Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Kim- When we put her on Carn-aware she was more alert and hyper but since she has been on the AEDs she has been sluggish and I welcomed a change. She did mellow over time. Now she is just like every other typical kid. It is also nice to see that she is making it to the developmental milestones that she never made it to. Sedona has alot of cognitive processing problems and this has really improved them as well as her speech. -- Re: [ ] new to group : I hope you don't mind a quick question....and welcome to the group! When you put your daughter on the Carn-aware...did you notice any negative side-effects? I tried my son on carn-aware and he went nuts. No, really...NUTS! He never stopped moving and moving. It was awful. I took him off the supplement after only 3 days, and I wonder from time to time if I didn't give him enough of a chance. What did you experience? Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hi Yael, how old is your daughter and what are the other supplements you are giving her? We have a son (will be 5 years old in May), who is hypotonic with severe speech delay. Rivka yael wrote: > I'm not , but my daughter has been taking > Carn-aware for several months with no bad side > effects. Her speech is really taking off--hard to say > if it is the Carn-aware or other supplements but we > think it is helping. > > Yael Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2003 Report Share Posted March 3, 2003 : Thanks for the reply, but you lost me with AEDs....what are AEDs? I think I will try the carn-aware again, but since he starts school tomorrow...I will wait a while. Thanks again. Kim --------- Kim- When we put her on Carn-aware she was more alert and hyper but since she has been on the AEDs she has been sluggish and I welcomed a change. She did mellow over time. Now she is just like every other typical kid. It is also nice to see that she is making it to the developmental milestones that she never made it to. Sedona has alot of cognitive processing problems and this has really improved them as well as her speech. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2003 Report Share Posted March 3, 2003 Kim- AEDS are Anti-Epilepsy Drugs. Don't wait to long to start the Carn-aware. Sedona's educational goals really took off once we started it. -- Re: [ ] new to group : Thanks for the reply, but you lost me with AEDs....what are AEDs? I think I will try the carn-aware again, but since he starts school tomorrow...I will wait a while. Thanks again. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 My son is 4-1/2 years old. He has been in speech thearpy since he was 2 and when he was 3-1/2 - I was told he has apraxia. Can you understand your son? Can other people understand him? If so, then he probably is just going at his own pace. If he is not understandable, I would think he has apraxia. My son says a lot of words, but my 9 year old daughter and myself are the only ones who can understand him mostof the time. He seems to be getting better with his speech, but he still has a long way to go. I wish you the best, God Bless You and your family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 Hi and welcome, Please try and talk to your case manager with EI, to try and get therapy going again. I agree, it is counter productive for him to be in a class where he is miserable. Were you an active participant in this group or were parents asked to leave? If that is the case, I don't know too many 25 month olds who separate easily and with strangers who are holding him. On top of that, you just moved which could also explain his reservations. If you can stay with him to help with the transition I think that would be helpful. For your own piece of mind, have the dev. ped. exam. Make a list of all your concerns, all his milestones etc... Does he understand what you are saying? Does he follow 1 step directions, can he imitate a word, does he have good eye contact? Can he lick a lollypop, try and blow bubbles, etc... To be honest even, 40 words at 2 doesn't seem horrible. Most of our kids were non-verbal at 2. Are they intelligible or only you understand them in context? I know there are a few military families on the list. They'll probably offer guidance on how to help you. Good luck. denise So before you get yourself crazy, have the appointment and take it from there.Perhaps try and get another opinion if you aren't comfortable with the first one. > Hi, I'm and my son Kristopher is 25 mos old and says about 40 > words. He has yet to be diagnosed with anything. I'm in the > process of getting an appt with a developmental ped at our Naval > Hospital and I'm just trying to educate myself as much as possible > in order to advocate for my child. I did have him evaluated at > 18mos by EI in CT and they seemed to think he was speech delayed and > offered speech therapy. He seemed to do well with them coming to > our home, but then we moved to WA (my husband is in the Navy and > we've moved 5 times in the last 2 years...he is currently deployed) > The state EI program here offered a pre-school class and speech > therapy (not in home, we live on base) Well Kristopher did not do > well at all in the class, he was 23 mos at the time and seemed to > cry half the class...he didn't want to sit, so the teachers would > try and hold him down and the entire thing just seemed counter- > productive to me. Soo I pulled him out, well thats when they > started recommending further evaluations. Well now I'm terrified he > will be diagnosed with something, and how can I be sure it's > the " right " one? If anyone has any suggestions on any tests I > should ask for, or anything I can do to prepare myself and my child > for the process, please feel free to let me know what you think. I > look forward to listening to everyones story and learning as much as > I can from this group. