Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Welcome to Christene! You're in the right place! . . . We have a wonderful group of women who want to help you, and all the other women sick from implants get well. If you haven't already found it, we have tons of information in the archives . . . Look through the old messages, Links and Files. I'm sure you can find something there that will convince your doctor, if his mind isn't completely numbed! . . . If you want to share where you live, we may be able to help you find a doctor who will remove your implants properly (en bloc). Hugs and prayers, Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Well thank you. I received a nice contact from the group already. I read her private note to me and I just wanted to cry... she validated everything I was feeling and knew all along. It made me sad to realize more women are having the same adverse effects, but at the same time it was a wonderful feeling to know that I wasn't alone. I'm in Atlanta. Christene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Christene . . . Dr. Kolb, one of the best in the business, is right there in Alanta! . . . You are one lucky lady! www.plasticos.com Hugs, Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 The correct link for Dr. Kolb is: http://www.plastikos.com/ > > Christene . . . Dr. Kolb, one of the best in the > business, is right there in Alanta! . . . You are one > lucky lady! > > www.plasticos.com > > Hugs, > > Rogene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 HI Sue, My name is Debbie and I have a 7.5 year old daughter (autistic) named Mackenzie who is also in second grade in a regular classroom. How long was your son suspended for? Was it just for the day, or was it longer? Something simular occured when my daughter was in Kindergarten and we ended up needing an advocate. I hope all goes well for you, but if you need anything, or have any questions, please feel free to ask. Hopefully I can help. I am sorta new to this group myself.smhp43210 <gospartans2@...> wrote: Hello all,I've been lurking for a couple months now, thought it was time for me to introduce myself.My name is Sue and I have an 8.5 year old son who was diagnosed PDD-NOS when he was 3.5. Right now he's in a mainstream 2nd grade classroom with lots of supports, just about everything but an aide. The district has really tried hard to help him but it doesn't look like it's going to work out at our neighborhood school. The last day before winter break (last Friday) he got suspended for attacking a teacher during a meltdown. He had never done that before and the principal, IMO, panicked and decided he was suspended for the rest of the day. So that is our issue du jour. I also have a typical son who is 6.5 and in 1st grade at the same school. Fortunately he is doing fabulous in just about every way possible. I don't think my brain could take too many more parenting challenges :)We live in Lake County and have tapped into many wonderful resources. I've found everything I need in my journey but a support group. I'm not interested in griping, I just want supportive, problem-solving, positive-thinking individuals who can relate the the challenges involved. I hope this can be the place.Sue*Just Some Group Notes:~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~We can help raise money for ASO (Autism Society of Ohio). Just by using a charity based search engine. Search for anything you need info on. 2 steps: Just click on the link then type in Autism Society of Ohio and hit verify. Then type in your search word. heres the link: http://www.goodsearch.com~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~When Adding to your email address book, don't forget to include the s in groups. Here is the complete address: ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~Our Parent Contact list - see a printable list or add your contact info:See the printable list: /database?method=reportRows & tbl=2 & sortBy=1 & sortDir=down & startAt= & prntRpt=1Add your contact info here: /database?method=addRecord & tbl=2~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~Would you like to invite a friend to our group?Would you like to handout information about our group to your area meeting?Just print out some handouts from this link:http://f4.grp.fs.com/v1/AIN0RLAa_M73oRrFIxpAYAoyKhpUQjhAQwLZyn-aHudv5wBIo5CIDOYwMaYSuKIwsAQHkU2a2WBN2D3h6hU6ig/ -Handout.doc~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~See our group photo albums or Add your family photo album here:http://health.ph./group/ /photos~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ is a networking and support groupof "Parent to Parent for Autism".Website: http://hometown.aol.com/parentschat/homepage.html~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2006 Report Share Posted December 29, 2006 Sue - Welcome to the group! I hope this list can be a support to you. There are great people here who different perspectives that have helped me see things in a different light. I'm sorry