Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 Hi, my name is Tammy and my 8 year old daughter Brenna may have CF. We are currently waiting for the results of her genitic tests as she has had 3 sweat tests done (all coming back borderline). She has been in and out of hospital all her life with various ailments. When she was a baby we were told that she had a milk allergy and that was the reason she was not thriving as she should be. It seem like she has now had a chronic cough forever. She has had many cases of pnemonia and is now on a perventitive dose of antibiotics constantly and still gets sick. The 'specialist' we saw in Calgary said she thinks Brenna has Dysmotile Cilia Syndrom but would not give a definate diagnosis so we still wait!! My husband and I took her to a pulmonologist in Edmonton on March 16, He did a bronchostopy and her lungs collapsed when he tried to suction them. At that time he did blood work for the genetic testing. He told us then that her lungs were growing strep, were damaged, contained lots of mucus and were inflamed. Brenna also had her 3rd sweat test at this time, result 48. This dr. said that he was pretty sure she had CF but did not want to put it in writing until her genetic tests come back. She gets stomach pains when she eats, has dark circles under her eyes, irratic heart rate and wheezing. I am hoping to hear from anyone with similar experiences. Hope to hear from everyone soon Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Tammy, I have two daughters with CF and my oldest was 6 when she was diagnosed. It is an awful feeling know there is something wrong but know one can figure out what is wrong. It took for my oldest to have polyps hanging out of her nose for our doctor to finally send us to a specialist who recommended us be tested and after we found out b about our oldest they tested our other two daughters and our youngest hand it too. I knew after reading about CF that they did because there stools were just like they said they ate all of the time and never really looked that they did. So all of the signs where there. Oh and the black circles under she had that too and now that they know what is wrong they are being treated and are feeling so much better and are starting to enjoy being a kid because they know what it is like to feel good now. I hope this helps and you can e-mail me anytime. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Deana, When she is fighting bacteria I notice the dark circles more but when she is feeling good I don't as much. I think the reason why I notice them more when she is sick is because she is so pale when she is not feeling well. I hope this helps. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Hi Deb A, I read where your daughters have the dark circles under their eyes-since they are getting treatment are the circles going away? My son has those and they seem to get worse at times but I don't really know why, and I was just wondering if anyone else out there has the same problem and what their treatments are. Thank you, Deana >From: gdattig5@... >Reply-To: cfparents >To: cfparents >Subject: Re: my 8yr old may have cf >Date: Wed, 3 Apr 2002 12:23:34 EST > >Tammy, >I have two daughters with CF and my oldest was 6 when she was diagnosed. It >is an awful feeling know there is something wrong but know one can figure >out >what is wrong. It took for my oldest to have polyps hanging out of her nose >for our doctor to finally send us to a specialist who recommended us be >tested and after we found out b about our oldest they tested our other two >daughters and our youngest hand it too. I knew after reading about CF that >they did because there stools were just like they said they ate all of the >time and never really looked that they did. So all of the signs where >there. >Oh and the black circles under she had that too and now that they know what >is wrong they are being treated and are feeling so much better and are >starting to enjoy being a kid because they know what it is like to feel >good >now. I hope this helps and you can e-mail me anytime. Deb A _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Hi Deana This is Tammy my daughter Brenna has those dark circles all the time to sometimes they are darker than other times.I would also like to know why this is if you get any info on this could you please let me know thanks Tammy Re: my 8yr old may have cf >Date: Wed, 3 Apr 2002 12:23:34 EST > >Tammy, >I have two daughters with CF and my oldest was 6 when she was diagnosed. It >is an awful feeling know there is something wrong but know one can figure >out >what is wrong. It took for my oldest to have polyps hanging out of her nose >for our doctor to finally send us to a specialist who recommended us be >tested and after we found out b about our oldest they tested our other two >daughters and our youngest hand it too. I knew after reading about CF that >they did because there stools were just like they said they ate all of the >time and never really looked that they did. So all of the signs where >there. >Oh and the black circles under she had that too and now that they know what >is wrong they are being treated and are feeling so much better and are >starting to enjoy being a kid because they know what it is like to feel >good >now. I hope this helps and you can e-mail me anytime. Deb A _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Hello.. Jess has had dark circles since the day she was born. She is SO white that you really notice them. I have them also because I have bad allergies so the doc is assuming that along with the CF she has allergies and I ahve noticed that since she has been on the Zyrtec they are not quite as bad. They do get bad when she is really sick though. Hope this helps... Kim (daughter Jessie 2 w/CF and Kira 6 w/o CF) _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Kim Tammy here agen they had done allergey tests on Brenna and they say she dose not have any so iam not sure what it could be other than she never feels healthy so maybe she is always trying to fight some kind of infection. Tammy Re: my 8yr old may have cf Hello.. Jess has had dark circles since the day she was born. She is SO white that you really notice them. I have them also because I have bad allergies so the doc is assuming that along with the CF she has allergies and I ahve noticed that since she has been on the Zyrtec they are not quite as bad. They do get bad when she is really sick though. Hope this helps... Kim (daughter Jessie 2 w/CF and Kira 6 w/o CF) _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Not on the CF subject, but I too have a Brenna. I do have a son named that is two and has CF. > >Reply-To: cfparents >To: cfparents > >Subject: my 8yr old may have cf >Date: Tue, 2 Apr 2002 19:28:49 -0700 > >Hi, my name is Tammy and my 8 year old daughter Brenna may have CF. We are >currently waiting for the results of her genitic tests as she has had 3 >sweat tests done (all coming back borderline). She has been in and out of >hospital all her life with various ailments. When she was a baby we were >told that she had a milk allergy and that was the reason she was not >thriving as she should be. It seem like she has now had a chronic cough >forever. She has had many cases of pnemonia and is now on a perventitive >dose of antibiotics constantly and still gets sick. >The 'specialist' we saw in Calgary said she thinks Brenna has Dysmotile >Cilia Syndrom but would not give a definate diagnosis so we still wait!! My >husband and I took her to a pulmonologist in Edmonton on March 16, He did a >bronchostopy and her lungs collapsed when he tried to suction them. At that >time he did blood work for the genetic testing. He told us then that her >lungs were growing strep, were damaged, contained lots of mucus and were >inflamed. Brenna also had her 3rd sweat test at this time, result 48. This >dr. said that he was pretty sure she had CF but did not want to put it in >writing until her genetic tests come back. >She gets stomach pains when she eats, has dark circles under her eyes, >irratic heart rate and wheezing. >I am hoping to hear from anyone with similar experiences. > >Hope to hear from everyone soon >Tammy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Our 17mth has dark circles too. I agree totally that they're hardly noticable when she's not ill, but are so dark when she's ill and pale. Re: my 8yr old may have cf Deana, When she is fighting bacteria I notice the dark circles more but when she is feeling good I don't as much. I think the reason why I notice them more when she is sick is because she is so pale when she is not feeling well. I hope this helps. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Good Morning All, 's always seem to be dark/noticible but at times they seem to be oh I don't know exactly how to put it but very, very dark, the only time they seem to fade a little is during the summer if he spends A LOT of time outside and gets a tan, then I think they don't go away they are just covered up~~. Are anyone else's like that? Take care, Deana mom of 5 w/cf, and 11 no cf >From: Katy Pepper Reply-To: cfparents To: > " cfparents ' " Subject: RE: my 8yr old may have >cf Date: Thu, 4 Apr 2002 09:08:19 +0100 > >Our 17mth has dark circles too. I agree totally that they're hardly >noticable when she's not ill, but are so dark when she's ill and pale. > > Re: > my 8yr old may have cf > > >Deana, When she is fighting bacteria I notice the dark circles more but >when she is > >feeling good I don't as much. I think the reason why I notice them more >when > >she is sick is because she is so pale when she is not feeling well. I hope >this helps. Deb A > > > Quote Link to comment Share on other sites More sharing options...
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