Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 Merry Christmas and Happy New Year! Sorry I have not been as involved in this list lately but between sick husbands and doing all the shopping and all the wrapping and all the cooking and all the CT and all the nebulizers and all the doctors appointments I have not had time or the energy to answer back Please accept my apology. Well, I now have a few questions to send to you all out there. Maureen went one Tobi first in Oct when she tested positive for her 1st Pseudo then she was off 28 days in Nov. And then we had a quick PFT before going back on TOBI Her PFT's were down in Oct but her wait was up and then in the beginning of Dec she lost 2lbs when she was off TOBI and her PFT's were slightly improved. So on again for 28 more days Dec. through last Tues. We go back for a check up and she has gained the 2lbs back and her PFT's are Back up again. HMMMM we just stopped the meds 2 days ago So now the want her off in Jan and back on again in Feb and then the will see her again early April just within the 28 day cycle. Is she ever coming off TOBI? Or is this all normal? I know the weight gain is from The TOBI she proved that back in Dec. when she lost weight while she was off it. Is anyone else going through this? Where do we go if she gets sick? Or does the TOBI prevent that? Maybe I am going into my winter blues but I am getting nervous. Is there something there they are not telling me? She also had Polyps last year pretty bad and he was all set to send us to an ENT then they shrunk and they do not really seem to bother her since Sept or so at the end of allergy season I know there are some others out there with polyp history behind them I thought they were going to be a problem now they are not? Am I just lucky and should count my blessings? Maybe I am just overreacting and should just relax I still have to take down the Christmas tree was waiting for help but that would be a waste of time Thanks for the Vent!!! Meg Mom of 2 9yowcf & 4 1/2 yowocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 Meg, has been on Tobi since this past May, when he finished with IV for Steno. At a check up in August the doctor said if he kept doing good then he may be able to come off the Tobi; however, back in October he started to get sick again. Thank God for Tobi and Bactrim. The combination has seemed to help keep him off IV's this winter. He is doing good, maintaining and gaining weight. The last two on cycles he has had to start about 4-5 days earlier than planned. But it seems to help, and the nurses tell me that many parents can see a difference in the off time and when it is getting close to start again. I am hoping for a good cold spell here in East Texas to kill off some of the allergens, and eventhough we got a good rain last night, we need much more. Right now is using a hypertonic saline solution (neb) in the evenings to help add moisture in his lungs to avoid any 'sticker stuff'. We have not had to deal with polyps, but did have adenoids removed when he was 1-1/2. Hope this helped some. Daelynn, mom of 11 nocf, Clayton 8 nocf, 4 wcf Happy New Year >From: MMolls@... > >Merry Christmas and Happy New Year! Sorry I have not been as involved in >this list lately but between sick husbands and doing all the shopping and all >the wrapping and all the cooking and all the CT and all the nebulizers and >all the doctors appointments I have not had time or the energy to answer back >Please accept my apology. >Well, I now have a few questions to send to you all out there. Maureen went >one Tobi first in Oct when she tested positive for her 1st Pseudo then she >was off 28 days in Nov. And then we had a quick PFT before going back on TOBI >Her PFT's were down in Oct but her wait was up and then in the beginning of >Dec she lost 2lbs when she was off TOBI and her PFT's were slightly improved. > So on again for 28 more days Dec. through last Tues. We go back for a check >up and she has gained the 2lbs back and her PFT's are Back up again. HMMMM >we just stopped the meds 2 days ago So now the want her off in Jan and back >on again in Feb and then the will see her again early April just within the >28 day cycle. Is she ever coming off TOBI? Or is this all normal? I know >the weight gain is from The TOBI she proved that back in Dec. when she lost >weight while she was off it. Is anyone else going through this? Where do we >go if she gets sick? Or does the TOBI prevent that? Maybe I am going into >my winter blues but I am getting nervous. Is there something there they are >not telling me? She also had Polyps last year pretty bad and he was all set >to send us to an ENT then they shrunk and they do not really seem to bother >her since Sept or so at the end of allergy season I know there are some >others out there with polyp history behind them I thought they were going to >be a problem now they are not? Am I just lucky and should count my >blessings? Maybe I am just overreacting and should just relax I still have >to take down the Christmas tree was waiting for help but that would be a >waste of time > >Thanks for the Vent!!! > Meg >Mom of 2 >9yowcf & 4 1/2 yowocf > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 Dear Meg, I am sorry to tell you this but your daughter is 9? I guess the CF doc should have explained it to you, if Maureen has Pseudo, I would think she needs to be on Tobi on this 28 days on, 28 days off cycle and as long as that keeps her symptoms in check it is fine. If she should someday become resistant to Tobi or it isnt' helping she might need a admission or home IV's. I think its important to follow-up with her sinuses and make sure the polyps are in check, a chronic sinus problem can lead to an increase in pulmo symptoms. Just my 2 cents and here is hoping the Tobi does the trick for Maureen for a good long time! And