Guest guest Posted August 21, 2008 Report Share Posted August 21, 2008 Hi , Thanks for your reply and best of luck for you and your little man. I'll keep my fingers crossed for us both! Re: New to group Hi, . I'm new too. Just wanted to say HI! Your story is very similar to mine...my son is almost 3 and has many of the same issues. We just started TriEnza a couple of weeks ago and are still not on full doses yet (having trouble administering them with lunch at school.) So, the only input I have right now is to say start slow. We are just doing them with foods he already had in his diet and he is still having some " withdrawl symptoms " (probably from the little soy left in his diet.) We started on 1/2 dose one meal per day for a few days, then 1/2 dose for two meals...and so on...as per Houston's recommendations. Hope you find success (hope we find it too!) Good luck to you! > > Hi everyone, > > I have just joined and thought I would introduce myself and the reason for joining. My name is and I have two adorable little boys aged almost 5yrs & 2.5yrs, my oldest son is the reason I'm here. We have spent the last 3 years trying to help him in every which way possible. The Paed told us just after he turned two that he was 95% sure he would be making a diagnosis of autism but wanted to wait another six months to see how he progressed. In that time I implemented the " failsafe " diet and by the time we went back he had made huge improvements and even shook the Paed's hand and said hello. This particular Paed was a non believer in diets making a difference (especially with autism) and was quite amazed at the difference and proceeded to tell us he was no longer confident in making a diagnosis. We saw one other paed also not very helpful and hence started our journey into Biomed treatments. > > We sought the advice of a dietitian who hadn't come across a child as sensitive as him before. At age 3 we removed gluten & casein and unfortunately in the process of us removing more and more from his diet he has become super sensitive and intolerant to everything but beef, lamb, chicken, potato, rice, canola oil & sugar. He breaks out in hives from things the doctors and specialists have never come across before and finally at the start of the year I convinced our allergist to write me a script for a hypoallergenic formula called Elecare as I have been so desperately worried about his nutrition. He made some improvements in speech, concentration & the hyperactivity lessened once he started on the formula - but we are far from there yet. We are having Biomed treatments but still need help with the diet & food intolerances/ sensitivies. > > The last three years I've lived my life in the kitchen, cooking preparing and often throwing out things he won't eat. Driving from one store to the next for ingredients he can tolerate, encouraging every single meal time to get him to eat a mouthful. Many nights researching to find something that may help, trawling through recipes and trying to create my own out of what very limited ingredients he can tolerate is almost impossible. I'm tired beyond belief this journey has certainly taken a lot out of me, but like so many I will do anything I have to for my kids and certainly won't stop until I get there. > > To cut this short (I'd be here for hours otherwise) I met a lady who's son's symptoms are very similar to mine and she mentioned she tried digestive enzymes and was having great success. I have been again researching and feel there is a ray of hope that in time he may be able to start eating normally and we can have a life! > > So far I'm looking at Houston Trienza and another one was called DigestGold (enzymedica) , I have a lot more of research to do I'm sure and would love any input/advice. > Look forward to reading the posts and learning more. > > > QLD, Australia > > Win a MacBook Air or iPod touch with 7. http://au.docs. / homepageset<http://au.docs. / homepage set> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2008 Report Share Posted August 21, 2008 Hi , Yes I am a member of the Biomed group and Jan a few years ago helped us start on the biomed adventure. I have just learnt getting the enzymes through customs is a problem - I'll look into this some more. Thanks again for your reply - greatly appreciated! Kind regards Re: New to group Hi , Are you also a member of the australian biomed group? It's a great place to get local resources - the moderator Jan is fantastic. So are all the other members. They were very helpful and supportive when I had to plan/execute a 3 month visit home with my son while sticking to his diet and supplements. Getting enzymes from the USA through Australian customs is quite difficult at the moment, so please check in with the ozzie biomed parents about how they are managing it. I took all of mine in my luggage with a note from my son's doctor to avoid the problems. Here is the name if you haven't already joined: " biomedicalautismgr oup " . (Australian living in California.) > > Hi everyone, >  > I have just joined and thought I would introduce myself and the reason for joining. My name is and I have two adorable little boys aged almost 5yrs & 2.5yrs, my oldest son is the reason I'm here. We have spent the last 3 years trying to help him in every which way possible. The Paed told us just after he turned two that he was 95% sure he would be making a diagnosis of autism but wanted to wait another six months to see how he progressed. In that time I implemented the " failsafe " diet and by the time we went back he had made huge improvements and even shook the Paed's hand and said hello. This particular Paed was a non believer in diets making a difference (especially with autism) and was quite amazed at the difference and proceeded to tell us he was no longer confident in making a diagnosis. We saw one other paed also not very helpful and hence started our journey into Biomed treatments. >  > We sought the advice of a dietitian who hadn't come across a child as sensitive as him before. At age 3 we removed gluten & casein and unfortunately in the process of us removing more and more from his diet he has become super sensitive and intolerant to everything but beef, lamb, chicken, potato, rice, canola oil &  sugar. He breaks out in hives from things the doctors and specialists have never come across before and finally at the start of the year I convinced our allergist to write me a script for a hypoallergenic formula called Elecare as I have been so desperately worried about his nutrition. He made some improvements in speech, concentration & the hyperactivity lessened once he started