Hi everyone,I am brand new here, let me quickly introduce myself.I am a daddy of a CF-kid, I am (almost) 33, I am called Olivier. Olivier ? Yes, you have guessed I'm French. So pls forgive my mis-talking and lack of vocabulary, thanks, but pls feel free to say when it's not correct, I will for sure not be offended at all ! My web site is dedicated to this desease, and like here, a forum is available as well as chat room (all in French of course). People there are CF (adults and younger), families and friends.I have joined to share CF experiences with you, to discuss, and so on....How it basically works in France :the mom goes to the hospital to deliver (the dad also of course)if the delivery happens ok, the mam stays 5 days there with the baby (or babies.....)At 3 days of life, for every single kid, a little blood test (blood taken on the heel) is done, to check several deseases (i would say 5 from the top of my head), among which, if the parents agree, is the CF. No information back from this blood test means no problem (as we say in France : no news is good news)So, my CF-kid is my 3rd child. She was born in Jan-2003. But from the very first day we noticed there was something wrong : too much apetite, the results in the diaper were "strange looking and smelling".... We said so to the pediatrics, but all say this was temporary disorders, maybe milk allergy. Okay why not, we are not doctors after all.When she was just 1 month we received a phone call from a big hospital we had never dealt with. They said our daughter needed further exams because one of the results of the heel blood test was not good. We asked what exams, and the doctor said "sweat test". We have then checked over the internet and have found out "Cystic fibrosis" ("mucoviscidose" in French). Oups. Strange. Hum, not possible, no past cases in the families. Okay, digestive symptoms are alike.So, little meeting in this hospital with a "lung-pediactrics", sweat test. Second meeting with the doctor, our daughter is invited to stay 5 days at the hospital for further exams and beginning of the care because she is CF.Other discussion with a genetician.First medicines : Pancreatic medecines, vitamines, kinesitherapy (clapping is NOT recommended as not efficient enough).Then, back home : As per the hospital's prescription, the kinesitherapist shouls come home on need. No that easy to find 1. But we succeeded, he very human, professional, efficient. He is not reluctant to come home twice, on weekends, or on bankholidays (eg he came twice on jan-1st this year)1 month later, second sweat-test, and also for the 2 other kids. They are not CF. We don't know yet wether they have the "CF-chromosome" or not.My mutation is : 1811+1.6KB->AMy wife's is : Delta F508So today our daughter is 19months old, the doctor said she has the best "weight and size" trend of all the CF kids that she (the doctor) takes care of.Well that's quite a lot for a first post !!!!Take all care.
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<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i>Welcome!! What is kinesitherapy? I have never heard of it. Thank you,Sharon, mom of Sophia, 3 and Jack, 11 months, both with cf<hr></blockquote>Well, the kinetherapist is not a doctor but is kind of, who "heals" by touching. KINE means something like "touch" in old Greek. In simple words, the kinetherapist is the guy in charge of emptying the lungs, of cleaning the breathing ways from the nose to the very last lung part.I don't know if I'm quite clear. The guy helps the CF people to breath very very deeply, to caugh and get rid of the mucosities. Various exercices can help that, and the "clapping" (claps in the back) is now obsolete and absolutely not recommended for CF people over here. the recommended technic is based on maximum "inflate" and "deflate" of the lungs, with rythme change. Also, you can find kinetherapist to help you heal your ankles when you twist them for example, or for sports-professionals, he is the guy who take care of the legs during a long tennis game, or after a long ride of the "Tour de France".That's what a Kinesitherapist does.(Please be patient with me if you still don't understand...)
