Guest guest Posted August 20, 2003 Report Share Posted August 20, 2003 Specialists internist neurologist vascular I live in a small town called MIdland Texas the closest clinic is and White and I have to fly to get there > oh god, I am so sorry you are so sick..........I know this drug is dreaded by > all but you sound as if you may need a short course of steroids to get your > inflammation down. Has Mr. Dr. mentioned?...also, what type of specialist have > you gone to?...if its just pulmonary, then you need to get to a > rheumy.......... > > Good luck, and feel free to ask any of us more questions, that is what we are > all here for > > Stacie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2003 Report Share Posted October 6, 2003 fer, We live in ville, Fl but both me and my wife grew up in Coral Springs, Fl. I will have my wife , look at your email and see if she can recommend anything for the taping or such. Campanale, Sue(wife) 7½, na 8/18/99-->8/13/2002 (cHARgE) Campanale johncampanale@... http://home.comcast.net/~briannacampanale <><><><><><><><><><><><><><><><><><><><><><> HEDGEBUILDERS---Protecting YOUR family and you...... www.hedge.org/sr/0074.htm " Making the Internet Safe for Work and Play " <><><><><><><><><><><><><><><><><><><><><><> (unknown) Any CHARGE families in South Florida? I'm in Pembroke Pines. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2003 Report Share Posted October 19, 2003 Hi, welcome to our family. It sounds like you've had a rough time lately with the sarc. I've had pulm sarcoidosis for 12 or 13 yrs, and like you, it started with my eyes. I had bilateral iritis--inflammation of the iris of both eyes, was wearing dark glasses inside with those wonderful dark glasses to wear over your glasses over the dark ones. Not a good thing. For those of you who are new here, eyes and lungs get hit about 80% of the time with sarcoidosis. When you have iritis, not only are your eyes super light sensitive, but the chances of losing your vision to an acute glaucoma attack is very real. So pay really, REALLY close attention to your eyes. Anyway, my sarc was put into remission after 3 1/2 years of prednisone, stayed quiet for 4 years, and came back with a vengence. It's now systemic and neuro and pulm and yep-- I have iritis. So, my message to you is to be kind to yourself. Let your MD's know about the problems with balance, walking, etc. It still sounds like you're not under total control. I truly am sorry you had to find us, and know we will gladly answer questions, hold hearts, whatever you need to help you cope with this disease. Compassionately, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Glad she's doing well, hope you get home soon. maria (unknown) > I just wanted to thank everyone for their support and prayers. Shanna > is doing better, not to sure when we will get to go home. The Pulm > group and the Cardiology group keep going back and forth. As of now > her lungs are looking good and they are going to pull her chest tube > maybe on Tuesday. Still just wondering if any one else had any > problems with plural infusions? > > Again Thank you so very much. > > Diane > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Hi Dianne, Great to hear that Shanna is doing better. The only experience I have had with pleural effusions was after Jack had heart surgery. He had to be re-intubated for 5 days but has had no lasting effects. Elaine mum to Elise(11yrs) & Jack (6yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 , If her goal is to get them to give her pajamas, I would bring other clothes and make her put those on and NOT give her the pajamas. That's my .02 cents! Weir Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme New Brunswick, Canada Visit our family web site: http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada: http://www.chargesyndrome.ca (unknown) Hello! finally saw the Endocrinologist yesterday, but I am not completely settled with how he handled the situation. Her mother is in now way concerned about her growth and everything that is associated with her being a 23 year old and so tiny. The Endo says that if she isn't concerned and doesn't want puberty to happen then we should leave it alone. We will be doing a Dexa scan in the near future and I have to take her for labs today, but it is very apparent that he knows nothing about CHARGE. They are clueless. Her mother is tired of the specialists and docs, although I am now the one going to these appts. Also, we will be have ear reconstruction surgery soon, as her ear infections are internal and no form of antibiotic is helping. has been potty trained since 21 and has recently been having accidents at her appts to get them to give her pajamas. She has become quite manipualative and seems to be getting worse.I take her to the bathroom before hand and even put pullups on her, she soaks right through. Any advice? , friend to 23, CHARGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 hi let her wear her own pjs to the appt - and get her a badge that says " i dressed myself " ! :-P that may not be what you want to accomplish? - 's idea of taking her own spare clothes could work... jo ----- Original Message ----- > has been potty trained since 21 and has recently been > having accidents at her appts to get them to give her pajamas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 (unknown) Hello! finally saw the Endocrinologist yesterday, but I am not completely settled with how he handled the situation. Her mother is in now way concerned