on the formula - but we are far from there yet. We are having Biomed treatments but still need help with the diet & food intolerances/ sensitivies. >  > The last three years I've lived my life in the kitchen, cooking preparing and often throwing out things he won't eat. Driving from one store to the next for ingredients he can tolerate, encouraging every single meal time to get him to eat a mouthful. Many nights researching to find something that may help, trawling through recipes and trying to create my own out of what very limited ingredients he can tolerate is almost impossible. I'm tired beyond belief this journey has certainly taken a lot out of me, but like so many I will do anything I have to for my kids and certainly won't stop until I get there. >  > To cut this short (I'd be here for hours otherwise) I met a lady who's son's symptoms are very similar to mine and she mentioned she tried digestive enzymes and was having great success. I have been again researching and feel there is a ray of hope that in time he may be able to start eating normally and we can have a life! >  > So far I'm looking at Houston Trienza and another one was called DigestGold (enzymedica) , I have a lot more of research to do I'm sure and would love any input/advice. > Look forward to reading the posts and learning more. >  > > QLD, Australia > > > Win a MacBook Air or iPod touch with 7. http://au.docs. / homepageset > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 Hi - welcome to the group. There is so much that I am still learning about this whole RA thing - it is an auto-immune disorder, though. I take Sulfasalazine daily, MTX weekly and Folic Acid every day EXCEPT the day of the MTX. I also am taking part in a clinical study for a new RA med called TCZ, but I may have to stop the study due to some undesirable side effects. I wondered if you stopped taking the Folic Acid on the day you take the MTX because it can make a world of difference on how MTX works. As far as your feelings of frustration, maybe you should check back with your Rheumy - you may need a med adjustment. Best of luck to you. Keep us posted....Doreen > > Hi everyone. I'm 30 yrs old and was diagnosed with RA 3 yrs ago. A > year ago I was considered moderate RA. Now I am not so sure. I see > my rhuematologist every 3 months and thought this was finally under > control. However, the past couple of months have been tough. I am > battling with all the medication I take for this and am just > feeling... I don't know. Frustrated. I think I need to educate > myself more on RA, alternate therapies and maybe some stories about > it going into remission all on it's own? Has anyone ever heard of > this happening? Has anyone ever experienced constant aches with > meds? I take mtx weekly, folic acid daily, and humira injections > every other week. When I started the Humira a year ago, it was > great-- now, I think I am just used to it? I don't know anyone else > with RA and am hoping to connect with people that deal with the > challenges of this stupid, horrible illness..disease...what is it > considered anyway? I think I am feeling down because my foot and > hip is killing me. I sure don't feel 30. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 , I'm 31 and I have had RA for the past 7 years and I haven't felt my age in years. I would talk to your rheumy, I haven't tried humira ans I don't know the dosing for it, but maybe you just need to get a higher dose. I consider myself fairly knowledageable on RA, but I am always learning something new, thanks to this group. You have come to the right place...here, everyone knows exactly how you feel. > > Hi everyone. I'm 30 yrs old and was diagnosed with RA 3 yrs ago. A year > ago I was considered moderate RA. Now I am not so sure. I see my > rhuematologist every 3 months and thought this was finally under > control. However, the past couple of months have been tough. I am > battling with all the medication I take for this and am just feeling... > I don't know. Frustrated. I think I need to educate myself more on RA, > alternate therapies and maybe some stories about it going into > remission all on it's own? Has anyone ever heard of this happening? Has > anyone ever experienced constant aches with meds? I take mtx weekly, > folic acid daily, and humira injections every other week. When I > started the Humira a year ago, it was great-- now, I think I am just > used to it? I don't know anyone else with RA and am hoping to connect > with people that deal with the challenges of this stupid, horrible > illness..disease...what is it considered anyway? I think I am feeling > down because my foot and hip is killing me. I sure don't feel 30. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2008 Report Share Posted October 1, 2008 Jen, Hello, sounds like my son at that age. Can't say it gets easier, but their are alot more good than bad days. My son had an obsession with star wars but now it has turned to history, which is a good thing. The only thing that breaks my heart is he still has no friends. But my son doesn't mind, because his intelligence is so far above his peers, he can't tolerate the other kids for lack of. The parents are the ones who have to learn that the children don't mind not having friends. Welcome to the group Hi everyone. I just found out about this group and I'm happy to have found it, I've related to so many of the posts already. I have an 8 year old son with aspergers, ADHD, dsygraheia and some anxiety issues. He is main stream and last year was pulled out only part of the day, but this year he is suppose to have an aid in the class room for one period. (even though most of those in attendance at his last IEP meeting thought he would benefit from a full day aid, but that's a story for another day.) lol He is fairly high functioning, but lacks very much in the social end. He really has no friends at school, and plays alone at recess. (it breaks my heart, because he's such a good kid) I can't wait to get more advice through all the posts I plan to go back and read. Oh and Star Wars is the latest obsession these days. lol Thanks, and I look forward to being apart of this group. Jen in NJ Find phone numbers fast with the New AOL Yellow Pages! