Guest guest Posted April 20, 2002 Report Share Posted April 20, 2002 Hello Huong, Here are a few websites (a place to start): http://www.drcarbone.net/ http://www.christinaburkaba.com/ http://www.rtphome.org/mariposa/ http://www.behavioranalysts.com/ http://www.difflearn.com/ Essential Books: 1) " Teaching Language to Children with Autism or Other Developmental Disabilities " 312 pages, by Mark L. Sundberg, Ph.D. and W. Partington, Ph.D. available from http://www.difflearn.com/ and http://www.behavioranalysts.com/ 2) " The Assessment of Basic Language and Learning Skills " 2 Volume Set by W. Partington, Ph.D. and Mark L. Sundberg, Ph.D. available from http://www.difflearn.com/ and http://www.behavioranalysts.com/ Very good books: 3) " The Power of Positive Parenting " by Glenn Latham available from http://www.amazon.com/exec/obidos/ASIN/1567131751/qid=1019259846/sr=2-1/ref= sr_2_1/104-5413644-3530343 4) " Don't Shoot The Dog " by Pryor (Personal note: The title is awful, but the content is great...a very good lay version of the book listed below) available from http://www.amazon.com/exec/obidos/ASIN/0553380397/qid=1019259897/sr=2-1/ref= sr_2_1/104-5413644-3530343 5) " Behavior Modification: What It Is and How To Do It " by Garry and ph Pear available from http://www.amazon.com/exec/obidos/ASIN/0130807427/qid=1019259941/sr=1-1/ref= sr_1_1/104-5413644-3530343 Hope this helps! Best Regards, Tamara Hamrock Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Hi Robin and welcome. Sounds like a visit to a specialist is in order! If you need a referral then see if your ped will help with that. If not you might post where you are from and we may have a member in your are who can suggest a specialist who is band " friendly " . You might also check out www.cranialtech.com - I believe they also have a link to band " friendly " specialist. I think you can also find that information at www.plagiocephaly.org. Good to hear that cranio has been ruled out. The misalignment of the skull can cause jaw misalignment and potential TMJ problems down the line. You may not be imagining the eye difference as that is also a side effect of plagio. Good luck with deciding what your next step should be. I think you will get all sorts of helpful advice and support from this group. Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Hello I have a 10 month old son with a lop sided head. I have been concerned about this since he was about a month old. The doctor kept saying it would round out on its own - it was just from how he slept. After his 9-month appointment the dr. ordered a ct scan and xrays to rule out craniosysnostosis - which it did. But I just went back to her to talk about it and she had no idea about positional plagiocephaly. I was telling her about the bands etc. So where do I go now? Just go to a specialist on my own. I think my son is borderline (it doesn't seem severe). It's his ears that bother me the most - they are quite a bit out of alighment. Does anyone know it that means it is affecting his jaw? Also I notice a slight difference between his eyes but that may not be related. It seems like I should have these answers since a cat scan was preformed but the only thing the doctor got from that is that his sutures have not fused and his brain looks good. What do I do next? I do not want to sound like paranoid mom and pursue something if it is not a problem, but I also do not want to ignore this if it can be fixed. I will try to attach a link with a couple of shots of my son's head. I would really appreciate any personal comments on how it looks (mild, moderate etc.) http://web.tampabay.rr.com/robinford/Jackshead.htm Thank you, I really appreciate having a board like this - what did people do before computers Robin 7/17/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 > Hello > I have a 10 month old son with a lop sided head. I have been > concerned about this since he was about a month old. The doctor kept > saying it would round out on its own - it was just from how he slept. > After his 9-month appointment the dr. ordered a ct scan and xrays to > rule out craniosysnostosis - which it did. But I just went back to > her to talk about it and she had no idea about positional > plagiocephaly. I was telling her about the bands etc. So where do I > go now? Just go to a specialist on my own. I think my son is > borderline (it doesn't seem severe). It's his ears that bother me the > most - they are quite a bit out of alighment. Does anyone know it > that means it is affecting his jaw? Also I notice a slight difference > between his eyes but that may not be