Help for my son with CF

[anonymous]

My 11 month old son has CF. My wife and I are still very in the initial phases of the learning about this disease. Our son was diagnosed at 6 months and at that time a throat culture tested positive for pseudomonas. Our son was on Cipro and Tobi for on month then given a month off. Now at the end of the off month his culture is still positive for pseudo. The doc wants to put him on Tobi 1x daily for 3 months. I dont quite understand what it means to become "colonized" by bacteria, but i worry alot about it and this makes me wonder if we should be seeking out more aggresive treatment for our boy.

Any help will be genuinely appreciated.

 

[Mockingbird]

Tobi is supposed to be one month on an one month off.... If your doctors wants to put him on three months straight, I would question the doctor. Tobi's a powerful anti-biotic, so three months straight would probably do more harm than good. Also, pretty much all of us have Psudemonis now. It's not as serious as it used to be. What do your son's lung function tests show? The Fev1 is the important one.

On a side note, Don't put your kid through hell trying to cure him of his illness. I understand your concerns and everything, but take it from me, It's not exactly pleasant to be on so many medications. Cipro is horrible for me, and although Tobi does clear my lungs, the taste is disgusting and my throat goes to hell. And then there's the even heavier antibiotics, like Zyvox. The entire two-week period it gives me diarrea and dissolves all my energy. Just something to keep in mind.

Jarod
22 w/cf

 

[anonymous]

Ideally, tobi is recommended for one month on and one month off-once a person gets to the point of needing that. This is still just an infant, so I would still question the doctor for a 3 month period. If the one month dose didn't clear anything up, he should go for two months and re-culture him after that. If after the two months it is still not cleared up then the third month would be reasonable.
It's not that you aren't being aggressive enough, but somebody with CF is so much more suseptible to the common "bugs".

I would talk to the doctor about trying tobi for 2 months, you do want to be careful that he doesn't build a resistance to the medication though.

Julie (wife to Mark 24 w/CF)

 

[NoDayButToday]

Jarod's right, most CFers do become colonized by pseudomonas once an initial culture shows it despite attempts to eradicate it. It also is not the end of the world as it once was to culture it. My concern about using Tobi 3 months straight, aside from antibiotic resistance, is your litte guy's hearing. For some reason, I feel like reading that babies were particularly susceptible to the hearing problems and ringing in ears caused in some patients by Tobi.

 

[seasprite]

In colonization, bacteria have taken up residence in the respiratory tract, but are not multiplying rapidly, as they would in a infection. Not everyone with cf becomes colonized by Pseudomonas, but almost 30% have it by age 1, rising to 80% by adulthood. For various reasons having to do with the properties of the bacteria and the environment in the cf lung, Pseudomonas is really hard to get rid of once it has colonized the respiratory tract, although some people with recent colonization have responded sufficiently to aggressive TOBI treatment so that their cultures appear clear. Whether or not the Pseudomanas is really gone, or just reduced to a concentration too low to show up in the culture is not yet known -- nor do we know whether such aggressive treatment might eventually lead to TOBI-resistant bugs. I would be concerned about using TOBI just once a day; it would allow the concentration of the TOBI in the lung to fluctuate too much between doses, which could well increase the risk of antibiotic resistance.

Whether or not your child continues to harbor Pseudomonas, probably the best thing you can do to reduce the risks of outright infection is to make sure he gets good airway-clearance treatments every day. I don't know if the Vest is suited for kids as young as he is (can someone with an infant help here?), but if it is, I'd make every effort to get it.

As others have indicated, please know that the diagnosis of Pseudomonas colonization, while not a good thing (it does increase the likelihood that full-blown infections will take hold) is not by any means the end of the world. Our son also began to culture Pseudomonas when he was still an infant. We've been really careful about his respiratory treatments and have always encouraged lots of exercise, and so far it seems to have kept him in pretty good shape. He's 16 now, runs cross-country competetively, and can wear me and his dad down with his energy level any day.


Bambi, mom of Jordan

 

[anonymous]

Thanks for all of the info. Our son pulls on his ears alot the last month or so, we had figured it was related to teething, but now with all of your concerns about tobi and hearing it makes we wonder if it is something else. Thanks again.

BT

 

[anonymous]

Hello Everyone,
Our doctor only prescribes Tobi for Kait when she is sick and not always then. I have asked about the one month on and one month off because i understand that there are alot of CF patients that do it that way. We ( the doc and me ) feel that we do not want Kait on it for that long of a period due to other risk factors, ( resistance and i believe that it can cause hearing loss ) Kait is now 9 years old and has been on it 3 times. We do treat Kait pretty aggressively but try to use the stronger antibiotics when she is REALLY sick and hospitalized.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

P.S> Kait does culture pseudomonas and MRSA and is now being treated for strepp. She is now on Augmentin and has been on CIPRO before.

Kaitsmom
<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

My son cultured pseudomonas at his first birthday visit eight months ago. He was put on Tobi for three month straight. We have cultured him every month since his birthday. He was still positive for pseudomonas one month into the treatment, but has not cultured it since, thankfully. Now, however, he seems to have bronchial spasms when he takes Tobi, so had to stop the Tobi treatments. The three months of Tobi worked for my son, but he is now not able to use Tobi anymore when/if the pseudomonas comes back.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf

 

[anonymous]

My 24 month old had psudo, we did the month on month off thing twice then the doctors decided to get more serious. We did 2 weeks of IV antibiotics and his next culture came back negative. Don't be afraid to get a second oppinion. I found that out fast. Your baby is the important thing.

