Guest guest Posted September 13, 2001 Report Share Posted September 13, 2001 Did everyone order their medic alert bracelet this week????? Come on, it's just a phone call away or just get on line.. phone # 1- or www.medicalert.org oops!!!!! lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2001 Report Share Posted September 13, 2001 Did everyone order their medic alert bracelet this week????? Come on, it's just a phone call away or just get on line.. phone # 1- or www.medicalert.org oops!!!!! lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2001 Report Share Posted September 13, 2001 , Thinking positive thoughts that is okay. Praying for you too, it's so hard when our kids are sick. Sending lots of love.... Sandy ----- Original Message ----- Good afternoon everyone... Just checking in to see if everyone is okay... goes today for her ultra sound and I would like to ask that you keep her in your thoughts and prayes in hopes that nothing too serious is wrong. Thank you all in advance... Her appt isn't until 7pm and I'm sure we won't know anything for a few days. I will keep you posted as to what we hear. I have been fighting off a rib flare for 3 days and today gave in and upped my pred... Hoping it is just stress. LOL will try decreasing it soon.. I was a good girl today and made all of my dr appts that I have been putting off... Made an appt with my PCP, ENT, Gyn, Foot dr and the dentist.... Now I should be all caught up for the year... For all us women...... PLEASE be sure to get your yearly exams done and a mammo. IT IS soooo important... Please don't make me start nagging on this too. LOL Did everyone order their medic alert bracelet this week????? Come on, it's just a phone call away or just get on line.. phone # 1- or www.medicalert.orgThink of the disaster this week.... You really do need a bracelet..... You never know when you will be by yourself and no one will be there to give your vital information... Now stop thinking and just do it...... Please.... for your family. Okay, I'll hush for now.... Know I'm thinking of each and every one of you today and hope you are all doing well.. lots of hugsDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2001 Report Share Posted September 13, 2001 , Thinking positive thoughts that is okay. Praying for you too, it's so hard when our kids are sick. Sending lots of love.... Sandy ----- Original Message ----- Good afternoon everyone... Just checking in to see if everyone is okay... goes today for her ultra sound and I would like to ask that you keep her in your thoughts and prayes in hopes that nothing too serious is wrong. Thank you all in advance... Her appt isn't until 7pm and I'm sure we won't know anything for a few days. I will keep you posted as to what we hear. I have been fighting off a rib flare for 3 days and today gave in and upped my pred... Hoping it is just stress. LOL will try decreasing it soon.. I was a good girl today and made all of my dr appts that I have been putting off... Made an appt with my PCP, ENT, Gyn, Foot dr and the dentist.... Now I should be all caught up for the year... For all us women...... PLEASE be sure to get your yearly exams done and a mammo. IT IS soooo important... Please don't make me start nagging on this too. LOL Did everyone order their medic alert bracelet this week????? Come on, it's just a phone call away or just get on line.. phone # 1- or www.medicalert.orgThink of the disaster this week.... You really do need a bracelet..... You never know when you will be by yourself and no one will be there to give your vital information... Now stop thinking and just do it...... Please.... for your family. Okay, I'll hush for now.... Know I'm thinking of each and every one of you today and hope you are all doing well.. lots of hugsDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 Hi, My daughter is four with CF. For a CF clinic near you go to www.cff.org It is the CF foundation and they can help you find a doc in your area. Check your nearest children's hospital, too. Keep us updated, Good Luck ANdrea Hello All I'm new to the group. Gdattig5 told me about the group. My son, age 7, has been tested for CF and has been found to be a carrier of G551D. No other CF mutations were found with the Genzyme test. His two sweat tests were both high indeterminates. He has had two surgeries in the past year for nasal polyps. I think he has been on antibiotics more than off this past year. I am waiting for a refferal to a CF doctor because there are some symptoms that need to be addressed and I don't think my general pediatrician will be able to handle them. Do any of you live around the Boston area and if so which doctor do you use? Also, do any of your children experience reoccurring nasal polyps? Even after the surgery, my son fills up with gunk so badly he needs to go to the ENT every 2 weeks for cleaning. Anyone else have a " later in life diagnosis " ? Thank you for letting me join. