Guest guest Posted February 2, 2002 Report Share Posted February 2, 2002 , I'll be thinking of you all on Monday and hope you get some proper answers. Hugs. Elaine mum to Elise (9 yrs) & Jack (4 yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2002 Report Share Posted February 2, 2002 In a message dated 2/1/02 11:00:45 PM US Eastern Standard Time, _H_Kis@... writes: << So, I know that your all busy but, if you wouldn't mind just saying a little pray that we finally get to the root of this I would really greatly appreciate this. >> , You and will be in our thoughts and prayers and hopefully everything will come out okay. I indeed know how frustrating it can be to see your child cough constantly and feel helpless to stop it. Hang in there and have you tried a warm air humidifier or vaporizer? Sometimes that will help Tryny. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2002 Report Share Posted February 2, 2002 My son has been sick for months on and off antibiotic and when they by chance did an xray at the pulmo at U of M this past WEd, they found he had pneumonia...So they will be doing a bronchoscopy to check the area out and flush out the junk in the lungs. Ask about a bronch for your child. This may help. It is a procedure and there are risks but it may be what your child needs to get to the bottom of this. Be pushy and get the answers. Make a list of questions so that you dont forget what to say while you are at the specialist appointment. Good luck. ck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2002 Report Share Posted February 2, 2002 , We will be praying for and thinking of her in hopes that all is ok monday. Good luck and best wishes. mom to 7 years. Wish us luck! Since Oct 6th, came down with some form of bronchitis. Well, since than she hasn't been herself. She's been on and off antiboitic and constantly coughing. She's been on and off Ventalin and Flovent pumps and even on Singulair pills. It took 4 months to get the appointment. Well, we finally see the Respiratory specialities this Monday. She's still so pale. I'm almost afraid of what they will find. Or, even worse not find. All her chest x-rays always come out clear. So, I know that your all busy but, if you wouldn't mind just saying a little pray that we finally get to the root of this I would really greatly appreciate this. Thanks Kis mom to 10 yrs. old ChARgEr ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2002 Report Share Posted February 2, 2002 We've tried everything. She's seen the dr. at every 2nd week and so many specialities and nobody can really come up with something. I hope they have the answer's. I personal think that the orginial bronchitis never went away and that all the pumps are doing is carmerflaging the bronchitis. Thanks Mom to 10 yrs. old > > In a message dated 2/1/02 11:00:45 PM US Eastern Standard Time, > _H_Kis@... writes: > > << So, I know that your all busy but, if you wouldn't mind just > saying a little pray that we finally get to the root of this I would > really greatly appreciate this. >> > > , > > You and will be in our thoughts and prayers and hopefully everything > will come out okay. I indeed know how frustrating it can be to see your > child cough constantly and feel helpless to stop it. Hang in there and have > you tried a warm air humidifier or vaporizer? Sometimes that will help > Tryny. > > Debra > > > 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 > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. 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 February 2, 2002 Report Share Posted February 2, 2002 Thanks , I really do appreciate this and thank you Elaine in Scotland. Keep your fingers crossed guys. > > , We will be praying for and thinking of her in hopes that all is ok monday. Good luck and best wishes. > mom to 7 years. > Wish us luck! > > > Since Oct 6th, came down with some form of bronchitis. Well, > since than she hasn't been herself. She's been on and off antiboitic > and constantly coughing. She's been on and off Ventalin and Flovent > pumps and even on Singulair pills. It took 4 months to get the > appointment. Well, we finally see the Respiratory specialities this > Monday. She's still so pale. I'm almost afraid of what they will > find. Or, even worse not find. All her chest x-rays always come out > clear. So, I know that your all busy but, if you wouldn't mind just > saying a little pray that we finally get to the root of this I would > really greatly appreciate this. > > Thanks Kis mom to 10 yrs. old ChARgEr ... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2002 Report Share Posted February 2, 2002 Thank you I will most certain do that. > > My son has been sick for months on and off antibiotic and when they by chance > did an xray at the pulmo at U of M this past WEd, they found he had > pneumonia...So they will be doing a bronchoscopy to check the area out and > flush out the junk in the lungs. Ask about a bronch for your child. This may > help. It is a procedure and there are risks but it may be what your child > needs to get to the bottom of this. Be pushy and get the answers. Make a > list of questions so that you dont forget what to say while you are at the > specialist appointment. Good luck. ck > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2002 Report Share Posted February 2, 2002 Dear , I will add you and in our prayers tonight, please let us know how it goes, as I also was in the same postion you are only it was with the charge diagnosis. atelyn was not Diagnosed with Charge until the age of two. So, for two years we went through specialist after specialist to find out what was wrong with our daughter and i know the feeling of the Dr testing for something and it always coming back negative, but the wait to find out that it was negative was unbelieveable and then when they finally diagnosed charge syndrome I was more relieved that I knew what it was and could now begin on a track to help her instead of guessing how to help her. Good luck to you and your family! You are in our prayers! Roxanne mother to Katelyn(4CHaRgEr)Kristopher(2) and wife to Don! -- In CHARGE@y..., " christina_h_kis " <_H_Kis@c...> wrote: > Since Oct 6th, came down with some form of bronchitis. Well, > since than she hasn't been herself. She's been on and off antiboitic > and constantly coughing. She's been on and off Ventalin and Flovent > pumps and even on Singulair pills. It took 4 months to get the > appointment. Well, we finally see the Respiratory specialities this > Monday. She's still so pale. I'm almost afraid of what they will > find. Or, even worse not find. All her chest x-rays always come out > clear. So, I know that your all busy but, if you wouldn't mind just > saying a little pray that we finally get to the root of this I would > really greatly appreciate this. > > Thanks Kis mom to 10 yrs. old ChARgEr ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2002 Report Share Posted February 2, 2002 , We will be thinking of you guys, please keep us posted, I hope they can find some answers for her. Weir Mom to Kennedy 4yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/kawfolks ICQ #1426476 " In three words I can sum up everything I've learned about life: it goes on. " - Frost Wish us luck! Since Oct 6th, came down with some form of bronchitis. Well, since than she hasn't been herself. She's been on and off antiboitic and constantly coughing. She's been on and off Ventalin and Flovent pumps and even on Singulair pills. It took 4 months to get the appointment. Well, we finally see the Respiratory specialities this Monday. She's still so pale. I'm almost afraid of what they will find. Or, even worse not find. All her chest x-rays always come out clear. So, I know that your all busy but, if you wouldn't mind just saying a little pray that we finally get to the root of this I would really greatly appreciate this. Thanks Kis mom to 10 yrs. old ChARgEr ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2002 Report Share Posted February 2, 2002 Thank You & Roxanne, They better give us some answers. They get better! > > Dear , > I will add you and in our prayers tonight, please let us know > how it goes, as I also was in the same postion you are only it was > with the charge diagnosis. atelyn was not Diagnosed with Charge > until the age of two. So, for two years we went through specialist > after specialist to find out what was wrong with our daughter and i > know the feeling of the Dr testing for something and it always coming > back negative, but the wait to find out that it was negative was > unbelieveable and then when they finally diagnosed charge syndrome I > was more relieved that I knew what it was and could now begin on a > track to help her instead of guessing how to help her. Good luck to > you and your family! You are in our prayers! > Roxanne mother to Katelyn(4CHaRgEr)Kristopher(2) and wife to Don! > > -- In CHARGE@y..., " christina_h_kis " <_H_Kis@c...> wrote: > > Since Oct 6th, came down with some form of bronchitis. Well, > > since than she hasn't been herself. She's been on and off > antiboitic > > and constantly coughing. She's been on and off Ventalin and Flovent > > pumps and even on Singulair pills. It took 4 months to get the > > appointment. Well, we finally see the Respiratory specialities > this > > Monday. She's still so pale. I'm almost afraid of what they will > > find. Or, even worse not find. All her chest x-rays always come > out > > clear. So, I know that your all busy but, if you wouldn't mind > just > > saying a little pray that we finally get to the root of this I > would > > really greatly appreciate this. > > > > Thanks Kis mom to 10 yrs. old ChARgEr ... > > > > 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 > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. 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...
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