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2008 Report Share Posted October 1, 2008 You are right! Our AS children are happy to be alone. It does not mean they do not like people. On the contrary, for instance, my teen AS d(17), loves and understand even those children that might have been hurtful to her. She is a freshman in College and her roommate is a normal nice girl, they do not do things together but I can see they get along well, each one doing their own things. Problems: many! But we are dealing with them as they come. I have had many of the issues parents talk about here, - can see that college turned out (until now at least) the best environment for her, even though she would like to be at home in her room, following her own routines. I am trying to show her how confort is not always the best. Sent from my BlackBerry® smartphone with SprintSpeedFrom: teresa walker <rockymtnjd@...>Date: Wed, 1 Oct 2008 03:57:47 -0700 (PDT)< >Subject: Re: ( ) New to Group Jen, Hello, sounds like my son at that age. Can't say it gets easier, but their are alot more good than bad days. My son had an obsession with star wars but now it has turned to history, which is a good thing. The only thing that breaks my heart is he still has no friends. But my son doesn't mind, because his intelligence is so far above his peers, he can't tolerate the other kids for lack of. The parents are the ones who have to learn that the children don't mind not having friends. Welcome to the group Hi everyone. I just found out about this group and I'm happy to have found it, I've related to so many of the posts already. I have an 8 year old son with aspergers, ADHD, dsygraheia and some anxiety issues. He is main stream and last year was pulled out only part of the day, but this year he is suppose to have an aid in the class room for one period. (even though most of those in attendance at his last IEP meeting thought he would benefit from a full day aid, but that's a story for another day.) lol He is fairly high functioning, but lacks very much in the social end. He really has no friends at school, and plays alone at recess. (it breaks my heart, because he's such a good kid) I can't wait to get more advice through all the posts I plan to go back and read. Oh and Star Wars is the latest obsession these days. lol Thanks, and I look forward to being apart of this group. Jen in NJ Find phone numbers fast with the New AOL Yellow Pages! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2008 Report Share Posted October 1, 2008 My son would rather be with friends than be alone. He can be alone, which is good since he has trouble making friends, but he'd much rather spend time with a boy his age than sit in his room or play video games by himself. Re: ( ) New to Group Jen, Hello, sounds like my son at that age. Can't say it gets easier, but their are alot more good than bad days. My son had an obsession with star wars but now it has turned to history, which is a good thing. The only thing that breaks my heart is he still has no friends. But my son doesn't mind, because his intelligence is so far above his peers, he can't tolerate the other kids for lack of. The parents are the ones who have to learn that the children don't mind not having friends. Welcome to the group Hi everyone. I just found out about this group and I'm happy to have found it, I've related to so many of the posts already. I have an 8 year old son with aspergers, ADHD, dsygraheia and some anxiety issues. He is main stream and last year was pulled out only part of the day, but this year he is suppose to have an aid in the class room for one period. (even though most of those in attendance at his last IEP meeting thought he would benefit from a full day aid, but that's a story for another day.) lol He is fairly high functioning, but lacks very much in the social end. He really has no friends at school, and plays alone at recess. (it breaks my heart, because he's such a good kid) I can't wait to get more advice through all the posts I plan to go back and read. Oh and Star Wars is the latest obsession these days. lol Thanks, and I look forward to being apart of this group. Jen in NJ Find phone numbers fast with the New AOL Yellow Pages! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2008 Report Share Posted October 1, 2008 Welcome to our group, Jen! Feel free to join in anytime you like! RoxannaYou're UniqueJust like everyone else... ( ) New to Group Hi everyone. I just found out about this group and I'm happy to have found it, I've related to so many of the posts already. I have an 8 year old son with aspergers, ADHD, dsygraheia and some anxiety issues. He is main stream and last year was pulled out only part of the day, but this year he is suppose to have an aid in the class room for one period. (even though most of those in attendance at his last IEP meeting thought he would benefit from a full day aid, but that's a story for another day.) lol He is fairly high functioning, but lacks very much in the social end. He really has no friends at school, and plays alone at recess. (it breaks my heart, because he's such a good kid) I can't wait to get more advice through all the posts I plan to go back and read. Oh and Star Wars is the latest obsession these days. lol Thanks, and I look forward to being apart of this group. Jen in NJ Find phone numbers fast with the New AOL Yellow Pages! No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.169 / Virus Database: 270.7.5/1697 - Release Date: 9/29/2008 7:40 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2008 Report Share Posted October 1, 2008 , I agree with you, my son would rather be with a friend than be alone too. When he is alone it gives him too much time to obsess on things he doesnt need to be worrying about. He seems much happier when he is with a friend and has less anxiety believe it or not. When he is alone he tends to think too much and worry about what if's. I try to plan to have a friend here on weekends to spend the night and he has a friend that comes over after school for a couple hours 3 or 4 times a week. My son will not go to anyones house, he has too much anxiety so I always have his friends over here, which I dont mind , but I hate the fact that he doesnt leave the house except for school or when we take him some place. I have a question for anyone out there. My son scares easily. If he is in the same room with me playing or whatever and I say something out of the blue, in a normal tone voice, he jumps out of his skin. I scare the crap out of him. How??? Im in the same room with him and I just talk. I asked the doctor about this and he said its because when collin is thinking or playing he is in his own world and blocks out all noises on the outside , so when I say something I enter his quite world and scare the crap out of him. I guess I can see this but it is very irritating cause he does it all day long. I feel bad for him, his little heart feels like its beating out of his chest. He is also afraid