Welcome Olivier. I am a mother of two teenage girls with CF. We too have not had anyone else in our family with CF. We are military and have lived in Germany in the past. For 3 and a half years. While we were there they went to Maastricht, NL for their clinic visits. It is there that we were introduced to their physiotherapist. They too do not use clapping or percussion but deep cycles of breathing along with the flutter. They gave us studies that showed how the breathing techniques worked better. We had to change back to percussion when we returned to the US but still use deep cycles of breathing when we are without the percussor or flutter. How is your daughter doing? Well I hope. We have wondered how the medical care is there in France. We visited many times while living in Germany and absolutley loved it there. I don' think there was an area that we didn't just completely enjoy. From Normandy to the Med. Our oldest daughter wanted to go to University in France but now has changed her preference to England. Even though she has taken 3yrs for French I guess it would be easier in England. That is her dream, she will probably end up staying here in the US for University. Her other dream is to own a vineyard. She took to France very well I think. We have told her that going to school in France or England would be wonderful if she could get the medical care that she needs without any troubles. So that is why I ask how it is there. Well it is time to go. Again, welcome!Liza
<blockquote>Quote<br><hr><i><b>Liza</b></i>It is there that we were introduced to their physiotherapist. They too do not use clapping or percussion but deep cycles of breathing along with the flutter. They gave us studies that showed how the breathing techniques worked better. We had to change back to percussion when we returned to the US but still use deep cycles of breathing when we are without the percussor or flutter. <hr></blockquote>Okay, so "physiotherapist" is what we call "kinesitherapist" ;-)The cycles of breathing are strongly recommended in Europe indeed, and if the physiotherapist claps, let's change.<blockquote>Quote<br><hr>How is your daughter doing? Well I hope. We have wondered how the medical care is there in France. We visited many times while living in Germany and absolutley loved it there. I don' think there was an area that we didn't just completely enjoy. From Normandy to the Med. Our oldest daughter wanted to go to University in France but now has changed her preference to England. Even though she has taken 3yrs for French I guess it would be easier in England. That is her dream, she will probably end up staying here in the US for University. Her other dream is to own a vineyard. She took to France very well I think. We have told her that going to school in France or England would be wonderful if she could get the medical care that she needs without any troubles. So that is why I ask how it is there. Well it is time to go. Again, welcome!Liza<hr></blockquote>She's pretty fine thanks. So far, few mucosities in the bronchis, but the upper breath-ways (I mean from the nose till the trachea) are regularly infected. our physiotherapist cleans all this very efficiently, using some particular liquid (either physiological liquid, it's neutral, or boosted-liquid) and a particular way of flooding all this. The last part of the cleaning is having the baby caugh "by the nose"; Watch out ! it goes far..... Some staphyloccoccus aureus or E-coli, cured by BACTRIM or other medics alike. She for sure needs CREON, and other stuff like vitamines, salt and so on.She weighs 12.3Kg for 81cm. Not too bad, but these days, she is not willing to eat much....The care system in France, generally speaking is not that bad, and the cares by themselves are very good. Regarding CF, our country is pretty well organized. I would say that in general, we have a "care culture" here.There are dedicated CF centers in every region, included in big hospitals. I don't know them all, I just know ours, and people there are very good. Not only on the medical aspect, but also on the "human aspect". Also non-CF centers take good care and attention to CF people. Of course, it depends mainly on every single person's good-will. But CF-people can go to France without any doubt. CF is a known and recognized (not orphan) desease, so no problem in finding physiotherapists, medicines, pneumonologists (I don't remember that one, I read it somewhere but already forgot ! I mean "lung doctors") and so on.France is a nice country to live in I agree. We are living in the country side, in the wineyards !I went twice to the US, last time was 10 years ago....Take all care.
Olivier, My son was born in jan/2003 too. He is doing fine, even if he has cultured PA and Staph. He is around the same size of your daughter ( 13 kg and 83cm), and eating now is not so fun to him. I was wondering how agressive is the treatment to bacterias in france? Is it most treat w/ IVs?My son has a deltaF508 too and two other ones , y913x and I1027T, since he has 3 mutations we don't know which ones are responsable for his CF.Hope everything is doing great w/ your familyvalps: I am Brasilian, so my english is not so good...
Hi Val do brasil,interesting how eating seems to be a daily fight... I would say it depends on her mood. She's gaining weight, that's the most important !The treatment is first with classic antibiotics (eg bactrim, penicillin), or sprays, based on which bacteria is involved. IVs come after, or if the culture is definitely too much important and growing fast to be treated by oral antibiotics.So far so good with the family ! hope the same for you.
Hi my name is michele I have asix months old son who has cf. We had no idea that we had the gene. Between the two of us we have 14 kids and he is the only one born with cf. Sometimes its really hard to deal with! He has ostomy bags that makes it harder to deal with. This is my first time here to.