Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Good to hear it - can't wait to see you guys again . We are up at Sick Kids ( & Phil & Marg's) again on March 8-10 or 11...maybe we can meet up again. matthew_steven_alissa wrote: Guess what everyone! Alissa is officially diagnosed with Charge! Daaaa I could have told them that a long time ago. Its good news in a sense that the docs and I are now all on the same page. At this point I really don't care what she's got! Shes my little princess no matter what! :0) Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca or email info@... . 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Good news for you guys! Now you can be comfortable that you truly " belong " in CHARGEland and you can make plans for your permanent stay here. Having a dx has been a great comfort to me as well as a source of knowledge and understanding. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Hi ... I know exactly what you were going through...I too suspect my son has CHARGE, but my husband is reluctant to go ahead for a genetics appointment and get him 'officially' diagnosed because he has a 'mild' case, I keep thinking that it would be so much better to know it and let his teachers know that he has to learn on his own pace...can you please, or anyone please let me know what should I do in order to give my precious little son what's best for him? We live in southern california and would like to know where to get started...I read about the blood test that has to be sent to Holland and costs so much, we can not afford that...Would love to hear your feedback! Good luck to you and your princess!! Lu Genetics Appointment Guess what everyone! Alissa is officially diagnosed with Charge! Daaaa I could have told them that a long time ago. Its good news in a sense that the docs and I are now all on the same page. At this point I really don't care what she's got! Shes my little princess no matter what! :0) Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca or email info@... . 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 ay cool lol > > Hi ... > > I know exactly what you were going through...I too suspect my son has > CHARGE, but my husband is reluctant to go ahead for a genetics appointment > and get him 'officially' diagnosed because he has a 'mild' case, I keep > thinking that it would be so much better to know it and let his teachers > know that he has to learn on his own pace...can you please, or anyone please > let me know what should I do in order to give my precious little son what's > best for him? We live in southern california and would like to know where to > get started...I read about the blood test that has to be sent to Holland and > costs so much, we can not afford that...Would love to hear your feedback! > Good luck to you and your princess!! > Lu > > Genetics Appointment > > > Guess what everyone! Alissa is officially diagnosed with Charge! Daaaa > I could have told them that a long time ago. Its good news in a sense > that the docs and I are now all on the same page. At this point I > really don't care what she's got! Shes my little princess no matter > what! :0) > > > > > > Membership of this email support groups does not constitute membership in > the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email > info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Patty has a mild case of CHARGE as well. She is now 21 but she went 14 years without the diagnosis. It totally changed our lives and more importantly it changed hers. She no longer felt so alone and so " different. " It is amazing the connections we have found through CHARGE. We also had to fight every inch for Patty to be understood socially, emotionally and to be educated appropriately. By the time she was 14 and having finally received that diagnosis we found the specialists and the wonderful people to help us. Much of that was too late. They did come in and give an inservice, we had Patty evaluated at Perkins, etc. But as soon as they walked out the door or hung up the phone it went back to their way. I was told my home district staff were the true specialists that understood Patty and all they had to do was to take the information into consideration. And boy oh boy would they complain. But by then it had become about the fight and not about Patty. Our SPED Director was what I called the stump. She just wouldn't move. Getting the CHARGE diagnosis is not only for medical reasons. It also helps educationally and socially, emotionally for the child. It also helps the family, the parents, the siblings, the grandparents... I would assume that goes for any other diagnosis. Life has to make sense. Good luck. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Lu, I would definitley talk to your pediatricion and ask him to get the ball rolling. I'm sure that if you express your concerns he can some how help you out. I don't know how things work in the states but I live in Canada and we get allot of help from the government when you have a child with disabilities. Maybe there are alot more options out there then you think as far as financial assistance. I would definitley try to get the test done. Allot of doors will open for you as far as getting things tested and seeing where your child needs help. Thats what this is all about. Find out the diagnoses so you can help your child surpass any physical opsticals a charge child may have so they can be as normal as can be for them. I hope that helps. You definitley need an " EARLY INTERVENTIONALIST " . They are fantastic (most of them). They are usually people who are assigned to you and your child to guide you on your charge journey and help you find the help, contacts, doctors, school assistance etc... > > > > Hi ... > > > > I know exactly what you were going through...I too suspect my son has > > CHARGE, but my husband is reluctant to go ahead for a genetics appointment > > and get him 'officially' diagnosed because he has a 'mild' case, I keep > > thinking that it would be so much better to know it and let his teachers > > know that he has to learn on his own pace...can you please, or anyone please > > let me know what should I do in order to give my precious little son what's > > best for him? We live in southern california and would like to know where to > > get started...I read about the blood test that