Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 hi i would just like to say that my daughter 17 mths has to have it 3 times daily also..we have been doing that since we found out at the age of 12 mths.thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 The doctors want us to do CPT 4x a day on Madison. I told him that that was next to impossible unless we get up in the middle of the night and do them and I was not going to do that as we all needed sleep. He lectured me on how to set *high* goals and then if we only get 3 in a day then at least we tried for a high goal. To me though, if we try for 4 and only get 2 or 3 in I feel like a failure. Our average that we get in is only 2, one in the morning and one at night. I can see when she is sick that we need to get as many in as possible but right now she isn't sick and her PFT's are up in the 100%'s. yvonne mom to Madi 12 wcf & Ariel 9 wocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 , EIlish is 3 and we actually do three physio's a day by choice (apparently). Well it started when she was born they gave us a chart which had 3 sections, fron/back, sides, and mids. So we divided it into 3 physio treatments. Then when she turned 3 they gave us another chart with almost the same but still with 3 sections. Then when she was in hsp in Nov. they couldnt believe that we do physio 3 times a day and have never missed one (We feel guilty if we do) except for the mornings of her birthday and christmas. They sais " no you only need to do it either once and alternate the other to. Well no explained it like that. But weve decided that whilst she not going to school or anything well still do it 3 times as weve always done that. Now it makes sense that in Nov. I rang the clinic to say Eilish was coughing and they said to INCREASE physio. When I got of the phone I told (hus.) and I thought WHERE are we going to increase it. Now I realise to 3 times. (mummy of LIam 6 wocf and EIlish 3wcf) CPT > Hi, > > I read is doing CPT 3x a day > I don't know how old your child is, but this seems an awful lot of CPT to me > ? > Usually even CF adults only do 2 CPT a day. > Personally, when Leo is fine, I do one physio and when he is sick, 2 to 3 > times a day > > , Mom to Leo 2 wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 LEisbeth, No we do the 3 times ourselves. My husband does it in the morning before he goes to work and I do lunchtime and again does the evening. Oh a therapist would be great. We actually bid at a funraising auction for one of the hsp. physio's for the day. We were going to go out and let him do the stuff, its alright we know him well. (mummy to Liam 6wocf and Eilish 3wcf) CPT > > > > Hi, > > > > I read is doing CPT 3x a day > > I don't know how old your child is, but this seems an awful lot of CPT to > > me > > ? > > Usually even CF adults only do 2 CPT a day. > > Personally, when Leo is fine, I do one physio and when he is sick, 2 to 3 > > times a day > > > > , Mom to Leo 2 wcf > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 , I feel a bit awkward replying to this but I am more than surprised by the way you seem to do the CPT !! So you do the 3 body parts physio in 3 different sessions ??? From what we were teached at the Children's Hospital of Boston, it was to do the upper, middle and lower lobes all in one session. We had to clap about 10 different body parts in different positions during about 2 minutes each position. I am sure that other parents would explain that better than I do, as I don't practice this kind of CPT anymore. Have you been trained to do this CPT or have you only learned doing it looking at the charts ? I am fearing this message might shok you a bit, but I am just trying to help and I think your CPT method must not be very effective from what I understand. I think the least you deserve is having a proper training and be sure that your sessions are really effective. , Mom to Leo 2 wcf -----Message d'origine----- De : Baxter Envoyé : lundi, 11. décembre 2000 16:29 À : cfparentsegroups Objet : Re: CPT , EIlish is 3 and we actually do three physio's a day by choice (apparently). Well it started when she was born they gave us a chart which had 3 sections, fron/back, sides, and mids. So we divided it into 3 physio treatments. Then when she turned 3 they gave us another chart with almost the same but still with 3 sections. Then when she was in hsp in Nov. they couldnt believe that we do physio 3 times a day and have never missed one (We feel guilty if we do) except for the mornings of her birthday and christmas. They sais " no you only need to do it either once and alternate the other to. Well no explained it like that. But weve decided that whilst she not going to school or anything well still do it 3 times as weve always done that. Now it makes sense that in Nov. I rang the clinic to say Eilish was coughing and they said to INCREASE physio. When I got of the phone I told (hus.) and I thought WHERE are we going to increase it. Now