Hi - My son is 6 1/2 and we just went for his 3 month check at the clinic. Since he was diagnosed at 18 mos., he has cultured Pseud. a few times and he was treated with TOBI which worked well. He typically has had tough winters, esp. with his sinus'. The dr. suggested last year that my son do the alternating TOBI treatments from Oct. through April - the time he usu. had trouble with infections. It worked well and he remained rather healthy. The dr. suggested starting the TOBI again for this season. This year, he is in school full time. I was just wondering how most of you work the treatments and cpt while the children are in school? Also, I was wondering if a lot of the other children who have cultured pseud. in the past are on the TOBI regimen? He is very angry as he hates the TOBI. Right now, I am just feeling sad. It seems like I can find a place to put my feelings on a daily basis to try and remain upbeat. Whenever I go to the clinic or TOBI or oral steroids come into play, I get very sad. I have to regroup and get pos. and strong again. Just venting and hoping to gather some info. from others in similar situations. Thanks!
Pseudomonas and TOBI
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arabeth
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Hi Jo Ann...
I can totally relate to what you are saying. I feel completely overwhelmed sometimes...most of the time actually. I have 3 boys w/out CF and 2 girls w/CF. My girls are 9 and 5. My youngest was the first to culture pseudomonias at about age 2. My older daughter didn't culture it until she was 7. Their doctor is very aggressive with their care, as it seems yours is (which is a good thing). Once they culture it they are put on TOBI on a month and off a month...They continue their every 3 month visits for cultures. They do not go off TOBI until they have had at least 3 clean cultures, so it's anywhere from 9 months to a year. They last cultured it in March and have been on TOBI every since. Their last 2 cultures have been clear but he said that he won't consider taking them off it until Feb if they have clean cultures through then. It does add more time and work and my children HATE TOBI too. They really complained for a while and now they pretty much just do it. As my 5 year old was finishing her treatment last week she took off her mask and said, "That TOBI is nastier than puke..." lol.... I feel really sad too that they have to deal with so much in their lives. It seems unfair and it's easy to get into that mode of thinking. Especially right now because my older daughter is getting to the age where she really resents CF. She now wants to hide it from everyone because she is embarrassed. I have tried talking to her but she just starts crying. I am trying to get her in to see a child psychologist I was referred to by the CF social worker but it's going to be late January before we can get in. Anyway, I'm sure I've been no help to you but I just wanted you to know you are not alone. I have a very hard time keeping up all the treatments and stuff. I'm not sure how people fit school, work, homework, housework, dinner, chores, treatments and everything else into a day and have any time left. If you figure that out, please let me know
... And if you need to vent more or just have someone to yell at when you're frustrated, feel free to drop me a line. My e-mail address is crazyslady@comcast.net ... Hope you feel better.
Renee
I can totally relate to what you are saying. I feel completely overwhelmed sometimes...most of the time actually. I have 3 boys w/out CF and 2 girls w/CF. My girls are 9 and 5. My youngest was the first to culture pseudomonias at about age 2. My older daughter didn't culture it until she was 7. Their doctor is very aggressive with their care, as it seems yours is (which is a good thing). Once they culture it they are put on TOBI on a month and off a month...They continue their every 3 month visits for cultures. They do not go off TOBI until they have had at least 3 clean cultures, so it's anywhere from 9 months to a year. They last cultured it in March and have been on TOBI every since. Their last 2 cultures have been clear but he said that he won't consider taking them off it until Feb if they have clean cultures through then. It does add more time and work and my children HATE TOBI too. They really complained for a while and now they pretty much just do it. As my 5 year old was finishing her treatment last week she took off her mask and said, "That TOBI is nastier than puke..." lol.... I feel really sad too that they have to deal with so much in their lives. It seems unfair and it's easy to get into that mode of thinking. Especially right now because my older daughter is getting to the age where she really resents CF. She now wants to hide it from everyone because she is embarrassed. I have tried talking to her but she just starts crying. I am trying to get her in to see a child psychologist I was referred to by the CF social worker but it's going to be late January before we can get in. Anyway, I'm sure I've been no help to you but I just wanted you to know you are not alone. I have a very hard time keeping up all the treatments and stuff. I'm not sure how people fit school, work, homework, housework, dinner, chores, treatments and everything else into a day and have any time left. If you figure that out, please let me know
... And if you need to vent more or just have someone to yell at when you're frustrated, feel free to drop me a line. My e-mail address is crazyslady@comcast.net ... Hope you feel better.Renee
Hi. We do three treatment sessions a day for my 7 yr old. One before school, one right after, so at about 3:30 - maybe four and the last at bedtime, starting at 8:30-9 pm. That's kind of late but both of my kids are night owls and the little one-w/ CF and weight issues-loves to start eating at about 9PM! That's when I'm ready to pass out! He hates the afternnon sesion the most. He gets albuterol/intal and TOBI or Colistan AM and PM and albut/int and Pulmozyme in the afternoon, plus chest PT. He also hates the vest,having tried it a few times in the hospital. It is time comsuming(not to mention patience).
