ivs or inhaled TOBI?

[anonymous]

So, my 3 yr old daughter, Allie, cultured pseudmonas for the first time last week. Man, it hit us hard. I've seen someone else post that it feels like getting the diagnosis all over again and they were right. I guess I was naive in thinking she wouldn't culture this for a long time. Oh well.

My question is......should we do inhaled TOBI or ivs? There is a study that we can do and the point of the study is to find out which works better. I don't know what to do. Each one has it's pros and cons. I'm so confused. They don't know if it's in her sinuses or her lungs so she's scheduled for a CT scan of her sinuses on Thursday and a bronch on Friday. These will be her very first procedures and we are very nervous about them. Any advice and words of wisdom are greatly appreciated.

On a better note, Allie's first day of preschool was today and it went great!!! She didn't want to leave. I'm so proud of her.

Amy

 

[anonymous]

I am 28 years old and have cultured pseudomonas numerous times and have taken TOBI, Maxipim, Gentamycin.... you name it. Anyway, here is some advice that I think will be helpful.

1. Get a sputem culture (you've done that)

2. Have your doctor prescribe the medication that was shown to be effective in fighting the pseudomonas.

Your doctor should be able to look at the results of the culture and tell you flat out what needs to be taken and for approx. how long. Secondly, whether the pseudomonas started in the sinus cavity or lung is redundant. Why your doctor is putting CT Scans and X-Rays in the forefront of actually treating your daughter is suspect even if he/she is with the CF clinic (Mal-practice???).

Secondly, I have had doctors want to do a bronchoscopy, but when grilled, one doctor in particular admitted that a bronchoscopy was 99% inconclusive and the risk of a collapsed lung during the procedure is about 95% (which is why you have to sign a waiver before the procedure is done).

GET THE MEDICATIONS ADMINISTERED RIGHT AWAY!!! CT scans and X-rays are great, but there is no reason why your doctor cannot prescribe medication.

Sean 28/m w CF

 

[anonymous]

Recent studies are showing that TOBI with oral Cipro is most effective during the initial cultures of pseudo. I would call your DR and have her put on these ASAP. I can't imagine waiting any longer, it is just too much of a risk. According to the recent findings, it is very possible to get rid of pseudo if treated aggressively during the first signs. You can find info online about this treatment, it was recently decided that this is the best route to take.

I can totally relate to the blow of this news. We were SO UPSET to find out that our daughter had cultured pseudo in her first culture after her diagnosis (just over 1 year old). Thankfully, we treated it aggressively and we haven't seen it in a culture since 10/04 and there were no signs of it on a CT Scan done in 4/05 (this was done to make sure there weren't any spots hiding in her lungs).

I hope you are able to get things figured out for Allie soon and she is able to get rid of it ASAP!

Congrats on her preschool! That is a big milestone!
Kelli (mom to Sydney 2wcf)

 

[HollyCatheryn]

Over in the "Remember Us???" thread I just posted some things to consider about cipro and TOBI. Please go check that thread - I'm too pooped to retype at the moment. You can get a special nebulizer that is for inhaling through the nose in case the Pseudomonas is in her sinuses. There are also some very effective more natural things you can do to clear the sinuses. Check <A href="http://www.cfroundtable.com">www.cfroundtable.com</A> for this issue's focus topic. There was an article called "Going from Sinus Disease to Normal Sinuses" by Kathy Russell. She is 61 with CF and she atlks about some things she has done that have helped her get away from invasive procedures for her sinuses.

 

[anonymous]

My son cultured pseudomonas one year ago at his one-year-old check-up. I asked parents on these boards what their child did when they first cultured it. 8 of the 9 responses went for the IV's. But my child's doctor was adamant that we should try inhaled Tobi with Bactrim. We did. Jack inhaled it for 3 months straight. He cultured pseudomonas after one month but has had about 8 clean cultures since. I would not recommend the three month continues treatment. It is what I pushed for thinking we were being proactive and I knew that it was recommended for a friend of mines child when he cultured it. Anyway, my son now has bronchial spasms with Tobi, so we were not able to do the routine Tobi. Not sure what medicine he will use when he cultures it again.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[SeasonsOfLove]

Amy,

So sorry to hear about Allie culturing pseudomonas - I can still remember how distraught I felt when Coll first cultured it (at around the same age). My own opinion (which could very well be wrong!) would be to do IVs instead of Tobi. Coll was in the 1st Tobi studies years ago and can no longer use it (it always caused major bronchospasms in her and then she had some ear ringing).

Best of luck in whatever you decide - hopefully it will be eradicated!

 

[SeasonsOfLove]

Amy,

So sorry to hear about Allie culturing pseudomonas - I can still remember how distraught I felt when Coll first cultured it (at around the same age). My own opinion (which could very well be wrong!) would be to do IVs instead of Tobi. Coll was in the 1st Tobi studies years ago and can no longer use it (it always caused major bronchospasms in her and then she had some ear ringing problems).

Best of luck in whatever you decide - hopefully it will be eradicated!

 

[anonymous]

my daughter just cultured it almost 3 months ago was on tobi for 28 days and cipro for 14 and hasn't cultured it since. She is now almost 10 months but was 7 months when she cultured it. I had the same feelings at first then talking with a few cf parents and the doctors I felt it was ok she do good and the doctors said she did great. The only thing is they haven't done xrays or anything so she has an appt. the 27 so I will ask then. Katina(Mom of 3)
Ethan 9yrs. wocf
Keriona 3yrs. wocf
Saydee 10mon. wcf