I realise to 3 times. (mummy of LIam 6 wocf and EIlish 3wcf) CPT > Hi, > > I read is doing CPT 3x a day > I don't know how old your child is, but this seems an awful lot of CPT to me > ? > Usually even CF adults only do 2 CPT a day. > Personally, when Leo is fine, I do one physio and when he is sick, 2 to 3 > times a day > > , Mom to Leo 2 wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 4x/day!? With pft's in the 100's, some things just warrant questioning. Cheers, Lou evon91@... wrote: > The doctors want us to do CPT 4x a day on Madison. I told him that that was > next to impossible unless we get up in the middle of the night and do them > and I was not going to do that as we all needed sleep. He lectured me on how > to set *high* goals and then if we only get 3 in a day then at least we tried > for a high goal. To me though, if we try for 4 and only get 2 or 3 in I feel > like a failure. Our average that we get in is only 2, one in the morning and > one at night. > > I can see when she is sick that we need to get as many in as possible but > right now she isn't sick and her PFT's are up in the 100%'s. > > yvonne > mom to Madi 12 wcf & Ariel 9 wocf > > > *********************** > 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 December 11, 2000 Report Share Posted December 11, 2000 I agree. I finally confessed to our docs that we quit doing CPT. In the years we had done it, we never saw any results. She hasn't had any lung problems. Now, I realize how lucky we are, but CPT 4x a day seems like it would just get everyone sick from stress and lack of sleep. If Mycah does get sick, we'll have to either get her to allow us to do CPT or get a vest. Meanwhile, we are kept busy trying to keep her eating. She seems to have more digestive stuff than lung stuff at the moment. However, she is on Pulmozyme and TOBI so that may be why! Lori in Florida Re: CPT > 4x/day!? With pft's in the 100's, some things just warrant questioning. > Cheers, > Lou > evon91@... wrote: > > > The doctors want us to do CPT 4x a day on Madison. I told him that that was > > next to impossible unless we get up in the middle of the night and do them > > and I was not going to do that as we all needed sleep. He lectured me on how > > to set *high* goals and then if we only get 3 in a day then at least we tried > > for a high goal. To me though, if we try for 4 and only get 2 or 3 in I feel > > like a failure. Our average that we get in is only 2, one in the morning and > > one at night. > > > > I can see when she is sick that we need to get as many in as possible but > > right now she isn't sick and her PFT's are up in the 100%'s. > > > > yvonne > > mom to Madi 12 wcf & Ariel 9 wocf > > > > > > *********************** > > 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 December 11, 2000 Report Share Posted December 11, 2000 , Yes we know about the 12 parts of physio. But the research showed (which the hsp. gave us) that the more complicated the physio positions the less likely they are to be done. So therefore we do 6 sides, 2 at each session, which work really well. My daughter has no chest problems and no cough either unless she is unwell. The 6 positions are the main ones and they cover the top half of the body. Ive just e-mail a dr. friend in who asked there physio and he basically said that yes the more to remember the less likely to do it, which seems to be true as it seems alot of people dont do much physio. CPT > > > > Hi, > > > > I read is doing CPT 3x a day > > I don't know how old your child is, but this seems an awful lot of CPT to > me > > ? > > Usually even CF adults only do 2 CPT a day. > > Personally, when Leo is fine, I do one physio and when he is sick, 2 to 3 > > times a day > > > > , Mom to Leo 2 wcf > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 Valérie, That's exactly it, they have to cough during CPT. At least that's what we are told, because everyone seems to be doing different things. It would maybe be an idea to video sessions and exchange them. Would you be a candidate to exchange with me, Valérie ? We went to the a therapist with a lot of experience (the one of the Centre at the Belgian coast) with and he said : she has to cough each session ! 's therapists are now going to see him to improve their technique. However, one of them is already very good. In fact, the quality of CPT has been one of my major concern the last months. It has to be effective ! To be honest, 3x or 4x seems to much for me. Why do they advice this when the child is not sick ? It leaves no room for other things in live. We always do 2x. Liesbeth (2,5wCF) and Kasper (1no CF) > CPT > > > > Hi, > > > > I read is doing CPT 3x a day > > I don't know how old your child is, but this seems an awful lot of CPT > to > > me > > ? > > Usually even CF adults only do 2 CPT a day. > > Personally, when Leo is fine, I do one physio and when he is sick, 2 to > 3 > > times a day > > > > , Mom to Leo 2 wcf > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 , Wow ! I admire the way you handle it ! But it sounds like a very heavy programme. 