Jo Ann,
You must feel so frustrated. If you don't mind me dishing out advice, <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'd just say to allow yourself to vent and have a "bad day" once in a while. Sometimes it helps more to give yourself permission to feel sad than just ignore it. You are smart to vent! We all need to do it sometimes (at least I do....if I don't occasionally, I go a little batty....lol.)
My son has cultured PA three times and TOBI has worked really well each time. We have always worked it around a 12 hour schedule (i.e. 8:00 am/ 8:00 pm). There are some days when he needs three treatments, but I know we won't be home in the afternoon. On these days, I'll give him an extra 10 minutes on his vest. If I do this twice a day, it adds an entire 20 minutes to his chest PT.
I don't know if I've helped any, but hang in there! Keep us posted and feel free to vent any time.
Carey
You must feel so frustrated. If you don't mind me dishing out advice, <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'd just say to allow yourself to vent and have a "bad day" once in a while. Sometimes it helps more to give yourself permission to feel sad than just ignore it. You are smart to vent! We all need to do it sometimes (at least I do....if I don't occasionally, I go a little batty....lol.)
My son has cultured PA three times and TOBI has worked really well each time. We have always worked it around a 12 hour schedule (i.e. 8:00 am/ 8:00 pm). There are some days when he needs three treatments, but I know we won't be home in the afternoon. On these days, I'll give him an extra 10 minutes on his vest. If I do this twice a day, it adds an entire 20 minutes to his chest PT.
I don't know if I've helped any, but hang in there! Keep us posted and feel free to vent any time.
Carey
Jo Ann
I am not a parent, but can relate to your situation a little. I was on Tobi for over a year and I hated it. I work full time so I had to take it first thing in the morning then when I got home from work I would take pulmyzyme and then try to have an 80 min. workout and then another Tobi treatment. On this schedule my life consisted of work and CF treatment and that's basically it. So I can understand you being worried about how you are going to get your son all of his treatments and still let him get an education too. I also hated the Tobi (1 month on 1 month off) because the months that I was on the Tobi I would be so inflamed and cough so much that it was impossible to work out, and my breathing numbers were actually getting worse. I told my doctor that I have had enough and I didn't want to take it anymore and he agreed (wether he agree or not I was done taking it). Since then my workouts are much better and my breathing tests have improved. I know that some people love their Tobi but it was a negative experience for me.
Good Luck
Dave 29 w/cf
I am not a parent, but can relate to your situation a little. I was on Tobi for over a year and I hated it. I work full time so I had to take it first thing in the morning then when I got home from work I would take pulmyzyme and then try to have an 80 min. workout and then another Tobi treatment. On this schedule my life consisted of work and CF treatment and that's basically it. So I can understand you being worried about how you are going to get your son all of his treatments and still let him get an education too. I also hated the Tobi (1 month on 1 month off) because the months that I was on the Tobi I would be so inflamed and cough so much that it was impossible to work out, and my breathing numbers were actually getting worse. I told my doctor that I have had enough and I didn't want to take it anymore and he agreed (wether he agree or not I was done taking it). Since then my workouts are much better and my breathing tests have improved. I know that some people love their Tobi but it was a negative experience for me.