about her growth and everything that is associated with her being a 23 year old and so tiny. The Endo says that if she isn't concerned and doesn't want puberty to happen then we should leave it alone. We will be doing a Dexa scan in the near future and I have to take her for labs today, but it is very apparent that he knows nothing about CHARGE. They are clueless. Her mother is tired of the specialists and docs, although I am now the one going to these appts. Also, we will be have ear reconstruction surgery soon, as her ear infections are internal and no form of antibiotic is helping. has been potty trained since 21 and has recently been having accidents at her appts to get them to give her pajamas. She has become quite manipualative and seems to be getting worse.I take her to the bathroom before hand and even put pullups on her, she soaks right through. Any advice? , friend to 23, CHARGE , Sounds to me like is trying to tell people something important--especially because this is a new behavior. I would like to talk with our behavior specialists here at my school (Perkins School) who both have extensive experience with CHARGE, behaviors, and adults. Will get back to you, if that is ok. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 I've lost your post so might misspell. What is a Dexa scan? Our is now 19 and on Primarin. I do not know what to expect, that is, I know what the doctor said, but I'd like to hear from others who've already been this road. Thanks - Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 HI , It sounds to me like is trying to tell somebody something important--if she has been toilet trained for a while now and is now having " accidents " again, something might be wrong, emotionally and/or physically. Before I say anything more I want to " confer " with my colleagues here--two behavior specialists with extensive training and CHARGE experience. Of course, without knowing , this could be a tricky venture. But, when they get in, I will talk to them and we can get back to you with any advice and if you like it, great, if not, that is ok, too. more later. pam > ---------- > From: courtneyandheather > Reply To: CHARGE > Sent: Tuesday, December 9, 2003 2:03 PM > To: CHARGE > Subject: (unknown) > > Hello! > > finally saw the Endocrinologist yesterday, but I am not > completely settled with how he handled the situation. Her mother is > in now way concerned about her growth and everything that is > associated with her being a 23 year old and so tiny. The Endo says > that if she isn't concerned and doesn't want puberty to happen then > we should leave it alone. We will be doing a Dexa scan in the near > future and I have to take her for labs today, but it is very apparent > that he knows nothing about CHARGE. They are clueless. Her mother > is tired of the specialists and docs, although I am now the one going > to these appts. Also, we will be have ear reconstruction surgery > soon, as her ear infections are internal and no form of antibiotic is > helping. > has been potty trained since 21 and has recently been > having accidents at her appts to get them to give her pajamas. She > has become quite manipualative and seems to be getting worse.I take > her to the bathroom before hand and even put pullups on her, she > soaks right through. Any advice? > > , friend to 23, CHARGE > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2003 Report Share Posted December 11, 2003 , That's what I do! > , > If her goal is to get them to give her pajamas, I would bring other clothes > and make her put those on and NOT give her the pajamas. > That's my .02 cents! > > Weir > Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme > New Brunswick, Canada > Visit our family web site: http://personal.nbnet.nb.ca/gweir > CHARGE Syndrome Canada: http://www.chargesyndrome.ca > (unknown) > > > Hello! > > finally saw the Endocrinologist yesterday, but I am not > completely settled with how he handled the situation. Her mother is > in now way concerned about her growth and everything that is > associated with her being a 23 year old and so tiny. The Endo says > that if she isn't concerned and doesn't want puberty to happen then > we should leave it alone. We will be doing a Dexa scan in the near > future and I have to take her for labs today, but it is very apparent > that he knows nothing about CHARGE. They are clueless. Her mother > is tired of the specialists and docs, although I am now the one going > to these appts. Also, we will be have ear reconstruction surgery > soon, as her ear infections are internal and no form of antibiotic is > helping. > has been potty trained since 21 and has recently been > having accidents at her appts to get them to give her pajamas. She > has become quite manipualative and seems to be getting worse.I take > her to the bathroom before hand and even put pullups on her, she > soaks right through. Any advice? > > , friend to 23, CHARGE > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2003 Report Share Posted December 11, 2003 Joanne, I have done this, as well, but she wets them, too. > hi > let her wear her own pjs to the appt - and get her a badge that says " i > dressed myself " ! :-P > that may not be what you want to accomplish? - 's idea of taking her own > spare clothes could work... > jo > > ----- Original Message ----- > From: " courtneyandheather " <courtneyandheather@y...