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 Although I took Kristopher out of the pre-school class he is still receiving speech therapy 1x a week. I did stay in the class with him and for the most part was the one that tried to make him sit when he needed to. I know he understood he needed to sit, because he would go get his little carpet, put it on the floor then run as fast as he could into this little house they had in the classroom It was when I would stand back for a moment, just to see if Kristopher would cooperate on his own that the teacher would grab him. I mean can't a toddler just have a minute? His speech therapist seems to understand most of what he says. I'd say someone on the street would probably understand 10 of his 40 words. He makes up a lot of words for things " Buzz Lightyear " is " Donna " and he'll argue with my 9yr old if he tries to correct him. He has his little quirks for sure. Lately, he has been refusing to take off his jacket or shoes outside of the house, he used to cry if a stranger even looked at him, now he shows his toys and tries to " talk " to them, but I'm almost positive I'd have a hard time leaving him with anyone at this point without him screaming his head off. He doesn't imitate words, but will imitate gestures and sounds. He has been trying to say " fish " lately, but it sounds like " dis " except really nasal. He's VERY active, my oldest told me last night that it seems like Kristopher is in every room at once. He can lick a lollipop, has blown bubbles hmm what else..seems to understand most of what I say. It's just so hard at this age to figure out what are " red flags " and what is just normal toddler behavior. I'm praying he will be cooperative with the ped. He did really well with the last eval, but they came to our house. I have days where I think he's going to be just fine and just needs a little time, but am scared I'm going to miss some " window of opportunity " to get him some help if it turns out he has other issues. Thanks to all who made it this far. Oh yeah, one more thing, my EI case manager was also a teacher in that pre-school class so it seems hard for me to communicate with her at times. Last time I talked to her she called me " " hehe my name is . Oh and one more question, I feel tempted to resist any labels until he is older, but would I have more resources for him if he did have a diagnosis? Has anyone else struggled with this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 Hello : I just wanted to say that you sound an awful lot like me! First, I agree about the red-flags! I never knew (and sometimes now - dont know) what is normal toddler bahavior and red-flag behavior. And the endless questions to the experts who know the difference was getting out of hand. I finally had to sit down with a speech/language pathologist who did his 2 year AND 3 year evaluation for an " off the record " conversation about my son . That therapist sees many, many kids.......all different kinds with many differenct communication impairments. I see just one kid, mine - and mom's are emotionally attached! She told me that she can spot within minutes if there are red-flags going on or not. And she would definitely tell me if she thought there was something else going on. Have you already had an evaluation? You may have answered this already...and I missed it. This therapist/evaluator was wonderful. She answered ALL of my questions, directly! She never beat around the bush at all....telling me, " yes, this is a problem and this is what you need to do " .......or " no, relax, that is ok " . also has issues with his coat/shoes....it drives me nuts! This weekend, it was SO nice outside, 60's and 70's like weather, but had to wear his winter coat....because he was so used to it....even though he fought wearing his winter coat in fall when the weather got cold. And after a struggle over the coat, I let him wear his winter coat outside for 10 minutes, then changed him over to a spring coat. But these behaviors is what gets to me the most.....MORE than his speech issues. He has come so far in just one year with his speech that I do think - OVER TIME - he will speak great! But those behaviors are what gets to me the most. Finally, I would not fight the diagnosis at this point. From what I have read, sometimes the diagnosis changes as the child changes. Get him into all the services you need, as much and as often and with the therapists that he likes and you like. Take care and good luck. Kim >He's VERY active, my oldest told me >last night that it seems like Kristopher is in every room at once. >He can lick a lollipop, has blown bubbles hmm what else..seems to >understand most of what I say. It's just so hard at this age to >figure out what are " red flags " and what is just normal toddler >behavior. I'm praying he will be cooperative with the ped. He did >really well with the last eval, but they came to our house. I have >days where I think he's going to be just fine and just needs a >little time, but am scared I'm going to miss some " window of >opportunity " to get him some help if it turns out he has other >issues. Thanks to all who made it this far. Oh yeah, one more >thing, my EI case manager was also a teacher in that pre-school >class so it seems hard for me to communicate with her at times. >Last time I talked to her she called me " " hehe my name is >. Oh and one more question, I feel tempted to resist any labels >until he is older, but would I have more resources for him if he did >have a diagnosis? Has anyone else struggled with this? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 Thanks, your message really made me feel better, especially about the jacket issue Hopefully he'll get over it by this summer! > > also has issues with his coat/shoes....it drives me nuts! This > weekend, it was SO nice outside, 60's and 70's like weather, but > had to wear his winter coat....because he was so used to it....even though > he fought wearing his winter coat in fall when the weather got cold. And > after a struggle over the coat, I let him wear his winter coat outside for > 10 minutes, then changed him over to a spring coat. But these behaviors > is what gets to me the most.....MORE than his speech issues. He has come > so far in just one year with his speech that I do think - OVER TIME - he > will speak great! But those behaviors are what gets to me the most. > > Finally, I would not fight the diagnosis at this point. From what I have > read, sometimes the diagnosis changes as the child changes. Get him into > all the services you need, as much and as often and with the therapists > that he likes and you like. > > Take care and good luck. > > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 Hi Ken, Welcome to the group although I am sorry for the reasons that brought you here. Yes, many of us have the " you look fine " look. I guess it's a blessing and a curse. The one thing I wonder is whether she has fully accepted what is going on physically. Is she resentful because she thinks you feel she can't take care of things herself? Do you find yourself overcompensating and doing more than you used to? In regard to being open to others sometimes it's easier to talk to people that are not immediately involved in the situation. Your sex life could be based on many things, your wife not feeling like a total woman anymore, her body hurting from Lupus and RA, reactions to medicine, etc. I wouldn't try and take it too personally and broach the topic with her when neither one of you is frustrated or too emotional. If someone would have told me 7 years ago that I would turn down advances from my wife I would have said they were crazy. It's amazing though how much of a toll these diseases can have on a person physically and emotionally. There was a good article in the lastet issue of Arthritis Today about intimacy. You should try and get a copy. I hope that you both are able to discuss these issues and cope with them. These diseases are horrible in so many ways and one learns how important a strong support group can be. All my best, Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 Welcome, Ken! I am very sorry to read that you and your wife are having such difficulties. Problems such as yours are very common for couples who are trying to cope with the challenges chronic illness presents. Does your wife know how you are feeling about things? For example, would anything you told us about the situation surprise her? The more open you both can be about how you perceive the situation and what you would like to see change, the better. Have you considered counseling? I strongly recommend it. There are therapists who have experience helping couples who are trying to deal with chronic illness. Although it is very difficult to overcome for many, even our physicians, please do everything you can to break the association of looking good with feeling good. A very smart fellow I know asks his loved one: " You look terrific, but how do you feel? " [ ] New to group > Hello guys, I am new to the group but not an RA sufferer. My wife > has lupus and RA. I know she suffers a lot and will get a lot out of > this group as well. To be honest, the reason I joined the group is > because while I try hard to understand, she does have the " you look > fine " look. But the truth is, there seems to be a lot of adverse > affects on us as a couple. First is her pushing me away, telling me > that I do too much for her. I try to be very attentive and > anticipate her needs, but she has begun to resent this. It has hurt > me very much to have to back off like this, because this is a > primary expression of love for me. All the while, she seems very > open to others. This is very frustrating to me. And then the sex > life is nill. I usually supress my feelings on this, but at times it > is very difficult, given her " you look ok " look. Then when I do > finally say something, it creates a huge problem, in which I feel to > be made out to be a bad guy. I need help now, any advice you can > give as to how I can deal with these problems, or understand them > better. I don't want to be an extra burden on her, but I also want > my marriage to be as much as it can be. > > Thanks, > Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 Hi Ken, So good to hear from a husband who is genuinely concerned about his wife. I hope she will join our group too, as I have gotten some wonderful support and feedback. I am in the process of being diagnosed, though they're not actually sure what just yet. But I have been in considerable pain and discomfort for nearly one year. My husband and I are a " mature " couple (translation: he is 66 and I am 56.) As he has had some health problems in the past year (Parkinson's disease) I hesitated to burden him with my problems and tried to tough it out. But I finally had to tell him how much I hurt, and how much it hurt me to not be able to do things myself. We have achieved a good communication, especially since he sometimes needs help with things, so that we ASK each other when we need help. If I am too tired or in too much pain to do the