Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Wladimir, Where are you from? We are not using anything right now for an everyday treatment but they are talking to us about it. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 In a message dated 10/29/2001 9:47:50 AM Eastern Standard Time, kuzmanov_v@... writes: > Pulmosime (Dornaze Alfa). It is a mucus thinner - as you know. I have not seen any side effects - good or bad......the children don't mind since its a " short " inhalation treatment (10 minutes). Welcome to the group!!! Rosemary in NY - with 3 kids with CF ages 11, 8.11 and 5... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 WELCOME, your English is delightful. thank you for joining the list. These folks are all in one family with you in the WORLD CF FAMILY. You will be able to learn and teach at the same time. my granddaughter has CF She is 17 and doing EXTREMELY well. She does take the pulmozyme and uses the vest (vibrator percussion) -as you might do the " clapping or thumping to loosen the mucus...She also takes Pancrease at meals. BUT she is very tall 5'11 " and runs cross country & plays school team basketball.I look forward to your posts. LOVE & HUGS, grandmomBEV Beverley Donelson Orlando, Florida, USA. New Member Hi All My name is Wladimir. I am dad of Julija 13 wcf. I'm one of the new member. I would ask you about your oppinion relating treatment Pulmosime (Dornaze Alfa). What kind of other respiration's treatment use you every day. Thank you, Wladi P.s. Excuse me for my bad, poor English Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Welcome to the list. all three of our kids with CF are on pulmozyme and we think it helps. Your english is great, by the way. Where do you live? How is your daughter doing? Welcome Jen, mommy of 7, 3 with CF > Hi All > My name is Wladimir. I am dad of Julija 13 wcf. I'm one of the new > member. I would ask you about your oppinion relating treatment > Pulmosime (Dornaze Alfa). What kind of other respiration's treatment > use you every day. > Thank you, > Wladi > P.s. Excuse me for my bad, poor English Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Hi Wladimir, Welcome to the list. Our twins, and , get Atrovent mixed with Albuterol 4 times a day, in addition to the pulmozyme. gets pulmozyme once a day, and gets it twice a day. Both have BPD (bronchopulmonary dysplasia) as well as cf, due to their being born premature, and being on a respirator for several months. We also do hand cpt 4 times, and are waiting for them to grow big enough to start them on the vest. I hope Julija is doing well. C Mommy to Mick and Alli, 20 mo twins wcf New Member Hi All My name is Wladimir. I am dad of Julija 13 wcf. I'm one of the new member. I would ask you about your oppinion relating treatment Pulmosime (Dornaze Alfa). What kind of other respiration's treatment use you every day. Thank you, Wladi P.s. Excuse me for my bad, poor English Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Welcome Wladimir! Regarding Pulmozyme, my daughter has had great success with it. She inhales it using a mask that covers her nose and mouth, so it helps clear out her sinuses. Nothing else has helped the sinuses. Regarding the lungs, there were no noticeable symptoms before she started Pulmozyme, so I can't give a testimony there. Hope we can offer you much of the support you need, and never worry about your English (it is not bad anyway)! Hugs, Ann, Mommy of Joy w/cf @ 23 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 --- Ann ann-e@...> wrote: Welcome Wladimir! Regarding Pulmozyme, my daughter has had great success with it. She inhales it using a mask that covers her nose and mouth, so it helps clear out her sinuses. Nothing else has helped the sinuses. Regarding the lungs, there were no noticeable symptoms before she hi ann try not to worrie i have a girl and she is now 12 and she is in great health thank god so i hope everything goes well for you started Pulmozyme, so I can't give a testimony there. Hope we can offer you much of the support you need, and never worry about your English (it is not bad anyway)! Hugs, Ann, Mommy of Joy w/cf @ 23 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Welcome Vladimir, Shantell has been using Pulmozyme since it first came out in the USA (about 4 years ago). It is a wonderful medication that thins the mucous in the whole body. As you know, the mucous is three times thicker in a patient with CF. It is probably why my daughter is doing so well. I don't know where you are from, but if it is available do try to get it. It is also very expensive here. FG, mom of Shantell 19 1/2 years wcf > [Original Message] > > To: cfparents > > Date: 10/29/2001 7:44:22 AM > Subject: New Member > > Hi All > My name is Wladimir. I am dad of Julija 13 wcf. I'm one of the new > member. I would ask you about your oppinion relating treatment > Pulmosime (Dornaze Alfa). What kind of other respiration's treatment > use you every day. > Thank you, > Wladi > P.s. Excuse me for my bad, poor English > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2001 Report Share Posted December 3, 2001 Pam, Welcome to our little corner of the world. I'm so sorry about the death of your oldest son. When you feel ready, I hope you will tell us about him -- what he was like and what he loved in this world. And, of course, tell us something about your other children too. Kim Mom to (age 22 with CF and asthma) and (age 19, asthma but no CF) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2001 Report Share Posted December 3, 2001 First, let me say how sorry that I am that you've lost your son. I know you must be beside yourself with grief right now and I'm sorry you couldn't come to this list sooner for the support that you surely needed before now. Your 17 year old must be devastated also. I cannot imagine how he feels at this time. Please know that I empathize with what you are going through, and if you need someone just to sound off to, I'm here. Thank you for coming to the cfparents list. ~ > Hello, I am the mother of five children. My two oldest boys were diagnosed with CF at two months of age. One was 19. He died six days ago. The other is 17. Where we live there are no support groups for CF and I've gone through all the trials of dealing with this with what support I could get from family and friends. I just recently obtained internet access and am so glad to have some way to communicate with others experiencing the same things. I look forward to making new friends here who share common concerns. