Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 In a message dated 2/18/2003 5:39:35 PM Central Standard Time, heidi3kids@... writes: but I have a PPO and got a second opinion without needing a referral, which my Ped refused to give me. Thanks for all the advice Heidi! ) This is what worries me about the ped not wanting to refer us for further therapy. We are an HMO and all of our care has to be centered around the ped. She is a very understanding and good dr though, so I am probably just worrying for nothing. And I have learned over the years to just be very persistent with drs. to get what you need. They will eventually get sick of hearing from you and give in just to shut you up. LOL I am going to call and schedule an appt for just instead of waiting for the appt for all three. This way I can focus on just him and not have to be distracted by the others. Thanks again! PROUD Mommy to... Mykenna - 3 years Myranda, & Mason - 6 months ~and ALWAYS in my heart~ Madelyn & Morgyn - s/b 6/2/98 Mya - (b)6/2/98 (d)7/24/98 "Baby D" - m/c 2/98 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 Hi & welcome to our group! It sounds like you have everything going in the right direction now. Hopefully your ped will take your concerns seriously and give the attention he needs & deserves. Many of our members who receive PT for their babies, have a therapist come to their house, maybe that would be an option. There are some great questions for the Dr at www.plagiocephaly.org/support " questions for the dr " . Perhaps you could bring that with your to your appt.. With both plagio & tort it's so important to recognize & address the issues early on. From your signature, it sounds like you lost 4 other babies - if so, my deepest deepest sympathies. Welcome again to our group. Debbie Abby's mom DOCgrad MI > Hi there! I thought I would just jump right in and introduce > myself. My name is and I have 4 beautiful kids... Mykenna (3 > years), Myranda, and Mason (6 1/2 months). Yes the last > three are triplets. LOL For the past few weeks I have been watching > my son, 's, head getting more and more misshapen. At first I > noticed a bulge on the right side of his forehead, but then I noticed > it was the whole right side of his face stuck out further than the > left. We also have other issues with him as far as muscle control > goes and I am learning through researching that he probably has > torticollis. Since birth he has always prefered having his head > towards the right. I fight him several times a day to look straight > or to the left, but he always ends back up to the right. He also > shows signs of Hypotonia. He just recently became able to hold his > head up and finally puts a little weight on his legs. But when you > pick him up under his arms he still wants to slide through. The ped > has suggested physical therapy, but she was wanting to wait until RSV > season is over. I on the other hand am going to push that he begin > it now. The more I read the more I realize he should have been in > physical therapy a long time ago. I am a little disappointed at > myself for not realizing how much of a problem he has earlier. I > just went along with the ped and figured that if she didn't think it > was serious then he must be fine. Now after learning a bit more > about it I realize that he needs help now. I am just afraid that I > will go in there and she will still try to tell me it is nothing > serious and to just watch it. I don't want my child to have issues > as he gets older both physical and emotional due to his head not > being shaped correctly. Any advice on how to discuss all this with > the ped would be greatly appreciated! I take them back in on March > 4th for their next Synagis shot and plan on taking lots of info > with. TIA > > > PROUD mommy to... > Mykenna - 3 years > Myranda, & Mason - 6 months > ~and ALWAYS in my heart~ > Madelyn, Morgyn, Mya & Baby D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 Hi ! All I can say is WOW!!! Triplets....I thought I had it bad with 3 girls 7 and under! WOW!! Congratulations, you are a super mom already. So many will welcome you hear and give you wonderful advice, so I just want to say, Hello and Welcome. Dustie, mom to , DOCband 12/23/02 > Hi there! I thought I would just jump right in and introduce > myself. My name is and I have 4 beautiful kids... Mykenna (3 > years), Myranda, and Mason (6 1/2 months). Yes the last > three are triplets. LOL For the past few weeks I have been watching > my son, 's, head getting more and more misshapen. At first I > noticed a bulge on the right side of his forehead, but then I noticed > it was the whole right side of his face stuck out further than the > left. We also have other issues with him as far as muscle control > goes and I am learning through researching that he probably has > torticollis. Since birth he has always prefered having his head > towards the right. I fight him several times a day to look straight > or to the left, but he always ends back up to the right. He also > shows signs of Hypotonia. He just recently became able to hold his > head up and finally puts a little weight on his legs. But when you > pick him up under his arms he still wants to slide through. The ped > has suggested physical therapy, but she was wanting to wait until RSV > season is over. I on the other hand am going to push that he begin > it now. The more I read the more I realize