> > > has been potty trained since 21 and has recently been > > having accidents at her appts to get them to give her pajamas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2003 Report Share Posted December 11, 2003 Thanks Pam! > (unknown) > > Hello! > > finally saw the Endocrinologist yesterday, but I am not > completely settled with how he handled the situation. Her mother is > in now way concerned about her growth and everything that is > associated with her being a 23 year old and so tiny. The Endo says > that if she isn't concerned and doesn't want puberty to happen then > we should leave it alone. We will be doing a Dexa scan in the near > future and I have to take her for labs today, but it is very apparent > that he knows nothing about CHARGE. They are clueless. Her mother > is tired of the specialists and docs, although I am now the one going > to these appts. Also, we will be have ear reconstruction surgery > soon, as her ear infections are internal and no form of antibiotic is > helping. > has been potty trained since 21 and has recently been > having accidents at her appts to get them to give her pajamas. She > has become quite manipualative and seems to be getting worse.I take > her to the bathroom before hand and even put pullups on her, she > soaks right through. Any advice? > > , friend to 23, CHARGE > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > , > Sounds to me like is trying to tell people something important--especially because this is a new behavior. I would like to talk with our behavior specialists here at my school (Perkins School) who both have extensive experience with CHARGE, behaviors, and adults. Will get back to you, if that is ok. > > pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2003 Report Share Posted December 12, 2003 Hi , Can you email me on my . I have some information, but would like to ask some questions that I would like to ask " off list " . My email is pam.ryan@.... Thanks. pam > ---------- > From: courtneyandheather > Reply To: CHARGE > Sent: Thursday, December 11, 2003 4:16 PM > To: CHARGE > Subject: Re: (unknown) > > Thanks Pam! > > > > > > > > > (unknown) > > > > Hello! > > > > finally saw the Endocrinologist yesterday, but I am not > > completely settled with how he handled the situation. Her mother > is > > in now way concerned about her growth and everything that is > > associated with her being a 23 year old and so tiny. The Endo says > > that if she isn't concerned and doesn't want puberty to happen then > > we should leave it alone. We will be doing a Dexa scan in the near > > future and I have to take her for labs today, but it is very > apparent > > that he knows nothing about CHARGE. They are clueless. Her mother > > is tired of the specialists and docs, although I am now the one > going > > to these appts. Also, we will be have ear reconstruction surgery > > soon, as her ear infections are internal and no form of antibiotic > is > > helping. > > has been potty trained since 21 and has recently been > > having accidents at her appts to get them to give her pajamas. She > > has become quite manipualative and seems to be getting worse.I take > > her to the bathroom before hand and even put pullups on her, she > > soaks right through. Any advice? > > > > , friend to 23, CHARGE > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > , > > Sounds to me like is trying to tell people something > important--especially because this is a new behavior. I would like > to talk with our behavior specialists here at my school (Perkins > School) who both have extensive experience with CHARGE, behaviors, > and adults. Will get back to you, if that is ok. > > > > pam > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 , I would rather have a doctor admit they don't know and try to help me find the answers than to proceed on a whim. Bravo to him, good luck with the Neuro ENT Weir Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to Graeme. New Brunswick, Canada Weir homepage: http://personal.nbnet.nb.ca/gweir CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca (unknown) Hello, had an ENT appt. and it was wonderful. Kindof. He said that puzzles him and that he thought that he had developed the right treatment for her ears, only to have her change the plan. He said that he has no idea as to how he can help her and will be referring her to a Neuro ENT. I am happy because he has admitted that he has no clue and isn't going to try to pretend he does! He ear infections are severe, nothing is helping and there have been talks about reconstruction os them and closing holes. Also, we have had the blood workup and are scheduled for the Dexa Scan next week. At our initial Endocrine visit he wasn't concerned, nor seemed to care, that was 23yrs,4ft and 64lbs. I will be greatly put at ease when we have the Dexa. , friend to Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! ---------------------------------------------------------------------------- -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 , is so lucky to have such a good friend. Let us know what happens with her appts. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 z, glad to hear you are finally getting some answers--even if it's I don't know --let's try this... happy new year! (unknown) > Hello, > > had an ENT appt. and it was wonderful. Kindof. He said > that puzzles him and that he thought that he had developed > the right treatment for her ears, only to have her change the plan. > He said that he has no idea as to how he can help her and will be > referring her to a Neuro ENT. I am happy because he has admitted > that he has no clue and isn't going to try to pretend he does! He > ear infections are severe, nothing is helping and there have been > talks about reconstruction os them and closing holes. > Also, we have had the blood workup and are scheduled for the Dexa > Scan next week. At our initial Endocrine visit he wasn't concerned, > nor seemed to care, that was 23yrs,4ft and 64lbs. I will be > greatly put at ease when we have the Dexa. > > > , friend to > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 we are in searcy, about 50 miles north of little rock. shelly wrote: Where are you in Arkansas? We're in Springfield, MO, not that far from the boarder. Moreover, the lawyer who's helped us successfully with educational issues is in Little Rock. Martha Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Where are you in Arkansas? We're in Springfield, MO, not that far from the boarder. Moreover, the lawyer who's helped us successfully with educational issues is in Little Rock. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Hi! My name is and I am mom to 11 mo Charger, Carson. We live in ville, AR and my parents live in Searcy. My dad is pastor of Temple Baptist Church. I'd love to get together sometime. (unknown) > hey! my name is shelly gross. i am wife to wesley and mom to 5yr old madalyn and 20month old charger libby. i'm really interested in finding a contact in arkansas to keep in touch with. please email when you can. > > thanks > shelly > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Do not, and I am screaming this, take too seriously things said about a child as young as yours. When was first in St. Louis Childrens at @ 2 weeks of age, a wonderful neuro resident, so very tired, looked at Andy and me, smiled weakly, and said that he had seen children who " they " thought would never walk. They walked well past the norm, but they ended up all right. Our local ped, years ago, asked us to bring to the local ICU nurses to show what had happened since she left the hospital. Sure, things aren't swell now, but they're certainly not what we were originally told they'd be. Our child is now 18. Services when she was born were much different than they are now. Plug in to this list. Parents of younger children can help. Just don't swallow what you're initially told. We're all here for you. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Dianne, Bryce was diagnosed as being moerately to severely retarded when he was 2 according to the evaluation results. Now at 6, he appears to have well above average intelligence. Two of his teachers think he is extremely smart. These kids are hard to diagnose because they have so many different issues. For example, Bryce couldn't eat or drink at 2 due to an inablity to swallow. So he received a zero on the test for self help skills because eating issues were the first testing criteria. Although he could do many other self help things, he got no credit for these because he " failed " the eating portion of the test. There were several catagories like this. If your child has gross motor weakness, they will score low in this area as well. And of course, hearing and vision issues affect the test too. Anyway, I would not take the test too seriously at this point. Let her be who she will be and her strengths will come out over time. Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Martha, I am screaming with you. Our daugher is 19 and has surpassed everything they told us the first few weeks. will always deal with cHARGE stuff but we didn't even know it was CHARGE 19 years ago. These kids suprise every one!! I found this list two years ago and can " see where we have been " . Lynn Ohio Re: (unknown) Do not, and I am screaming this, take too seriously things said about a child as young as yours. When was first in St. Louis Childrens at @ 2 weeks of age, a wonderful neuro resident, so very tired, looked at Andy and me, smiled weakly, and said that he had seen children who " they " thought would never walk. They walked well past the norm, but they ended up all right. Our local ped, years ago, asked us to bring to the local ICU nurses to show what had happened since she left the hospital. Sure, things aren't swell now, but they're certainly not what we were originally told they'd be. Our child is now 18. Services when she was born were much different than they are now. Plug in to this list. Parents of younger children can help. Just don't swallow what you're initially told. We're all here for you. Martha Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 so glad you had a great time-- is so lucky to have you!! (unknown) > and I went to the Clay Aiken/ son (from American > Idol) tour concert in Seattle last night. She absolutely loved it! > Although our seats were ok at first, we asked about moving closer so > could see better and 15 minutes later we were 20 aisles from > the stage! Clay is her favorite and she danced and flailed about the > whole time he sang! We had attempted to get back stage passes but > apparently didn't have the right connections, but right now she is > happy with her program, looking at all of his pictures. > > Just thought I'd share.... > > , friend to , 23, CHARGE > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 Rivka, I too, am so sorry for what you are dealing with. keep your chin up, there's a reason I believe, for everything, altho most times I dont understand or agree. Always the questions, why. You are in our thoughts and prayers for you and your daughter. Debbie Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.