's grandparents (or our nanny) goes with her to the therapist at 09.00 (9 a.m.) in the morning and I go with her again at 19.00 (7 p.m.) in the evening after work. Next year it will be 17.00 (5p.m.) in the evening which is better. Only in the weekend we do CPT ourselves, twice a day. Tom usually does it, when I do the nebulizing part. Overhere (Belgium), therapists are partly reimbursed, say 60-70%. How's that in the US ? Insurance ? Liesbeth (2,5 wCF) and Kasper (1no CF) > Re: CPT > > LEisbeth, > > No we do the 3 times ourselves. My husband does it in the morning before > he > goes to work and I do lunchtime and again does the evening. Oh a > therapist would be great. We actually bid at a funraising auction for one > of the hsp. physio's for the day. We were going to go out and let him do > the stuff, its alright we know him well. > > (mummy to Liam 6wocf and Eilish 3wcf) > CPT > > > > > > Hi, > > > > > > I read is doing CPT 3x a day > > > I don't know how old your child is, but this seems an awful lot of CPT > to > > > me > > > ? > > > Usually even CF adults only do 2 CPT a day. > > > Personally, when Leo is fine, I do one physio and when he is sick, 2 > to > 3 > > > times a day > > > > > > , Mom to Leo 2 wcf > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 Liesbeth, Im actually in Australia and we dont have district nurses that will come for home physio. I dont know anyone that has anyone else come in and do there physio. It doesnt seem heavy to us as weve never known anything else. Although when Eilish sleeps a night a my mums and we wake up with no physio or meds to do its bliss. Although there's so much time we dont know what to do with it. We dont need private insurance in Australia. The stats say less than half the population have private insurance. All the cf stuff is free and the meds. are $3.20 each, and once you reach $171.00 then for the rest of that year its free. And the hsp admissions are free also. So its pretty good. CPT > > > > > > > > Hi, > > > > > > > > I read is doing CPT 3x a day > > > > I don't know how old your child is, but this seems an awful lot of CPT > > to > > > > me > > > > ? > > > > Usually even CF adults only do 2 CPT a day. > > > > Personally, when Leo is fine, I do one physio and when he is sick, 2 > > to > > 3 > > > > times a day > > > > > > > > , Mom to Leo 2 wcf > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 Leisbeth, With Eilish we do 3 minutes of physio, then she does 5 big blow, which we use trick birthday candles that keep relighting and then she keeps trying to blow them hard. Then 5 big huffs, thats our big bad wolf game , then five big coughs from her belly. Then another 3 minutes of physio and so forth for 10 minutes of actual physio each side. Were lucky that Eilish doesnt have a cough and so when she does we know somethings on the way. Juli (mummy to Liam 6 wocf and Eilish 3 wcf) CPT > > > > Hi, > > > > I read is doing CPT 3x a day > > I don't know how old your child is, but this seems an awful lot of CPT > to > > me > > ? > > Usually even CF adults only do 2 CPT a day. > > Personally, when Leo is fine, I do one physio and when he is sick, 2 to > 3 > > times a day > > > > , Mom to Leo 2 wcf > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 , It's interesting to see the differences between Europe, US and Australia ! We don' t have district nurses either who do CPT, but independent physiotherapists who work at their own home. We have two specialised in respirational physiotherapy who do not live too far away from us. does 5 minutes trampoline jumping, 5 minutes sitting while jumping on the big physio ball while we hold her lungs at level of breathing out and she has to blow, 10 minutes of blowing and pushing lungs (not clappping) in different positions while blowing on the floor, 5-10 minutes flutter and PEP mask. While we hold her lungs down and you feel mucus moving up, she is asked to cough. This is the most difficult part. She wears 3 bandages around her chest during CPT to increase effectiveness of the therapy. We are learning and trying to improve every day. It's not easy and different everywhere. We don't have a vest in Europe. Do you have that in Australia ? Liesbeth > Re: CPT > > Liesbeth, > > Im actually in Australia and we dont have district nurses that will come > for > home physio. I dont know anyone that has anyone else come in and do there > physio. It doesnt seem heavy to us as weve never known anything else. > Although when Eilish sleeps a night a my mums and we wake up with no > physio > or meds to do its bliss. Although there's so much time we dont know what > to > do with it. We dont need private insurance in Australia. The stats say > less than half the population have private insurance. All the cf stuff is > free and the meds. are $3.20 each, and once you reach $171.00 then for the > rest of that year its free. And the hsp admissions