laundry, I will ask him, and he happily does it. Sometimes all we both need is to sit on the couch and be close to each other. But all this has greatly improved the overall communication in our marriage and made us more empathetic rather than resentful. Sometimes it means more to me to do something myself even if it hurts, just to feel more in control. My best to both of you, Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 Welcome Ken. It¹s admirable that you care enough to try to help your wife. I am a very independent person and have been know to do stupid things in order to do it myself. It¹s hard to admit that things we used to do so easily now are difficult and cause pain. It¹s only in the last year or so that I¹ve come to terms with the fact that I just can¹t do things anymore. Maybe you should step back a little and see if she will ask for help when she needs it. As far as the lacking love life, it¹s hard to have desire when it¹s painful to move. We learn to take advantage of the good days and snuggle on the bad ones. Here are some articles that may help: Sex and Arthritis http://www.orthop.washington.edu/arthritis/living/sex/01 Guide to Intimacy with Arthritis http://www.arthritis.org/resources/Relationships/Intimacy/flares.asp a > Hello guys, I am new to the group but not an RA sufferer. My wife > has lupus and RA. I know she suffers a lot and will get a lot out of > this group as well. To be honest, the reason I joined the group is > because while I try hard to understand, she does have the " you look > fine " look. But the truth is, there seems to be a lot of adverse > affects on us as a couple. First is her pushing me away, telling me > that I do too much for her. I try to be very attentive and > anticipate her needs, but she has begun to resent this. It has hurt > me very much to have to back off like this, because this is a > primary expression of love for me. All the while, she seems very > open to others. This is very frustrating to me. And then the sex > life is nill. I usually supress my feelings on this, but at times it > is very difficult, given her " you look ok " look. Then when I do > finally say something, it creates a huge problem, in which I feel to > be made out to be a bad guy. I need help now, any advice you can > give as to how I can deal with these problems, or understand them > better. I don't want to be an extra burden on her, but I also want > my marriage to be as much as it can be. > > Thanks, > Ken > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 Hi Kristy, Welcome. 's plagio was noticed at 13 weeks, she also has torticollis which caused her plagio. With the tort she had limited range of motion in her neck causing her to always hold her head in one spot. We did repositioning and had great results. Ella is so young I think you will be a repositioning success story. My advise is put Ella on her tummy several times a day. You can increase the time she is on her tummy as she gets used to it. She may cry a little but don't worry she will get used to it. It will help strengthen her body, tummy time is a baby's exercise. Keep working on getting her on her tummy often through the day. Tummy Time is a must! Try not to have her in baby swings, bouncy seats or carseat carriers. Carseat when you are driving, but don't leave her in one of those kinds that you carry around the mall when you are shopping. When you feed her try to hold her head so you are not putting pressure on the flat side. If you don't see results from repositioning within a few weeks, Not saying it will be corrected but you should see improvement, Then talk to your Ped. Take lots of photos of her head. Because you see her every day it maybe hard to know if you are getting correction.. Take weekly photos. If she have hair, take the photos after bath time while the head is still wet, that way you can see the shape clearly. Check out this site for repositioning info: http://www.cappskids.org/CAPPSRepositioning.htm I don't know about the sleep positioner. I used Air Flow Sleep Positioner By The First Years. You can order in on line from Amazon.com I like this one because as the baby begins to roll they can roll out of the others. The Air Flow one has high hard sides that the baby can't roll over. I live just west of Chicago. I can't say that I know of anyone else on the BB from Australia, you just may be the first one. I wish you the best and please keep us updated on how the repositioning is going. God Bless, Heidi-SAHM to 7-1/2, 4-3/4 (Apraxia, DSI) 12 months (VUR, tort/Plagio-DOCbandit 2/14/03 and FTT) > Hi everyone, > > My name is Kristy and i am new to the group! I have a nearly 8 week > old baby girl called Ella who has mild plagiocephaly. > > When Ella was about 3 weeks old, we noticed that one side of her > forehead was becoming more prominent than the other (it had always > been that way since she was born, but we thought it would go) so we > took her to the GP as we thought there was something wrong with her > brain?? The GP said it was nothing to worry about and just to mention > it to the paediatrician at the 6 week check up. > > Last Thursday we went for her check up and the Dr told us that Ella > has mild plagiocephaly and to start positioning her with alternate > sleeps and then he would review when she is 4 months old as she may > need a helmet and they have to check if the skull had fused because > this would be bad. > > As you can imagine i was worried - i had never heard of plagiocephaly > before - and so i started to read up on it. The Dr didnt seem very > interested or concerned so his information wasnt very forthcoming.... > i found your great support website and have learned so