Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Hi, Welcome to the group! Keep us posted on your son's progress. --- In Plagiocephaly , " davemarkcourt " <snmccomb@s...> wrote: > > What a great site. It is a relief to know there are other children > out there with the same condition as our son. We are from Toronto, ON > and were fitted with a helmet at the Hospital for Sick Children. Our > son has been in the helmet for a few days now and it doesn't seem to > bother him. He is now 7 months old (was 5 weeks premature). We had > been asking our doctor about his flat head since he was six weeks old > and she advised that it would go away. It never did. > > Look forward to sharing stories, progress, etc. with you all. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Hi, Welcome to the group! Keep us posted on your son's progress. --- In Plagiocephaly , " davemarkcourt " <snmccomb@s...> wrote: > > What a great site. It is a relief to know there are other children > out there with the same condition as our son. We are from Toronto, ON > and were fitted with a helmet at the Hospital for Sick Children. Our > son has been in the helmet for a few days now and it doesn't seem to > bother him. He is now 7 months old (was 5 weeks premature). We had > been asking our doctor about his flat head since he was six weeks old > and she advised that it would go away. It never did. > > Look forward to sharing stories, progress, etc. with you all. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 , we are also from Mississauga. Our son's head also got a lot better on its own with repositioning, however, we feared we would run out of time (the fontanale would close) to correct it by repositioning and opted for the helmet. We are seeing Trevor at Sick Kids. They are great there. > What a great site. It is a relief to know there are other children > out there with the same condition as our son. We are from Toronto, ON > and were fitted with a helmet at the Hospital for Sick Children. Our > son has been in the helmet for a few days now and it doesn't seem to > bother him. He is now 7 months old (was 5 weeks premature). We had > been asking our doctor about his flat head since he was six weeks old > and she advised that it would go away. It never did. > > Look forward to sharing stories, progress, etc. with you all. > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 , we are also from Mississauga. Our son's head also got a lot better on its own with repositioning, however, we feared we would run out of time (the fontanale would close) to correct it by repositioning and opted for the helmet. We are seeing Trevor at Sick Kids. They are great there. > What a great site. It is a relief to know there are other children > out there with the same condition as our son. We are from Toronto, ON > and were fitted with a helmet at the Hospital for Sick Children. Our > son has been in the helmet for a few days now and it doesn't seem to > bother him. He is now 7 months old (was 5 weeks premature). We had > been asking our doctor about his flat head since he was six weeks old > and she advised that it would go away. It never did. > > Look forward to sharing stories, progress, etc. with you all. > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Just had a look at your photos. What a change after only one week. You must be very happy. I also love the shot of your son and husband in helmets - very cute!! > What a great site. It is a relief to know there are other children > out there with the same condition as our son. We are from Toronto, ON > and were fitted with a helmet at the Hospital for Sick Children. Our > son has been in the helmet for a few days now and it doesn't seem to > bother him. He is now 7 months old (was 5 weeks premature). We had > been asking our doctor about his flat head since he was six weeks old > and she advised that it would go away. It never did. > > Look forward to sharing stories, progress, etc. with you all. > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Just had a look at your photos. What a change after only one week. You must be very happy. I also love the shot of your son and husband in helmets - very cute!! > What a great site. It is a relief to know there are other children > out there with the same condition as our son. We are from Toronto, ON > and were fitted with a helmet at the Hospital for Sick Children. Our > son has been in the helmet for a few days now and it doesn't seem to > bother him. He is now 7 months old (was 5 weeks premature). We had > been asking our doctor about his flat head since he was six weeks old > and she advised that it would go away. It never did. > > Look forward to sharing stories, progress, etc. with you all. > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Sorry to but in here but we are from Winnipeg MB and I was wondering what type of helmet everyone from Ontario is using. Thanks. Haylee > > What a great site. It is a relief to know there are other > children > > out there with the same condition as our son. We are from > Toronto, ON > > and were fitted with a helmet at the Hospital for Sick Children. > Our > > son has been in the helmet for a few days now and it doesn't seem > to > > bother him. He is now 7 months old (was 5 weeks premature). We > had > > been asking our doctor about his flat head since he was six weeks > old > > and she advised that it would go away. It never did. > > > > Look forward to sharing stories, progress, etc. with you all. > > > > > > > > > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Sorry to but in here but we are from Winnipeg MB and I was wondering what type of helmet everyone from Ontario is using. Thanks. Haylee > > What a great site. It is a relief to know there are other > children > > out there with the same condition as our son. We are from > Toronto, ON > > and were fitted with a helmet at the Hospital for Sick Children. > Our > > son has been in the helmet for a few days now and it doesn't seem > to > > bother him. He is now 7 months old (was 5 weeks premature). We > had > > been asking our doctor about his flat head since he was six weeks > old > > and she advised that it would go away. It never did. > > > > Look forward to sharing stories, progress, etc. with you all. > > > > > > > > > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 not a problem Haylee - that's what we are here for, right? It's a local helmet made my the Orthotics Department of The Hospital for Sick Children in Toronto. Valhaylee204 <rascle204@...