your son was suspended. My son is 8 and in a second grade regular classroom as well, but when he gets upset, he's more likely to shut down than to meltdown - that is, at school at least! Are you considering having your son placed in a school different than the local school, or are you thinking of moving him out of the regular classroom and into a resource room? I'm thinking there's more to the story than just the suspension episode, cause a change in placement seems rather drastic!! Chris > > Hello all, > > I've been lurking for a couple months now, thought it was time for > me to introduce myself. > > My name is Sue and I have an 8.5 year old son who was diagnosed PDD- > NOS when he was 3.5. Right now he's in a mainstream 2nd grade > classroom with lots of supports, just about everything but an aide. > The district has really tried hard to help him but it doesn't look > like it's going to work out at our neighborhood school. > > The last day before winter break (last Friday) he got suspended for > attacking a teacher during a meltdown. He had never done that > before and the principal, IMO, panicked and decided he was suspended > for the rest of the day. So that is our issue du jour. > > I also have a typical son who is 6.5 and in 1st grade at the same > school. Fortunately he is doing fabulous in just about every way > possible. I don't think my brain could take too many more > parenting challenges > > We live in Lake County and have tapped into many wonderful > resources. I've found everything I need in my journey but a support > group. I'm not interested in griping, I just want supportive, > problem-solving, positive-thinking individuals who can relate the > the challenges involved. I hope this can be the place. > > Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2007 Report Share Posted January 1, 2007 sue, i can relate alot to your and the peson reapond. i also have a position now and have been dealing with since 3 grade they used restraint on my son without my knoledge and when i did i thought it was legal b/c that how we wwere train when i was an aide. well i hope you the best and like she tell you go to school i dont know if they can say you cant go in the class and see they told me i couldnt go inot ther room and see jy son they said this would distrub the class. so i dont know the law. i work for these stupid district as a cook. i also right now my son not allowed back in school b/c where he frustrated so much with the work and he told thme over and over and thwey say it not hard he just dont want to do it. so my son started hitting a pencil in his arm where he frustrated and the school thinking he sucidal. well the last day he had a problem he was in a parenting class, sorry he 15 in 9th grade and he on a 2 grade reading level. well the class was talking about drugs and peer pressure and sex and he got upset and said this is stupid and he started hitting his self again on the arm and he told me later he said he knew this was bad and he didnt want tot hear about drugs and all this it was getting to him. so the school then said he was sucidal so they told me to keep my son home until i had a dr note saying he was ok. well the new dr he seeing timmy dont fel comfoptanle w ith and he wont talk to him like his reg therpaist and we cant get in with him till the after the hollidays. so the school also tols me they would give him tutor after school so he wont get behind, but they refused given him an aide when the dr has recommened it. &nbs p; there no behavioral plan in place, that something you need to to have in place, it just make it harder on me since i work for these people and this is the onoy job i have where i can be home whern there home. but anyway. they are not doing everything or try to change work schedcule to help him all they think is either kciking him out, or sending him to emotional behavior class away from here and that not going to solve the problem. that not a place for him to be . i already check it out and a perosn that works down therr said your kids will be worst and learn so much bad behavior you dont want that. well hang in there sue and hope the best keep us posted they wonderful people in this group. unfornate, i live in southern ohio and i hate it here. take care angie &nbs p; __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 Hi, I have a 7 yr old son (and heard the same things from his ped. since he was 12 mos.!) I am not in Medina, I just wanted you to know that your family is in our prayers and you have come to a great group of parents w/excellent advice & experiences to share. Sincerely, katrine822 <cate127@...