Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 My 10.7 year old, who despises her meds and is not compliant is now vomiting in the morning while doing her tobi - does this occur with anyone else's kids? My boys are ok with it - slow- but ok..... Rosemary in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2001 Report Share Posted April 21, 2001 The burning in the throat is a common side effect of TOBI. Because of that my daughter (only 2) only does half a vial twice a day. One of the best things about TOBI is that hasn't been a problem in bacteria becoming resistant to it. The few cases of resistance I have heard about were overcome by staying off of it for a little longer than usual and then going back to it. That is the reasoning for the 28 on 28 off. Lori Mom to Scout 2 wCF TOBI Hi, I have a 7 year old boy with CF, his name is Mikey. He is currently doing Tobi. It burns his throat, which causes him to not want to breath in very deep. Has this happened to anyone else? I give him throat lozenges after the tx. Oh, one more question; has anyone ever heard of anyone becoming resistant to the tobi? My sons doc assures me that this is why we do 28 on and 28 off. But sometimes I worry if they really do know. Our doctor tells me that Mikey will always be taking tobi(28 0n and off) My fear is that he will become resistant to it. Then how do we fight the pseudomonas? Will it be IV tx only then? well thanks for letting me vent. From, Angelina mom of Mikey 7 wcf, Ciara 15 wocf, Jillian 12 wocf PLEASE do not post religious emails to the list. ------------------------------------------- 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 April 21, 2001 Report Share Posted April 21, 2001 Hi! I dont know the answer to your question, but I am curious as to why Mikey ALWAYS has to be on tobi. Love from...Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2001 Report Share Posted April 24, 2001 I want to know if anyone uses TOBI on babies or very young children??? We've been asked to participate in a study up until Connor is five years old where they do routine bronchoscopies to check for pseudomonas and staph. when he gets a cough which doesn't clear up. He'll then get treated with IV antibiotics and three months of TOBI (nebulised). But there are risks with it effecting their hearing and kidneys. I'm not sure if we want to take those risks. Tobi isn't commonly used in Australia so I was hoping that in the states (or elsewhere) tests had already been done to determine whether it is safe on babies. Connor is only five months old and we need to make a decision before he's six months. Is there anyone else from Australia doing this trial or considering it? Thanks Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2001 Report Share Posted April 24, 2001 -Kristy, in december my son (then 11months old) was put on tobi/ he was only on it for 2 months/ he had psudeo(i can't spell) when we went in to the doctor in 2-2001 thye took him off so he only took it for approx 35 days(they stopped it in the middle of the second 28 days on) he did not like it/ he would cry durring the whole process. i have heard of the long term effects. i really don't like that was he was on it at such a young age. kimberly- jason 14mn w/cf and kalvin 8 w.out > I wato know if anyone uses TOBI on babies or very young children??? We've been asked to participate in a study up until Connor is five years old where they do routine bronchoscopies to check for pseudomonas and staph. when he gets a cough which doesn't clear up. He'll then get treated with IV antibiotics and three months of TOBI (nebulised). But there are risks with it effecting their hearing and kidneys. I'm not sure if we want to take those risks. Tobi isn't commonly used in Australia so I was hoping that in the states (or elsewhere) tests had already been done to determine whether it is safe on babies. Connor is only five months old and we need to make a decision before he's six months. Is there anyone else from Australia doing this trial or considering it? > Thanks > Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2001 Report Share Posted April 24, 2001 Kristy, I know people on the Cystic-L who have permanent damage done (ringing in the ears) from long term Tobi use, and be careful of the kidney's. I'm a firm believer that too many antibiotics can cause more harm than good. And there are risks in bronchoscopy damage, also. All I know is Shantell didn't need IV antibiotics for the first time until 16years old. I think I would personally do a study on more CPT than antibiotics. Just my experience. , mom of Shantell 19yr wcf TOBI I want to know if anyone uses TOBI on babies or very young children??? We've been asked to participate in a study up until Connor is five years old where they do routine bronchoscopies to check for pseudomonas and staph. when he gets a cough which doesn't clear up. He'll then get treated with IV antibiotics and three months of TOBI (nebulised). But there are risks with it effecting their hearing and kidneys. I'm not sure if we want to take those risks. Tobi isn't commonly used in Australia so I was hoping that in the states (or elsewhere) tests had already been done to determine whether it is safe on babies. Connor is only five months old and we need to make a decision before he's six months. Is there anyone else from Australia doing this trial or considering it? Thanks Kristy PLEASE do not post religious emails to the list. ------------------------------------------- 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 April 24, 2001 Report Share Posted April 24, 2001 HI there, ph has been on tobi since diagnosis (he cultured pseudo at that time). He was 15 months old. Mallory has been on it since she was about 16 months old and I think that has been on it since he was about 3. We have not had any adverse probs at all, and have even done blood levels to be sure it did not get into their blood stream (it did not) Just be sure not to use the pari star (the red one) as it makes the particles small enough to get into the blood stream (or pari says that, at least). Use the pari lc plus instead. Hope this helps Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2001 Report Share Posted April 24, 2001 ps, they can check kidney function and all that when they do ivs. They always check for that with my kids when they are on ivs. Yes, there are risks.....but each of us have to personally outweigh the risks of lung damage versus the risks of side effects from treating pseudo. With Mallory, especially, the benefits of IVs have definately outweighed the risks, and so far she has not had any probs from the ivs (or the tobi) and neither has , or ph from just the tobi (no ivs, thankfully). I guess we all have to trust that our docs do the right thing, and we know that our docs are especially careful to monitor for side effects. Also, they monitor the tobra levels while they are on ivs, to make sure they are not getting too much, etc. Take care Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2001 Report Share Posted April 25, 2001 Hi Kristy, You've probably already gotten dozens of replies to this, but here goes... and have both been on and off inhaled TOBI several times to clear up infections, since they were just about 6 months old actual age, maybe 3 months adjusted. I believe that inhaled TOBI doesn't carry quite the same risks as IV tobramycin, especially in the realm of hearing loss. They have been doing a study here in the States to see if 1 month on inhaled TOBI and one month off is beneficial, but my twins are not on this protocol, and they haven't had TOBI in several months now. They are both doing very well. hugs, mommy to Mick and Alli, 15 mo twins wcf (one year adjusted TODAY!) --- Kristy van Donderen wrote: > I want to know if anyone uses TOBI on babies or very > young children??? We've been asked to participate in > a study up until Connor is five years old where they > do routine bronchoscopies to check for pseudomonas > and staph. when he gets a cough which doesn't clear > up. He'll then get treated with IV antibiotics and > three months of TOBI (nebulised). But there are > risks with it effecting their hearing and kidneys. > I'm not sure if we want to take those risks. Tobi > isn't commonly used in Australia so I was hoping > that in the states (or elsewhere) tests had already > been done to determine whether it is safe on babies. > Connor is only five months old and we need to make a > decision before he's six months. Is there anyone > else from Australia doing this trial or considering > it? > Thanks > Kristy > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 have to try that, thanks Quote Link to comment Share on other sites More sharing options...
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