up! , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.typepad.com > Hi. > My daughter Liliana is 10 1/2 months old. The back of her head is very > flat all the way across. Her pediatrician says her head won't round > out and that it's too late for banding. We tried repositioning at 4 to > 6 months but it didn't work. > > She's not crawling yet but the pediatrician says this is not related > to plagio, but the fact that her head is larger than average for her > body. > > Around six months she had a CT scan and it ruled out craniosynistosis > and torticollis but the neuro did say the flatness was " fairly > significant. " > > Upon recommendation from her pediatrician, I'm scheduling another > appointment with a neurologist to make sure there's nothing medically > preventing her from crawling at this point. > > Right now I feel so terrible for letting my daughter's head go flat. I > tried repositioning, but I can't say I was aggressive with my efforts. > I didn't force tummy time because she cried inconsolably, to the point > of falling asleep, even when I was doing it for 5 minute increments at > a time. > > I am glad there are other babies out there with plagio. I am worried > that she will be made fun of in school. With baby #2, we will do much > more tummy time, but how do I explain to my daughter that I just > didn't know enough when she was an infant? I heard " back to sleep, > tummy to play " but didn't realize that tummy time is to prevent > flattening as much as it is for developing upper body strength. > > Thanks for having a support group to help us out. > ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Hi , It's not too late for the helmet, don't let them tell you it is. Doctors have little if any training in this area from what I've seen and heard. You have plenty of time, my son began wearing his Star band helmet earlier about 7 months but getting the helmet was delayed because the doctors kept telling us he'll be fine and outgrow the flatness but I finally decided the doctors had no clue and went to see an Orthodist myself and he confirmed my fears. My son will probably wear it for about 6 months but I thank god I didn't listen to the doctors. He's delayed in a few areas but with the helmet and physical therapy I know he will catch and have began to see improvements already. We have friends that have kids who didn't realize their kids had plagiocephaly until they were about 14 months and the helmet worked for their kids so don't give up, there are things you can do. Sounds like your baby has brachycephaly, I would request a referral to an Orthopedic Surgeon to have it diagnosed, print out info and pictures from the web to prove your concerns and be aggressive in requesting they give you a referral to an Orthodist who can fit the baby for a helmet, that's what I did. We had to fight with our insurance company but in the end they paid the $3000 for the Star Band and referred us to physical therapy. Depending on where you live there should be several local Orthodists you can see. Cranial Technologies is in several states also. It will take time and lots of effort on your part but it can be done and your baby will be ok once the helmet does its magic!!! Best of luck, Lina mommy to little Jimmy new to group Hi. My daughter Liliana is 10 1/2 months old. The back of her head is very flat all the way across. Her pediatrician says her head won't round out and that it's too late for banding. We tried repositioning at 4 to 6 months but it didn't work. She's not crawling yet but the pediatrician says this is not related to plagio, but the fact that her head is larger than average for her body. Around six months she had a CT scan and it ruled out craniosynistosis and torticollis but the neuro did say the flatness was " fairly significant. " Upon recommendation from her pediatrician, I'm scheduling another appointment with a neurologist to make sure there's nothing medically preventing her from crawling at this point. Right now I feel so terrible for letting my daughter's head go flat. I tried repositioning, but I can't say I was aggressive with my efforts. I didn't force tummy time because she cried inconsolably, to the point of falling asleep, even when I was doing it for 5 minute increments at a time. I am glad there are other babies out there with plagio. I am worried that she will be made fun of in school. With baby #2, we will do much more tummy time, but how do I explain to my daughter that I just didn't know enough when she was an infant? I heard " back to sleep, tummy to play " but didn't realize that tummy time is to prevent flattening as much as it is for developing upper body strength. Thanks for having a support group to help us out. ~ For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Hi , It's not too late for the helmet, don't let them tell you it is. Doctors have little if any training in this area from what I've seen and heard. You have plenty of time, my son began wearing his Star band helmet earlier about 7 months but getting the helmet was delayed because the doctors kept telling us he'll be fine and outgrow the flatness but I finally decided the doctors had no clue and went to see an Orthodist myself and he confirmed my fears. My son will probably wear it for about 6 months but I thank god I didn't listen to the doctors. He's delayed in a few areas but with the helmet and physical therapy I know he will catch and have began to see improvements already. We have friends that have kids who didn't realize their kids had plagiocephaly until they were about 14 months and the helmet worked for their kids so don't give up, there are things you can do. Sounds like your baby has brachycephaly, I would request a referral to an Orthopedic Surgeon to have it diagnosed, print out info and pictures from the web to prove your concerns and be aggressive in requesting they give you a referral to an Orthodist who can fit the baby for a helmet, that's what I did. We had to fight with our insurance company but in the end they paid the $3000 for the Star Band and referred us to physical therapy. Depending on where you live there should be several local Orthodists you can see. Cranial Technologies is in several states also. It will take time and lots of effort on your part but it can be done and your baby will be ok