> wrote: Hello all. My name is Cate and I have an incredible 2 yr old son named Henry (5/05/04). We live in Medina. We received H's dx this past December and quite frankly, don't know if we are on foot or horseback.We had one of those pediatricians who always wanted to 'wait and see' everytime I brought something up that concerned me. At 18 months, we changed doctors and found out H basically could not hear -and we weren't sure for how long. He had tubes put in 2/06 and the difference was incredible - but he was still very delayed. Luck was on our side - we had an immediate EI eval because of a cancellation and he started EI just after he turned 2 even though there was a waiting list for the class. H is our only child and the next youngest in the family is my brother who is 33. Needless to say - I don't have an immense amount of experience with toddler development. So when, this past Nov, his EI teacher pulled me aside and told me that she was seeing signs of autism and maybe I should look into an eval - I was devastated. Again, we were lucky and both the Clinic and Akron Children's had cancellations and could get us in mid December. We chose Children's due to insurance coverage. I walked in completely expecting to hear he was delayed because of hearing - never expected the autism dx.So - here we are. I'm trying to figure out what therapies would be best for Henry, what to do when EI ends for the summer, trying to figure out what the h, e, double hockey sticks to put into the IEP so H gets everything he needs, not the bare minimum the Medina School district will pay for and trying to conclude whether or not I need a lawyer from the get-go based on horror stories I've heard/read. In between that - I perpetually remind myself not to beat myself up over 'would haves/could haves/should haves'.About my baby... He is incredibly smart. He does speak but for the longest time it was echoing what he heard. He has a huge vocab, started giving kisses and hugs (primarily on command but sometimes it's his idea), is pointing and looking when we point, and has a wicked sense of humor. He does not try to gain our approval or show us things. He doesn't ask questions (but will tell us when he wants something) and is one stubborn little man - it's like pulling teeth to get him to say words I KNOW he knows - yes and please are the top two at the moment. But he'll do it for a treat. So amidst all this - I'm trying to keep my act together, decide how or if to tell family and friends, worrying about him being labeled, and have a minor meltdown. It feels like juggling.Thanks for listening, sorry it's so long. If there is anyone with experience with the Medina schools I would welcome an opportunity for you to tell me what I'm getting myself into.Thanks so much - Cate __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 Cate, We had the same problem with our doctor in medina... we were constantly told that he's a boy.. he develops slower than what our daughter did... he's a 2nd child... that we shouldn't compare his development with his sisters... and just to wait and see.. he may just not have anything to say... which is the main reason we moved up to olmsted falls now... better doctor that we found.. and closer for hubby to go to work... but anyway... I can feel your pain.. I think alot of us can relate to you.. .as far as the IEP goes.. I know there was a post about this before but can't remember which one.. but there Ohio Coalition for the Education of Children with Disabilities is hosting a free seminar on January 29th in Brook Park on Understanding and Writing IEP's which may help.. the # to call to register and for more info is 1-800-694-6402.. Hope it helps! > > Hello all. > > My name is Cate and I have an incredible 2 yr old son named Henry > (5/05/04). We live in Medina. We received H's dx this past > December and quite frankly, don't know if we are on foot or > horseback. > > We had one of those pediatricians who always wanted to 'wait and > see' everytime I brought something up that concerned me. At 18 > months, we changed doctors and found out H basically could not hear - > and we weren't sure for how long. He had tubes put in 2/06 and the > difference was incredible - but he was still very delayed. Luck was > on our side - we had an immediate EI eval because of a cancellation > and he started EI just after he turned 2 even though there was a > waiting list for the class. > > H is our only child and the next youngest in the family is my > brother who is 33. Needless to say - I don't have an immense amount > of experience with toddler development. So when, this past Nov, his > EI teacher pulled me aside and told me that she was seeing signs of > autism and maybe I should look into an eval - I was devastated. > Again, we were lucky and both the Clinic and Akron Children's had > cancellations and could get us in mid December. We chose Children's > due to insurance coverage. I walked in completely expecting to hear > he was delayed because of hearing - never expected the autism dx. > > So - here we are. I'm trying to figure out what therapies would be > best for Henry, what to do when EI ends for the summer, trying to > figure out what the h, e, double hockey sticks to put into the IEP > so H gets everything he needs, not the bare minimum the Medina > School district will pay for and trying to conclude whether or not I > need a lawyer from the get-go based on horror stories