much. > > I am trying the positioning techniques as best i know how? and if > anyone has any tips then they would be greatly appreciated i hope > that if i work at this then things will have improved by her > appointment in 2 months time.... > > I am sorry for rambling on in my very first message...i am so worried. > > There is not much Australian information on plagiocephaly? Is there > anyone else here who is from Australia? > > My last question (for now ) is that i saw on the website a baby > positioner that looks perfect for us by Graco. It is called the Graco > Curved Back Sleeper (it is the one with the head support thing). I > cant get it here in Australia and no one seems to be able to order it > for me.. Does anyone know if i can order this product online as the > Graco website doesnt seem to let you order??? > > Anyway, i hope to get to know you all and your families! Thankyou for > listening. My husband and i appreciate it! > Take care > Love Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 Hi Kristy and welcome to the group. What a pretty little name, Ella, love it!! As far as the back sleeper, I think that you will hear the same from everyone, it didn't work. I started to use it the day that we came home from the hospital, until Jeffry was about 5 months old, and then he started to roll over, then it wasn't any good anymore. It did not work for us. If you are interested in yet, it is carried at Target, or Target.com. Best wishes and welcome. Heidi, mom to Jeffry, local helmet grad, MN New to Group Hi everyone,My name is Kristy and i am new to the group! I have a nearly 8 week old baby girl called Ella who has mild plagiocephaly. When Ella was about 3 weeks old, we noticed that one side of her forehead was becoming more prominent than the other (it had always been that way since she was born, but we thought it would go) so we took her to the GP as we thought there was something wrong with her brain?? The GP said it was nothing to worry about and just to mention it to the paediatrician at the 6 week check up. Last Thursday we went for her check up and the Dr told us that Ella has mild plagiocephaly and to start positioning her with alternate sleeps and then he would review when she is 4 months old as she may need a helmet and they have to check if the skull had fused because this would be bad.As you can imagine i was worried - i had never heard of plagiocephaly before - and so i started to read up on it. The Dr didnt seem very interested or concerned so his information wasnt very forthcoming.... i found your great support website and have learned so much.I am trying the positioning techniques as best i know how? and if anyone has any tips then they would be greatly appreciated i hope that if i work at this then things will have improved by her appointment in 2 months time.... I am sorry for rambling on in my very first message...i am so worried.There is not much Australian information on plagiocephaly? Is there anyone else here who is from Australia?My last question (for now ) is that i saw on the website a baby positioner that looks perfect for us by Graco. It is called the Graco Curved Back Sleeper (it is the one with the head support thing). I cant get it here in Australia and no one seems to be able to order it for me.. Does anyone know if i can order this product online as the Graco website doesnt seem to let you order???Anyway, i hope to get to know you all and your families! Thankyou for listening. My husband and i appreciate it!Take care Love Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 Hi Kristy =) This is a long posting, sorry =( I am in a similar situation to you. My son is almost 4 months old, and I had noticed the plagio around 8 weeks. My son's is mainly from sleeping with his head in the same position because he favors turning his head to the left (due probably to tight or shortened neck muscle or torticollis). I am bound and determined to do this without the helmet if I can. I found a great website about a success story with repositiong. I don't have the exact website, but if you type " 's Plagio Pages" in a search, it will probably come up. The thing I changed most is his sleeping position. He HATES to sleep on his side, but I have forced him to sleep on his side with a sleep positioner (I alternate which side each time he wakes up). I am already seeing very slight improvement after a week. I also try to keep him off his back as much as possible during the day. Since he can hold his head up pretty well, I put him in an exersaucer with a towel in front of him to keep him wedged in there. This might be an option for you a few weeks down the road when Ella can hold her head steady. I limit time in the swing, carseat, and stroller. I also put the bouncy/rocking seat in the closet because the way he would sit in it would cause a lot of pressure on the flat spot. I am less tempted to put him in it if it is in the closet. I also do neck exercises that were recommended by his pediatrician. This helps to loosen up the neck muscle so that he doesn't favor one side over the other. If I do have him in the carseat, stroller, or swing I put a rolled up towel on one side of his head to prop his head off of the flat spot. I also use something similar to the Noggin Nest when he is in his carseat to keep pressure off of the fflat spot. Tummy time is very important too! I know they hate it at that age, but just keep doing it several times a day for a few minutes at a time. I will tell you that Josh's first pediatrician was very casual about it at 8 weeks and merely suggested putting things of interest on the opposite side of his flat spot so that he would turn his head and keep off of