> wrote: Sorry to but in here but we are from Winnipeg MB and I was wondering what type of helmet everyone from Ontario is using. Thanks.Haylee> > What a great site. It is a relief to know there are other > children > > out there with the same condition as our son. We are from > Toronto, ON > > and were fitted with a helmet at the Hospital for Sick Children. > Our > > son has been in the helmet for a few days now and it doesn't seem > to > > bother him. He is now 7 months old (was 5 weeks premature). We > had > > been asking our doctor about his flat head since he was six weeks > old > > and she advised that it would go away. It never did.> > > > Look forward to sharing stories, progress, etc. with you all.> > > > > > > > > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 not a problem Haylee - that's what we are here for, right? It's a local helmet made my the Orthotics Department of The Hospital for Sick Children in Toronto. Valhaylee204 <rascle204@...> wrote: Sorry to but in here but we are from Winnipeg MB and I was wondering what type of helmet everyone from Ontario is using. Thanks.Haylee> > What a great site. It is a relief to know there are other > children > > out there with the same condition as our son. We are from > Toronto, ON > > and were fitted with a helmet at the Hospital for Sick Children. > Our > > son has been in the helmet for a few days now and it doesn't seem > to > > bother him. He is now 7 months old (was 5 weeks premature). We > had > > been asking our doctor about his flat head since he was six weeks > old > > and she advised that it would go away. It never did.> > > > Look forward to sharing stories, progress, etc. with you all.> > > > > > > > > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 In a message dated 1/19/2006 8:03:32 AM Eastern Standard Time, dana_kate@... writes: We got the diagnosis today, Asperger's. I really don't have any questions or anything; I'm just so overwhelmed and seeking to be around people who understand. So far today, I've been thrilled, terrified, relieved, furious, shocked, disgusted, guilty, more guilty, blaming his birthparents, even more guilt for that, sad, more sadness, and more frustration than I ever thought possible. I'm so worn out, and all I did today was eat my shredded wheat, and take him to his appointment. To be honest, the day I got hit by a car, I felt better than I do today. Please tell me this gets easier... or something! Thanks, Gen Well, Gen - welcome! And it definitely does get better! Once you get over the shock of everything, you can learn more about Asperger's and learn about things you can do to help him. 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 January 19, 2006 Report Share Posted January 19, 2006 Try this link for the OASIS website. Very informative! Cathie _http://www.udel.edu/bkirby/asperger/_ (http://www.udel.edu/bkirby/asperger/) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Hey Carol, Thanks for responding. Wesley keeps getting a red round circle near where the velcro strip is. Today when we went in, he gave us a white strip to go in the space between the band. The other two times we went in he sanded a little bit inside the Starband. Bonnie In a message dated 1/19/2006 1:40:07 PM Eastern Standard Time, GATTVA@... writes: What is going on with the band that you have had to go back so many times? Is it fitting properly now? We have many parents who have used the Starband with great results, but the key to treatment with any band is the orthotist. They must be experienced. Are you sure of your ortho's experience? I don't think we have anyone who have used Valentine & co. Six months is a good age to get treatment started. Fell free to ask any questions you have. CAROLG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Hey Carol, Thanks for responding. Wesley keeps getting a red round circle near where the velcro strip is. Today when we went in, he gave us a white strip to go in the space between the band. The other two times we went in he sanded a little bit inside the Starband. Bonnie In a message dated 1/19/2006 1:40:07 PM Eastern Standard Time, GATTVA@... writes: What is going on with the band that you have had to go back so many times? Is it fitting properly now? We have many parents who have used the Starband with great results, but the key to treatment with any band is the orthotist. They must be experienced. Are you sure of your ortho's experience? I don't think we have anyone who have used Valentine & co. Six months is a good age to get treatment started. Fell free to ask any questions you have. CAROLG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 > > hi all im ben father of two boy that has adhdand girl with austim> i was woundering i think my son has asperger but not to sure his > actions fall into play to make me think he has asperger i just want > some answers anybody with any info please e mail me at > triston_a_97@y... or id to chat... triston_a_97. thank you > for your time > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 I completely understand how you feel. To read your post was like reading my own feelings when my daughter was your child's age. Her school system was awful. The only difference (a