Guest guest Posted March 29, 2001 Report Share Posted March 29, 2001 Hi--a few days back or so--I think last week, Jeanne, you were talking about delayed gastric emptying ( I think that is what you said) and coughing---I am wondering if you can tell me a bit more about this. Rose is back to coughing a lot again after about a week of hardly any coughing when we changed her feeding volume, and started Robinul, and I am just trying to find a reason why she has more saliva and mucous production again. She does not have a fever--I don't believe she is sick. I am worried and have a very stressed out feeling. I feel like there must be something I could have done to prevent this, yet I believe I am doing all that I can for her..........this is so hard sometimes. I thank you and anyone else for any information. Beckett---Rose's mom (5 1/2 mos.) _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2001 Report Share Posted March 31, 2001 , Did Rose have choanal atresia or stenosis? Things may be blocking back over (scar tissue, etc) and that can be a reason for more "backed up coughiness" going on. Just a thought. Hope you get some answers soon, there's nothing worse than seeing them that way. Hugs, Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: coughing Hi--a few days back or so--I think last week, Jeanne, you were talking about delayed gastric emptying ( I think that is what you said) and coughing---I am wondering if you can tell me a bit more about this. Rose is back to coughing a lot again after about a week of hardly any coughing when we changed her feeding volume, and started Robinul, and I am just trying to find a reason why she has more saliva and mucous production again. She does not have a fever--I don't believe she is sick. I am worried and have a very stressed out feeling. I feel like there must be something I could have done to prevent this, yet I believe I am doing all that I can for her..........this is so hard sometimes. I thank you and anyone else for any information. Beckett---Rose's mom (5 1/2 mos.)_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2001 Report Share Posted March 31, 2001 H --As a matter of fact she does have choanal atresia and her left nasal passage is pretty much blocked, her right is open but has some stenosis. She also has a small hole in her palate which is not helping either. We are trying to get a date for surgery, but she keeps getting pneumonia. Yesterday she had a fever--we think she probably has pneumonia again.......this time we gave her a shot of some pretty heavy duty antibiotic at the dr. office and put her on steroids, also increased her breathing treatments to 2-4 hours apart. Today she is MUCH better. My goal is to keep her out of the hospital, and to maybe have surgery on April 9. Then off to Cleveland for e-stim. Thank you for the support. Beckett Mom to Baby Rose-5.75 mos. > >Reply-To: CHARGE >To: <CHARGE > >Subject: Re: coughing >Date: Fri, 30 Mar 2001 19:16:01 -0400 > >, >Did Rose have choanal atresia or stenosis? Things may be blocking back >over (scar tissue, etc) and that can be a reason for more " backed up >coughiness " going on. Just a thought. >Hope you get some answers soon, there's nothing worse than seeing them that >way. >Hugs, > >Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to Graeme >New Brunswick, Canada >Visit the " Weir homepage " at: >http://www.geocities.com/SunsetStrip/Palms/5716 >ICQ #1426476 > Re: coughing > > > Hi--a few days back or so--I think last week, Jeanne, you were talking >about > delayed gastric emptying ( I think that is what you said) and >coughing---I > am wondering if you can tell me a bit more about this. Rose is back to > coughing a lot again after about a week of hardly any coughing when we > changed her feeding volume, and started Robinul, and I am just trying to > find a reason why she has more saliva and mucous production again. She >does > not have a fever--I don't believe she is sick. I am worried and have a >very > stressed out feeling. I feel like there must be something I could have >done > to prevent this, yet I believe I am doing all that I can for > her..........this is so hard sometimes. I thank you and anyone else for >any > information. > > Beckett---Rose's mom (5 1/2 mos.) > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2001 Report Share Posted March 31, 2001 , Isn't it awful when you get an O.R date and they get sick? It's so frustrating because they NEED the surgery to STOP getting sick. I will be sending good thoughts for the April 9th O.R date. I'd say that's most likely the cause of her coughing though. We've been through this for 3 years now and we always know it's time for Kennedy to go in for another laser blast to open up her nose when she gets more secretions coming out the nose and more cough-"ier". Let us know how things go. Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: coughing>>> Hi--a few days back or so--I think last week, Jeanne, you were talking >about> delayed gastric emptying ( I think that is what you said) and >coughing---I> am wondering if you can tell me a bit more about this. Rose is back to> coughing a lot again after about a week of hardly any coughing when we> changed her feeding volume, and started Robinul, and I am just trying to> find a reason why she has more saliva and mucous production again. She >does> not have a fever--I don't believe she is sick. I am worried and have a >very> stressed out feeling. I feel like there must be something I could have >done> to prevent this, yet I believe I am doing all that I can for> her..........this is so hard sometimes. I thank you and anyone else for >any> information.>> Beckett---Rose's mom (5 1/2 mos.)> _________________________________________________________________> Get your FREE download of MSN Explorer at http://explorer.msn.com>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 , Rose sounds so much like Aari at that age.. constantly on antibiotics, steroids and constant pneumonias. He, too had a cleft palate and atresia (oh boy do I remember those q2h neb treatments). Another thing that might be worth looking into was that Aari also had bronchial stenosis that was the main reason for all the pneumonias.... it took nothing for him to get pneumonia because his largest main bronchial tube was oly 30% of normal. Casey, mom to Dawn 22 HH, Ken 11 ADHD, and 9 CHARGE AIM ZeeCasey, ICQ# 728514 http://www.geocities.com/Heartland/1220 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 I hate that all of us have this coughing problem. I knew it was part of the disease but I wasn't aware that it effected all of us in much the same manner. I know that I am so exhausted from the coughing that I am not good for much of anything else these days. This is one monster that I would not wish on my worst enemy and I have no idea who that would be. I pray that things will get easier for us this year and I will keep thanking God for the support of this board. Hugs and Prayers! Barbara R IPF 1/2003 I seem to cough all the time and I can no longer eat regular food. I have to eat soups that I can drink in sips or eat in nibbles, if I try to eat anything else I cough so bad that it just isn't worth the hassle to eat at all. I can't even to go out to eat any more because of it. I cough 24/7 now and I am so tired from it. I can't sleep for coughing and nothing I do seems to help. I can't take cough medication with codeine because I am allergic to codeine and all of the OTC medications I have tried do not work. Please help me if you have any ideas.> > > > > > Another problem I have is my feet. The bottom of my feet feel like they are on fire at times and I don't know what to do about it. I don't know where to turn for answers since the doctors look at me like I just landed from Mars or some where like that. I have been to the Dermatologist and he has no answers either. This disease is driving me nuts. > > > > > > If anyone else has these problems please reply.> > > > > > Thanks to all.> > > > > > Hugs and Prayers!> > > > > > Barbara R IPF 1/2003> > > > > > > > > > > > > > > > > > Joy > > > (IPF 3/06)> > > Today is a gift for each> > > of us. Enjoy it.> > >> >> > > > > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 i too cough cough cough and sometimes to the point that i gag and throw up. mine is also a dry cough, but most times a very um how to explain.....it's like my whole chest vibrates when i cough and is sometimes painful, worse at night than in the daytime. i have found nothing that relieves this. EG 10-05 I seem to cough all the time and I can no > longer eat regular food. I have to eat soups that I can drink in sips or > eat in nibbles, if I try to eat anything else I cough so bad that it > just isn't worth the hassle to eat at all. I can't even to go out to eat > any more because of it. I cough 24/7 now and I am so tired from it. I > can't sleep for coughing and nothing I do seems to help. I can't take > cough medication with codeine because I am allergic to codeine and all > of the OTC medications I have tried