once the helmet does its magic!!! Best of luck, Lina mommy to little Jimmy new to group Hi. My daughter Liliana is 10 1/2 months old. The back of her head is very flat all the way across. Her pediatrician says her head won't round out and that it's too late for banding. We tried repositioning at 4 to 6 months but it didn't work. She's not crawling yet but the pediatrician says this is not related to plagio, but the fact that her head is larger than average for her body. Around six months she had a CT scan and it ruled out craniosynistosis and torticollis but the neuro did say the flatness was " fairly significant. " Upon recommendation from her pediatrician, I'm scheduling another appointment with a neurologist to make sure there's nothing medically preventing her from crawling at this point. Right now I feel so terrible for letting my daughter's head go flat. I tried repositioning, but I can't say I was aggressive with my efforts. I didn't force tummy time because she cried inconsolably, to the point of falling asleep, even when I was doing it for 5 minute increments at a time. I am glad there are other babies out there with plagio. I am worried that she will be made fun of in school. With baby #2, we will do much more tummy time, but how do I explain to my daughter that I just didn't know enough when she was an infant? I heard " back to sleep, tummy to play " but didn't realize that tummy time is to prevent flattening as much as it is for developing upper body strength. Thanks for having a support group to help us out. ~ For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 , Welcome! You are definatly not alone here! We all felt the guilt in the begining, but how could you prevent something that you didn't know anything about?! Don't feel like that!! My son is 9 1/2 months right now and has been in his helmet for 7 1/2 weeks now, and we're already seeing a major difference, and 10 months is NOT too old!! Most places will band up to a year, and some even longer than that! You should check out Cranial Technologies website (the link that sent you). They band older babies as well. We take my son there for treatment to the Chicago clinic, we live in southern IN, so it's a very long drive to get there and we stay over night, but let me tell you it's been totally worth it! Lacy Waydon's mom 9 1/2 months 7 1/2 weeks DOCband > Hi. > My daughter Liliana is 10 1/2 months old. The back of her head is very > flat all the way across. Her pediatrician says her head won't round > out and that it's too late for banding. We tried repositioning at 4 to > 6 months but it didn't work. > > She's not crawling yet but the pediatrician says this is not related > to plagio, but the fact that her head is larger than average for her > body. > > Around six months she had a CT scan and it ruled out craniosynistosis > and torticollis but the neuro did say the flatness was " fairly > significant. " > > Upon recommendation from her pediatrician, I'm scheduling another > appointment with a neurologist to make sure there's nothing medically > preventing her from crawling at this point. > > Right now I feel so terrible for letting my daughter's head go flat. I > tried repositioning, but I can't say I was aggressive with my efforts. > I didn't force tummy time because she cried inconsolably, to the point > of falling asleep, even when I was doing it for 5 minute increments at > a time. > > I am glad there are other babies out there with plagio. I am worried > that she will be made fun of in school. With baby #2, we will do much > more tummy time, but how do I explain to my daughter that I just > didn't know enough when she was an infant? I heard " back to sleep, > tummy to play " but didn't realize that tummy time is to prevent > flattening as much as it is for developing upper body strength. > > Thanks for having a support group to help us out. > ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 , Welcome! You are definatly not alone here! We all felt the guilt in the begining, but how could you prevent something that you didn't know anything about?! Don't feel like that!! My son is 9 1/2 months right now and has been in his helmet for 7 1/2 weeks now, and we're already seeing a major difference, and 10 months is NOT too old!! Most places will band up to a year, and some even longer than that! You should check out Cranial Technologies website (the link that sent you). They band older babies as well. We take my son there for treatment to the Chicago clinic, we live in southern IN, so it's a very long drive to get there and we stay over night, but let me tell you it's been totally worth it! Lacy Waydon's mom 9 1/2 months 7 1/2 weeks DOCband > Hi. > My daughter Liliana is 10 1/2 months old. The back of her head is very > flat all the way across. Her pediatrician says her head won't round > out and that it's too late for banding. We tried repositioning at 4 to > 6 months but it didn't work. > > She's not crawling yet but the pediatrician says this is not related > to plagio, but the fact that her head is larger than average for her > body. > > Around six months she had a CT scan and it ruled out craniosynistosis > and torticollis but the neuro did say the flatness was " fairly > significant. " > > Upon recommendation from her pediatrician, I'm scheduling another > appointment with a neurologist to make sure there's nothing medically > preventing her from crawling at this point. > > Right now I feel so terrible for letting my daughter's head go flat. I > tried repositioning, but I can't say I was aggressive with my efforts. > I didn't force tummy time because she cried inconsolably, to the point > of falling asleep, even when I was doing it for 5 minute increments at > a time. > > I am glad there are other babies out there with plagio. I am worried > that she will be made fun of in school. With baby #2, we will do much > more tummy time, but how do I explain to my daughter that I just > didn't know enough when she was an infant? I heard " back to sleep, > tummy to play " but didn't realize that tummy time is to prevent > flattening as much as it is for developing upper body strength. > > Thanks for having a support group to help us out. > ~ Quote Link to comment Share on other sites More sharing options...
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