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 Welcome to the list. I hope you find out whats wrong with your son. It does sound a lot like CF. My daughter is 19 and has only one identified mutation. But she had 2 positive sweat tests and has been treated for CF all her life, as they just came out with the genetic test after she had already been diagnosed for years. Shes had the Ambry test(tests for 1000+) and her doc was talking about having her gene sequenced. I don't really care as long as they continue to treat her which they are. oh btw, my name is and my daughter is . what's your name, where are you from? We are from Placentia CA which is in Orange County. love, M Hello All > I'm new to the group. Gdattig5 told me about the group. My son, > age 7, has been tested for CF and has been found to be a carrier of > G551D. No other CF mutations were found with the Genzyme test. His > two sweat tests were both high indeterminates. He has had two > surgeries in the past year for nasal polyps. I think he has been on > antibiotics more than off this past year. I am waiting for a > refferal to a CF doctor because there are some symptoms that need to > be addressed and I don't think my general pediatrician will be able > to handle them. > > Do any of you live around the Boston area and if so which doctor > do you use? Also, do any of your children experience reoccurring > nasal polyps? Even after the surgery, my son fills up with gunk so > badly he needs to go to the ENT every 2 weeks for cleaning. Anyone > else have a " later in life diagnosis " ? > > Thank you for letting me join. > > > > > ------------------------------------------- > 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. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 In a message dated 4/1/2003 10:06:50 PM Eastern Standard Time, Najnest@... writes: > Anyone > else have a " later in life diagnosis " ? > Yes my daughter was 6, son 4 and 7 mos pregnnt when we found out. I am thankful that they are finally being treated properly. Welcome Rosemary from New York with 3 children with CF - they are 12.5, 10, 6...... I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you ready for this - TOBI after their medication!!! At least it wasn't albuterol or Coly... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 Hi, since your son is 7 already he should be able to sit quietly for half an hour, right? Then the nasal potential difference (NPD) measurement is another available test to find out whether he has CF or not. What kind of bacteria does he have in his airways? Detection of staphylococcus aureus, haemophilus influenza or pseudomonas aeruginosa together with the countinuing reoccurence of the polyps are unfortunately strong hints that he indeed might have CF. Peace Torsten, dad of Fiona 6wcf e-mail: torstenkrafft@... Hello All > I'm new to the group. Gdattig5 told me about the group. My son, > age 7, has been tested for CF and has been found to be a carrier of > G551D. No other CF mutations were found with the Genzyme test. His > two sweat tests were both high indeterminates. He has had two > surgeries in the past year for nasal polyps. I think he has been on > antibiotics more than off this past year. I am waiting for a > refferal to a CF doctor because there are some symptoms that need to > be addressed and I don't think my general pediatrician will be able > to handle them. > > Do any of you live around the Boston area and if so which doctor > do you use? Also, do any of your children experience reoccurring > nasal polyps? Even after the surgery, my son fills up with gunk so > badly he needs to go to the ENT every 2 weeks for cleaning. Anyone > else have a " later in life diagnosis " ? > > Thank you for letting me join. > > > > > ------------------------------------------- > 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. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 Detection of staphylococcus aureus, > haemophilus influenza or pseudomonas aeruginosa together with the > countinuing reoccurence of the polyps are unfortunately strong hints that he > indeed might have CF. > I am not sure because it has been several months since he was cultured. I will ask the ENT next Tuesday when he has his weekly nasal cleaning. I definitely remember pseudomonas being one though because of the name. As far as sitting for a half and hour now that's debatable. LOL! He may be the first child diagnosed with CF and ADHD LOL! Anyone else's child suffering from reoccuring polyps? It has only been 2 days since he was vacummed out and already he is developing bad breath and sounding stuffy. I don't think we have gone more than two weeks without an doctor's appointment of some sort in 6 months. He currently is on Augmentin for strep and sinusitis. Very furstrating because he is barely healed from his last surgery. jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 Hi Jan, now, if it's really pseudomonas aeruginosa (there are other members of the pseudomonas family too), then I would not longer wait for a referral to a CF doctor but take things in my own hands. Pseudomonas aeruginosa is a serious risk and needs to be treated as soon as possible. And Augmentin doesn't help here. Your doc sounds to be quite laid back if he doesn't do anything against the pseudomonas (regardless whether your son has CF or not). Here are some adresses from your area to turn to. Peace Torsten Children's Hospital -- CF Center Boston, MA Appointments: Center Director: Ellen Wohl, M.D. Massachusetts General Hospital -- CF Center Boston, MA