the flat spot. That is also a good technique, but I believe he should have informed me better about plagiocephaly. Everyone kept telling me to not worry, it will round out on its own. Well, it only got worse. If I had been agressive at 8 weeks, he would already be much better by now. My advice is be proactive now. Your daughter is at a great age to see correction, probably without a helmet. It is worth the extra work to keep repositioning her. I have found that family and friends who are willing to help me during the day by giving me a break (they come over and play with him or hold him) helps me keep my sanity. Believe me, a few weeks and you will probably see some inprovement. As far as the positioner, try babiesrus.com They seem to have everything! The positioner could make all the difference! I wish you all the best with this! Keep us updated with Ella's progress. And if you get discouraged, write the group for encouragement. It helps to have friends in the same predicament. Take care, (Josh's mommy) Kristy <tuliet@...> wrote: Hi everyone,My name is Kristy and i am new to the group! I have a nearly 8 week old baby girl called Ella who has mild plagiocephaly. When Ella was about 3 weeks old, we noticed that one side of her forehead was becoming more prominent than the other (it had always been that way since she was born, but we thought it would go) so we took her to the GP as we thought there was something wrong with her brain?? The GP said it was nothing to worry about and just to mention it to the paediatrician at the 6 week check up. Last Thursday we went for her check up and the Dr told us that Ella has mild plagiocephaly and to start positioning her with alternate sleeps and then he would review when she is 4 months old as she may need a helmet and they have to check if the skull had fused because this would be bad.As you can imagine i was worried - i had never heard of plagiocephaly before - and so i started to read up on it. The Dr didnt seem very interested or concerned so his information wasnt very forthcoming.... i found your great support website and have learned so much.I am trying the positioning techniques as best i know how? and if anyone has any tips then they would be greatly appreciated i hope that if i work at this then things will have improved by her appointment in 2 months time.... I am sorry for rambling on in my very first message...i am so worried.There is not much Australian information on plagiocephaly? Is there anyone else here who is from Australia?My last question (for now ) is that i saw on the website a baby positioner that looks perfect for us by Graco. It is called the Graco Curved Back Sleeper (it is the one with the head support thing). I cant get it here in Australia and no one seems to be able to order it for me.. Does anyone know if i can order this product online as the Graco website doesnt seem to let you order???Anyway, i hope to get to know you all and your families! Thankyou for listening. My husband and i appreciate it!Take care Love KristyFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 Welcome, Fletchiek! I'm sorry that you've had so many surgeries and troubles and that you are still in so much pain. I hope when you see the neurologist again, he can help you. Are you getting help for your depression? [ ] New to group > Hello everyone-I am new to your group and wanted to introduce myself and post a few things about myself. I was diagnosed with RA a year ago in April. In Jan. I had noticed that my rings were getting so tight that I thought I better stop wearing any. I didn't realize they had gone up 4 ring sizes. I had been diagnosed with Raynalds many years ago I believe 1986. Back then I smoked and was told to stop smoking ASAP. I haven't smoked since 1986. It was around that time that I had to have 3 Carpal Tunnel surgeries because my hands (especially the right one) were really bad. After I had the surgeries done they seemed pretty good for about 6 yrs. except I was always going back to the doctor and get a refill when the weather here started to get cold and damp they would turn the oddest colors. In 1994 I started having numbness that never went away in my right thumb. I was concerned and my hand surgeon decided to get me into a neurosurgeon.I had a myelogram and CT scan done and found out that I had ruptured a cervical disk and that if I didn't have something done it was going to cause permanent damage. I had an anterior bone fusion in July over the 4th of July weekend, They used bone from the bone bank. I was in awful pain when I woke up in recovery. Needless to say my surgeon had no bed side manner. About 8 months passed and I felt awful especially my shoulder blades and right hand. The same neuro surgeon did a myelogram CT scan, anterior bone fusion from the bone bank. This time when I woke up I was not in as much pain as before so I thought it was cured. I also found out that I had DDD and not to expect my spine to be very good the older I got. In 1998 I was having a terrible time with my lower back and the upper cervical area again. I had the same tests and this time I had to sign a release to use my bone with a titanium plate and screws. I woke up in recovery on April 21,1999 and have been in pain every hour of every day since. Now with the arthritis and the degenerative disk disease I am in pain enough where I do go to a pain mangement doctor who is the best doctor. I also have an internist now instead of just a family doctor.The pain management doctor and internist work together to be sure my liver is ok,blood pressure and every other thing concerning my RA to hypertension. Last Friday I went back to my neurosurgeon I have had an