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2001 Report Share Posted December 3, 2001 Pam, I am so sorry to hear about the loss of your son. I am sure this is a very painful time for you. I hope we can provide some support to you. If you just need to vent your frustrations, this is a good place to do it. take care, - mother of Emma 16 months w/cf and Isabelle 3 years wo/cf On Mon, 3 Dec 2001 19:41:19 -0500 " Pam " pab509@...> writes: > Hello, I am the mother of five children. My two oldest boys were > diagnosed with CF at two months of age. One was 19. He died six > days ago. The other is 17. Where we live there are no support > groups for CF and I've gone through all the trials of dealing with > this with what support I could get from family and friends. I just > recently obtained internet access and am so glad to have some way to > communicate with others experiencing the same things. I look > forward to making new friends here who share common concerns. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2001 Report Share Posted December 3, 2001 DEAR PAM. I just read your post. I am getting in late from work and meeting. I am soooooo sorry about the loss of your dear son. I know that isn't easy to do ......and your younger son must be feeling not just the loss of his brother BUT , the thought of his having the same illness. I hold you all in my daily thoughts and will definitely light a candle in his memory today. it is good you are here on the lists . there are several and all are wonderful .Most of us are on all . You will find folks in all walks of life and many of us know of a loss & in fact have had a personal family member loss also. Please open your heart here and know these folks will understand . we are here for each other/ LOVE & HUGS, GrandmomBEV new member Hello, I am the mother of five children. My two oldest boys were diagnosed with CF at two months of age. One was 19. He died six days ago. The other is 17. Where we live there are no support groups for CF and I've gone through all the trials of dealing with this with what support I could get from family and friends. I just recently obtained internet access and am so glad to have some way to communicate with others experiencing the same things. I look forward to making new friends here who share common concerns. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Hello Pam and welcome to the group. I myself am new as of 3 weeks ago. I have no idea what to say about the death of your son. I'm so scared that I'll say the wrong thing. My heart goes out to you. I too know that family and friends aren't enough. You need to find families who are experiencing firsthand the effects of C.F. It's never before shown up in our family so no one knows anything about it except for what I tell them. And they forget that our son has it. He looks normal is what they all say. But sure he looks normal. It's the inside of his body that's not normal. I guess nobody can sympathize what the disease really is unless they are the ones that take care of them day in and day out. But it's not affecting them in any way so they may not give a hoot. That's how it is in my family. Except for my mom. She's been a great supporter. And my father who donates $ whenever we have our fundraising events. This year however the Foundation needs all that they can get. The terrorists attacks on the USA have left them scrambling for sources to continue with their research projects. What if they came across something truly remarkable that would lead to a cure but they ran out of resources to finish? Then all that work they did would be put on hold. And that means that children and adults with C.F. would be waiting longer than they should have to. I would be devastated if my son lost his battle to C.F. just days or even months before they found a cure. I'm sure I'd be angry and feel cheated. Your in my thoughts, from P.A. 5 w/CF Alyssa w/o CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Pam, We can only keep you in our thoughts and prayers, since your loss is of the deepest kind. We're here to listen to you pain or to hear about your family and your son when you need an ear or a shoulder to cry on. With heartfelt sympathy, Krishnan Mom to Santosh, 4wcf and Leela 2wocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Welcome to this group. You will enjoy this group. There is a lot of people her from all over the country that have experienced many things dealing with CF. I am a mom of two girls with CF and I can't bare the thought of going through what you are right now. I am so sorry to hear that you have lost one of your child. My thoughts are with you. You can vent here anytime that is what we are here for. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Welcome, Pam. I am so sorry about the loss of your son. I saw in your other post that the mail volume seems to be a bit much. Please stick around, even if you delete some of the mail unread. This group is a wonderful source of support. I have a son who was diagnosed in July. He's 15 months old. We live in central Florida. mama to 1 yo w/CF and 3 yo woCF > > Hello, I am the mother of five children. My two oldest boys were diagnosed > with CF at two months of age. One was 19. He died six days ago. The other is > 17. Where we live there are no support groups for CF and I've gone through > all the trials of dealing with this with what support I could get from family > and friends. I just recently obtained internet access and am so glad to have > some way to communicate with others experiencing the same things. I look > forward to making new friends here who share common concerns. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Pam, I am so sorry about your lose. How in the world are you? My deepest heart goes out to you. May God bless you and ease your pain. Where are you all from? I am from Ky. I have one son with cf. Email when you feel up to it. Tammie new member > Hello, I am the mother of five children. My two oldest boys were diagnosed with CF at two months of age. One was 19. He died six days ago. The other is 17. Where we live there are no support groups for CF and I've gone through all the trials of dealing with this with what support I could get from family and friends. I just recently obtained internet access and am so glad to have some way to communicate with others experiencing the same things. I look forward to making new friends here who share common concerns. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Pam, I'm so sorry to hear about your oldest son. It must be very hard on your 17 yo. I hope he is doing well healthwise, though I'm sure this is a very emotionally wrenching time for him. Welcome to the list. I'm sure you'll find much needed support here, and perhaps a member or two that live close by. hugs, C Mommy to Mick and Alli, 23 mo twins wcf new member Hello, I am the mother of five children. My two oldest boys were diagnosed with CF at two months of age. One was 19. He died six days ago. The other is 17. Where we live there are no support groups for CF and I've gone through all the trials of dealing with this with what support I could get from family and friends. I just recently obtained internet access and am so glad to have some way to communicate with others experiencing the same things. I look forward to making new friends here who share common concerns. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 > was diagnosed at age 6, after two years of wheezing from what we thought was allergic asthma. Before that, he'd had no symptoms. Such late diagnosis is rarer, now, because they have blood screenings avialable (required in some states). > > Dori... " If I haven't grown up by now, I'm never going to. " > > >Hi Dori. I'm Cindy. I have a son that was recently diagnosed (less than 9 months ago at age 7 1/2 then), I know where you are coming from. I am new to Yahoogroups also. It's nice to know you are not the only one dealing with the daily occurances of CF with your child's illness. It seems frustrating at times, but I have finally come down to reality and take care of his meds and therapy and then let him be a " normal " kid, as much as possible. He loves life and I look at life through his eyes and it all seems different. Good Luck and hope to hear from you soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Welcome! You've found the place to boast about those socks! I myself am so thrilled that my daughter can put on her own pants I told everyone I knew! My daughter's name is and she is 3 1/2. We live in PA near Philly. Welcome to the group and hope you find the support that we all do here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Hi ! Welcome! Congrats on the toileting! This is definitely the right place to post this kind of stuff! To be honest, I'm jealous. One of my son's started using the toilet independently at almost 8 1/2 and the other at 7 1/2. The youngest is still in Goodnights when sleeping :-( . I know someday that will end too. I have a friend who's nt son didn't get dry nights until puberty hit. :-O How wonderful that you found and Au-Pair that wanted to work with autistic children!! Think she'd be interested in vacationing in the Northwest with ? She could get lot's of experience there, right ? Watch for 's welcome post and you'll understand what I mean. Sue in MI Mom to: 12 1/2, HFA 9, AS/ADD IM: smgaska1 Autism, the hardest puzzle to put together. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Hi and Jim: Welcome to the list! We will be more than happy to cheer on your children's accomplishments. The folks here definately appreciate how special (and frequently how hard won) these milestones can be. Social isolation is a common problem among us - - which is prolly why so many of us are addicted to this list. I hope it will help fill the social void for you. (SAHM in GA) MSN elizabethloht@... n 32, mo, no formal dx Phoebe, 4 wks ----- Original Message ----- > Hi everyone, > We are new to this group, so would like to introduce ourselves. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Hi & Jim, I'm one of the multiple Debbi(e)s on the list. I have 2.5 year old boy/girl twins. My son Jordan was diagnosed with autism this past summer. His sister, is NT. We live in Ohio, outside of Cleveland. To help everyone keep track of which Debbi(e) is which ... I'm known as " Debbie with twins " . LOL Anyways, welcome to the list. I hope you find it as homey as I have. Debbie with twins - Jordan (ASD) 2.5yo - (NT) 2.5yo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 > We live in upstate NY, in a semi-rural area and are a bit socially isolated < whereabouts in ny? i'm in orange county ------------------------- gina, 31, ny single mom to - kailey, 8, autism, hyperlexia, depression, anxiety, OCD, DSI trevor, 3, multiple developmental delays, no " official " dx yet parker jade, due 7-20-03 :-D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Welcome & Jim. ) I know what you mean about social isolation (a lot of us do) Most of my friends with NT kids have slowly drifted away. They don't know what to do or say and they can't relate to my being excited about my 11 year old learning to count to 30. They also don't understand my fears of puberty...ARGHHH!! Sorry...you're not to that point yet. I shouldn't frighten the " newer " parents....(just kidding, it's not that bad, it's just is obsessing about having a baby of her own) > Au-Pair, see America, and get experience working with AS kids. I think I would be in the hospital now without her! > Oh NOW I'm jealous! I want one!!! >>'Hal puts on his own socks for the very first time!!!!' or 'Hal actually ate a PICKLE' on the Verbal behavior group, or DTT-NET, etc. After reviewing a few days of your posts it looks a good place to do this. > This is an excellent place to do this. This is a wonderfully supportive group that knows how important the little steps are. Every little accomplishment adds up and in a few years you'll be amazed at how far your children have come. ) Tina mom to 11, autistic, mentally handicapped, some OCD traits 9, NT 7, possible aspergers? (testing to commence at end of this month) Quote Link to comment Share on other sites More sharing options...
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