Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 hi jonell.........welcome to the list........my andrew is 14 (he was diagnosed at 6 months)......he had extra-stinky diapers, vomitted his feedings, was still at birth weight at 6 months, and had a persistant cough......(i am his stepmom, and wasn't there for that)..........he has done really beautifully.........has only cultured one bacterium so far, staph aureus, but it is gone (for now)........cf has never stopped him..........when a doctor, other than his cf docs, asks him if he's healthy, he says yes........doesn't even mention his cf.........he is skinny (but so are his siblings!)........and he has tremendous energy (more than me, that's for sure!)..........we have great hopes for him...........and much faith in research.........please lean on us, here, deary..........we'll help you........love, lisa........ps.........what is your darling baby son's name? >hi everyone, my name is jonell and my baby is 12 days old, the drs believe that >he has cf and are doing a sweat test on him tomorrow. i was wondering if anyones >child was diagnosed that early or if anyone ever got a false negative......and >what are the symptoms that made you or the drs believe it was cf.......how are >your kids today. i really need some help through this. this is my 5th child and >i never expected this. please help me. jonell > >********************** >> This is a secular list. >> *********************** >> >> PLEASE do not post religious emails to the list. >> >> -------------------------------------------------- >> >> The opinions and information exchanged on this list should >> IN NO WAY >> be construed as medical advice. >> >> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. >> >> -------------------------------------------------- >> >> Our webpage is at http://www.eohio.net/malbright/cfparents.htm >> >> _________________________________________________ >> Post message: cfparentsegroups >> Subscribe: cfparents-subscribeegroups >> Unsubscribe: cfparents-unsubscribeegroups >> List owner: cfparents-owneregroups >> _________________________________________________ >> >> WE HAVE A CHAT PAGE!!! >> /chat/cfparents >> _________________________________________________ > > >*********************** >This is a secular list. >*********************** > > >PLEASE do not post religious emails to the list. > > >-------------------------------------------------- > > >The opinions and information exchanged on this list should >IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > >-------------------------------------------------- > > >Our webpage is at http://www.eohio.net/malbright/cfparents.htm > >_________________________________________________ >Post message: cfparentsegroups >Subscribe: cfparents-subscribeegroups >Unsubscribe: cfparents-unsubscribeegroups >List owner: cfparents-owneregroups >_________________________________________________ > >WE HAVE A CHAT PAGE!!! >/chat/cfparents >_________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 hi everyone, my name is jonell and my baby is 12 days old, the drs believe that he has cf and are doing a sweat test on him tomorrow. i was wondering if anyones child was diagnosed that early or if anyone ever got a false negative......and what are the symptoms that made you or the drs believe it was cf.......how are your kids today. i really need some help through this. this is my 5th child and i never expected this. please help me. jonell wrote: > > Hi Caroline, > > Welcome back. I'm so glad to see you on the list again! How's > doing? Meagan's doing great right now, and she loves kindergarten. She's > just finishing up a 28 day cycle of TOBI, and it really got her back in > shape, even her sinuses finally cleared up. > > Two other moms with children who have R117H have joined the list since you > were last here, Angi and Steph. We're getting quite a crowd of us together > for a " rare " mutation, aren't we, lol. This mutation's got to be way more > common than they used to think. I think it just used to go undiagnosed > because of all the negative sweat tests that go along with it. > > bye, > > > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 my dear..........i will do everything i can to help you..............please feel free to email me directly at sonnen5@..., if i can possibly be of any assistance to you...........i know you are terrified............how old are your other children? do you have a good support system? philip is a beautiful name...........and you love him with all your heart.............and you will find the strength to get through this...........HE WILL MAKE IT THROUGH THIS..........CF RESEARCH AND TREATMENT HAS COME SO, SO FAR..........EVEN SINCE MY ANDREW WAS BORN, 14 YEARS AGO..............i am 40............when little cf babies were born when i was, most of them died before age 5..............BUT LIFE EXPECTANCY NOW IS IN THE 30s...........you have a right to be afraid............but, please, please don't give up...........i wouldn't trade andrew for any other child..........he's going to make it.........and so is philip..........yes, even though your other kids don't have cf, it is possible for him to have it..........if he has cf, that means that you and his father are both carriers of the disease..........and this means that every pregnancy has a one in four chance of making a baby with cf..........take some deep breaths, deary...........and email back..........love, lisa Re: Caroline > >lisa, his name is phillip. i wont be able to deal with it if he has cf. i dont >think i can make it through this. what if he doesnt make it through this..... >this is my 5th child