awful pain in my left arm this time that never goes away and effects my left hand, shoulder blade, arm and neck, I can tell it is more then likely a nerve being pinched possibly by another rupture or bone spur. I had some normal xrays got all the way to his office only to find out he had an emergency. So I will end this email here. I get depressed so easily because my hands hurt so bad some days and my ankles, elbows and feet. I have given up a very good job because my medication wouldn't allow me to perform my job in accounting, I hope everyone is painfree tonight. You are in my prayers and I will post again soon > Fletchiek Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 Fletchiek, I understand what you mean that others don't get it. My family still thinks it's all in my head because the Rheumatoid Arthritus causes deformities and I don't have any deformities. My family lives 60 miles away so they don't see me on a daily basis. This is a wonderful group, you will get a lot of support and lots of information to help you understand this disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Welcome, Noreen! Glad you found us. Sorry about your RA diagnosis, but I understand that at least knowing what the problem is is often a big relief. Sorry, too, about your father. I would see a rheumatologist immediately. You're right about the current recommendations. Preventing damage is key. Also, joint changes may occur in the absence of an elevated sed rate. Hope you like it here, and I am looking forward to learning more about you. [ ] New to group > I was just recently diagnosed with RA. I have had aches and pains for years, > and actually felt somewhat relived to have an actual Dx. I'm 48 years old, > but just recently have been having problems severe enough with my hands to > make me unable to do things sometimes. (Like type!) > I'm quite aware of what RA can do. My dad was disabled at 55 from it. He had > both knees replaced, a hip, his wrists and feet surgerically repaired. He > also died at the age of 72 from emphysema, but, I wonder if that may have > actually been his > arthritis too, with lung involvment. > I'm really not scared about my future. I know there are new and better > medications out there. > So far, I don't have any joint damage on Xray, and although stiff and achy > every day, I only have " bad days " like every week or two. My physician > prescribed Rx strength naprosyn, since I'd been taking 2 Aleve twice a day > for several years anyway. He suggested my next step is a rheumatologist. > I know I'm not bad yet, but current literature out there seems to recommend > getting advice and treatment early to prevent further damage. > Should I ask to be referred to the rheumatologist, or wait until my sed rate > starts to climb? (so far it is only a little elevated on bad days. oh, I > work in a doctor's office lab, so I can do sedrates any time I have the > urge.) > > Thanks for listening, and for any advice you have out there. > > Noreen Saukko Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Welcome, Noreen. Glad to have you join us, sorry for the reasons. You will find this a great group to belong to as it becomes just like a second family. Feel free to join right in and you will get to know everyone is a real short time. Whine if you want, share if you want, emphasize if you want, vent.......cry......share the good times and the bad......there is always someone who will online to commiserate with you. Our moderator and owner are tops and always there to answer questions and do research for answers they do not readily have available. (besides they are great women to know). Our family consists of many women and a few men and you won't find a better bunch to be associated with. We are in the beginning stages of planning a get together for all that can travel just to meet each other and put a face to the words we exchange everyday. Where are you located? Some places that have been thrown out are........Florida.......Las Vegas........Poconos........NYC....DC....Atlanta...........Georgia.........Pacif\ ic Northwest (WA and Portland areas particularly).........put your input into the mix and see how this developes,,,,,,,,,we are going to have one giant talkfest!!!!!!!!!!!! Guess what, I think you are eligible for the '49er division of the RA-support group. I'll let the others fill you in on that as I'm looking back on 49 for a good many years and no longer eligible unless they decide to count anniversaries of said year. Take care........ Remember you are welcome and will always be in my prayers for a better day. You have made the first step to a better day by just joining our family here. Jan in CA +/:=) Noreen Saukko <nsaukko@...> wrote: " " ...............I'm 48 years old,............... " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Thanks for the welcomes. Hope to be able to contribute as well as learn from this group. I'm located in Northern Minnesota, about half way between Duluth, and the Canadian border. OK, what's a 49ers divison? Noreen Re: [ ] New to group Where are you located? Guess what, I think you are eligible for the '49er division of the RA-support group. I'll let the others fill you in on that as I'm looking back on 49 for a good many years and no longer eligible unless they decide to count anniversaries of said year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Thanks for the welcome. My Dad was a great guy, and if I have to have the same disease, I hope I can deal with it half as well as he did. Noreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 Welcome Noreen. I have to agree with that seeing a rheumy is a good idea. Early treatment can slow