of the dark. Not to the point that I have to leave a light on at bedtime, but he just doesnt like the dark and says he is sort of afraid of it. Maybe most kids are like that. Any way if any one has a comment on my question please post it. Thanks, > > My son would rather be with friends than be alone. He can be alone, which is good since he has trouble making friends, but he'd much rather spend time with a boy his age than sit in his room or play video games by himself. > > > > Re: ( ) New to Group > > Jen, > > Hello, sounds like my son at that age. Can't say it gets easier, but their are alot more good than bad days. My son had an obsession with star wars but now it has turned to history, which is a good thing. The only thing that breaks my heart is he still has no friends. But my son doesn't mind, because his intelligence is so far above his peers, he can't tolerate the other kids for lack of. The parents are the ones who have to learn that the children don't mind not having friends. Welcome to the group > > Hi everyone. I just found out about this group and I'm happy to have found it, I've related to so many of the posts already. > > I have an 8 year old son with aspergers, ADHD, dsygraheia and some anxiety issues. He is main stream and last year was pulled out only part of the day, but this year he is suppose to have an aid in the class room for one period. (even though most of those in attendance at his last IEP meeting thought he would benefit from a full day aid, but that's a story for another day.) lol > > He is fairly high functioning, but lacks very much in the social end. He really has no friends at school, and plays alone at recess. (it breaks my heart, because he's such a good kid) I can't wait to get more advice through all the posts I plan to go back and read. > > Oh and Star Wars is the latest obsession these days. lol > > Thanks, and I look forward to being apart of this group. > > Jen in NJ > > > > ________________________________ > Find phone numbers fast with the New AOL Yellow Pages! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2008 Report Share Posted October 2, 2008 I was thinking about Collin´s being easily scared.I was as a child too, and I still jump high if someone comes behind my back.It possibly has connection with being in one´s own world for moments and also with the fact, that it is hard to recognise people, somewhat of a prosopagnosy or what it is called. I sometimes don´t even recognise my own family IF I DON´T EXPECT TO SEE THEM. It is sort of processing delay, again! I perfectly recognise the librarian in the library when I speak to her about books, but if I meet her in the street with her coat on, it may take minutes before recognizing her. --- Den tors 2008-10-02 skrev gina <ginak1117@...>: Från: gina <ginak1117@...>Ämne: Re: ( ) New to GroupTill: Datum: torsdag 2 oktober 2008 03.34 ,I agree with you, my son would rather be with a friend than be alone too. When he is alone it gives him too much time to obsess on things he doesnt need to be worrying about. He seems much happier when he is with a friend and has less anxiety believe it or not. When he is alone he tends to think too much and worry about what if's. I try to plan to have a friend here on weekends to spend the night and he has a friend that comes over after school for a couple hours 3 or 4 times a week. My son will not go to anyones house, he has too much anxiety so I always have his friends over here, which I dont mind , but I hate the fact that he doesnt leave the house except for school or when we take him some place. I have a question for anyone out there. My son scares easily. If he is in the same room with me playing or whatever and I say something out of the blue, in a normal tone voice, he jumps out of his skin. I scare the crap out of him. How??? Im in the same room with him and I just talk. I asked the doctor about this and he said its because when collin is thinking or playing he is in his own world and blocks out all noises on the outside , so when I say something I enter his quite world and scare the crap out of him. I guess I can see this but it is very irritating cause he does it all day long. I feel bad for him, his little heart feels like its beating out of his chest. He is also afraid of the dark. Not to the point that I have to leave a light on at bedtime, but he just doesnt like the dark and says he is sort of afraid of it. Maybe most kids are like that. Any way if any one has a comment on my question please post it. Thanks, >> My son would rather be with friends than be alone. He can be alone, which is good since he has trouble making friends, but he'd much rather spend time with a boy his age than sit in his room or play video games by himself. > > > > Re: ( ) New to Group> > Jen,> > Hello, sounds like my son at that age. Can't say it gets easier, but their are alot more good than bad days. My son had an obsession with star wars but now it has turned to history, which is a good thing. The only thing that breaks my heart is he still has no friends. But my son doesn't mind, because his intelligence is so far above his peers, he can't tolerate the other kids for lack of. The parents are the ones who have to learn that the children don't mind not having friends. Welcome to the group > > Hi everyone. I just found out about this group and I'm happy to have found it, I've related to so many of the posts already.> > I have an 8 year old son with aspergers, ADHD, dsygraheia and some anxiety issues. He is main stream and last year was pulled out only part of the day, but this year he is suppose to have an aid in the class room for one period. (even though most of those in attendance at his last IEP meeting thought he would benefit from a full day aid, but that's a story for another day.) lol> > He is fairly high functioning, but lacks very much in the social end. He really has no friends at school, and plays alone at recess. (it breaks my heart, because he's such a good kid) I can't wait to get more advice through all the posts I plan to go back and read.> > Oh and Star Wars is the latest obsession these days. lol> > Thanks, and I look forward to being apart of this group.> > Jen in NJ> > > > ____________ _________ _________ __> Find phone numbers fast with the New AOL Yellow Pages!> Låna pengar utan säkerhet. Sök och jämför lån hos Kelkoo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2008 Report Share Posted October 2, 2008 Welcome! Glad you feel better, it takes a little bit to find the right meds that work. This is a great group, hope you stay awhile, Tawny --- In , " kyblonde1126 " <r_robinson1126@...