Appointments: Center Director: Henry L. Dorkin, M.D. New England Medical Center Boston, MA Appointments: Center Director: , M.D. > Detection of staphylococcus aureus, > > haemophilus influenza or pseudomonas aeruginosa together with the > > countinuing reoccurence of the polyps are unfortunately strong > hints that he > > indeed might have CF. > > > I am not sure because it has been several months since he was > cultured. I will ask the ENT next Tuesday when he has his weekly > nasal cleaning. I definitely remember pseudomonas being one though > because of the name. > > As far as sitting for a half and hour now that's debatable. LOL! He > may be the first child diagnosed with CF and ADHD LOL! > > Anyone else's child suffering from reoccuring polyps? It has only > been 2 days since he was vacummed out and already he is developing > bad breath and sounding stuffy. I don't think we have gone more than > two weeks without an doctor's appointment of some sort in 6 months. > He currently is on Augmentin for strep and sinusitis. Very > furstrating because he is barely healed from his last surgery. > > jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 Hi Jou, welcome to the list! Now we have four people from Argentina and two or three from Brazil on the list. Hope your kids are doing well (who is the one with CF?) This list is dominated by women, so we dads have to cling together :- )) Peace Torsten, dad of Fiona 6wcf and a boy wocf on the way > Hello! My name is Jou and I live in Argentina. I have 2 beautiful > children one of them with cf. The oldest is Camila and she is 5. My > youngest is 3. His name is Gaspar. I am looking forward to getting to > know you guys and also looking forward to the xtra support. Bye for now > and talk to you soon!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 WELCOME to a super list with lots of friendly folks. You will get much support & helpful info from most, as they have " BEEN THERE,--THEN DONE THAT " ...Wrote often & jump in with your info as well. LOVE & HUGS, grandmomBEV Orlando, FL Hello all Hello! My name is Jou and I live in Argentina. I have 2 beautiful children one of them with cf. The oldest is Camila and she is 5. My youngest is 3. His name is Gaspar. I am looking forward to getting to know you guys and also looking forward to the xtra support. Bye for now and talk to you soon!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 Jan, Did he culture pseudomonas in his sinuses or his in his lungs? Your son can have PA in his sinuses, if so, then augmentin won't help and the drainage will get into his lungs and infect his lungs. Are you doing nasal lavage as part of post op treatment? It's important to do this, but if PA is presnet it also forces it into lungs and it's easy to infect lavage equipment. My son has had 2 sinus polyps sugeries. His first was at 8 years and the second was 13 years. Within weeks after second surgery, polyps grew back but as they were not big or blocking anything, I opted not to repeat surgery at that time. He's 23 1/2 years old now and they rarely bother him... only when allergies flare up. I noticed long ago that his polyps would grow whenever he went through a growth spurt. And nope, your son wouldn't be the first with CF and ADHA. Just because you have CF doesn't mean you're immune to other things, doggone it. Kim Mom of (23 1/2 w/ CF and asthma) and (20 w/ asthma no CF) > Detection of staphylococcus aureus, > > haemophilus influenza or pseudomonas aeruginosa together with the > > countinuing reoccurence of the polyps are unfortunately strong > hints that he > > indeed might have CF. > > > I am not sure because it has been several months since he was > cultured. I will ask the ENT next Tuesday when he has his weekly > nasal cleaning. I definitely remember pseudomonas being one though > because of the name. > > As far as sitting for a half and hour now that's debatable. LOL! He > may be the first child diagnosed with CF and ADHD LOL! > > Anyone else's child suffering from reoccuring polyps? It has only > been 2 days since he was vacummed out and already he is developing > bad breath and sounding stuffy. I don't think we have gone more than > two weeks without an doctor's appointment of some sort in 6 months. > He currently is on Augmentin for strep and sinusitis. Very > furstrating because he is barely healed from his last surgery. > > jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 > Jan, > > Did he culture pseudomonas in his sinuses or his in his lungs? > > Your son can have PA in his sinuses, if so, then augmentin won't help > and the drainage will get into his lungs and infect his lungs. > > Are you doing nasal lavage as part of post op treatment? The culture was of his nasal drainage. He has had nothing done on his lungs. What is involved with nasal lavage. jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 Dear Jan, I am the mother of a 9 year old girl with CF. a had always had a runny nose from the moment she was born. Because she does not have pancreas involment she was misdiagnosed until her lungs got infected at age 8. I am not an expert on CF, I am learning a lot from this list but I can tell you that a has benefited tremendously from pulmozyme and TOBY. She does pulmozyme