and none of the other kids have cf so is it really possible >for him to have it......the other thing is if it comes back that he doesnt have >cf then what could be wrong with him. that is why im so sure that he has it. he >lost 3 ounces and doesnt eat very well, very much. stinky diapers when he does >have one, not too often. and the nurses say he has a funny breathing pattern. >also his intestinal track is very backed up with stool. sounds like cf doesnt >it.......please help me.......jonell > >> > >> >********************** >> >> This is a secular list. >> >> *********************** >> >> >> >> PLEASE do not post religious emails to the list. >> >> >> >> -------------------------------------------------- >> >> >> >> The opinions and information exchanged on this list should >> >> IN NO WAY >> >> be construed as medical advice. >> >> >> >> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR >> TREATMENTS. >> >> >> >> -------------------------------------------------- >> >> >> >> Our webpage is at http://www.eohio.net/malbright/cfparents.htm >> >> >> >> _________________________________________________ >> >> Post message: cfparentsegroups >> >> Subscribe: cfparents-subscribeegroups >> >> Unsubscribe: cfparents-unsubscribeegroups >> >> List owner: cfparents-owneregroups >> >> _________________________________________________ >> >> >> >> WE HAVE A CHAT PAGE!!! >> >> /chat/cfparents >> >> _________________________________________________ >> > >> > >> >*********************** >> >This is a secular list. >> >*********************** >> > >> > >> >PLEASE do not post religious emails to the list. >> > >> > >> >-------------------------------------------------- >> > >> > >> >The opinions and information exchanged on this list should >> >IN NO WAY >> >be construed as medical advice. >> > >> >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR >> TREATMENTS. >> > >> >-------------------------------------------------- >> > >> > >> >Our webpage is at http://www.eohio.net/malbright/cfparents.htm >> > >> >_________________________________________________ >> >Post message: cfparentsegroups >> >Subscribe: cfparents-subscribeegroups >> >Unsubscribe: cfparents-unsubscribeegroups >> >List owner: cfparents-owneregroups >> >_________________________________________________ >> > >> >WE HAVE A CHAT PAGE!!! >> >/chat/cfparents >> >_________________________________________________ >> > >> > >> > >> >> *********************** >> This is a secular list. >> *********************** >> >> PLEASE do not post religious emails to the list. >> >> -------------------------------------------------- >> >> The opinions and information exchanged on this list should >> IN NO WAY >> be construed as medical advice. >> >> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. >> >> -------------------------------------------------- >> >> Our webpage is at http://www.eohio.net/malbright/cfparents.htm >> >> _________________________________________________ >> Post message: cfparentsegroups >> Subscribe: cfparents-subscribeegroups >> Unsubscribe: cfparents-unsubscribeegroups >> List owner: cfparents-owneregroups >> _________________________________________________ >> >> WE HAVE A CHAT PAGE!!! >> /chat/cfparents >> _________________________________________________ > > >*********************** >This is a secular list. >*********************** > > >PLEASE do not post religious emails to the list. > > >-------------------------------------------------- > > >The opinions and information exchanged on this list should >IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > >-------------------------------------------------- > > >Our webpage is at http://www.eohio.net/malbright/cfparents.htm > >_________________________________________________ >Post message: cfparentsegroups >Subscribe: cfparents-subscribeegroups >Unsubscribe: cfparents-unsubscribeegroups >List owner: cfparents-owneregroups >_________________________________________________ > >WE HAVE A CHAT PAGE!!! >/chat/cfparents >_________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 lisa, his name is phillip. i wont be able to deal with it if he has cf. i dont think i can make it through this. what if he doesnt make it through this..... this is my 5th child and none of the other kids have cf so is it really possible for him to have it......the other thing is if it comes back that he doesnt have cf then what could be wrong with him. that is why im so sure that he has it. he lost 3 ounces and doesnt eat very well, very much. stinky diapers when he does have one, not too often. and the nurses say he has a funny breathing pattern. also his intestinal track is very backed up with stool. sounds like cf doesnt it.......please help me.......jonell lforman wrote: > > hi jonell.........welcome to the list........my andrew is 14 (he was > diagnosed at 6 months)......he had extra-stinky diapers, vomitted his > feedings, was still at birth weight at 6 months, and had a persistant > cough......(i am his stepmom, and wasn't there for that)..........he has > done really beautifully.........has only cultured one bacterium so far, > staph aureus, but it is gone (for now)........cf has never stopped > him..........when a doctor, other than his cf docs, asks him if he's > healthy, he says yes........doesn't even mention his cf.........he is skinny > (but so are his siblings!)........and he has tremendous energy (more than > me, that's for sure!)