Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Hello everyone, well today is very frustrating. My daughter Kylie ,W/cf has been ill. So far it has stayed in the ears and sinuses. But the doc has her on Augmentin and Septra. Xopenex treatments every 4 hours with 20 min cpts. my major problem is that Kylie just turned a year old and has been fighting me tooth and nail to do her treatments it is to the point that she pulls the mask off and spills her Xopenex (so that she is not getting full treatment and kicks and screams no matter how hard i try to distract her during her cpts. ) I am so frustrated i dont know what to do the only way she gets full treatment is if i force it on her, i feel like a vilian. But i just want her to get better and with her fighting me i just dont feel she is getting good enough treatment. do you all have any suggestions. If this cold progesses to a lung infection i will never forgive myself. Please help!! regretfully frustrated, Roxanne 12mo,wcf kylie, 8 daunte wo/cf, 5 jordan wo/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Would it be possible to try the " wave by " while she is napping/sleeping .. I have heard some folks have done this & been very successful with the results. How often do you do treatment is a day. ? Maybe if it is more than once .try at nap time & then do the other when awake , Maybe the treatments will make her feel better & it not annoy her as much. It might " panic her when you put mask on -especially if she is having difficulties ,as it is, with easy breathing. Just a thought.............I am closticphobic , so I understand something going on the face......but a wee one as her, wont understand it is for her best health........ I know-hope you will get mach help from others who have had this same problem with their wee ones too..best wishes, let us know what finally will help/work LOVE & HUGS, grandmomBEV frustration/help please Hello everyone, well today is very frustrating. My daughter Kylie ,W/cf has been ill. So far it has stayed in the ears and sinuses. But the doc has her on Augmentin and Septra. Xopenex treatments every 4 hours with 20 min cpts. my major problem is that Kylie just turned a year old and has been fighting me tooth and nail to do her treatments it is to the point that she pulls the mask off and spills her Xopenex (so that she is not getting full treatment and kicks and screams no matter how hard i try to distract her during her cpts. ) I am so frustrated i dont know what to do the only way she gets full treatment is if i force it on her, i feel like a vilian. But i just want her to get better and with her fighting me i just dont feel she is getting good enough treatment. do you all have any suggestions. If this cold progesses to a lung infection i will never forgive myself. Please help!! regretfully frustrated, Roxanne 12mo,wcf kylie, 8 daunte wo/cf, 5 jordan wo/cf ------------------------------------------- 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 January 24, 2003 Report Share Posted January 24, 2003 When my daughter, Peyton, was smaller we had a hard time with breathing treatments as well. We did not use a mask in the beginning. We just held the valve up in front of her face. If your valve has a two way spout you can put sterile cotton on one side to block it, so the medicine is just coming out the side closest to their mouth and nose. We also had special movies that she got to watch only when she was doing breathing treatments or cpt. We also always do cpt right before bedtime. When we tell her it is time to do cpt, if she refuses, we tell her that she has to go to bed. Everytime she choses cpt over going to bed. She used to really fight the cpt, but now she is so used to it that it relaxes her and more often then not she falls asleep. There is no advice that will work on every child, what worked for Peyton, may not work for Kylie. I can only offer suggestions and tell you to be patient (I know it is hard sometimes), it will get better. After months of tantrums it became such a part of Peyton's daily life that she learned to accept it. Hang in there! ~Wendi mom to Peyton 2 wcf Iowa > Hello everyone, well today is very frustrating. My daughter > Kylie ,W/cf has been ill. So far it has stayed in the ears and > sinuses. But the doc has her on Augmentin and Septra. Xopenex > treatments every 4 hours with 20 min cpts. my major problem is that > Kylie just turned a year old and has been fighting me tooth and nail > to do her treatments it is to the point that she pulls the mask off > and spills her Xopenex (so that she is not getting full treatment and > kicks and screams no matter how hard i try to distract her during her > cpts. ) I am so frustrated i dont know what to do the only way she > gets full treatment is if i force it on her, i feel like a vilian. > But i just want her to get better and with her fighting me i just > dont feel she is getting good enough treatment. do you all have any > suggestions. If this cold progesses to a lung infection i will never > forgive myself. Please help!! > > regretfully frustrated, > Roxanne > 12mo,wcf kylie, 8 daunte wo/cf, 5 jordan wo/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 I think we all know how you feel! I felt like such a monster when Emma began her TOBI treatments. She was only 8 months old and we used her highchair, a Peg-Perego with a 5 point harness. We locked her in and held the mask to her face while she screamed, we sang and cried for 20 minutes 2x per day. After a week, she sat quitely and our tension eased as well. Now I have a 2 1/2 year old that must hold HER own mask, turn on HER machine, pour HER medicine, pick HER nebulizer, and choose HER own tape. If she could do her own CPT she would as well!! Things will change...I promise!! Missi mom of Emma 2 1/2 w/cf and Mathieu 1 1/2 wo cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 This is great>. I heard from others that said they had used highchair's with seat belts too. sometimes giving them finger toys to keep their hands busy AND a tape or movie on. Really I think you parents are so ingeniues.Hope all are doing well in so much cold weather in the states. In the warmer areas . I hope you all can cool off soon.-I just don't wish the COLD on you though LOVE & HUGS, Grandmombev Re: frustration/help please I think we all know how you feel! I felt like such a monster when Emma began her TOBI treatments. She was only 8 months old and we used her highchair, a Peg-Perego with a 5 point harness. We locked her in and held the mask to her face while she screamed, we sang and cried for 20 minutes 2x per day. After a week, she sat quitely and our tension eased as well. Now I have a 2 1/2 year old that must hold HER own mask, turn on HER machine, pour HER medicine, pick HER nebulizer, and choose HER own tape. If she could do her own CPT she would as well!! Things will change...I promise!! Missi mom of Emma 2 1/2 w/cf and Mathieu 1 1/2 wo cf ------------------------------------------- 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 January 24, 2003 Report Share Posted January 24, 2003 I truly truly appreciate your frustration!!!! I am sure you have tried, but I will mention some ideas anyway: -when she is sleeping; doing breathing when a BRAND new favorite tape (trade w/ friends to make it fun & new & FREE); read new book; make chest pts a game - once kids know you want them to do it forget it! they will fight you...even at a young age. Dylan used to crawl away! Worse case - let her jump on your bed! jump w/ her on your lap, etc. just keep everything moving! Do your best --- once you get frustrated they win! Try treatments during settling down times. Its hard, trying and awful! Good Luck. 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...
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