very important one) is that I did not know about AS and noone at K's school had any idea or suggestion. It took me 2 more years to discover it doing personal research. Try to educate the teachers on your child's condition. Talk to your Principal and if necessary find a special education attorney. There are many options available for your son. I was completely ignorant and my daughter's condition worsened through the years. She is a lot of better now at 14. I was the one who suggested to one of her psychiatrist that she might have AS. After a lot of research I was sure about it. He said that it was a possibility but nothing else. Later one, another doctor gave that diagnosis for her. You are on time to help your son. Do not allow any further mistreatment. It is very humiliating to ostracize him like they are doing. AS children are very sensitive, even if they do not show a lot of emotion. Your son may be suffering. The fact that he does not have social skills does not mean he does not feel lonely and wishes to have a friend. Information and action is the key. Good luck Ana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Welcome Bonnie, I am also in Virginia, Orange County. I travel to Richmond for my son's eye doctor. We used Cranial Tech. in ndale for a Doc Band. What is going on with the band that you have had to go back so many times? Is it fitting properly now? We have many parents who have used the Starband with great results, but the key to treatment with any band is the orthotist. They must be experienced. Are you sure of your ortho's experience? I don't think we have anyone who have used Valentine & co. Six months is a good age to get treatment started. Fell free to ask any questions you have. CAROLG > > Hi. I am new to the group. My son, Wesley, is 6 months old and he just > got the Starband on 1/3/06. We have had to make several return visits for > adjustments. I feel so stupid. I did not realize there was this support group. > I wish I had found this before he got his Starband. I didn't realize there > were so many different kinds of devises. > > Has anyone been to Valentine & Co. in Richmond, Virginia?. I did not > see them listed on the list. I was told they are the only ones in Richmond > that do this. I am really surprised since this is such a big city. We even > have Medical College of Virginia that is very well known. > > Also, my health insurance (Southern Health) had denied the claim saying that > it is just cosmetic. The tips on the website for filing an appeal were very > helpful. It is going to be $1,500, and I had to pay $750 upfront when they > did the cast. I have my fingers crossed it will be appealed. > > Thanks so much ---- Bonnie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Welcome Bonnie, I am also in Virginia, Orange County. I travel to Richmond for my son's eye doctor. We used Cranial Tech. in ndale for a Doc Band. What is going on with the band that you have had to go back so many times? Is it fitting properly now? We have many parents who have used the Starband with great results, but the key to treatment with any band is the orthotist. They must be experienced. Are you sure of your ortho's experience? I don't think we have anyone who have used Valentine & co. Six months is a good age to get treatment started. Fell free to ask any questions you have. CAROLG > > Hi. I am new to the group. My son, Wesley, is 6 months old and he just > got the Starband on 1/3/06. We have had to make several return visits for > adjustments. I feel so stupid. I did not realize there was this support group. > I wish I had found this before he got his Starband. I didn't realize there > were so many different kinds of devises. > > Has anyone been to Valentine & Co. in Richmond, Virginia?. I did not > see them listed on the list. I was told they are the only ones in Richmond > that do this. I am really surprised since this is such a big city. We even > have Medical College of Virginia that is very well known. > > Also, my health insurance (Southern Health) had denied the claim saying that > it is just cosmetic. The tips on the website for filing an appeal were very > helpful. It is going to be $1,500, and I had to pay $750 upfront when they > did the cast. I have my fingers crossed it will be appealed. > > Thanks so much ---- Bonnie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Lucky, I was quoted $2,500 up front in Brooklyn, New York and my insurance told me they may pay 80% after a deductable so either way it will be a lot out of my pocket. I am also surprised how few choices I have here in Brooklyn, also not a small town Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Lucky, I was quoted $2,500 up front in Brooklyn, New York and my insurance told me they may pay 80% after a deductable so either way it will be a lot out of my pocket. I am also surprised how few choices I have here in Brooklyn, also not a small town Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 We are blessed with the most unique children. We will never be late.(god help us if we are late- they won't let us be late) We will never get lost.