I've > heard/read. In between that - I perpetually remind myself not to > beat myself up over 'would haves/could haves/should haves'. > > About my baby... He is incredibly smart. He does speak but for the > longest time it was echoing what he heard. He has a huge vocab, > started giving kisses and hugs (primarily on command but sometimes > it's his idea), is pointing and looking when we point, and has a > wicked sense of humor. He does not try to gain our approval or show > us things. He doesn't ask questions (but will tell us when he wants > something) and is one stubborn little man - it's like pulling teeth > to get him to say words I KNOW he knows - yes and please are the top > two at the moment. But he'll do it for a treat. > > So amidst all this - I'm trying to keep my act together, decide how > or if to tell family and friends, worrying about him being labeled, > and have a minor meltdown. It feels like juggling. > > Thanks for listening, sorry it's so long. If there is anyone with > experience with the Medina schools I would welcome an opportunity > for you to tell me what I'm getting myself into. > > Thanks so much - Cate > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 Hi, Cate! Welcome! You will find a lot of good information here, and a ton of good people! The folks at Children's in Akron are great. We have a lot of good docs from there. The docs at Children's might be a good place to start with advice on what therapies your son needs. If they can write up a report on it for you, that would be the best, as you would have something to take to the MFE and IEP meetings with you. And, if the school chooses to ignore their recommendations, you'll have something in writing to go back to if you need. After EI, you'll embark on the wonderful world of special education. For that, I'd keep an endless supply of chocolate or whatever your comfort vice is, handy! My best useful advice is to start doing your reading/homework on how the system works now. Go to www.wrightslaw.com and buy "From Emotions to Advocacy." That book is worth its weight in gold. You will be thankful many times over that you have it, so please get it. The website is the only place it's available that I know of -- you might be able to find it at the library, but I would buy your own copy...you'll refer to it often. It will teach you how to keep the proper records -- and since your son is just starting with this adventure, then I would definitely do what they recommend...trust me...I have kept to most of their suggestions and it's paying off for me in a big way now that we're having some problems (BIG ones) within the district. It will help you learn how to be an effective advocate for your child. Document, document, document. Keep a paper trail that could circle the earth! It will be the best thing you can do. From what I know of the Medina district, I would get an advocate if you can. Starting with a lawyer right off the bat could be perceived by the district as "threatening" and can get VERY expensive. There is a "Yellow Pages for Kids" section on the slaw website that might help you track down an advocate. If you don't have any luck with that, let me know, and I'll ask some folks I know who live in Medina and see if they can make any recommendations. While we're discussing reading, if you are worried about labels, what to tell family, etc., get the book "Ten Things Every Child with Autism Wishes You Knew." Can't wait for the book? -- check out this site: http://www.autismspectrum.net/DesktopDefault.aspx?tabid=248. It'll make you want the book! It's a great read -- and quick -- I got through it in a day and a half! Please remember that Autism doesn't define your son as a person. He is a human being with unique traits...there is no other Henry like him, and there never will be! He is (and sure sounds like) a wonderful little guy who will have much to offer that no one else but him can give to the world. Deciding on who and whether or not to tell people is a personal decision. I think it's helpful for people to know about the diagnosis -- especially family and friends. It might help explain certain behaviors and other issues that people might be more willing to understand with the diagnosis. Sometimes, people will have expectations of your child that he just cannot live up to because of his diagnosis. You may need to explain that to people -- perhaps on a continual basis! After a while, you'll be able to recite it in your sleep! Many children with Autism are incredibly smart -- it doesn't surprise me that your son is! That's great that he can speak -- even if it is a lot of echoing or scripted speech. Hey, it's speech! I have a son with Autism that still can't speak yet...and I have one who can. Never a dull moment here! I know all about that stubborn streak too! I've been at this for upwards of 5 years and I'm still trying to get my act together, so don't beat yourself up. Your son is a gift, ASD or not, you would love him just the same. Welcome to the group! We're glad you're