> wrote: > > Greetings from the Bluegrass state! I've had RA since 2005. It > started with swelling and pain in my hands and general pain all over. > I'm taking mtx pills, etolac, and now humira shots every other week. > I've been on humira for 2 months and starting to feel an increase in > energy level. I've enjoyed reading the message board the past few > days. It helps to know that I'm not alone coping with this painful > disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2008 Report Share Posted October 5, 2008 Cheryl, We are glad to have you as an addition to this group. If you have anything to add to a question or comment, please don't hesitate to jump in. We all learn from each other. When you see your rheummy next be sure to let him know that the current meds don't seem to be working. It may be time for a change instead of adding more. I recently added Enbrel, but once it starts working I will be able to drop the MTX. I hope you have a good day. Shirley --- In , " cheryl.dines " <cheryl.dines@...> wrote: > > Hi all. I am new to this group and was diagnosed with RA in Dec 07. > Being 37 and quite healthy and relatively fit, I have struggled so much > with the thought of having this hideous disease. I take mtx, arava, > plaquenil, sulphasalazine and other supplements to offset the side- > effects. What is next? Surely they can't make me take more? I still > experience pain with this past week having it in my shoulders in > addition to hands, feet, knees and ankles! I am so new to all of > this I still don't recognise it until I have pain for several days. > Then I have to take prednisone to try and bring it under control. I > tried Mobic but it doesn't seem to work for me. > > Just wondering if anyone can give me any advice on how to cope > mentally. I can take the pain, but the thought of deformed joints and > a life of managing a condition just doesn't seem possible. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 Welcome! Our 2 1/2 year old son was in a similar situation (he didn't qualify for speech at 18 months but then did at 24 months). He also lost a few words...for ex. he used to say " bubble " but then would only say " bub. " He worked with Early Intervention from about 24 months and has now transitioned into Child Find preschool (he also has a diagnosis of mild PDD-NOS). The SLP had to work with him for about 5 months before being able to really make the official diagnosis of apraxia. It sounds like you're definitely doing all the right things, the signing will really help ease frustration...we LOVE " Signing Time " DVDs. I recently started giving one capsule of Nordic Naturals Complete Omega 3,6,9, which is the same formula as the ProEFA. You can order ProEFA through http://www.speech411.com .. I just squeeze the capsule into juice in the morning. And I'll be following what I've seen recommended by many parents on the board...one capsule for a month, then add another capsule for another month, and then add one capsule of ProEPA. Our son had been on another type of DHA supplement, but over this past week, I've seen lots of improvement, he's said several new words since starting the Nordic Naturals (I hadn't seen this type of improvement on the other brand, so it looks like he's responding to the Nordic Naturals better). Anyway, hope that helps, and good luck! B. From: Chrissy <chrissyb2@...> Subject: [ ] New to Group Date: Monday, October 13, 2008, 5:50 PM Hi There, My son Aiden is almost 26 months. At 18 months he was tested through Indiana's First Steps program and was found to be slightly speech delayed, but since he excelled developmentally they said he didn't qualify for services at that time. We had him tested again at 23 months and this time he qualified for speech only. He has a IFSP (IEP for children 0-3). He doesn't have a diagnosis and his Speech Therapist (through First Steps) says it is too early to tell if he has apraxia. He has speech therapy in our house one day a week for 60 minutes. She uses " play therapy " with him. We also had his hearing tested at 20 months to rule out any hearing issue and he was fine. My biggest concern is that he has lost words. At 14 months he said his first words " itty " (kitty) and " kee " (cookie) and (my husband's name). He would say these over and over in context. At around 18 months he started saying " mom " and lost the other 3 words. Now at 26 months he says 9 words/approximation s. We have been teaching him signs to aid in both our frusterations, he knows 25 signs that he uses regularly. He counts pictures, stairs, etc but it comes out uh, uh, uh, uh. He is just starting to learn and repeat some animal sounds and make vehicle sounds while he plays. Everything is uh, uh?, uh! Which is very frusterating. Last week, I signed him up for a speech program through St. Xavier University in Chicago. It will start in January and last 12 weeks. He will get evaluated there, and recieve one hour of speech a week from a Master's Student in Speech disorders. It is called the Ludden Clinic. I guess there are several similar clinics throughout the US that offer this at reduced cost to parents (since our healthcare doesn't cover speech). Last week, I also started him on Fish Oil Supplements by Dr. Sears. They are chewable orange flavored. The serving is 5 a day for only a total of 415mg of Omega 3 Fatty Acids. He hates them and I bribe him with M & M (I know, bad). I have read that the theraputic dose for the Omega 3 is 500-1000mg. How many mg does your LO take? I was looking into the Nortic Naturals, ProEPA do you buy the capsules and smash them into something, or the liquid? Also, are you buying the jr. version or the full strength? Thanks for the support! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 Tina, welcome to the group. People with RA are at a higher risk of lymphoma independent of the DMARDs they may use. Uncontrolled RA inflammation is also linked with the development of lymphoma. Please go see your rheumatologist soon. Not an MD On Fri, Nov 7, 2008 at 8:01 PM, tinasmmrs <tinasmmrs@...