I sure do feel for you and know how you feel having to do it all---but do remember to take time for YOU!!! this is coming from experience here where I thought I had to do it all too but now I have fibromyalgia and it seems I want to do it and I just can't manage! our tree is down and packed in it's box and so are most of the Christmas things and I have realized I can't do it all myself I need help, so I have hired a really good friend to help me with housework, and my husband is taking care of the food and shopping and cooking, and the kids are pitching in and taking care of themselves and helping out with dishes and cleaning etc--they are doing their own wash and I just have to do mine and s'!!! I hope this helps and feel free to ask more questions about anything , thats what we are here for. and don't apologize for not participating, you do when you can and same with the rest of us. love, MOM of 2 teens , Nick age 17 nocf and age 15 (for a few more weeks) wCF > From: MMolls@... > > Merry Christmas and Happy New Year! Sorry I have not been as involved in > this list lately but between sick husbands and doing all the shopping and all > the wrapping and all the cooking and all the CT and all the nebulizers and > all the doctors appointments I have not had time or the energy to answer back > Please accept my apology. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 High Five to !!!!! She is an accomplished student, dancer... and... shopper! Gotta love that, too! Michele & Aubrie HAPPY NEW YEAR Dear Charge Family, I don't mean to brag, but want to share a cHARGEr's success. (19) got her University of Akron first semester freshman grades on line. They don't mail them any more. She earned 1 - A, 4 - B's and 1 - C. We are very very proud of her. She works very very very hard to do well. She is a " never give up " kid like so many here. Add to that she stayed healthy all semester. That too is an accomplishment. That's the longest stretch of good health she has ever had. I praise God for that. As mom's do I worried more about her health than I did her grades. She will be taking pre- college algebra (remedial) this semester. She will have her work cut out for her. She will also have English, Ballet, Pointe and Modern Dance and a book class about Dance as an Art form. Once again she will have to work very hard. HAPPY NEW YEAR TO ALL !!! Blessings and Hugs, Lynn Ohio 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 2, 2004 Report Share Posted January 2, 2004 Lynn, Wow, deserves any and all accolades! What a marvelous year she has had! I was thrilled to read about her grades, and her health. I am always thrilled to read of her joy and accomplishments. Thank you for sharing. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Barbara, I'm so sorry to hear about the loss of your mother-in-law as well as the other two grandparents of your children. Your advice to hug our babies and take care of ourselves is so important. Thank you for the wisdom. Thinking of you, and sending peace your way, RE: " happy " New Year Just a moment to vent... My mother in law died this morning of leukemia. It was a short span from diagnosis and we are thankful for that. The virus we all got after the conference went away but her illness did not. In the space of 54 weeks my kids have lost three grandparents and their forth is terminal (slowly). Many good things that went on this year are outweighed by a heavy sadness and I will be relieved to see 2003 end. So remember to hug your babies and take care of yourselves... " Happy " New Year Barbara-mom,(CHARGE)9, Rosie14 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 5, 2004 Report Share Posted January 5, 2004 Yeah !! maria and the guys HAPPY NEW YEAR > > Dear Charge Family, > > I don't mean to brag, but want to share a cHARGEr's success. > (19) got her University of Akron first semester freshman > grades on line. They don't mail them any more. She earned 1 - A, > 4 - B's and 1 - C. We are very very proud of her. She works very > very very hard to do well. She is a " never give up " kid like so many > here. Add to that she stayed healthy all semester. That too is an > accomplishment. > That's the longest stretch of good health she has ever had. I praise > God for that. As mom's do I worried more about her health than I did > her grades. > She will be taking pre- college algebra (remedial) this > semester. She will have her work cut out for her. She will also have > English, Ballet, Pointe and Modern Dance and a book class about > Dance as an Art form. Once again she will have to work very hard. > HAPPY NEW YEAR TO ALL !!! > Blessings and Hugs, > Lynn > Ohio > > > > 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 5, 2004 Report Share Posted January 5, 2004 Hooray for ! Oh the hope this gives me... 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 HAPPY NEW YEAR Dear Charge Family, I don't mean to brag, but want to share a cHARGEr's success. (19) got her University of Akron first semester freshman grades on line. They don't mail them any more. She earned 1 - A, 4 - B's and 1 - C. We are very very proud of her. She works very very very hard to do well. She is a " never give up " kid like so many here. Add to that she stayed healthy all semester. That too is an accomplishment. That's the longest stretch of good health she has ever had. I praise God for that. As mom's do I worried more about her health than I did her grades. She will be taking pre- college algebra (remedial) this semester. She will have her work cut out for her. She will also have English, Ballet, Pointe and Modern Dance and a book class about Dance as an Art form. Once again she will have to work very hard. HAPPY NEW YEAR TO ALL !!! Blessings and Hugs, Lynn Ohio 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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