do not work. Please help me if you > have any ideas. > > > > > > > > Another problem I have is my feet. The bottom of my feet feel like > they are on fire at times and I don't know what to do about it. I don't > know where to turn for answers since the doctors look at me like I just > landed from Mars or some where like that. I have been to the > Dermatologist and he has no answers either. This disease is driving me > nuts. > > > > > > > > If anyone else has these problems please reply. > > > > > > > > Thanks to all. > > > > > > > > Hugs and Prayers! > > > > > > > > Barbara R IPF 1/2003 > > > > > > > > > > > > > > > > > > > > > > > > Joy > > > > (IPF 3/06) > > > > Today is a gift for each > > > > of us. Enjoy it. > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 me on valium????? you all think i am goofy and crazy now, you sure don't want that added to me. LOL nah actually i can not take valium, or morphine, or demarol, or dorvasette, or darvon or even vicodin without puking my guts up and hyperventilating. even when i was having really bad migraines with the actimmune shots, the strongest thing i could take without getting sick was fioricet and tramadol......they did little for the pain and nothing for the cough. they say hydracodone is good........well guess what??? hydracodone is liquid vicodin! hello????? if i can't take the pill what makes them think i could take the liquid. i however did not know what it was til after the first dose where it felt like someone took a 100 watt lightbulb and turned it down to 10 watts and then puked for next 6 hours off of 1/2 teaspoon! and the dr's think we're the stupid ones lol it said right in my chart " ALLERGIES " VICODIN! duh! it isn't so much an allergy as a sensitivity........but they didn't know where else to put the info in my chart. to be put to sleep as you have to be for the biopsy, i have to be given ketamine. that's an inhalant. then they gave me um i don't know how to spell it.....latadol? litadol? (something like that) it is supposed to be equivalent to heroine! guess what! that doesn't work either!(at least not for me) good thing i'm no drug addict! LOL EG 10-05 I seem to cough all the time and I can no > longer eat regular food. I have to eat soups that I can drink in sips or > eat in nibbles, if I try to eat anything else I cough so bad that it > just isn't worth the hassle to eat at all. I can't even to go out to eat > any more because of it. I cough 24/7 now and I am so tired from it. I > can't sleep for coughing and nothing I do seems to help. I can't take > cough medication with codeine because I am allergic to codeine and all > of the OTC medications I have tried do not work. Please help me if you > have any ideas. > > > > > > > > Another problem I have is my feet. The bottom of my feet feel like > they are on fire at times and I don't know what to do about it. I don't > know where to turn for answers since the doctors look at me like I just > landed from Mars or some where like that. I have been to the > Dermatologist and he has no answers either. This disease is driving me > nuts. > > > > > > > > If anyone else has these problems please reply. > > > > > > > > Thanks to all. > > > > > > > > Hugs and Prayers! > > > > > > > > Barbara R IPF 1/2003 > > > > > > > > > > > > > > > > > > > > > > > > Joy > > > > (IPF 3/06) > > > > Today is a gift for each > > > > of us. Enjoy it. > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2007 Report Share Posted January 7, 2007 from Sher...I've been reading the posts about the coughing some of you do. I don't have that problem but gosh, it must be just awful to cough like that. When I was first diagnosed I coughed and spit up stuff but the NAC cleared it up. You and those who cough are in my prayers especially. Love, Sher ipf 5-06 "Don't worry about tomorrow, God is already there" Re: Coughing i too cough cough cough and sometimes to the point that i gag and throw up. mine is also a dry cough, but most times a very um how to explain.....it's like my whole chest vibrates when i cough and is sometimes painful, worse at night than in the daytime. i have found nothing that relieves this. EG 10-05 I seem to cough all the time and I can no> longer eat regular food. I have to eat soups that I can drink in sips or> eat in nibbles, if I try to eat anything else I cough so bad that it> just isn't worth the hassle to eat at all. I can't even to go out to eat> any more because of it. I cough 24/7 now and I am so tired from it. I> can't sleep for coughing and nothing I do seems to help. I can't take> cough medication with codeine because I am allergic to codeine and all> of the OTC medications I have tried do not work. Please help me if you> have any ideas.