here! --Suzanne -----Original Message----- From: cate127@... Sent: Tue, 9 Jan 2007 8:49 PM Subject: [ ] Introduction Hello all. My name is Cate and I have an incredible 2 yr old son named Henry (5/05/04). We live in Medina. We received H's dx this past December and quite frankly, don't know if we are on foot or horseback. We had one of those pediatricians who always wanted to 'wait and see' everytime I brought something up that concerned me. At 18 months, we changed doctors and found out H basically could not hear - and we weren't sure for how long. He had tubes put in 2/06 and the difference was incredible - but he was still very delayed. Luck was on our side - we had an immediate EI eval because of a cancellation and he started EI just after he turned 2 even though there was a waiting list for the class. H is our only child and the next youngest in the family is my brother who is 33. Needless to say - I don't have an immense amount of experience with toddler development. So when, this past Nov, his EI teacher pulled me aside and told me that she was seeing signs of autism and maybe I should look into an eval - I was devastated. Again, we were lucky and both the Clinic and Akron Children's had cancellations and could get us in mid December. We chose Children's due to insurance coverage. I walked in completely expecting to hear he was delayed because of hearing - never expected the autism dx. So - here we are. I'm trying to figure out what therapies would be best for Henry, what to do when EI ends for the summer, trying to figure out what the h, e, double hockey sticks to put into the IEP so H gets everything he needs, not the bare minimum the Medina School district will pay for and trying to conclude whether or not I need a lawyer from the get-go based on horror stories I've heard/read. In between that - I perpetually remind myself not to beat myself up over 'would haves/could haves/should haves'. About my baby... He is incredibly smart. He does speak but for the longest time it was echoing what he heard. He has a huge vocab, started giving kisses and hugs (primarily on command but sometimes it's his idea), is pointing and looking when we point, and has a wicked sense of humor. He does not try to gain our approval or show us things. He doesn't ask questions (but will tell us when he wants something) and is one stubborn little man - it's like pulling teeth to get him to say words I KNOW he knows - yes and please are the top two at the moment. But he'll do it for a treat. So amidst all this - I'm trying to keep my act together, decide how or if to tell family and friends, worrying about him being labeled, and have a minor meltdown. It feels like juggling. Thanks for listening, sorry it's so long. If there is anyone with experience with the Medina schools I would welcome an opportunity for you to tell me what I'm getting myself into. Thanks so much - Cate Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2007 Report Share Posted February 16, 2007 I re read this once it posted to the list and see that i mentioned my partner twice. /rolls eyes. Apparently my sinuses are bothering me enough that I can't remember what i typed 3 sentences up anywho...Angie P <pooh_angie@...> wrote: Well I thought I'd introduce myself now that I jumped right in on the peeing conversation. I have been lurking for a while and love the conversations here but don't find much to add because I don't really like the raw diet. I do however try to eat by the eat right for your blood type diet. It seems to have okay results so far. Probably could be better if I eliminated everything I should! but even at the ripe age of 30, i am stubborn and eat what i want I live with my partner of 7 yrs in Northern central Wisconsin. I live on the edge of town so I can enjoy nature. I grew up on a dairy farm and completed a nursing degree in 2001 that I don't use. I did not complete registration for the RN program and instead felt that I could use massage therapy so much better and have a small business with a handful of clients. I keep it small and personal for several reasons. One being liabilities and the other being I prefer to treat people who are open minded and health aware. I tend to treat people who trust my intuition and listen to me. I am rather intuitive and practice deep tissue and reiki/healing touch massage. On the side, I work for the local power company. Though it is ran by a corporation, with limited hours I get great benefits and the chance to talk to people in many states. I have study years for about ten years now actively though my grandmother was a kitchen witch and taught me a lot with out even knowing it. I started with Rosemary Gladstar's course and have a mentor who has been living naturally for 30 years. My mentor is bless her heart, all organic, all natural and almost completely off the electric grid. I have also taken intensive seminars with Winston, Hoffman, Weed and a few other lesser published herbalists. I also believe in eating right for your body and that most foods can heal