he should have been in > physical therapy a long time ago. I am a little disappointed at > myself for not realizing how much of a problem he has earlier. I > just went along with the ped and figured that if she didn't think it > was serious then he must be fine. Now after learning a bit more > about it I realize that he needs help now. I am just afraid that I > will go in there and she will still try to tell me it is nothing > serious and to just watch it. I don't want my child to have issues > as he gets older both physical and emotional due to his head not > being shaped correctly. Any advice on how to discuss all this with > the ped would be greatly appreciated! I take them back in on March > 4th for their next Synagis shot and plan on taking lots of info > with. TIA > > > PROUD mommy to... > Mykenna - 3 years > Myranda, & Mason - 6 months > ~and ALWAYS in my heart~ > Madelyn, Morgyn, Mya & Baby D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 - Welcome to the group! Where do you live? A lot of members have Early Intervention come to their homes for PT for tort. There may be a program in your state for that. Check for plagio friendly doctors in the files section. Maybe someone is near you! If you live near a Cranial Technologies (cranialtech.com), I would recommend getting a free consult for the plagio. You can expect an honest opinion from them. My goodness that's a lot of M names! You are going to be tongue tied in a few years when they all start getting into trouble and you are yelling for them! I have trouble with Olivia and Dane and they don't even sound alike! Keep us posted! Dane's mom DOC Grad ~ tort resolved Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 Hi, Welcome to the group! I see you've gotten some great replies so I won't repeat whats already been said. I just wanted to welcome you to the group! It must be so cool to have triplets!! You must be one busy Mom!! > Hi there! I thought I would just jump right in and introduce > myself. My name is and I have 4 beautiful kids... Mykenna (3 > years), Myranda, and Mason (6 1/2 months). Yes the last > three are triplets. LOL For the past few weeks I have been watching > my son, 's, head getting more and more misshapen. At first I > noticed a bulge on the right side of his forehead, but then I noticed > it was the whole right side of his face stuck out further than the > left. We also have other issues with him as far as muscle control > goes and I am learning through researching that he probably has > torticollis. Since birth he has always prefered having his head > towards the right. I fight him several times a day to look straight > or to the left, but he always ends back up to the right. He also > shows signs of Hypotonia. He just recently became able to hold his > head up and finally puts a little weight on his legs. But when you > pick him up under his arms he still wants to slide through. The ped > has suggested physical therapy, but she was wanting to wait until RSV > season is over. I on the other hand am going to push that he begin > it now. The more I read the more I realize he should have been in > physical therapy a long time ago. I am a little disappointed at > myself for not realizing how much of a problem he has earlier. I > just went along with the ped and figured that if she didn't think it > was serious then he must be fine. Now after learning a bit more > about it I realize that he needs help now. I am just afraid that I > will go in there and she will still try to tell me it is nothing > serious and to just watch it. I don't want my child to have issues > as he gets older both physical and emotional due to his head not > being shaped correctly. Any advice on how to discuss all this with > the ped would be greatly appreciated! I take them back in on March > 4th for their next Synagis shot and plan on taking lots of info > with. TIA > > > PROUD mommy to... > Mykenna - 3 years > Myranda, & Mason - 6 months > ~and ALWAYS in my heart~ > Madelyn, Morgyn, Mya & Baby D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 Welcome , First don't worry about not seeing it sooner. We all feel that way, we have to forgive ourselves and move forward. Most of us noticed it and not our Peds. I feel the Ped didn't notice 's tort or Plagio because she has VUR. The hospital stay and all the tests to determine why she had a kidney infection over shadowed the other stuff. I say yes push for PT now. 's PT is private at Easter Seals and they bleach everything after she has put it in her mouth. Are you part of the tort group? Here is the address. Torticolliskids/ At 6-1/2 months I would start pushing for Banding. 