are free also. So its > pretty good. > > > CPT > > > > > > > > > > Hi, > > > > > > > > > > I read is doing CPT 3x a day > > > > > I don't know how old your child is, but this seems an awful lot of > CPT > > > to > > > > > me > > > > > ? > > > > > Usually even CF adults only do 2 CPT a day. > > > > > Personally, when Leo is fine, I do one physio and when he is sick, > 2 > > > to > > > 3 > > > > > times a day > > > > > > > > > > , Mom to Leo 2 wcf > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 Liesbeth, It is intersting to see the difference that each country has to almost everything. Father christmas is bringing Liam and Eilish a big trampoline for x-mas. She has a small one but there's no 'danger' falling of off that so a big one will be more exciting. Pep masks are used here once the child is over 8 instead of chest claps. When I first came on-line and heard people talking about vests I asked the doctors and physio's. They all agreed that they were no better than manual physio (I know alot of people will disagree, but thats the advise we were given). Plus no-one sells the vests in Aus. One of the fathers in the clinic comes from somewhere in USA and said the actual mechanic box bit is quite large? I have no 1st hand experience though. I think whatever you find that helps do it. Whatever people say helps them and can prove it Id give a shot. I think its quite strange that although all the kids have the same disease there's no 'standard proven, helpful treatment like other diseases. I think that would be helpful as alot feels like a trial and error guessing game. Especially for newly dx parents as your afraid to try anything in case you do something wrong. Good night (here) (mummy to Liam 6 wocf & Eilish 3 wcf) CPT > > > > > > > > > > > > Hi, > > > > > > > > > > > > I read is doing CPT 3x a day > > > > > > I don't know how old your child is, but this seems an awful lot of > > CPT > > > > to > > > > > > me > > > > > > ? > > > > > > Usually even CF adults only do 2 CPT a day. > > > > > > Personally, when Leo is fine, I do one physio and when he is sick, > > 2 > > > > to > > > > 3 > > > > > > times a day > > > > > > > > > > > > , Mom to Leo 2 wcf > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 I think Doctors sometimes don't put enough attention on the quality of life. We do our CPT, but as of yet there hasn't been any conclusive studies to show it even works. There has been anecdotal evidence that if you don't do it for a while your PFT's, etc. go down, but that is all. Now we all know how much the Dr.s won't rely on anecdotal evidence when we are asking something from them, but when it just means us dealing with an extremely upset child multiple times a day - then it is okay. I sound bitter don't I? Anyway we do CPT once a day when things are well twice or more when Scout is sick. I don't, however, let it become a burden in our lives. I try to always do it of the morning, but if we are traveling or have a play date it may get pushed to the evening. With CF there are enough things we can't be flexible about and until the CPT study is done and we know if it makes an impact I am not going to stress about it. Lori mom to Scout 2 wCF Re: CPT > The doctors want us to do CPT 4x a day on Madison. I told him that that was > next to impossible unless we get up in the middle of the night and do them > and I was not going to do that as we all needed sleep. He lectured me on how > to set *high* goals and then if we only get 3 in a day then at least we tried > for a high goal. To me though, if we try for 4 and only get 2 or 3 in I feel > like a failure. Our average that we get in is only 2, one in the morning and > one at night. > > I can see when she is sick that we need to get as many in as possible but > right now she isn't sick and her PFT's are up in the 100%'s. > > yvonne > mom to Madi 12 wcf & Ariel 9 wocf > > > *********************** > 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 December 12, 2000 Report Share Posted December 12, 2000 , I am so glad you posted this, because I was starting to wonder if I was doing 's cpts hard enough, or good enough, because he doesnt cough either. He does seem to get a little out of breath when he goes up the steps or jumps around, but he doesnt cough unless he is getting sick. Take care, and hope you have a great holiday season. , mommy of 4, , 16 with a much older mind, Caleb, 6 and a kindergarten pro, finally, , 5 and the next famous artist, and , 17months with CF and reflux and a beautiful smile and bright blue eyes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 > His problems are mainly digestive at the moment. What kind of digestive problems is he having? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 > Pseudomonas, liver and bile problems What is pseudomonas? i looked it up and it said it had something to do with wet soil in plants? My house is covered in plants. Do I get rid of them? What are the liver and bile problems? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 > We went to the a therapist with a lot of experience > (the one of the Centre > at the Belgian coast) with and he said : she > has to cough each > session ! My children do not cough during cpt or vest therapy at all unless they have an infection. They don't cough when they run or jump lots either. There just isn't really anything to cough up. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 Ditto here! Lori RE: CPT > > > We went to the a therapist with a lot of experience > > (the one of the Centre > > at the Belgian coast) with and he said : she > > has to cough each > > session ! > > My children do not cough during cpt or vest therapy at > all unless they have an infection. They don't cough > when they run or jump lots either. There just isn't > really anything to cough up. > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 Hi, since Fiona hadn't had any kind of lung involvement from infancy on, we decided to skip any kind of common CPT, which made the whole family feel uncomfortable. Jumping, tickling, whistle blowing and many other fun activities have replaced it and so far we think it has worked. Of course during those weeks with her leg in the cast we missed the CPT and we will order a flutter at the next clinic visit. But as has already said, you need to feel well with what you are doing. Bye-bye Torsten, dad of Fiona 3.5wcf e-mail: aberdeen95@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 Very impressive!!! We don't do anything like that - at least not that I have been introduced to. Lori RE: CPT > > > > > > > > > > > > > We went to the a therapist with a lot of experience > > > > > (the one of the Centre > > > > > at the Belgian coast) with and he said : she > > > > > has to cough each > > > > > session ! > > > > > > > > My children do not cough during cpt or vest therapy at > > > > all unless they have an infection. They don't cough > > > > when they run or jump lots either. There just isn't > > > > really anything to cough up. > > > > > > > > > > > > > > > > __________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 Another alternative that appears safer for the little kids is a " jumpolene " . It is inflatable with sides. I bought one on-line for my nieces at www.toysrus.com. It was around $40. Lori mom to Scout 2 wCF Re: CPT > > > Hello Nele, > > Could you please explain what you do with the > styrofoam balls, does Matias > blow them across a table or something?? I am > asking because is getting > to the point where if he isnt tired, he fights his > cpts bad. Would love an > alternative, we are looking for a small trampoline > to have him jump on as > excercise, hopefully he will enjoy this. Take > care, and it is great when the > little ones are doing so well. > > , mommy of 4, , 16 with a much older > mind, Caleb, 6 and a > kindergarten pro, finally, , 5 and the next > famous artist, and , > 17months with CF and reflux and a beautiful smile > and bright blue eyes > > -------------------------- eGroups > > *********************** > 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 December 13, 2000 Report Share Posted December 13, 2000 Becky, Eilish has one of those trampolines, but father christmas is brining a huge one. When she was first dx we were given a video which showed a child about 3 or 4 jumping on a mini tramp. What the father made was like a huge tri-pod over the tramp. so the child could hold onto this and jump and try to bring his bottom up to make it level with his shoulders, and boy did he cough. Re: CPT > I had heard from a friend in the Netherlands, and from people at the CFRI conferences in the past, that those mini trampolines work great for getting kids giggling, coughing, etc. and are a great form of CPT. Ever since, we have been keeping our eyes out for one of these to use with Ricky. > > Well, I was at my father in law's house at Halloween and he had an old one (but still safe and sound) that he was going to throw out, and I told him my idea. He actually brought it over to us! He has always been so supportive of our efforts with Ricky and his CF, and of CF resesarch, but I think he has not really known how to express it, so I think this made him feel good. > > Well, both boys (Ricky with CF and Andy without) love the trampoline. Only problem is, we live in an apartment and have to keep the thing in our enclosed patio most of the time, and bring it out onto the lawn on sunny days for him to use. So for us it's not effective because he doesn't get much of a chance to use it. Luckily though, since June we have had the Vest! Hooray! > > Becky > > > *********************** > 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 December 14, 2000 Report Share Posted December 14, 2000 We have recently discovered the " hippity hop " which, I believe, similarly works as a supplemental chest PT and a lot more fun! Quote Link to comment Share on other sites More sharing options...
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