as well. I am a practicing pagan, naturalist and a bit of a nudist. I dabble in a bit of everything. I have adhd, depression, and dyslexic, which I treat herbally fairly well at this time. I have a partner (male) of 7 years and two cats. No plans at having children.I am rather blunt and honest. I try to respect every-one's choices and don't ask anyone to become what I am. I don't feel the need to have people live life my way but do the best you can where your at. I offer my perspective freely and expect nothing. I already like Suzie's tag and 's humorous quotes under his replies! Indeed what is life if you can't laugh at it!Glad to meet you all. ~*~ love, light, and Goddess kisses ~*~ Angie Check out the all-new beta - Fire up a more powerful email and get things done faster. ~*~ love, light, and Goddess kisses ~*~ Angie Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 " I can guarantee you that you really don't want the chance to prove that money can't make you happy. You know, all those things you blamed on " not having enough money " ? All of a sudden, all your excuses evaporate and you're left with nothing but You, Yourself and > Thee. It's brutal. " Actually is can be a very positive reality check. Hard, but positive. You find out what you are made of. We had a fire about 10 years ago that reduced 20 years of hard, hard work to ashes. Literally. The only thing DH and I had left was each other. But the rest is just " stuff " . Of course, with that said, I am happily trying to accumulate more " stuff " <G> Gayla Always Enough Ranch Acampo, California http://bouncinghoofs.com/alwaysenough.html Bill Barnhill is our Inspiration! Go Bill!!! aeranch@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 Jackie - I just had to respond: Is diabeties curable?? What about 's wife with incurable (but treatable) cancer? Is your insurance company going to stop covering diabetes and stage 4 cancer?? Autism is the same. It may not be curable (though I'm sure some parents/professionals disagree on that), but with proper treatment/therapies, the symptoms are alleviated and the individuals improve. Sometimes insurance companies are just immoral, and denying health coverage/services to children with a brain disorder is just wrong!! *********************************************** >Our insurance covers hardly anything for because they state autism is not curable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 Sandee - Welcome to the group! You definitely have been an encouragement to many of us, and I appreciate your willingness to be the best advocate for your son. That takes a big commitment! It sounds like you have your priorities straight and don't expect too much of yourself! You can't do everything! > > I want to introduce myself to group. > > I am the mother of four children two whom have a diagnosis of autism. > > I have been advocating for my youngest for the past four years. > Unfortunately, it has take up most of my precious time. I feel badly > that I have not been as active in groups as I would like to be. This > is a something I feel that I need to do. I plan to spend as much time > as I can advocating in the community. > > I have just returned from Washington D.C. where the Supreme Court > heard our argument regarding whether parents can represent their > children pro se in court. I was left to represent our son because we > could not afford an attorney and the free help was not able to take > our case. It was a horrific experience but one that I will never regret. > > I hope to meet each of you at the community events. > > I would like to get to know other parents from the Parma area. Please > feel free to contact me privately. > > > Take Care, > Sandee Winkelman > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 I uttered those same words over and over to our insurance company. You know the funny thing is that they cover everything for those and also down syndrome. The first time I was on the phone with them after was diagnosed on day 1. I hasd a customer service rep who has no clue about autism telling me it is not curable and not covered in our plan. I was like what do you mean not curable.(mind you I was a mother with a new diagnosis, in total shock and heart broken) I will never forget that day. Though she did tell me if your son has down syndrome that is covered. I told her that is not curable...I just don't get it!!!!! jacki > > Jackie - I just had to respond: > > Is diabeties curable?? What about 's wife with incurable (but treatable) cancer? Is your insurance company going to stop covering diabetes and stage 4 cancer?? Autism is the same. It may not be curable (though I'm sure some parents/professionals disagree on that), but with proper treatment/therapies, the symptoms are alleviated and the individuals improve. Sometimes insurance companies are just immoral, and denying health coverage/services to children with a brain disorder is just wrong!! Chris > > *********************************************** > >Our insurance covers hardly anything for because they state autism is not curable. