PDA

View Full Version : Tobi antibiotic


haikumama
05-04-2009, 08:54 PM
Hi everybody--

We saw our pulmo today because Ike has been spitting up mucus and desatting a bit when he sleeps. The doc is taking a shotgun approach - more albuterol, some pulmicort, and he's prescribed Tobi, an inhaled antibiotic.

Has anyone used Tobi before? It is $4,000!!!! I don't know what our co-pay will be, but even so. That, combined with the fact that it can cause hearing loss, and it's not recommended for kids under 6 has me worried. The Tobi is not to treat a known lung infection, only to treat something that might be there that we don't know about.

Seems like the doc is reaching with this one.

Anyone have any experience with it?

thanks,
Kari

Niff
05-04-2009, 09:24 PM
We've used tobi before, and I know another trach parent who had a rolling RX for it - she'd just call in a refill anytime she thought she needed it. I haven't noticed any side effects from the tobi, but every child is different.

sandra
05-04-2009, 09:36 PM
We used it a lot on Brian. I t worked wonders when we needed it. Brian's dr prefered it at times to giving another round of oral antibiotics. Brian used it when he was about 1 year old the first time, I think.

Check and make sure that the side effects you mentioned are for inhaled tobi, because I remember those side effects being for the oral antibiotic of tobi.

Kate
05-04-2009, 09:41 PM
Mitchell has used it to-what kills me is the price and we still have 1/2 a box sitting in our refridge.

llwilliams8
05-04-2009, 10:15 PM
Autumn was on Tobi when she was only 2 months old for an infection. She never had any side effects from it and was on it for 10 days. It cleared up the infection fast.

Ann
05-04-2009, 10:34 PM
I think TOBI is a pretty common Rx for trach kids. Anyone who manages to avoid the dreaded pseudomonas should consider themselves very lucky! We have Medicaid as secondary, so it never cost us anything, but for those who have to pay a co-pay for it, it's almost cost prohibitive.

KJKK8437
05-04-2009, 11:00 PM
We took it. True to form, my kid had what they now think was a known but not terribly common reaction to it (dry irritated cough), so we couldn't take it anymore. We ended up with most of a box in the fridge, which I donated back to our pulmonologist.

Thinking back, it might have been the Tobi, but it might not have been. Either way, I have not yet heard a story about any other kid having a reaction to it (which doesn't mean anything, I guess).

Christamae
05-04-2009, 11:09 PM
TOBI is an excellent nebulized antibiotic. You can feel the effects with the first treatment the $4000 is for 4 rounds. It is one of three drugs that will treat psuedomonis-and by far the best.

If you can manage the copay-I would get it.

Wooders80
05-05-2009, 05:34 AM
We've been on it for pseudonomas for a month - it worked. Didn't realise it was so expensive though, explains why the pharmacist kept telling me to make sure I put in the fridge as soon as I got home.

Jacob's Mom
05-05-2009, 06:13 AM
We've used TOBI many, many times. Our pulmo at one time gave us an 3-month Rx with refills so that I could get it on our insurance's maintenance med program (cheaper co-pays). That was back when Jacob was sick often.

Anyways, it has worked very well for my son. It has kept him off of IV ab's a few times.

babybear
05-05-2009, 08:14 AM
We've used it once, but Gabriel ended up being re-admitted, so I had to discard most of it. I looked at our insurance statement and they only paid about $400 for it...maybe they left off a zero! Gabriel's on inhaled gentamicin right now, and the insurance company was billed $4000 for the med, but only paid about $1700 thanks to the discounted rate. In any event, I hope it works for your little one.

Alex's mom
05-05-2009, 09:27 AM
We've used it as well. It did cause her to cough while it was being administered and we saw a little bit of blood in her secretions (we assumed from irritation from the coughing) but it cleared up the trach infection.

haikumama
05-06-2009, 05:38 PM
Thanks for all the comments, everyone. I feel better about the Tobi now.

Of course, we just heard from our insurance that our co-pay is $1,000 for it, so we aren't going to be able to get it.

If the medicaid ever goes through, it will be covered, so I guess we will just wait.

KJKK8437
05-06-2009, 06:21 PM
Thanks for all the comments, everyone. I feel better about the Tobi now.

Of course, we just heard from our insurance that our co-pay is $1,000 for it, so we aren't going to be able to get it.

If the medicaid ever goes through, it will be covered, so I guess we will just wait.

Gosh -- I was sure hoping you'd have a low out of pocket maximum for your bub so that you wouldn't have to worry about a big percentage of the cost. I'm sorry about this. I hope they can find an effective way to combat whatever is going on.