has to be sent to Holland and > > costs so much, we can not afford that...Would love to hear your feedback! > > Good luck to you and your princess!! > > Lu > > > > Genetics Appointment > > > > > > Guess what everyone! Alissa is officially diagnosed with Charge! Daaaa > > I could have told them that a long time ago. Its good news in a sense > > that the docs and I are now all on the same page. At this point I > > really don't care what she's got! Shes my little princess no matter > > what! :0) > > > > > > > > > > > > Membership of this email support groups does not constitute membership in > > the > > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > > information and membership, please visit http://www.chargesyndrome.ca or > > email > > info@... . > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Hey, I would love to see you guys again. I know your stay is short and its probably not easy for you to get around however I think your driving this time? Anyhow, are you guys up for coming over for a visit? You pick the day. > Guess what everyone! Alissa is officially diagnosed with Charge! Daaaa > I could have told them that a long time ago. Its good news in a sense > that the docs and I are now all on the same page. At this point I > really don't care what she's got! Shes my little princess no matter > what! :0) > > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca or email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Thanks a million, ! Your feedback was really everything I needed to hear!!! I am sooo happy to have found ALL of YOU in this GROUP!!! You guys are a true BLESSING!!! Lu Genetics Appointment > > > > > > Guess what everyone! Alissa is officially diagnosed with Charge! Daaaa > > I could have told them that a long time ago. Its good news in a sense > > that the docs and I are now all on the same page. At this point I > > really don't care what she's got! Shes my little princess no matter > > what! :0) > > > > > > > > > > > > Membership of this email support groups does not constitute membership in > > the > > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > > information and membership, please visit http://www.chargesyndrome.ca or > > email > > info@... . > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Lu this group has made me feel good to and im a charger liek being able to make people smile or happy even if i dotn have all the answers lol ellen > > Thanks a million, ! Your feedback was really everything I needed to > hear!!! I am sooo happy to have found ALL of YOU in this GROUP!!! You guys > are a true BLESSING!!! Lu > > Genetics Appointment > > > > > > > > > Guess what everyone! Alissa is officially diagnosed with Charge! > Daaaa > > > I could have told them that a long time ago. Its good news in a > sense > > > that the docs and I are now all on the same page. At this point I > > > really don't care what she's got! Shes my little princess no > matter > > > what! :0) > > > > > > > > > > > > > > > > > > Membership of this email support groups does not constitute > membership in > > > the > > > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > > For information about the CHARGE Syndrome > > > Foundation or to become a member (and get the newsletter), > > > please contact marion@... or visit > > > the web site at http://www.chargesyndrome.org - for CHARGE > Syndrome Canada > > > information and membership, please visit > http://www.chargesyndrome.ca or > > > email > > > info@... . > > > 8th International > > > CHARGE Syndrome Conference, July, 2007. Information will be > available at > > > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Chantelle- I don't recall if you have prescription coverage or not, because this drug is expensive (I heard its about 300.00 a month). Its called Provigil. I learned about it from another list serv. Those who are taking it-say their life is 100% improved; that without it, they were too tired to get up and do anything, but with it, they are leading normal lives again-cleaning, shopping, etc. If U have the coverage, maybe it would help U to have energy. Also, because no one provided U with the budget and cooking training, we could probably help with that. It wouldn't be as good as someone coming in and doing these things with U, but I don't see why we all can't come up with some easy recipes-that would also be healthy, and not expensive. We could give U the shopping list, and directions on how to prepare it. It might be fun. We could all tune in for ideas for supper! I could also send U magazines-like Family Circle, that have menus for the month, and cooking directions for everything. If you're interested-just say so. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 I don't know how things work in the states > but I live in Canada and we get allot of help from the government > when you have a child with disabilities. What part of canada are you from? What help, LOL i have to fight for every last thing and i still bearly have anything i need in terms of funding. Governments arent doing squat! Let me know what organizations are helping you cause they arnt helping me no matter how many times i approach them. Hell Community care is only helping me after i told them i would kill myself if they didnt help. lol. As for my psyc eval, i told them voices in my head make me burn myself, just so they would put me on their waiting list. Its so flippen irritating that i have to be so extream just to get the assistance. Seariously its sad. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 I don't know how things work in the states > but I live in Canada and we get allot of help from the government > when you have a child with disabilities. What part of canada are you from? What help, LOL i have to fight for every last thing and i still bearly have anything i need in terms of funding. Governments arent doing squat! Let me know what organizations are helping you cause they arnt helping me no matter how many times i approach them. Hell Community care is only helping me after i told them i would kill myself if they didnt help. lol. As for my psyc eval, i told them voices in my head make me burn myself, just so they would put me on their waiting list. Its so flippen irritating that i have to be so extream just to get the assistance. Seariously its sad. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 WOW thats bad in my opinion all ur government cares about is whether they win the war in iraq and dong get me started on that one LOL but its the same here our primeminister is like best best firends with that idiot president he doesnt give a stuff about whether we live or die and they r allwasy saying we will have a terrorist attack in my opinion we will all die of negligence befor the terrorist coem near us we liek you dotn have the services we need its all stuff bout whos bombing who barli nine ok i admit it is wrong to sentence someone to death but istn it more wrong to let hundreds of people go with out their services i see this all the tiem and it makes me so annoyed i dotn bother watchign the news anymore coz theirs allways soemthing going on maybe im wrong but i think heaps of peopel feel the way i do why hosptials are closing down coz no one is paying attention if it came to people like us it wouldnt happen but it doestn does it ellen in aus > > I don't know how things work in the states > > but I live in Canada and we get allot of help from the government > > when you have a child with disabilities. > > > What part of canada are you from? What help, LOL i have to fight for > every last thing and i still bearly have anything i need in terms of > funding. Governments arent doing squat! Let me know what organizations > are helping you cause they arnt helping me no matter how many times i > approach them. Hell Community care is only helping me after i told them > i would kill myself if they didnt help. lol. As for my psyc eval, i > told them voices in my head make me burn myself, just so they would put > me on their waiting list. > > Its so flippen irritating that i have to be so extream just to get the > assistance. Seariously its sad. > > Chantelle > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 actualy i do use cafeen pills just to have the energy to get to work, clean my room and really do anything. if i dont take the pills i just sit on my chair and stair off in space. I dont even have the energy to get anything accomplished. Its madning and im sick of living like this. I feel like ive talked to all i can think of to talk to. Who elce can i get help from? I feel like im at a loss. Its not like anyone here can help me anyways. Im missrible in my job. im missrible in my life. I hate visiting family, in fact i wish they would all just dissapear and leave me alone. I dont have any energy to do anything all week and they want me to visit on the weekend. I never get to do anything for myself. I never get a day to just relax. im always cleaning. constantly in circles. Someone helps me get my place clean and its a mess two days later. I cant sleep at night. i cant stay awake durring the day. I get blood tests, vitamin levels and all that shit and it comes out normal. I think how the hell can it be normal if ive been eating junk cause i cant afford food that has substantial nutritional value. Heck im tired of the fact that i can write and seem soooo damn intelegent but i cant do basic things like budget or even cook. And if one more person says im doing so well i am going to get really peeved. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Ellen, im actualy in canada not the us, but the new prime minister is very pro iraq war too. However with a minority government he better not try to say that canada should go to war. I think that would end his time in office before it even begain, lol. Stupid git he is. Chantelle > > > > I don't know how things work in the states > > > but I live in Canada and we get allot of help from the government > > > when you have a child with disabilities. > > > > > > What part of canada are you from? What help, LOL i have to fight for > > every last thing and i still bearly have anything i need in terms of > > funding. Governments arent doing squat! Let me know what organizations > > are helping you cause they arnt helping me no matter how many times i > > approach them. Hell Community care is only helping me after i told them > > i would kill myself if they didnt help. lol. As for my psyc eval, i > > told them voices in my head make me burn myself, just so they would put > > me on their waiting list. > > > > Its so flippen irritating that i have to be so extream just to get the > > assistance. Seariously its sad. > > > > Chantelle > > > > > > > > > > > > Membership of this email support groups does not constitute membership in > > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > > information and membership, please visit http://www.chargesyndrome.ca or > > email info@... . > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Chantelle, I think there's a decent amount of help when the kids are babies/small/schoolage, but then as they get to adulthood, things are less available unfortunately. Weir Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 I agree with the others - the diagnosis is important, simply as a way to increase understanding of what her needs are, what medical things to watch out for, what educational strategies might be needed, and to receive the appropriate services. Good luck, Kim > Hi ... > > I know exactly what you were going through...I too suspect my son has CHARGE, > but my husband is reluctant to go ahead for a genetics appointment and get him > 'officially' diagnosed because he has a 'mild' case, I keep thinking that it > would be so much better to know it and let his teachers know that he has to > learn on his own pace...can you please, or anyone please let me know what > should I do in order to give my precious little son what's best for him? We > live in southern california and would like to know where to get started...I > read about the blood test that has to be sent to Holland and costs so much, we > can not afford that...Would love to hear your feedback! Good luck to you and > your princess!! > Lu > > Genetics Appointment > > > Guess what everyone! Alissa is officially diagnosed with Charge! Daaaa > I could have told them that a long time ago. Its good news in a sense > that the docs and I are now all on the same page. At this point I > really don't care what she's got! Shes my little princess no matter > what! :0) > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or email > info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
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