damage. I've read that sometimes early erosion isn't visible on x-ray but can be seen on MRI's. I'm glad you're RA has been mild and manageable and hope it never gets as bad as your dad's. a > I was just recently diagnosed with RA. I have had aches and pains for years, > and actually felt somewhat relived to have an actual Dx. I'm 48 years old, > but just recently have been having problems severe enough with my hands to > make me unable to do things sometimes. (Like type!) > I'm quite aware of what RA can do. My dad was disabled at 55 from it. He had > both knees replaced, a hip, his wrists and feet surgerically repaired. He > also died at the age of 72 from emphysema, but, I wonder if that may have > actually been his > arthritis too, with lung involvment. > I'm really not scared about my future. I know there are new and better > medications out there. > So far, I don't have any joint damage on Xray, and although stiff and achy > every day, I only have " bad days " like every week or two. My physician > prescribed Rx strength naprosyn, since I'd been taking 2 Aleve twice a day > for several years anyway. He suggested my next step is a rheumatologist. > I know I'm not bad yet, but current literature out there seems to recommend > getting advice and treatment early to prevent further damage. > Should I ask to be referred to the rheumatologist, or wait until my sed rate > starts to climb? (so far it is only a little elevated on bad days. oh, I > work in a doctor's office lab, so I can do sedrates any time I have the > urge.) > > Thanks for listening, and for any advice you have out there. > > Noreen Saukko > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 Hi Kim & welcome to our group!! We've heard of Danmar Products in the past in our group but the helmet you're describing sounds different than others I've heard about. Is the helmet exterior hard with foam padding inside? The foam piece on the outside you're describing sounds different. It does sound like his headshape could be changing from your description, often in the beginning stages of improvement the head appears to be bumpy/lumpy. Please don't feel guilty about this. The main thing is does not mind his helmet and it should help him out Welcome again, keep us posted on his progress. If you have any pictures of in his helmet we'd love to see em. Debbie Abby's mom DOCGrad MI kskoob <Teachrok@...> wrote: Hi. My son is 6 months old and has been in a helmet for 3 weeks. I noticed his flattened head at around 4 months, I brought it up to our pediatrician at our 4 month check up and she agreed it was plagiocephaly and referred us to a specialist. We live in NC and the helmet we got is not the starband or DOC band it is made by Danmar Products. The way I understand this helmet to work is that is just keeps from rolling onto the one side of his head that is flattened. There is a piece of foam (looks like a bar of soap) velcroed to the back of his helmet on the left side to keep him from rolling his head in that direction. Anyway, my question is that if anyone has a helmet similar to this how long did it take to see results? The ot told us we would see results within a week or two, but I haven't noticed much change. There is a place on the bottom of his head that has popped out and created a ridge. Is this what is suppose to happen. I have felt a lot of guilt about having to wear this helmet, so I am probably just being paranoid. I just want it to work, so he can have a beautiful round head. is such a happy and easy baby and he has handled wearing the helmet wonderfully. Thanks for listening- any input would be appreciated.Kim mother to (6 months) banded 5/23 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 Kim, HI there and welcome. I don't recall ever hearing of this band but the theory sounds great!!! My daughter was banded with an Active band at 8.5 months of age and we didn't notice the correction until the ortho pointed it out to us. may be recieving correction and because you look at it everyday, can't tell. How often does go for adjustments? Is this helmet a clear or colored device? Is it hard or soft all over? Sorry for all the questions, I was just thinking that this molding device sounds interesting. Dustie, mom to , DOC Grad '03 > Hi. My son is 6 months old and has been in a helmet for 3 > weeks. I noticed his flattened head at around 4 months, I brought it > up to our pediatrician at our 4 month check up and she agreed it was > plagiocephaly and referred us to a specialist. We live in NC and the > helmet we got is not the starband or DOC band it is made by Danmar > Products. The way I understand this helmet to work is that is just > keeps from rolling onto the one side of his head that is > flattened. There is a piece of foam (looks like a bar of soap) > velcroed to the back of his helmet on the left side to keep him from > rolling his head in that direction. Anyway, my question is that if > anyone has a helmet similar to this how long did it take to see > results? The ot told us we would see results within a week or two, > but I haven't noticed much change. There is a place on the bottom of > his head that has popped out and created a ridge. Is this what is > suppose to happen. I have felt a lot of guilt about having to > wear this helmet, so I am probably just being paranoid. I just want > it to work, so he can have a beautiful round head. is such a > happy and easy baby and he has handled wearing the helmet > wonderfully. Thanks for listening- any input would be appreciated. > Kim mother to (6 months) banded 5/23 Quote Link to comment Share on other sites More sharing options...
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