use of Tobi on children under 1yrs.old

[anonymous]

I am getting really nervous. Saydee has been on Cipro for almost 14 days and been on Tobi for 5 days. She is loosing her voice and caughing a little so I called the doctor so they cut her down to half the dose of Tobi. Tonight I listened to her lungs and she is starting to wheeze. Does anyone know if this is normal or could she be coming done with something else. She was healthy when she was born never knew about cf until she was 6 weeks and diagnosed through N.Y. State newborn blood screen. Then she went into wheezing for 4 months had the RSV virus at 4 months old but didn't caus eany cf problems. Lungs stayed clear. They put her on allergy med. Zyrtec and changed her formula to soy and no wheezing for 2 months till now.She just cultured the psuedamonous. Now I am a wreck and don't know what to think. Don't know anyone personally with cf so I don't know if how she is is normal or not for a baby.Please let me know. Thank You
Katina Mom of Saydee 8monthsw/cf
Keriona 3yrs.w/o cf
Ethan 8yrs w/o cf

 

[anonymous]

Yes, loosing the voice and coughing can be a side effect of Tobi in the first week or so. I am not sure about the wheezing you mentioned. I am a bit surprised that your daughter's doctor did not tell you that when you voiced concern over the drug. I have heard of other infants also cutting the dose back in half. I took my son in when he was about 10 months old to have high peak and trough done to tell if he was inhaling too much Tobi. The number they check by bloodwork about an hour after the treatment should not be over 1 and Jack's was .9, so 1 whole dose was fine for him. You can always call the Chiron company (makers of Tobi). They should be able to answer some questions.
Sharon, mom of Sophia, 4 tomorrow! and Jack, 2 next month both with cf

 

[anonymous]

We will be starting Tobi and Cipro by the end of the week (as soon as it is delivered). My son is also 8 mos old, and just cultured pseudomonas (dang it!) I can tell you that the attendings of the CF center had a meeting to determine the amount of Tobi he should receive(apparently there was some controversy). We will be starting on 1/2 vial 2x/day (on top of regular pulmicort/albuterol nebs). We also have to go for a peak level 1 hour after treatment. I'll let you know how we make out. Good luck to you!

Sharon
mom of 8mo with CF and 4 year (no cf)

 

[anonymous]

Well i am now alittle nervous as well...my little girl developed psedunomas (sp) when she was 10 months old.(Now she is one) She had coughing and wheezing for about a month, she was put in the hospital for iv antibotics with a neg. culture for psed. BUT immediatly after she got home from hospital she continued coughing/wheezing ~i finally went to another clinic from being put off and frustrated, and they did another culture and it came back positive for psed. She was put on Cipro for 14 days and a full dose of TOBI for 2 months. Noone mentioned a concern about the dosage! What would happen and what should i look out for?? I asked about the hearing possibities and they said it was only a concern with the iv antibotics??
As to the original post, in our experience she did have alot of coughing/wheezing and something just not being right with her. Even when she was positive with psed. it took awile for the Tobi to kick in maybe about 2 weeks. Then she stopped coughing/wheezing. Just stay on top of it, like us i believe she had psed. a long while before it somehow showed up in a culture. She has had 2 neg cultures since.

 

[anonymous]

how old is your little girl? Has she been healthy since she was born or was there problems? How did you find out?I never heard of the blood test done to make sure the dose is ok but we have her regular appt. Tues. the 26 so I am going to demand it. Has your daughter been on Tobi ever since or did they stop it after she don't culture it?If you want to email me I'm at peanut_12887@yahoo.com or katinajld@hotmail.com. Thanks Katina (Mom of)
Saydee 8months w/cf
Keriona 3yrs. w/ocf
Ethan 8yrs w/ocf