related. It seems like I should > have these answers since a cat scan was preformed but the only thing > the doctor got from that is that his sutures have not fused and his > brain looks good. What do I do next? I do not want to sound like > paranoid mom and pursue something if it is not a problem, but I also > do not want to ignore this if it can be fixed. > > I will try to attach a link with a couple of shots of my son's head. > I would really appreciate any personal comments on how it looks > (mild, moderate etc.) > > http://web.tampabay.rr.com/robinford/Jackshead.htm > > Thank you, I really appreciate having a board like this - what did > people do before computers > > Robin > 7/17/01 Robin, My older son had plagio also and our Doctors told us the same thing, it would fix itself well it never did. We were given a referral when he was two, but it was too late. Now our second son hasthe same problem and we didn't fool around he has the band and is doing great. We have a different band than the Doc band. The Orthotics Dept. at the Childrens hospital made ours. We are very very happy with the results so far and it does not bother him at all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 i have the very same diagnosis minus the lupus but includes ankylosing spondolysis. it is pure hell some days. my life is over. i cannot do anything i once did. grocery shopping is an all day event get ready go and go to bed when i get home. i am on humira sufusadine evoxac prenisone as needed for flares, etc. if my rheumy would just give me on 10mg of pednisone once a week i could function. at least go to mail box grocery shopping wal into drs office without feeling i am gonna have a heart attack.. the sjorgens is the most aggravating thing i have ever experience. so glad to know another human being has my problems. sometimes i feel like an aliene, or an adult that have lost their mind. seriously sometimes i think nothing is wrong with me it must just be a deep depression. my husband doesn't really talk with me about it that much, he helps tremendously with housework and never complains but i just dont think he understands what i am dealing with. rita [ ] new and need advice hi, i am in my 30's and have RA, OA and ostepenia, sjogrens and lupus. i take disease modifying meds to help stop the progression of the arthritis disease but i dont know if they are working. i go to the dr in 2 weeks and thought maybe someone could help me figure out what's going on with me. can anyone help me? julie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 hi stephanie, i'm on plaquenil and immuran for arthritis. used to take methotrexate for about 4 yrs but finally changed to imuran this past sept wheni changed drs. i got sick every week from the methotrexdte. i dont take pain meds, just otc ibuprofen. doesnt help a lot. do you work? do you still see changes in your body even though you are on the dmards? tell me more, julie -- In , stephanie <stephieann2@...> wrote: > > Hi ! > I am in my 30's too and often think my DMARDS are not helping. I can tell you though, I learned that although I feel miserable most of the time, I do & nbsp;notice they decrease my pain somewhat. & nbsp; I have had to stop taking my Sulfasalazine several times (6 times to be exact since I had infections URI and had to take antibiotics). & nbsp; The minute I have to stop taking it my pain increases immensely. & nbsp; If I miss a dose of my Plaquenil, I am in incredible pain. & nbsp; My doctor recently stopped that one ( I have no idea WHY yet, I plan to speak to her tomorrow) but since stopping that one, I'm miserable and the Sulfasalazine is not enough on its own. & nbsp; Talk to your doctor as honestly as you can. & nbsp; Document your symptoms and what is getting worse. & nbsp; I believe one way they can know if they are helping you is by looking at labs, is the Sed Rate and other blood factors lower than the last set or higher? Compare new Xrays to older ones to see > if things are progressing. & nbsp; I hope that you can find some relief soon > > > > From: batai9 batai9@... > Subject: [ ] new and need advice > > Date: Sunday, June 8, 2008, 1:19 PM > > > > > > > hi, > i am in my 30's and have RA, OA and ostepenia, sjogrens and lupus. i > take disease modifying meds to help stop the progression of the > arthritis disease but i dont know if they are working. i go to the dr > in 2 weeks and thought maybe someone could help me figure out what's > going on with me. > can anyone help me? > julie > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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