 

[tessa55454]

Hi,

Ask about the severity, or better put the range the pseudomonous is for your little one. Usually they have a scale 1-4 or something. 1 being the least growth, and 4 being the most. I usually have pseudomonous wondering around picking flowers just because it wants to. If I ever get rid of it, I don't really know. But, as long as it is tamed, that is the most important thing. To totally eradicate shouldn't be the focus, as long as you keep in tamed.

Completely look into the Tobi 3 month deal, that sound right. tobi is strong, a good drug not to abuse when you really need it. Don't hesistate to get a second opinion. I would not feel comfortable about having my child on it for 3 months. I only go on Tobi if my pseudomonous has gone in the 3-4 range.

ONe time I did a test and I decided not to go on a med's for a month. I wanted to increase the length and number of my vest for one month. I would then go in and get a culture to see what the results were. From just airway clearnace it went from that 3-4 range, to a 1! My doc has said the best way to not have an infection is to not let it live down there, move it on out! It worked.

I wanted to comment on what the mom said earlier about exericse; one of the best things you can do. When your little one gets older, find something to get involved, be it gymnastics, soccer, basketball whatever.. Keep those lungs and heart working well together.

take care and I hope this forum helps you out.

Tessa w/cf

ps I first cultured with pseudomonous when I was less than a year old, diagnosed at 9 months.

 

[anonymous]

Tessa, thanks so much for you reply. Ive been so worried about him getting pseudomonas at this early age. Ive read some of your other posts and they have all been informative. Our 11 month old boy has been on TOBI almost a week now under the docs orders for 3 months. He was on TOBI and Cipro for a month at 6 months old. We plan to contact the doc and continue to weight the pros and cons of keeping him on TOBI for 3 month.

I find it odd that our doctor has never ordered tests to determine which pseodo our boy has. When we asked him he said the culture was positive for pseudo but we would not know which type.

Thanks to you all for your replies.

BT

 

[tessa55454]

BT,

No problem. I really feel for new parents, it's just so much to grasp. You are trying to learn so much, while practicing it at the exact same time, so hard.

Ask about the amount of psuedo as well as the type. The amount is really something you should be focusig on. And if he has an infection and it's bad, get cultured monthly, see where you are at, and go from there. Doctors sometimes just like to write a perscription and send you home with it. I am not trying to be disrespectful to some doctors, there are some great docs out there; but you have watch it.

take care of you and your little boy..

Tessa 27 w/cf

 

[anonymous]

My son is now 27.He was the first CF person to earn his black belt in marshal arts years ago. We did pulmo aid therapy twice a day daily on good days by hand until as an adult he got the therapy machine. On some worst days six hours but only after years of therapy because the body has to get tough and you will put them in danger if they aren't old enough to tell you exactly how much pressure We used an outrageosly high calory diet with protein. He has the same in his lungs as your son and does use some of the same drugs. You can find it on the internet by typing in the name. By building strength over time it can change quality of life. The black belt was to help other CF people know that fighting to win can help and that itself was a driving factor in our lives. It as you know is far more complicated than this paragraph. Please email if you want more info. The therapy may NOT be right for your son I'm telling you what helped us NOT suggesting it is safe for you. They gave us no hope, predicted the worst then read about it in the Courier Journal and put his poster up in the CF clinic as proof and hope because fighting it did alter their prediction. Elaine email: mattingly@insightbb.com

 

[anonymous]

I have had CF since i was 15 months old. Since i think the age of 7 i've been on tobi... i take about 320 mg a day. i used to only take 160, but they uped it. I have no hearing loss.. or any real adverse effects.

Ashley 20 w/cf

 

[anonymous]

My daughter cultured psuedomonas at 26 months old this past March (2005). She was given 21 days of Cipro and 3 months straight of Tobramycin (2x/day). I asked the CF doctor yesterday about side effects of this as my girls are also on tobramycin one month on and one month off. She said that the inhaled amounts of tobramycin will not harm her at all. The amounts she is getting through the nebulizer 2x/day is not going to cause any of the side effects I asked about, most specifically, hearing loss. The doseage of the tobramycin she gets in the nebulizer is 80mg/2mL which she gets twice a day.

Our CF center uses tobramycin formulated for injection but uses it for inhalation which may be slightly different than the TOBI you are using formulated specifically for inhalation.

Hope this helps.

Mommy of two beautiful girls with CF (4 years old and 27 months)

 

[anonymous]

ashley, I am curious to know what you mean when you say "I have had CF since I was 15 months old", is that when you were diagnosed? Because it is a genetic disease, you either have it from birth, or you don't have it. Just wanted to clear that up for you (in case that's what you really meant), but moreso for the new parents who might read that and get quite confused.

Julie (wife to Mark 24 w/CF)

 

[Emeraldmirror]

i was diagnosed when i was 15 months...

 

[NoDayButToday]

Ashley, were you in the Tobi study? I'm only asking because I participated in the US trials too, but I was between 5 and 7 when they went on and I am four years younger than you.