> > > >> > > > Another problem I have is my feet. The bottom of my feet feel like> they are on fire at times and I don't know what to do about it. I don't> know where to turn for answers since the doctors look at me like I just> landed from Mars or some where like that. I have been to the> Dermatologist and he has no answers either. This disease is driving me> nuts.> > > >> > > > If anyone else has these problems please reply.> > > >> > > > Thanks to all.> > > >> > > > Hugs and Prayers!> > > >> > > > Barbara R IPF 1/2003> > > >> > > >> > > >> > > >> > > >> > > > Joy> > > > (IPF 3/06)> > > > Today is a gift for each> > > > of us. Enjoy it.> > > >> > >> >> >> >> >> >> > __________________________________________________> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2007 Report Share Posted January 7, 2007 Hi Bill, Good of you to post. I too do not have a cough. I really don't know why but I am Thankful. I have never heard of Qdall. I know some will benefit from the info. Love and Prayers, Peggy 9/04 ipf Florida I too had a severe cough. I would also cough until I would throw up. My Doctor prescribed QDALL. I am now virtually cough free. Hopefully this will help some. Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2007 Report Share Posted January 7, 2007 Hey Bev, Barbara R here and I am now trying the tea thing and I drink all of my drinks at room temp and it helps a lot. I have coughed so much the past few days that I have pulled a muscle in my chest and now it really does hurt to cough. If it isn't one thing with this monster it is another. I hope that your husband has a good week and that you are able to get some rest. My poor husband is about as worn out as I am from all the coughing and our poor little Shih Tzu is worn out too. He can't sleep for my tossing and turning and my husband getting up and down to make sure that I can reach what I need. I don't know what us sick folks would do without the angles that take care of us when we need it. Hugs and Prayers! Barbara R IPF 1/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2007 Report Share Posted January 7, 2007 Bill, I looked up the QDall. It has an antihistimine and a decongestant. I can't take decongestant because of hypertension. I am glad this works for you. It takes so much energy to cough. Check in with us again. Hugs, Joyce PF 1997 Bronchiectasis Indiana >> Hi Bill, Good of you to post. I too do not have a cough. I really don't know> why but I am Thankful. I have never heard of Qdall. I know some will> benefit from the info.> Love and Prayers, Peggy 9/04 ipf Florida> > I too had a severe cough. I would also cough until I would throw up.> My Doctor prescribed QDALL. I am now virtually cough free. Hopefully> this will help some. Bill> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2007 Report Share Posted January 7, 2007 TO all of you w/cough-I replied to Barb before & my husband,Bob,has pf.He also coughs a lot and like someone said its like he's coughing up a lung.He never vomits but passes out,because he can't take enough 02 in while coughing.He uses cannula and mask as supplemental.If I can get his mask on him with additional 02 he comes around faster.He also uses hot tea made w/2 bags per cup(resp therapist gave him in hosp.when he couldnt stop coughing.He has a cup by his bed at night,it also helps even after it cools.He also takes Histussin cough syrup every 4-6 hrs,which has been a life saver.It is a narcotic,but who cares if he gets hooked on it , at least it helps cough.I don't leave him alone because of passing out.also he is so weak that anything wipes him out.He uses walker sometimes and I use w/c for him if he real,real weak. He saw a new pulmonoligist last wed.to see if he had anyother ideas(private m.d. consult).We thought this started 11/04 but he saw changes in chest films as early as 1997.He is doing more tests.He reduced his prednisone to 20mg daily.We were alt.20 & 40,Dr said that prednisone isn't drug of choice as it used to be. I hope I haven't bored anyone w/my rambling,but read all on board. God bless all. Bev from so. ill _________________________________________________________________ Type your favorite song. Get a customized station. Try MSN Radio powered by Pandora. http://radio.msn.com/?icid=T002MSN03A07001 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.