's Neurosurgeon would have liked to see banded much earlier to maximize her chances for full correction. was 13 weeks when her tort/Plagio was Dx. Both were mild but she eventually needed PT (still in it) and after some results with aggressive repositioning she still needed to be Banded to get the last bit of flatness out. She was just banded on 2/14/03 at 10 months 10 days old. 6-1/2 months is a great time to get started. If your Ped will not give you an Rx for the Band, ask for a referral to see a neurosurgeon. My Ped is still saying that 's head will round out but I have a PPO and got a second opinion without needing a referral, which my Ped refused to give me. Take care, Heidi- mom to 7, 4-1/2 (SDI, Apraxia) 10-1/2 months (VUR, Tort/Plagio-Doc Banded 2/14/03) > Okay, I posted this on the page but I am not sure if I did it right > because it isn't showing up in the mailbox. I am going to send it this way > and I apologize if it shows up twice. > > Hi there! I thought I would just jump right in and introduce > myself. My name is and I have 4 beautiful kids... Mykenna (3 > years), Myranda, and Mason (6 1/2 months). Yes the last > three are triplets. LOL For the past few weeks I have been watching > my son, 's, head getting more and more misshapen. At first I > noticed a bulge on the right side of his forehead, but then I noticed > it was the whole right side of his face stuck out further than the > left. We also have other issues with him as far as muscle control > goes and I am learning through researching that he probably has > torticollis. Since birth he has always prefered having his head > towards the right. I fight him several times a day to look straight > or to the left, but he always ends back up to the right. He also > shows signs of Hypotonia. He just recently became able to hold his > head up and finally puts a little weight on his legs. But when you > pick him up under his arms he still wants to slide through. The ped > has suggested physical therapy, but she was wanting to wait until RSV > season is over. I on the other hand am going to push that he begin > it now. The more I read the more I realize he should have been in > physical therapy a long time ago. I am a little disappointed at > myself for not realizing how much of a problem he has earlier. I > just went along with the ped and figured that if she didn't think it > was serious then he must be fine. Now after learning a bit more > about it I realize that he needs help now. I am just afraid that I > will go in there and she will still try to tell me it is nothing > serious and to just watch it. I don't want my child to have issues > as he gets older both physical and emotional due to his head not > being shaped correctly. Any advice on how to discuss all this with > the ped would be greatly appreciated! I take them back in on March > 4th for their next Synagis shot and plan on taking lots of info > with. TIA > > > > PROUD Mommy to... > Mykenna - 3 years > Myranda, & Mason - 6 months > ~and ALWAYS in my heart~ > Madelyn & Morgyn - s/b 6/2/98 > Mya - (b)6/2/98 (d)7/24/98 > " Baby D " - m/c 2/98 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 , Welcome to the group! Wow, triplets! My son was dx with tort at 2 mnths old, and I wish that for that first check up i had said, this kid will not turn left- we tried to reposition of that left side because we knew about another child getting a flat head, but didn't realize the full extent of what tort meant and that he had no rotation to the left until he was dx. Luckily the ped spotted the tort and off we went to find pt. I would bring lots of info with you, I'll attach a few links for you if it helps! I would suggest setting up the appt. to talk about torticollis specifically, if that's not an option, make sure you address it fully and that she doesn't want to cut you off for another appt. Let her know all the things you know, and I would hope that would be enough to get her to send you to pt. If not, request it anyway. Tell her that you really want a pt to evalutate your child and go from there. When you do your search for pt, Early Intervention is a state program that is free, although some tort kids do not qualify, they also have to be I think at least at a 25% delay (varies with states). Also, you can call your bigger local hospitals and ask for a pediatric pt that deals with tort- we had such a run around just trying to locate someone that was skilled with tort- one receptionist thought I was referring to tuberculosis! Good luck- you are on the right path- ultimately it will be your primary responsibility to stretch and reposition for success to happen, be diligent and stay with it. You can also check out www.torticolliskids for great advice and treatment tips as well. Please feel free to email me anytime if you have any questions you think I can help you with. Keep us posted on how your appt. goes! ' Mom (dx with tort at 2 mnths, pt from 3-10 mnths, DOC band 5-8 mnths) Torticollis Information Tort Stretches/ Carrying Hold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 whats tort tort stretches babymassage files head shapes repostiioing DOC Orthomerica Find a Preferred Physician: Search by Location Repositioning Techniques commonplagioquestions thought these links might help you sound like a great and verys trong mommy. We are so glad youa re here! beck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 Thank you so much for all of these links! I swear my dh is gonna throw this pc out the window if I don't start getting off of it. I have been making him try to control the kids when he gets home from work, so I can learn more. LOL Oh well! It is a nice break for me! PROUD Mommy to... Mykenna - 3 years Myranda, & Mason - 6 months ~and ALWAYS in my heart~ Madelyn & Morgyn - s/b 6/2/98 Mya - (b)6/2/98 (d)7/24/98 "Baby D" - m/c 2/98 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Hi My name is Ila and I live in Maine with my husband Mike (who is on kidney dialysis) and my 12 year old daughter Ilana. I also have a son who is 32. I am 47 years old. I am originally from KY and was in the Navy for 2 years in CA before coming to ME in 1982. I was diagnosed with arthritis when I was around 