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 Nice to meet you, I am also. I have just one boy, - 13, married to Tabitha, 16yrs. I was to 4 Dr's for 3 different things before taking myself from a hotel room I was staying out of town to the ER. I was in A-Fib with WBC of 544. I had no idea what that meant, still is sinking in, to be honest. I also must say I am fighting several daily demons in all this. But, I too am encouraged by this group and hope one day to be as far a long this journey as so many of these nice folks. Chris Dx March 1 2007 Gleevec 400mg 1 pd Milton, Florida ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 Wow, similar story for sure. It's amazing that some of these physicians won't run a simple cbc when a 40 something complains about fever with no other symptoms. It's a cheap test after all. Yes, I hear you about the demons. It all seems like a really bad dream at times. I struggle at times to get " out of my head " and on with life. We'll get there I guess. Take care, Chris > > > > Nice to meet you, I am also. I have just one boy, - 13, > married to Tabitha, 16yrs. I was to 4 Dr's for 3 different things before taking > myself from a hotel room I was staying out of town to the ER. I was in A-Fib > with WBC of 544. I had no idea what that meant, still is sinking in, to be > honest. I also must say I am fighting several daily demons in all this. But, > I too am encouraged by this group and hope one day to be as far a long this > journey as so many of these nice folks. > > Chris > Dx March 1 2007 > Gleevec 400mg 1 pd > Milton, Florida > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Hi Welcome to the group. Yes, it's nice to know that there are a few options for us, though it's always scary when first diagnosed. Don't forget the Leukemia & Lymphoma Society for additional support -- www.lls.org. You can get $500/year financial assistance if you need it -- not a huge amount, but every bit helps. The LLS also has group support and message boards at the website. God bless. peace, Kathy dx 5/03 --- In , " silvermusic54022 " <silvermusic54022@...> wrote: > > I would like to introduce myself to the group. I am 45 years old > and was dx with CML chronic phase on 4/1. I went to the emergency > room with a 104 temp and found that my spleen was quite enlarged and > my white cell count was over 400k with 1-2% blast. I was started on > Gleevec and Hydrea and my counts returned to normal in less than > five weeks. So far, my side effects have been somewhat minimal with > some back pain, headaches, and nausea--all pretty tolerable. I had > two visits to the doctor in March complaining of slight fever and > general fatigue. My physician failed to palpate my abdoman or do a > cbc. I feel a bit let down by this as my white cell count and > hemoglobin were very dangerous. At any rate, I am feeling somewhat > back to normal although a bit tired. > > Although I'm pretty scared, I've been reading this list and I am > very encouraged at how well people are doing on Gleevec and other > 2nd line drugs. I know that only time will tell, but it is > encouraging to know that I am not alone. I have five kids ranging > in age from 3 - 18 and I really want to watch them grow up. I am > very grateful that there are options for us. > > Silver > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 Chris- One thing I wanted to throw out is if you want something done ask for it. Don't be afraid to step on toes. Always be an advocate for yourself and if you ever find yourself not getting what you need from your doctor, you need to find another one. Educate yourself and don't be afraid to ask questions or ask for tests. I have found that most doctors will do whatever you ask or inquire about. There are here to help. Keep a positive attitude, even on the rough days. The days get better and brighter! 35 CML 5/13/05 Gleevec 800mg PCRU Wife and mother of 3 (11,8,6) ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Good point . I have switched doctors recently. My new onc. is one who takes the time to explain things in detail. My first appt. with him took 1.5 hours! Thanks for your insight. Chris > > Chris- > > One thing I wanted to throw out is if you want something done ask for it. > Don't be afraid to step on toes. Always be an advocate for yourself and if > you ever find yourself not getting what you need from your doctor, you need to > find another one. Educate yourself and don't be afraid to ask questions or > ask for tests. I have found that most doctors will do whatever you ask or > inquire about. There are here to help. > > Keep a positive attitude, even on the rough days. The days get better and > brighter! > > 35 > CML 5/13/05 > Gleevec 800mg PCRU > Wife and mother of 3 (11,8,6) > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 , Thanks a lot for your possitve thoghts. JP --- vegasrnjen@... wrote: > Chris- > > One thing I wanted to throw out is if you want > something done ask for it. > Don't be afraid