(they memorized the directions) It is not the worst thing to happen. It does get easier when you know how you navigate and you learn- thru school, home- the internet.... My son is a hfa and 9, and is a late onset toe walker.. I have just been thrown another curve ball- the drs think it is neurological(the toe walking)....the thought of surgery on him scares me, but you gather up your support system of family and friends- and geez- when you are down- someone is there to help you. This is not the worst thing to happen,- I swear. Good luck. > > > In a message dated 1/19/2006 8:03:32 AM Eastern Standard Time, > dana_kate@h... writes: > > We got the diagnosis today, Asperger's. I really don't have any > questions or anything; I'm just so overwhelmed and seeking to be > around people who understand. So far today, I've been thrilled, > terrified, relieved, furious, shocked, disgusted, guilty, more guilty, > blaming his birthparents, even more guilt for that, sad, more sadness, > and more frustration than I ever thought possible. I'm so worn out, > and all I did today was eat my shredded wheat, and take him to his > appointment. To be honest, the day I got hit by a car, I felt better > than I do today. Please tell me this gets easier... or something! > > Thanks, > Gen > > > > Well, Gen - welcome! And it definitely does get better! Once you get over > the shock of everything, you can learn more about Asperger's and learn about > things you can do to help him. > > > 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 January 19, 2006 Report Share Posted January 19, 2006 Hi: Welcome to the group - a more wonderful group of supportive and caring individuals is hard to find, and our moderators, and a, keep us well informed on medicines, research, etc., and can answer just about any question you might have regarding RA. I am very glad that the Enbrel is helping you, and that you are able to continue working. I am on Enbrel as well as other meds, it is helpful to me too, I still have flares, but my RA is in pretty good control, knock on wood lol. Kathe in CA --- proud461 <proud461@...> wrote: > Hello all, > I have just found this group and registered. > I am 62 and was diagnosed with RA, 2 yrs ago. > My doctor put me on Methotrexate and Etodolac. > I was in remission for about 6 months, then the > flares came back > in full force. I was having debilitating flares > about every 2 wks. > My doctor put me on Enbrel, and I haven't had a > flare for about > 2 1/2 months. I still suffer from some fatigue, but > I am able to > work and have my life back. I am grateful to find > this website > because there do not seem to be any support groups > for RA in my city. > It is good to have contact with others who > understand. > > Thank you for being there. > > > > > > > > Kathe in CA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Proud461, Welcome to the group. You will find it a very caring and supportive gang of people. You are lucky in that you didn't get RA until you were in your sixties. I also got it when I was in my sixties, four years ago. I was on methotrexate, then Arava, and finally, Enbrel. It is working very well for me, too. I'm glad that it has given you your life back, and hope that it continues to work for both of us. Sue On Thursday, January 19, 2006, at 04:01 PM, proud461 wrote: > I have just found this group and registered. > I am 62 and was diagnosed with RA, 2 yrs ago. > My doctor put me on Methotrexate and Etodolac. > I was in remission for about 6 months, then the flares came back > in full force. I was having debilitating flares about every 2 wks. > My doctor put me on Enbrel, and I haven't had a flare for about > 2 1/2 months. I still suffer from some fatigue, but I am able to > work and have my life back. I am grateful to find this website > because there do not seem to be any support groups for RA in my city. > It is good to have contact with others who understand. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 welcome to our family: You will not find a more compassionate and understanding group anywhere else............................sorry for your diagnosis that brought you here but glad you found us..................hope the Embrel keeps working for you. I look forward to hearing more about you. Pat in So. Ore. proud461 <proud461@...> wrote: Hello all, I have just found this group and registered. I am 62 and was diagnosed with RA, 2 yrs ago. My doctor put me on Methotrexate and Etodolac. I was in remission for about 6 months, then the flares came back in full force. I was having debilitating flares about every 2 wks. My doctor put me on Enbrel, and I haven't had a flare for about 2 1/2 months. I still suffer from some fatigue, but I am able to work and have my life back. I am grateful to find this website because there do not seem to be any support groups for RA in my city. It is good to have contact with others who understand. Thank you for being there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 ty u so much gives me a few things to thank about im glad there are people out there like u to help others thank you so much knowledge is power i will keep my research going the more i know the better im thank you so much...ben ACuitino@... wrote: I completely understand how you feel. To read your post was like reading my own feelings when my daughter was your child's age. Her school system was awful. The only difference (a very important one) is that I did not know about AS and noone at K's school had any idea or suggestion. It took me 2 more years to discover it doing personal research. Try to educate the teachers on your child's condition. Talk to your Principal and if necessary find a special education attorney. There are many options available for your son. I was completely ignorant and my daughter's condition worsened through the years. She is a lot of better now at 14. I was the one who suggested to one of her psychiatrist that she might have AS. After a lot of research I was sure about it. He said that it was a possibility but nothing else. Later one, another doctor gave that diagnosis for her. You are on time to help your son. Do not allow any further mistreatment. It is very humiliating to ostracize him like they are doing. AS children are very sensitive, even if they do not show a lot of emotion. Your son may be suffering. The fact that he does not have social skills does not mean he does not feel lonely and wishes to have a friend. Information and action is the key. Good luck Ana Quote Link to comment Share on other sites More sharing options...
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