..........we have great hopes for him...........and > much faith in research.........please lean on us, here, deary..........we'll > help you........love, lisa........ps.........what is your darling baby son's > name? > > >hi everyone, my name is jonell and my baby is 12 days old, the drs believe > that > >he has cf and are doing a sweat test on him tomorrow. i was wondering if > anyones > >child was diagnosed that early or if anyone ever got a false > negative......and > >what are the symptoms that made you or the drs believe it was cf.......how > are > >your kids today. i really need some help through this. this is my 5th child > and > >i never expected this. please help me. jonell > > > >********************** > >> This is a secular list. > >> *********************** > >> > >> PLEASE do not post religious emails to the list. > >> > >> -------------------------------------------------- > >> > >> The opinions and information exchanged on this list should > >> IN NO WAY > >> be construed as medical advice. > >> > >> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > >> > >> -------------------------------------------------- > >> > >> Our webpage is at http://www.eohio.net/malbright/cfparents.htm > >> > >> _________________________________________________ > >> Post message: cfparentsegroups > >> Subscribe: cfparents-subscribeegroups > >> Unsubscribe: cfparents-unsubscribeegroups > >> List owner: cfparents-owneregroups > >> _________________________________________________ > >> > >> WE HAVE A CHAT PAGE!!! > >> /chat/cfparents > >> _________________________________________________ > > > > > >*********************** > >This is a secular list. > >*********************** > > > > > >PLEASE do not post religious emails to the list. > > > > > >-------------------------------------------------- > > > > > >The opinions and information exchanged on this list should > >IN NO WAY > >be construed as medical advice. > > > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > > >-------------------------------------------------- > > > > > >Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > >_________________________________________________ > >Post message: cfparentsegroups > >Subscribe: cfparents-subscribeegroups > >Unsubscribe: cfparents-unsubscribeegroups > >List owner: cfparents-owneregroups > >_________________________________________________ > > > >WE HAVE A CHAT PAGE!!! > >/chat/cfparents > >_________________________________________________ > > > > > > > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 > hi everyone, my name is jonell and my baby is 12 days old, the drs believe that he has cf and are doing a sweat test on him tomorrow. i was wondering if anyones child was diagnosed that early or if anyone ever got a false negative......and what are the symptoms that made you or the drs believe it was cf.......how are your kids today. i really need some help through this. this is my 5th child and i never expected this. please help me. jonell Dear Jonell! Our son Matias had a first sweat test when he was about 2 weeks old. They used lamps to make him sweat, which was not very effective in his case. The results were not clear. The test was repeated a week later, when they used a chemical substance to make him sweat (can't remember its name). This time the results were unequivocal. We already thought he had CF because he had bowel surgery after birth for a meconium ileus (small intestine atrophy in his case). He's doing very well now, is very active and smiling. Apart from the extra care and worries, he's just like any other child, although a bit more forward. I hope everything will go for the best for you, your baby and your family. Let us know the results. Regards, Nele, mum of Matias, 2y WCF nele_iserentant@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Caroline, J'ai traduit votre message d'hier et j'ai reçu la réponse suivante de , ce que j'ai traduit de nouveau au Français. J'espère que ceci aide un peu. Shauna > Hello Caroline; La sensation de fatigue semble etre tres commun avec le PSC mais je ne crois pas que le sentiment " hyperactif a l'interieur " est commun avec le PSC ou le psoriasis. Puis-je poser queleques questions afin d'apprendre plus au sujet de la sensation hyperactive? Est-ce que c'est un peu comme la sensation on obtient si on boit de trop de cafe? Se sent-il comme si votre coeur court? Affecte-t-il votre respiration? Prenez-vous des medicaments (autre qu'Atarax)? J'espere que vous n'avez pas des objections a ces questions... svp repondez en prive si vous prefereriez > (rhodesdavid@...). > > Take care, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 hi , Merci shauna pour la traduction , je vois bien que le translate n etais pas tres bien faite avec le babel fish . En passant je trouve dommage qu on ne puisse pas intégré le translate de la page avec yahoo , ce qui me permettrait de lire d avantage de sujet . Si je mets le lien de traduction je me retrouve a l endroit de mon nom et mot de passe en francais mais du moment que je clic ok je me retrouve a nouveau en anglais . Va a cette adresse et marque traduction en francais et le lien support psc en question et tu comprendras ce que je veux dire ... a cause de yahoo je ne peux avoir acces . (http://babelfish.altavista.com/babelfish/tr) la sensation de hyperactive que je mentionne n est pas dans le sens comme pour avoir pris plusieurs cafés. Mon coeur bat normal et ma respiration est normal . Je ne saurais expliquer exactement sinon dire que si tu as deja souffert de grattage c est un genre de grattage sans grattage . C est comme si tu te grattais depuis 1heure et que tu es bien tanné ... a bout .. tu en peux plus. Ma médication atarax.. colestid (questran)...urso...salofalk....calcium...vitamine d Quote Link to comment Share on other sites More sharing options...
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