to step on toes. Always be an > advocate for yourself and if > you ever find yourself not getting what you need > from your doctor, you need to > find another one. Educate yourself and don't be > afraid to ask questions or > ask for tests. I have found that most doctors will > do whatever you ask or > inquire about. There are here to help. > > Keep a positive attitude, even on the rough days. > The days get better and > brighter! > > 35 > CML 5/13/05 > Gleevec 800mg PCRU > Wife and mother of 3 (11,8,6) > > > > ************************************** See what's > free at http://www.aol.com. > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Finding fabulous fares is fun. Let FareChase search your favorite travel sites to find flight and hotel bargains. http://farechase./promo-generic-14795097 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2007 Report Share Posted August 31, 2007 Welcome to you and your family. This website is quite amazing, you will find all sorts of information and support. Me and my daughter have BPES, my daughter is 12 (my other children dont). Welcome Clare Teale Herts UKbarrsoccer <abarr@...> wrote: I found the user group from the Web site and joined and wanted to introduce myself. I am Amy and from Sacramento CA. My husband Pat and I have a 9.5 year old daughter with BPEI. She is a twin. Her sister does not have BPEI. Im interested in learning from you all. Looking for a deal? Find great prices on flights and hotels with FareChase. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2007 Report Share Posted September 16, 2007 Hi there , 50 must be the " magic age " to be dx with this thing! I was three months off being 50 when I was. I so agree with you living in Australia and New Zealand we are blessed to be able to have this drug free. Good luck and I hope it all goes well for you and you start to feel better real soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2007 Report Share Posted September 16, 2007 Hi Liddy - thanks! I'm so glad to hear you responded so well to Glivec. Great to have someone " close " by. Did you/do you have any side effects? My CML was dx through a routine blood test, as I believe it often does. I have been tired off and on and was wondering why and had unexplained aches and pains and flu like symptoms that would come and go without explanation and my haematologist believes I have had it for at least 12 months. I have a busy job also - not physical though, but has a fair amount of stress with it and I am the main breadwinner. My stress relief is showing and breeding my Labradors and hubbies dachshunds. They get me out of bed everyday no matter what! I am so lucky that I had a 3 week holiday in beautiful NZ in March with my girlfriend (never take husbands) and had a great time exploring as much of North and South Islands as we could fit in. Regards, _____ From: [mailto: ] On Behalf Of Liddy Sent: Sunday, 16 September 2007 12:57 PM Subject: [ ] Re: introduction Hi there , 50 must be the " magic age " to be dx with this thing! I was three months off being 50 when I was. I so agree with you living in Australia and New Zealand we are blessed to be able to have this drug free. Good luck and I hope it all goes well for you and you start to feel better real soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2007 Report Share Posted September 16, 2007 Hi Liddy, Welcome to the group, sorry about your dx but you seem to be handling it well I was 37 when I was dxed in 04 Terry On 9/15/07, Malseed <rodorbal@...> wrote: > > Hi Liddy - thanks! I'm so glad to hear you responded so well to Glivec. > Great to have someone " close " by. Did you/do you have any side effects? > > My CML was dx through a routine blood test, as I believe it often does. I > have been tired off and on and was wondering why and had unexplained aches > and pains and flu like symptoms that would come and go without explanation > and my haematologist believes I have had it for at least 12 months. > > I have a busy job also - not physical though, but has a fair amount of > stress with it and I am the main breadwinner. My stress relief is showing > and breeding my Labradors and hubbies dachshunds. They get me out of bed > everyday no matter what! > > I am so lucky that I had a 3 week holiday in beautiful NZ in March with my > girlfriend (never take husbands) and had a great time exploring as much of > North and South Islands as we could fit in. > > Regards, > > > > _____ > > From: <%40> [mailto: > <%40>] On Behalf Of Liddy > > Sent: Sunday, 16 September 2007 12:57 PM > <%40> > Subject: [ ] Re: introduction > > Hi there , > 50 must be the " magic age " to be dx with this thing! I was three > months off being 50 when I was. > I so agree with you living in Australia and New Zealand we are blessed > to be able to have this drug free. > Good luck and I hope it all goes well for you and you start to feel > better real soon. > > Quote Link to comment Share on other sites More sharing options...
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