Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 In a message dated 11/16/2002 2:16:58 AM Eastern Standard Time, chaosangel@... writes: > I really wish she had been diagnosed at birth. Then maybe she'd be used to > it now (and so would we for that matter.) I think thats why I have such major problems with (12). She had 6 years of a " NORMAL " life.... was 4 and is more adaptable. All kids are different... Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Actually, we live in Arkansas. But it's been kinda nippy here, too. Shanna mom of Triana, age 2 wcf Re: Battle Royal My daughter is two as well. She was diagnosed at birth thru testing and is therefore pretty used to therapy but hey she's two, that's the age when they challenge everything and suddenly want to do everything themselves (even when they can't). We were having really bad problems a few weeks back. I also noticed at the same time that when I put her down for her nap, she would fuss and fuss and fuss. I finally decided to try taking away the nap and now she falls asleep during the neb and usually stays asleep during the therapy as well. We put a pillow on our lap to do it. She is not coughing anything up yet so it's not a big deal. In the morning, I start while she is still asleep. I pick her up, hold her while I sit in a chair (a nursing chair), strap on the neb and most times she never wakes up. If she does, we keep a tv in her room and we put on whatever pbs show is on (usually sesame street). There are times when she stays awake during the whole therapy. This usually happens on clinic days when she falls asleep in the car and is therefore not tired. On those nights, we will read to her while doing the neb and my husband lets her watch cartoons (usually the powder puff girls of all things) during therapy. Depending on how close to three she is, you may be able to talk to her and find out what she wants to watch. We also have tried the approach of using the tv as a reward if she behaves. If she acts up, we turn it off and try and do therapy as best we can. Therefore, rewarding the positive and not rewarding the negative. We got this approach from her feeding therapy at CHOP. Anyway, this is what works for us. Good luck. As a mother of a four year old and one who is currently two, I know two can be a real tough age. I've gotten losts of bruises from Emma kicking recently, Isabelle was the same way at that age. You can't get them to do anything at that age without them running away or putting up a fight. They crave independence. - mom to Emma 2 years w/cf and Isabelle 4 years wo/cf ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com 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. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Actually, we live in Arkansas. But it's been kinda nippy here, too. Shanna mom of Triana, age 2 wcf Re: Battle Royal My daughter is two as well. She was diagnosed at birth thru testing and is therefore pretty used to therapy but hey she's two, that's the age when they challenge everything and suddenly want to do everything themselves (even when they can't). We were having really bad problems a few weeks back. I also noticed at the same time that when I put her down for her nap, she would fuss and fuss and fuss. I finally decided to try taking away the nap and now she falls asleep during the neb and usually stays asleep during the therapy as well. We put a pillow on our lap to do it. She is not coughing anything up yet so it's not a big deal. In the morning, I start while she is still asleep. I pick her up, hold her while I sit in a chair (a nursing chair), strap on the neb and most times she never wakes up. If she does, we keep a tv in her room and we put on whatever pbs show is on (usually sesame street). There are times when she stays awake during the whole therapy. This usually happens on clinic days when she falls asleep in the car and is therefore not tired. On those nights, we will read to her while doing the neb and my husband lets her watch cartoons (usually the powder puff girls of all things) during therapy. Depending on how close to three she is, you may be able to talk to her and find out what she wants to watch. We also have tried the approach of using the tv as a reward if she behaves. If she acts up, we turn it off and try and do therapy as best we can. Therefore, rewarding the positive and not rewarding the negative. We got this approach from her feeding therapy at CHOP. Anyway, this is what works for us. Good luck. As a mother of a four year old and one who is currently two, I know two can be a real tough age. I've gotten losts of bruises from Emma kicking recently, Isabelle was the same way at that age. You can't get them to do anything at that age without them running away or putting up a fight. They crave independence. - mom to Emma 2 years w/cf and Isabelle 4 years wo/cf ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com 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. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Actually, we live in Arkansas. But it's been kinda nippy here, too. Shanna mom of Triana, age 2 wcf Re: Battle Royal My daughter is two as well. She was diagnosed at birth thru testing and is therefore pretty used to therapy but hey she's two, that's the age when they challenge everything and suddenly want to do everything themselves (even when they can't). We were having really bad problems a few weeks back. I also noticed at the same time that when I put her down for her nap, she would fuss and fuss and fuss. I finally decided to try taking away the nap and now she falls asleep during the neb and usually stays asleep during the therapy as well. We put a pillow on our lap to do it. She is not coughing anything up yet so it's not a big deal. In the morning, I start while she is still asleep. I pick her up, hold her while I sit in a chair (a nursing chair), strap on the neb and most times she never wakes up. If she does, we keep a tv in her room and we put on whatever pbs show is on (usually sesame street). There are times when she stays awake during the whole therapy. This usually happens on clinic days when she falls asleep in the car and is therefore not tired. On those nights, we will read to her while doing the neb and my husband lets her watch cartoons (usually the powder puff girls of all things) during therapy. Depending on how close to three she is, you may be able to talk to her and find out what she wants to watch. We also have tried the approach of using the tv as a reward if she behaves. If she acts up, we turn it off and try and do therapy as best we can. Therefore, rewarding the positive and not rewarding the negative. We got this approach from her feeding therapy at CHOP. Anyway, this is what works for us. Good luck. As a mother of a four year old and one who is currently two, I know two can be a real tough age. I've gotten losts of bruises from Emma kicking recently, Isabelle was the same way at that age. You can't get them to do anything at that age without them running away or putting up a fight. They crave independence. - mom to Emma 2 years w/cf and Isabelle 4 years wo/cf ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com 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. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2002 Report Share Posted November 18, 2002 Hi Shanna, RAD is reactive airways disease. And albuterol is, as you said it right, an emergency drug. It opens up the airways at once and for a short time. I don't know how long the effect lasts (anyone else?), but it can only be helpful when you do the CPT within that time-span. You also asked what autogenic drainage is. There is a video about it at http://www.cfcare.com/autogenic.htm I don't have that real player installed on my computer, but maybe you can download it and watch. And below is a simple explanation from the Cystic-L Handbook. Since the vest isn't available here, it's the european alternative for independent lung clearance. Another advantage is, that you can do it everytime everywhere and don't have to haul half a ton of equipment. Kids learn it here when they are five or six. Peace Torsten, dad of Fiona 5wcf Autogenic Drainage Autogenic Drainage clears secretions further down the airways than can be reached by a cough. This method of airway clearance keeps the airways open, similar to the PEP mask theory. Autogenic Drainage uses a combination of breathing techniques at different levels to move the secretions up to where they can be " huff " coughed out. The first level is unsticking the mucus with a low-lung volume breathing, then collecting the secretions with mid-volume breathing, and finally removing the secretions with " huff " coughing at a higher level. This method of airway clearance needs to be taught to the patient and requires much discipline and concentration when performing. It has the advantage of allowing total independence; no equipment or other people are necessary to complete this form of airway clearance. It is a very gentle procedure; if you are doing AD correctly you will not cough violently. This gentler form of therapy is wonderful for people who are prone to hemoptysis. Quote Link to comment Share on other sites More sharing options...
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