Good Luck
Dave 29 w/cf
No children but do take the TOBI myself... I've been on the treatment (every other month regime) for a few years now. I hated having to take the aerosals because of the length of time involved..before school was a pain and at night I would be so tired. However, when talking to my doctor about the routine..he said that there was no real benefit in going on the TOBI one month and off the next. (The only reason doctors are supposed to alternate TOBI is because thats what the research done on the drug was-in alternating months).
So we came to the decision that I would take the TOBI everyday at night (before bed). I would still do all of my regular "treatments" in the morning, flutter, inhalers, pills, etc. and then at night I would do all of that plus the TOBI. In this way, my doctor said that the TOBI would stay in my lungs through the night because you dont cough as much. This works for my life schedule right now...
As far as your son goes...when my parents would "make" me do my treatments (back then it was PD's) and masked aerosals...i absolutely hated it!!! but I thank them now for always making do these things..because it made me later in life when the responsibilty was mine to keep in good health. Even though the treatments are a pain, I dont mind doing them anymore because thats just part of my life!
Hope this helps! Take care!
So we came to the decision that I would take the TOBI everyday at night (before bed). I would still do all of my regular "treatments" in the morning, flutter, inhalers, pills, etc. and then at night I would do all of that plus the TOBI. In this way, my doctor said that the TOBI would stay in my lungs through the night because you dont cough as much. This works for my life schedule right now...
As far as your son goes...when my parents would "make" me do my treatments (back then it was PD's) and masked aerosals...i absolutely hated it!!! but I thank them now for always making do these things..because it made me later in life when the responsibilty was mine to keep in good health. Even though the treatments are a pain, I dont mind doing them anymore because thats just part of my life!
Hope this helps! Take care!
Hi JoAnn, I have 2 girls with cf. They are 16 and 10. My 16 year old has not cultured pseudomonas for 8 years now and my 10 year old had a cold this past week and her 2 cultures came back free of pseudomonas also. Erica, my 10 year old did have pseudomonas 2 years ago. Our Dr. said no to any antiobiotics. I feel it is really important for doctors to get cultures and confirm a bacterial infection before treating the child. To give you a little history. Both my girls have cultured pseudomonas in the past. The last time we had a hospitalization was in 1995. Although I am not advocating that you homeschool, we have seen a big difference in controlling our children's environment. Tanya, my 16 year old almost went through sinus surgery at the end of 6th grade( she was attending a private school) , however after having her home and in the airconditioning we noticed a change in her condition and the day before the surgery we canceled it. Perhaps your son is exposed to a lot of allergens at school, especially when they have rooms filled with carpet and books, and not to mention the fact that parents these days send sick kids to school. We have used Tobi very infrequently over the past few years. We find that the girls are not thrilled about tobi either but know that it helps when they need it. When my girls were first dignosed the Drs. wanted them on antibiotics all the time and I said no. I felt if they had an infection yes, it was warranted, but to cause their immune systems to break down it wasn't worth it. Please keep in mine that every person with cf has a different disease. What I mean, is what works for one may not work for another. I have tried many different things from vitamin therapies to increased cpt therapies. I have spent hours on researching the options. Tobi is excellent if your child has a pseudomonas infection. A new toy when the child has to do tobi is an nice distraction, I have found. I would ask as many questions as you can to make good decisions. Just a side note, my children have animals, 2 dogs, 8 rabbits, 4 birds. I don't use antibacterial soap anymore due to the increased risk of bacterial resistance. When my children were litlle I went crazy with cleaning my house etc. Now they get dirty, and thats ok! They catch colds and we increase the therapies. I hope this has helped. Please be encouraged; there is a lot you can do to keep your child healthy. Aloha, Heather