> wrote: > Hi! I am 37 and was originally dx with RA when I was 20 and in > college. My rheumatologist said I had some similarities with JRA when > I was dx which would make sense b/c about 7 months before was when > the fatigue set in. I went into " remission " when I became pregnant > with my first child at 27. I had another son and continued to stay in > remission. I was able to discontinue all meds and have't been on > anything but Advil here and there until the past few months. > Unfortunately I have been putting off calling the rheumatologist > b/c I have feared it is slowly coming back.I haven't been there since > 2000. I have permannent joint damage in my pointer fingers and wrist > from the original dx, and had knee surgery at 22 to remove all the > synovial tissue. Although my finger joints are swollen as they used > to be, the damaged joints ache more and more. I have also had back > pain since May, which I had been trying to chalk up to a really > horrible mattress. The overwhelming symptom that makes me think it is > back is the fatigue and overall achiness. If I take my 4 Advil, the > pain recedes within an hour. > My youngest son developed leukemia (he's great now and has been off > treatment for 16 months now, yeah!) , and I have even taken his > leftover decadron pills for relief on days. Since it gave me relief > the way prednisone did in the past, that just makes it more evident > that it is probably back. > Well, enough of my rant. My biggest question is has anyone been in > remission for a long time to have it come back, and also in their > back? I have taken almost every drug and stopped at mtx. The newer > drugs weren't available back then. What worked way back was > azsulfadine??(sp?) and prednisone (3-5 mg daily). I tried plaquenil, > minocycline, relafen, naproxen, cortisone shots, no gold shots > though, knee surgery (which worked great). I didn't want mtx b/c I > wanted to get pregnant. > Now I am scared about some of the newer drugs b/c they may cause > lymphoma/leukemia. With a family history of it, I don't know if it > would be a choice for me or one I would want. > Any advice or similar situations you could share would be greatly > appreciated. > > Thanks! > > Tina S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 WELCOME BETTY, THIS GROUP IS AWESOME & VERY INFORMATIVE TO EVERYBODY SUFFERNG FROM THIS HORRIABLE DISEASE... WELL I C MY RHEUMMY EVERY 6WEEKS DEPENDING ON IF I HAVE A SEVER FLARE UP THEN EVERY 4 WEEKS. EVERY DR. MAY B DIFFERENT... I'M SORRY FOR YOUR DX BUT IF CAUGHT SOON ENOUGH THEN IT CAN B TREATED ASAP. BETTY JUST ASK AWAY ANYTHING UR CURIUOS ABOUT, I'M SURE U'LL GET ALOT OF RESPONSES & ALOT OF DIFFERENT STORIES TO B TOLD... I'M NOT SURE ABOUT THE ASTHMA MAYB SOMEONE ELSE WILL KNOW.... I HOPE U FEEL BETTER SOON.. GOD BLESS, MELYNDAGAMEZ 11/13/08 9:45A.M.CDT ________________________________ From: eafarchette <eafarchette@...> Sent: Thursday, November 13, 2008 7:42:48 AM Subject: [ ] New to group Good morning all, My name is Betsy and I would like to introduce myself as a new member. I have just recently been diagnosed with RA (only 2 weeks ago). I live on the island of St. Croix in the US Virgin Islands. My Rheumatologist is located in Orlando, Fl but we do have one closer in Puerto Rico. Any recommendations as to how often I should be seeing a Rheumatologist? I have millions of questions that I hope I will see answers to here in the support group, as I am still learning what this is doing to my body and the signs I can look for to determine if I am flaring up or not. One major question I have is can this affect my asthma? I had an epsiode out of the blue last night, and when it was over, my shoulders, elbows and wrists were killing me (I'm still having trouble today). Any advice would be welcomed! ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 Hello Betsy I just wanted to say welcome to the group! Although I haven't been posting here for long, I've had RA for quite a few years and I've learnt so much here - and met people who understand what it's like. Hugs from Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 Hi Betsy, welcome to the group! I have pretty bad asthma as well as the RA. My asthma seems to get worse along with RA flares. I suspect it has to do with overall inflammation. I also seem to be a little more challenged in controlling my asthma since my RA was diagnosed. I do know that some of the meds may be associated with respiratory issues. I just think of the new challenges to asthma as part of my overall condition and keep a close watch on it. Kim > > Good morning all, > > My name is Betsy and I would like to introduce myself as a new member. > I have just recently been diagnosed with RA (only 2 weeks ago). I live > on the island of St. Croix in the US Virgin Islands. My Rheumatologist > is located in Orlando, Fl but we do have one closer in Puerto Rico. Any > recommendations as to how often I should be seeing a Rheumatologist? > > I have millions of questions that I hope I will see answers to here in > the support group, as I am still learning what this is doing to my body > and the signs I can look for to determine if I am flaring up or not. > > One major question I have is can this affect my asthma? I had an > epsiode out of the blue last night, and when it was over, my shoulders, > elbows and wrists were killing me (I'm still having trouble today). > > Any advice would be welcomed! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 Betsy, Welcome to the group. I am so sorry for the reason that you had which caused you to search us out. I see my rheummy every two months. I take MTX so I have my bloodwork done monthly. My rheummy says as long as there are no problems with my bloodwork every two months is OK. I have no experience with asthma, so I am shooting from the hip here, but I would think that anything that causes stress could trigger and attack. If I am wrong, please forgive me. Remission is achievable with the correct treatment, so don't let it get you down, if you can help it. We feel your pain. That is the best thing about this group. We understand and are here to listen. Whenever you need an understanding ear or to just vent, we are here. I hope you are feeling better soon. Shirley --- In , " eafarchette " <eafarchette@...> wrote: > > Good morning all, > > My name is Betsy and I would like to introduce myself as a new member. > I have just recently been diagnosed with RA (only 2 weeks ago). I live > on the island of St. Croix in the US Virgin Islands. My Rheumatologist > is located in Orlando, Fl but we do have one closer in Puerto Rico. Any > recommendations as to how often I should be seeing a Rheumatologist? > > I have millions of questions that I hope I will see answers to here in > the support group, as I am still learning what this is doing to my body > and the signs I can look for to determine if I am flaring up or not. > > One major question I have is can this affect my asthma? I had an > epsiode out of the blue last night, and when it was over, my shoulders, > elbows and wrists were killing me (I'm still having trouble today). > > Any advice would be welcomed! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 Hi Betsy and welcome to the group! Wow, you really have to travel far in order to see a Rheumy. I would at least call them and tell them what happened when you had that asthma attack. RA can affect the lungs, too. I see my Rheumy every 8 weeks now, but in the beginning it was every 4 weeks and phone calls/visits if need be in between. Are you on any RA medicines yet? You may need a steroid to help you along, too. Keep us posted. Hang in there..........Doreen > > Good morning all, > > My name is Betsy and I would like to introduce myself as a new > member. I have just recently been diagnosed with RA (only 2 weeks > ago). I live on the island of St. Croix in the US Virgin Islands. > My Rheumatologist is located in Orlando, Fl but we do have one > closer in Puerto Rico. Any recommendations as to how often I should > be seeing a Rheumatologist? > > I have millions of questions that I hope I will see answers to here > in the support group, as I am still learning what this is doing to > my body and the signs I can look for to determine if I am flaring > up or not. > > One major question I have is can this affect my asthma? I had an > epsiode out of the blue last night, and when it was over, my > shoulders, elbows and wrists were killing me (I'm still having > trouble today). > > Any advice would be welcomed! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Good Morning All... Thank you all so much for such a warm welcome to the group. I am already learing so much about my RA here. I know the more I read the more I will learn. So far I am only on 200 mg of Plaquenil 2 x daily with Motrin as needed (no more than 2400 mg a day or I will have to look at something that is less likely to create problems for the Kidneys). My PC says he can handle most of my day-to-day treatments and labs from here with the occasional trips stateside to see my Rheumy. I believe that hey are going to work together via phone/fax consults. Unfortunately we do not have a Rheumy here on island. The hardest part so far is getting use to the idea that one minute I'm moving pretty good and the next I feel like a little old lady. I now joking refer to this as my " New Normal " . My family and I are still adjusting and learning about all of this. The hardest thing mentally so far is having to remove my wedding rings. I am still looking for a new way to wear them as my band was my Great-Grandmother's. Funny how something so small can weigh on your mind when I have much bigger things to worry about ! Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Betsy and group; Good morning, even if it's the next morning lol. I read than text the next morning. You're very welcome Betsy. I too learned a lot from being in this lovely group Betsy. I don't have a problem getting use to RA so far, I thinks it's because it came on me gradually. Betsy that is so wonderful to have your great great grandmothers wedding band, how so sweet. I would be concerned also if I could not wear a gem from so far a distant a relative, especially since I have worn it for so many years. I pray you have pain free days. God bless and take care. gentle hugs Clora ******************************************************** From: Farchette <eafarchette@...> Subject: [ ] Re: New to group Date: Monday, November 17, 2008, 9:07 AM Good Morning All... Thank you all so much for such a warm welcome to the group. I am already learing so much about my RA here. I know the more I read the more I will learn. So far I am only on 200 mg of Plaquenil 2 x daily with Motrin as needed (no more than 2400 mg a day or I will have to look at something that is less likely to create problems for the Kidneys). My PC says he can handle most of my day-to-day treatments and labs from here with the occasional trips stateside to see my Rheumy. I believe that hey are going to work together via phone/fax consults. Unfortunately we do not have a Rheumy here on island. The hardest part so far is getting use to the idea that one minute I'm moving pretty good and the next I feel like a little old lady. I now joking refer to this as my " New Normal " . My family and I are still adjusting and learning about all of this. The hardest thing mentally so far is having to remove my wedding rings. I am still looking for a new way to wear them as my band was my Great-Grandmother' s. Funny how something so small can weigh on your mind when I have much bigger things to worry about ! Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Hi , Welcome to the group you'll like it here. Lots of great people with good information and understanding and support. Sorry you have this dreadful disease. It is good to hear that your husband is understanding. But don't feel bad that he doesn't understand. I honestly don't think anyone can understand unless that have it themselves god forbid. I don't wish this on anyone! I was diagnosed last year. I know that I had it for longer because I would have problems with my knees and just didn't think anything of it and thought maybe I kept bumping them. I was working in a fast paced factory with heavy steel parts. I was always bumping and cutting myself by accident. My wrist and fingers and hands would hurt and I just figured I was over working them. Then about a year before I was diagnosed my feet were giving me trouble. I just blew that off figuring it was because I was getting old and over weight. I just figured that was how you felt when ya get old! LOL! Then I started having problems with my shoulders. Was getting to the point where I couldn't lift my arm. Thank god! it wasn't both at the same time! This was going on for awhile it just so happens on my days off work so it wasn't effecting my job yet. Then one morning I couldn't lift my arm and the pain was so severe. I tried so hard for about 20 minutes while crying and trying to get my hair up. (I was thinking how ridiculous this is!) I had to get my hair up and get a stupid hat on because I worked in a kitchen. The night before I had worked the night shift and had the same problem but was able to yank up my arm and lean it on the wall to hold it up while I put the tie in my hair. That wouldn't work this morning... I ended up running over to my neighbors house and getting her out of bed so she could put my hair up and get the stupid hat on my head for me. That did it! I made up my mind I was making appointment to see a doctor. I made it through that shift working one armed and crying and saying OW! OW! OW! all day. LOL! I finely went to doctors because I knew something was wrong! They took some blood tests and came back saying I had RA. My Rheumy has tried me on the MTX and