every day with a mask and TOBY every other months, during high season (winter months)again with a mask. This year has been the first year that she did not have her nose full of thick mucus!! Also, a only shows the one delta 508 gene,the other one has never been identify, but her two sweat test were positive. I read that you have not been to a CF center yet, I do not know what part of the world you are in but ask his pediatritian to get some information about this 2 medicines and guide you on how to nebulize him, it will make the difference in his quality of life. I tell you a was always in a bad mood, and since her nose has been under control, boy she has turned around. It makes sense when your nose is all stuffy, you can't smell, you can't taste, your head feels like it weighs a 1000 lbs. That may be why your son is so hyper he does not feel good and he does not know how to express it. Well, sorry I took so long, but if it helps, it sure was worth it, Palazola, mom of a 9 pwcf, Venanzio 6, no cf, Pepe 3, nocf > Detection of staphylococcus aureus, > > haemophilus influenza or pseudomonas aeruginosa together with the > > countinuing reoccurence of the polyps are unfortunately strong > hints that he > > indeed might have CF. > > > I am not sure because it has been several months since he was > cultured. I will ask the ENT next Tuesday when he has his weekly > nasal cleaning. I definitely remember pseudomonas being one though > because of the name. > > As far as sitting for a half and hour now that's debatable. LOL! He > may be the first child diagnosed with CF and ADHD LOL! > > Anyone else's child suffering from reoccuring polyps? It has only > been 2 days since he was vacummed out and already he is developing > bad breath and sounding stuffy. I don't think we have gone more than > two weeks without an doctor's appointment of some sort in 6 months. > He currently is on Augmentin for strep and sinusitis. Very > furstrating because he is barely healed from his last surgery. > > jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 Hello , Welcome to our list. Which of your children is the one with cf? When was he or she diagnosed? I'm sure you'll find many friends on this list, and plenty of support, information and cause for hope. Best of luck to you and your lovely family. C Mommy to Mick and Alli, 3 yo twins wcf --- Valderrama wrote: > Hello! My name is Jou and I live in Argentina. I > have 2 beautiful > children one of them with cf. The oldest is Camila > and she is 5. My > youngest is 3. His name is Gaspar. I am looking > forward to getting to > know you guys and also looking forward to the xtra > support. Bye for now > and talk to you soon!!! > > > [Non-text portions of this message have been > removed] > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 Hi José , My name is , and I'm also from Argentina. My 2 yo kid, AgustÃn, suffers from CF. I bet you'll find lots of useful info and meet great, very helpful people in this wonderful list. I used to participate more actively on cfparents, but I'm a lurker most of the time now ... Having a little one in his terrible two's, plus a full time job, make it difficult to get free time to post. But I do read from you guys every three days or so... I hope that you and family are doing fine now! BTW, which of your children is the one wcf? We look forward to hearing from you again soon. I send a big hug to you and to all my listmates at cfparents, Mom of Agustin, 2 yo wcf Buenos Aires, Argentina > Hello! My name is Jou and I live in Argentina. I have 2 beautiful > children one of them with cf. The oldest is Camila and she is 5. My > youngest is 3. His name is Gaspar. I am looking forward to getting to > know you guys and also looking forward to the xtra support. Bye for now > and talk to you soon!!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Mark, I hope you are feeling better now that you are back from the ER. Kimber -- Kimber Vallejo, CA hominid2@... Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Thanks Kimber and Gail. I am starting to feel myself again. If I can help you with anything, please let me know I hope this finds you and yours well Mark Re: Hello all > Mark, > I hope you are feeling better now that you are back from the ER. > Kimber > > -- > Kimber > Vallejo, CA > hominid2@... > Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2003 Report Share Posted October 25, 2003 Mark, it seems to be the month for hospital admissions right now doesn't it. First , then and now you (and probably many others who haven't contacted us to let us know they were admitted). I hope you don't have to stay in there very long. Keep us updated when you can. Take it easy. Kimber -- Kimber Vallejo, CA hominid2@... Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi ,it's , 's mom I just wanted to say Happy New Year to All and we are doing so far so good, alot of Dr. Appointments going on right now trying to get things going!! He is in Specail Ed pre-school and is doing great! I will keep in touch as soon as things slow down!!!! Hugs to all (prevacid)4 1/2 26lbs 33 inches 12 to 18 month clothes size 6!! Shoe!!!! Quote Link to comment Share on other sites More sharing options...
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