Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 Welcome! I'm a new member, too. The group seems to welcome us very quickly and there doesn't seem to be a right or wrong way to negotiate things. I think some people jump in writing messages or asking questions, others sit back and read for a while, others strike up personal friendships with members and share anything from frustrations about medical care to details of their dating life. I get overwhelmed by the number of messages, but I'm also getting great feedback when I have questions and I feel less alone with this site -- it gets tough to explain to friends what this disease is about. I'm also a parent (father in my case) to three children, though mine are just 8, 4, and 1. I was diagnosed in '94 w/ PSC and I've been itching fairly persistently since '93. I didn't have many other symptoms until this past April. The itching can be quite annoying, but I'm having good luck with a combination of actigall and naltrexone, an opiate antagonist. For several years, rifampin helped me a lot. Others I've talked to had luck with atarax, but that did nothing for me. My most frustrating/embarrassing experiences with itching have been when I'm around others and suddenly realize my hand is in my shirt or inside my sock scratching. When I was dating my wife to be her sister even commented to my wife that I seemed to have an obsession with scratching -- I think she thought I did it because I was really nervous about something. I hadn't been diagnosed then and thought I just had allergies. When I had a bout with more severe symptoms in April and May of this year, I had trouble concentrating because of the itching. I practiced a lot of distraction, relaxation, and sometimes meditation techniques then. What do others do? Again, welcome to the group. Hope grad school is treating you well. I'm in grad school, too. I hope to finish my coursework and dissertation for my PhD next spring and then I'll just have a one year intership left. Philip > I am a new member and am wondering how to negotiate this site. Do I > just start sending messages? I have been dianosed with PSC /UC 3 > years. I take Actigol and Asachol. Other than a few episodes of > Cholangitis I have been doing pretty well. I am a graduate student and > a nurse and an artist. I have 3 children 25, 24, and 20 and a > wonderful husband. I'm also a grandmother. I really want to know how > others deal with this itching thing and the fatigue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Bernie- Hello and welcome to you and Josh. My daughter, Aubrie, is nearly 7 yrs old and attending our neighborhood school in regular 1st grade with an aide. She mild-mod hearing loss, some visual impairment, submucous cleft palate, motor issues, etc. No trach or Gtube. We're in IL so I can't help with CA-specific questions. Good luck- Schooling is a challenge to say the least - Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Bernie, I strongly recommend you contact Jackie Kenley and Brown who work in San Francisco for CA deafblind services. Even if does not have vision impairment also, these folks are the best at understanding CHARGE and may be of help with the school issues. Jackie has an adult daughter who has CHARGE as well. There are other families on the list in the bay area, I am sure you will be hearing from them. There is comfort in finally having an answer as to what Syndrome our child has, at least then information can be gained and action taken. Not knowing was hard for me and it was only for 3 weeks, 5 years and I might have gone nuts. Glad you have answers. Kim L > > > Hello All, > > My name is Bernie Hill, I'm the mom of a 5 year old names who > was just diagnosed with CHARGE last week. I can't believe it has > taken this long. has a cleft lip and palate, hearing loss, > Trach, g-tube, he is missing a kidney and testicle, he just started > walking this year (without his walker) and is going to > Kindergarten. The appropriate school is the challenge right now and > I'm not sure if he's in the right place, more meetings to come. I > was wondering if anyone was from California, specifically the Bay > Area. I hope to get to know you all over time. Thanks for being > out there. > > Bernie, mom of Josh > > > > > > > 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 October 19, 2004 Report Share Posted October 19, 2004 Bernie, Welcome to the list, there are a lot of knowledgable professionals involved with CHARGE out in CA, I'm sure you'll be pointed towards them from the members of this list. Brown sticks out in my mind as someone you should contact. You can email me privately lisaweir@... and I will give you his contact info. Weir Mom to Kennedy, 6 yr old with CHARGE, 15, 13 and wife to Graeme New Brunswick, CANADA Visit our family on the web - http://ca.geocities.com/weirfamilyrogers Email: lisaweir@... Bernadine Hill wrote: Hello All, My name is Bernie Hill, I'm the mom of a 5 year old names who was just diagnosed with CHARGE last week. I can't believe it has taken this long. has a cleft lip and palate, hearing loss, Trach, g-tube, he is missing a kidney and testicle, he just started walking this year (without his walker) and is going to Kindergarten. The appropriate school is the challenge right now and I'm not sure if he's in the right place, more meetings to come. I was wondering if anyone was from California, specifically the Bay Area. I hope to get to know you all over time. Thanks for being out there. Bernie, mom of Josh 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 October 20, 2004 Report Share Posted October 20, 2004 Hello Bernie and welcome. Kay 50 yr old CHARGEr New Member > > > Hello All, > > My name is Bernie Hill, I'm the mom of a 5 year old names who > was just diagnosed with CHARGE last week. I can't believe it has > taken this long. has a cleft lip and palate, hearing loss, > Trach, g-tube, he is missing a kidney and testicle, he just started > walking this year (without his walker) and is going to > Kindergarten. The appropriate school is the challenge right now and > I'm not sure if he's in the right place, more meetings to come. I > was wondering if anyone was from California, specifically the Bay > Area. I hope to get to know you all over time. Thanks for being > out there. > > Bernie, mom of Josh > > > > > > > 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...
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