predisone. That didn't work out so well so now he has me trying Sulfazine and predisone. He left me on that to see if it gets any better. If that doesn't improve my well being by the next time I see him. He is going to start me on Humira. He gave me some Tramodal for pain. He doesn't believe in giving me pain medication because he says we just need to knock out the inflammation that is causing the pain. So far I haven't found anything that relieves the pain. We did go out and purchase a used hot tub that seems to help some while I'm sitting in it if I don't move. That is my story and I'm sticking to it! It is nice to meet you ! Welcome to the group!! Michigan. I can smell spring in the air!! Yeewhooooooo!!!!! Posted by: " catwoman61943 " _catwoman61943@... _ (mailto:catwoman61943@...?Subject= Re:New%20to%20Group) _catwoman61943 _ (catwoman61943) Wed Mar 4, 2009 9:28 am (PST) Hi everyone. My name is and I've recently been diagnosed with RA. I had Grave's Disease for 3 years and finally opted to have my thyroid removed almost 1 year ago. I was feeling great and then my legs started to hurt - actually they hurt before but we attributed it to the thyroid disease (also an autoimmune disease). I'm totally heartbroken that I fixed one thing and then got another. I'm 46 years old (tomorrow) and feel like 110. I started Methotrexate this past Saturday (4 pills once a week), I'm taking a 1 mg. folic acid pill every day and I'm starting on Humira within the next 2 weeks (I'm going for my TB test tonight). So that's my story. I would love to hear from anyone who wishes to share their story(s) with me.. I need all the support I can get (my husband is very supportive but just doesn't get it). I would also love to hear from others who also take Humira and get your experience taking it. Does it make you feel better? Any side effects, etc???? Thanks everyone. I hope to get to know most (if not all) of you and hopefully when I have more experience I can help by sharing my experiences with others. Have a great day. **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100126575x1219957551x1201325337/aol?redir=http:%2\ F% 2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%26hmpgID%3D62%26bcd\ %3DfebemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Hi , Welcome to the club that nobody really wants to be a member of. CML is now considered a chronic disease. When I was diagnosed 10 years it was a death sentence. This dramatic change came about with the development of the drug Gleevec. You will find this a very knowledgeable and and caring group. Keep asking questions and we will help. PCRU: CML is characterized by the presence of the Philadelphia Chromosome in your blood. PCR (polymerase chain reaction ) is the name of a test that detects the presence of the Philadelphia Chromosome in your system. It is the most sensitive of the three tests that are available BMB, FISH, PCR). The term PCRU means that the Philadelphia Chromosome was Undetectable in your system with the PCR test. Even though you are PCRU it doesn't mean that you are cured of CML. If you stop taking Gleevec, the CML becomes detectable again. Although PCRU is the best place to be at with your CML, less than 10% of the population achieve this level of remission. The really good news is that most people will live out a full life with CML. After a while you will get to figure out what the acronyms in my signature mean. It just takes a little bit of time. Also, I am still confident that a cure for CML will be discovered in my lifetime. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Tel: 561-429-3309 in Florida Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of duane36_1999 Sent: March-23-09 8:38 PM Subject: [ ] New to Group Hello everyone. I am . On Friday 03/20/2009 my 18 yo daughter was diagnosed with Leukemia, and the definitive diagnoses came today and it is CML. They are going to start her on Gleevic, today I think. After some browsing there is an overwhelming amount of information out there and lots of it good to read and lots of it also scary to read. So I will start simple. It looks like PCRU is something good, with that said, what is PCRU. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 hello there.. welcome to the group.I am so happy to find this group of inspiring people.I know you will be happy too. You will find good things here about CML. It is not as scary as what we thought of it before. Thanks to this group. virginia From: duane36_1999 <duane36_1999@...> Subject: [ ] New to Group Date: Tuesday, 24 March, 2009, 8:38 AM Hello everyone. I am . On Friday 03/20/2009 my 18 yo daughter was diagnosed with Leukemia, and the definitive diagnoses came today and it is CML. They are going to start her on Gleevic, today I think. After some browsing there is an overwhelming amount of information out there and lots of it good to read and lots of it also scary to read. So I will start simple. It looks like PCRU is something good, with that said, what is PCRU. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Hi , that had to be one heck of a shock, I'm so sorry your daughter has CML. I was 65 when I was diagnosed, and that was 14 years ago!! Life expectancy at that time was 5 years, give or take a couple. Today I doubt they even give you a life expectancy with all the great new drugs available. Great progress has been made in research and in no time your daughter will be living like she never heard the dreaded cancer words. There are a lot of us old timers on this site, how about living over 34 years with it? There is a directory of cml terms someplace, I can't put my hands on it right now, but I'm sure someone will come up with it for you, it's very informative and explains all those confusing letters your going to come across. I bet Lottie will come up with it. Good luck, Bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) 02/13/09 - XL trial ended due to side effects waiting to enter the Ariad trial at U of Mich. From: duane36_1999 <duane36_1999@...> Subject: [ ] New to Group Date: Monday, March 23, 2009, 8:38 PM Hello everyone. I am . On Friday 03/20/2009 my 18 yo daughter was diagnosed with Leukemia, and the definitive diagnoses came today and it is CML. They are going to start her on Gleevic, today I think. After some browsing there is an overwhelming amount of information out there and lots of it good to read and lots of it also scary to read. So I will start simple. It looks like PCRU is something good, with that said, what is PCRU. Thank you, Quote Link to comment Share on other sites More sharing options...
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