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any babies on tobi?

Posted by on Dec. 17, 2008 at 7:15 PM
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i'm actually in the hospital with my 5 month old right now. I'll spare all the details of how we got here but his CF doctor wants to put him on Tobi. Anybody put their kids on it this as a baby? I know that the benefits outweigh the risks.... I just didn't think he'd be going on this so soon....

by on Dec. 17, 2008 at 7:15 PM
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by Member on Dec. 18, 2008 at 3:03 AM

We were on Tobi this time last year, so Alexa was only about 6 months old or so.

She cultured PA at one of her clinic visits, so we hoped to eradicate it if possible, through aggressive early treatment.

She did one month of Tobi, and her cultures have come back clear for over a year now.

Is your son culturing PA?

by New Member on Dec. 18, 2008 at 1:50 PM

from my understanding tobi is only used when a culture for PA comes back positive like the last post stated. my daughter has been on pulmozyme and xopenex (hypertonic saline) since 2months old. good luck! god bless!

by Member on Dec. 20, 2008 at 8:19 PM

My son had to go on Tobi 2x per day when he was 3 months old due to a postivie culture for PA.    We had to do three cycles of it (month on, month off x 3).   He has been PA culture free since the first cycle of treatments, but our CF doctor kept us on the Tobi for 3 cycles.   I have to tell you that he hated it at first.  I cried so hard the first couple of times I held him down for it.  What worked for us was to get him to fall asleep in our arms and then start the treatments.   It was a pain but, was a necessary evil.    After he got use to it, we started putting him in his crib when he fell asleep on a propped up pillow or boppy pillow.   You are able to give a pacifier with the pari baby mask.   Also we figures out a trick with the masks; ask you CF Dr's or even equipment suppliers for a toddler fish mask with the head strap.     It didn't fit our son, but we put our pari baby mask inside it then strapped it to his head.   It works awesome together and gives us an extra hand for him.  We have minimal leaks.   

     Our Tobi treatments took 45 mins or more to get out all the medication.    We were on the Trek S travel compressor.    We just switched to a bigger compressor and it works great for our pulmozyme treatments.  So if your Tobi treatments are taking too long, you might want to change compressors.    

   It seemed early for us as well but our CF Dr's were being extra cautious.    The pulmozyme treatments are better than the Tobi; only 10 mins.     He's been on pulmyoyme 1x per day for the last month.   He's 9 months now and I am glad that we had to start the Neb treatments young, because now he is use to it and he fights less.   He still fights every now and again, but a 3 month old starting out on a Neb is easier to hold than a 9 month old.

  I hope all goes well for you.   Feel free to message me if you had anymore questions.

baby development
by Member on Dec. 20, 2008 at 10:38 PM

My two Kody age 3 and Cira age 2 just got put on Tobi this month.... As it was told to us it's an antibiotic and they need two of them so my kids where also on a liquid anti for 14 days... Tobi for 28 days twice a day..... Our doc said that there has to be 28 days between putting them on it again.... Dose that make sense..... 28 days Tobi 28 days off..... and the the liquid anti for the first 14 days on the Tobi. I was upset that my kids where starting it.... but it's not a forever thing and it's for the best. I hope you little one gets better soon and comes home for the holidays.

by Member on Dec. 21, 2008 at 7:52 AM

Tobi is the best way to fight PA cultures. From what the clinic told me it's almost impossible not to get. It comes from bacteria that grows in standing water. Bacteria that is harmless in most people, but is aggressive in colonizing in a CFer's lungs. The IV Tobi can have some really bad affects if not monitored correctly but the inhaled is much safer from what I've read. Anyone else know?

Tobi doesn't work as well if taken continuously it needs to be broken up. We don't  want the kids to become resistant. We were on and off it a few times when my son was little but now we use it every other 28 days and probably always will. The nurses were surprised the few times his culture came back without PA and we got to go off the tobi even for a little while. They said they could tell that we had been using consistently. It always amazed me that many of the CF parents don't do as they should and the nurses can tell who does and who doesn't . When we first started they acted surprised to find a parent who does do as she  should, lol

Now we do Colistin on the 28 days in between the Tobi and this cycle will probably only be broken with a cure or new lungs one day. They also told me to try and keep the treatments as close to 12 hours apart as possible to keep the Tobi levels as consistent as possible so that it works at it's highest levels. We also take zithromax three times a week and bactrin everyday twice a day. We add extra antibiotics when he's sick on top of all of this too. The list goes on and he's a really healthy CFer, lol

Take Care and Thank God we have drugs like Tobi that will help!

by New Member on Dec. 22, 2008 at 8:54 AM

My son was on it when he was 10 mos and my daughter was on it when she was 2 yrs.  They both did 28 days of Tobi along with Cipro(oral) for 14 days and it wiped the PA right out.  Then our center has us re-culture after a couple of mos and luckily both of them cultured normal no PA, and so far... knock on PA since.  They are now 3 and 5 yrs old.

Just depends on if the re culture for it again how your treatment regimen will go.

Best of luck!


by Member on Dec. 26, 2008 at 5:13 PM

it's just rough adding yet another neb med. He's on 4 now. Xopenex, hypertonic saline, pulmozyme, and now tobi. takes about an hour for everythinng X 2 times a day. Just found out that my other two boys have cf as well...and i'm overwhelmed at the amount of treatments i will be doing in one day. i don't know what they will be on, but i'm assuming probably the same stuff minus the tobi....

don't get me wrong, i'm so grateful that now there are drugs that can help them out...but i have a husband who doesn't help me out with this stuff and 3 cf kids! yikes... i better start eating my wheaties!

by Member on Dec. 28, 2008 at 3:21 AM


I'm sorry to hear about your other sons as well. What a Christmas present, ouch! I understand how overwhelming it can be for just one. You really have my sympathy. It takes me about an hour 2 xs a day on normal days and when he's ill we spend up to 5 hours a day, if we're lucky and don't have IV's to run also. Then the hours start to really stack up fast.

I have read that siblings will share and culture the same bacteria ect.... just from being in the same home, breathing the same air and that it's almost impossible to avoid. Maybe you will be lucky an the other two sons will have a lighter case of CF and that's why you didn't find it until now?

Either way I think hubby should step up and start helping. Maybe some counsuling would help? I have a friend who's husband has started helping her out more when the consular explain to him what a lazy and selfish person he was being, lol Like she said even if he hadn't started helping it was just great to hear someone tell him the same thing she was feeling, lol

Take care and God bless

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