25. Since then I have been diagnosed with bursitis, carpal tunnel, endometriosis, seizure disorders, irritable bowel, and a myriad of other things including Fibromyalgia, Chronic Fatigue Syndrome, Degenerative Joint Disease and 2 days before this past Christmas (05) my PCP/DO told me that I have non RH positive Rheumatoid Arthritis which was not a surprise to me. I come from a family (on my father's side) that lived to be well into their 90's and they were all twisted and wasted up with this disease and from the pain I have been going through the past 3 or 4 years I knew I had it even though the blood tests came back negative for it. Right now I am on Percocet 3 times a day and Sulfasalazine 500 mg 2 times a day (that might be a generic name) as we are just starting to try treating this. I also have PTSD x 4 as well as some anxiety issues from abuse from my parents and former husband and am pretty much a homebody. Depression was never an issue for me until 1995 when the doctors made me quit work because my pain was so bad I could no longer focus on my job and do it properly. I was in law enforcement. I began as a road officer and when the arthritis became too painful that I felt I wasn't reliable enough to be safe backup for my fellow officers I took myself off the street and went into dispatching where I worked as long as I could. One day because I was trying so hard to deal with my pain I forget to send a rescue to a auto accident and the doctors and I knew it was time for me to leave before I got someone seriously hurt. That was the hardest thing I have ever had to do and I still to this day agonize over it. I enjoy sewing of all types except for making clothes. I quilt for charity and family. I embroider, cross stitch and bead, I do redwork and just about anything you can think of with a needle and thread. I also have a embroidery machine, a sewing machine and a serger and when the depression loosens its grip on me I enjoy using them to make things for people. I also love to read anything but mushy Harlequin romance novels. I prefer King, and law enforcement books, forensic books and, well I will read just about anything. I am like that robot in the movie Short Circuit who is always in quest of knowledge. I am hoping that when my daughter is 18 and old enough to go off to college that somehow I will find the funding to become a forensic psychologist which is where my interest has been even before the movie Silence of the Lambs. I am looking to chat with others who are dealing with this disease, who like me are scared but who are not going to let it rule their lives as long as that is possible. I would like to discuss hobbies and books, pets or whatever. I have 8 birds, a white capped Pionus who is Hunter, a cockatiel, Yugi and 5 parakeets: Roland, CB, Coffee, Cream, Sugar, and a Peach Faced Lovebird Priscilla. They greatly brighten my day with their antics and their love. Ila in Maine mailto:sewcraftyme@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 Welcome, Ila! It was fun to read about your many interests. Glad you're here. Much has improved in the treatment of RA since your family members wasted away from it. You may find that some of your other conditions improve with RA treatment. All the best to you and your family. Sierra --- In Rheumatoid Arthritis , Ila <sewcraftyme@p...> wrote: > > Hi > > My name is Ila and I live in Maine with my husband Mike (who is on > kidney dialysis) and my 12 year old daughter Ilana. I also have a son > who is 32. I am 47 years old. I am originally from KY and was in the > Navy for 2 years in CA before coming to ME in 1982. > > I was diagnosed with arthritis when I was around 25. Since then I have > been diagnosed with bursitis, carpal tunnel, endometriosis, seizure > disorders, irritable bowel, and a myriad of other things including > Fibromyalgia, Chronic Fatigue Syndrome, Degenerative Joint Disease and 2 > days before this past Christmas (05) my PCP/DO told me that I have non > RH positive Rheumatoid Arthritis which was not a surprise to me. > > I come from a family (on my father's side) that lived to be well into > their 90's and they were all twisted and wasted up with this disease and > from the pain I have been going through the past 3 or 4 years I knew I > had it even though the blood tests came back negative for it. Right now > I am on Percocet 3 times a day and Sulfasalazine 500 mg 2 times a day > (that might be a generic name) as we are just starting to try treating > this. > > I also have PTSD x 4 as well as some anxiety issues from abuse from my > parents and former husband and am pretty much a homebody. Depression > was never an issue for me until 1995 when the doctors made me quit work > because my pain was so bad I could no longer focus on my job and do it > properly. I was in law enforcement. I began as a road officer and > when the arthritis became too painful that I felt I wasn't reliable > enough to be safe backup for my fellow officers I took myself off the > street and went into dispatching where I worked as long as I could. One > day because I was trying so hard to deal with my pain I forget to send a > rescue to a auto accident and the doctors and I knew it was time for me > to leave before I got someone seriously hurt. That was the hardest > thing I have ever had to do and I still to this day agonize over it. > > I enjoy sewing of all types except for making clothes. I quilt for > charity and family. I embroider, cross stitch and bead, I do redwork > and just about anything you can think of with a needle and thread. I > also have a embroidery machine, a sewing machine and a serger and when > the depression loosens its grip on me I enjoy using them to make things > for people. > > I also love to read anything but mushy Harlequin romance novels. I > prefer King, and law enforcement books, forensic books and, well > I will read just about anything. I am like that robot in the movie > Short Circuit who is always in quest of knowledge. > > I am hoping that when my daughter is 18 and old enough to go off to > college that somehow I will find the funding to become a forensic > psychologist which is where my interest has been even before the movie > Silence of the Lambs. > > I am looking to chat with others who are dealing with this disease, who > like me are scared but who are not going to let it rule their lives as > long as that is possible. I would like to discuss hobbies and books, > pets or whatever. > > I have 8 birds, a white capped Pionus who is Hunter, a cockatiel, Yugi > and 5 parakeets: Roland, CB, Coffee, Cream, Sugar, and a Peach Faced > Lovebird Priscilla. They greatly brighten my day with their antics and > their love. > > Ila in Maine mailto:sewcraftyme@p... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 Hi Ila , I'm I'm from Ky. I've been involed with cars my whole life and had to give them up in Augest of 05 because of the pain of this crapy diease and some others allso I'm 41 yrs old and worked wit ford linclon mercury most of my career and worked on many of the officeers crusers LOL . but that time has passed now and just memories I guess but anytime you wanta write feel free here or kentuckycowboy2@... either one or catch me at kentuckycowboy2 on messanger on friendster hi5 or 360 I try to feel my free time during the winter hope things go better for you , anyway it was my moms side of the family thats all twisted and crippled with it catch you later john Ila <sewcraftyme@...> wrote: Hi My name is Ila and I live in Maine with my husband Mike (who is on kidney dialysis) and my 12 year old daughter Ilana. I also have a son who is 32. I am 47 years old. I am originally from KY and was in the Navy for 2 years in CA before coming to ME in 1982. I was diagnosed with arthritis when I was around 25. Since then I have been diagnosed with bursitis, carpal tunnel, endometriosis, seizure disorders, irritable bowel, and a myriad of other things including Fibromyalgia, Chronic Fatigue Syndrome, Degenerative Joint Disease and 2 days before this past Christmas (05) my PCP/DO told me that I have non RH positive Rheumatoid Arthritis which was not a surprise to me. I come from a family (on my father's side) that lived to be well into their 90's and they were all twisted and wasted up with this disease and from the pain I have been going through the past 3 or 4 years I knew I had it even though the blood tests came back negative for it. Right now I am on Percocet 3 times a day and Sulfasalazine 500 mg 2 times a day (that might be a generic name) as we are just starting to try treating this. I also have PTSD x 4 as well as some anxiety issues from abuse from my parents and former husband and am pretty much a homebody. Depression was never an issue for me until 1995 when the doctors made me quit work because my pain was so bad I could no longer focus on my job and do it properly. I was in law enforcement. I began as a road officer and when the arthritis became too painful that I felt I wasn't reliable enough to be safe backup for my fellow officers I took myself off the street and went into dispatching where I worked as long as I could. One day because I was trying so hard to deal with my pain I forget to send a rescue to a auto accident and the doctors and I knew it was time for me to leave before I got someone seriously hurt. That was the hardest thing I have ever had to do and I still to this day agonize over it. I enjoy sewing of all types except for making clothes. I quilt for charity and family. I embroider, cross stitch and bead, I do redwork and just about anything you can think of with a needle and thread. I also have a embroidery machine, a sewing machine and a serger and when the depression loosens its grip on me I enjoy using them to make things for people. I also love to read anything but mushy Harlequin romance novels. I prefer King, and law enforcement books, forensic books and, well I will read just about anything. I am like that robot in the movie Short Circuit who is always in quest of knowledge. I am hoping that when my daughter is 18 and old enough to go off to college that somehow I will find the funding to become a forensic psychologist which is where my interest has been even before the movie Silence of the Lambs. I am looking to chat with others who are dealing with this disease, who like me are scared but who are not going to let it rule their lives as long as that is possible. I would like to discuss hobbies and books, pets or whatever. I have 8 birds, a white capped Pionus who is Hunter, a cockatiel, Yugi and 5 parakeets: Roland, CB, Coffee, Cream, Sugar, and a Peach Faced Lovebird Priscilla. They greatly brighten my day with their antics and their love. Ila in Maine mailto:sewcraftyme@... Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. 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.