How can we recognize the need for a PICC line?

[anonymous]

HI There,
My 7 year old has been battling psedomonas and MRSA for nearly one year. His weight is okay and I sense his general health is also just okay, his cough has become heavy, often and getting him to spit up mucos, do treatments etc is a challenge. After noticing the last 2 weeks he has been extremely overtired, low grade fever and some blood strings in his kleenex, we went to our clinic and asked if it was time for a "tune up", He had only had the IV's one other time at age 5. I do not know if the doctors will put him on th Iv'S because I am recommending it or does he really need it? He has become allergic to Toby and although he started Cipro today, he has been on it so much I fear it is ineffective.
My son often complains of dizziness and stomach aches, headaches and just plain does not feel good. Certainly overtired as we are all!!! He cannot sleep through a night. I am concerned that IV's may not erradicate the psedomonas argulisa and perhaps cause further complications, am I being over cautious? Of course I want him on these if it means better health, but I certainly do not want him to have to go through such a process if is not truly necessary.
Any feedback would comfort me!!!!!!! Thanks
Murgie

 

[anonymous]

Deffinatly sounds like something needs to be done...those are symptoms of something starting if it hasnt already...cipro is good but most of the time not by itsself. Has the cf doc sent you to an ent? THe dizzyness and headaches sounds like sypmtoms of sinus problems as well. There are many different iv meds out there an combos that will help him...just cus he is resistant to one or two now doesnt mean that thats all there is.

 

[shamrock2]

Could it be high/low blood sugars?<img src="i/expressions/rose.gif" border="0">

 

[LindseyRose]

could be signs of diabetes....also IV's are pretty much a way of life for a lot of CFers. If I were you, I wouldn't be so worried about them; instead I would get used to them.

 

[anonymous]

Murgie,
You son may be a little sensitive to the Cipro. Has he been on it before? I used to get dizzy and nausiated when I was on it. Ask your doc about inhaled Amakacin. I don't know if it wpuld produce the same effect on your son as the tobra, but it can be used in place of TOBI to fight infection. It DOES sound like he may be developing an active infection, and it's best to nip it in the bud

 

[anonymous]

Ooops! I wasn't done....here's the rest:

Don't worry if he needs IVs, we all do from time to time, and they do make us feel better. Has he had a PICC before? They are really convienant. When I go in for a tune up, I get a picc and stay in the hospital for only a few days. They do nebs and airway clearance about 4x a day for maybe 4 or 5 days, and then I go home and do my IVs for another week or two. My home care company has the neat little things called self-infusion pumps. It's not a "pump" at all. It looks like a little water balloon about the size of a fist, full of med. You hook it up to your picc, release the lock and it flows in over an hour or however long they prescribe it to. I love 'em. I can stick them in my pocket and go to class.

Debbie
23 w/ CF

 

[Magerly111]

Going on IV's is necessary for a lot of different reasons. Sometimes a patient can have poor PFT's, bad x-rays showing infection, cultures, weight, fatigue, etc. Every reason is a good reason to go on IV's though. I have never experienced those many symptoms when I went on IV's, but after my treatment with them was up, I felt better and everything was back to "normal". PICC lines are very convienent, they don't hurt and you can't feel the meds going through your veins. I'd rather have a PICC for a couple weeks and get better, than to keep being put on oral/inhaled antibiotics with trial and error, and have the problem worsen. I've been on and off Cipro for about 9 years, and everytime I'm on it, it still prevails! As long as you're not on an antibiotic constantly, without breaks, you should be fine. Of course you can always become desensitized to them if they're not taken as prescribed, or even just from overuse. In my experience though, Cipro has still worked everytime. It usually comes along with something else (for me, TOBI), and there has to be other antibiotics out there in case someone is allergic or immune to TOBI. BUT, you should really talk to your CF doctor about this, and make sure your child gets all the proper tests done to see what is really going on inside him. It's better to get it when it starts than to keeping pushing it back.

 

[Kaitsmom]

Hi There,
My daughter was home with a PICC line for the past 3 weeks she grew pseudomonas and also has MRSA, this is her 3 PICC in her 8 years. She was on Azactam(???) and Tobi she was also taking bactrim , her PICC just came out this past Tues. her PFT"S were much better they were78% before antibiotics and now she is back to100%, her doc and I agreed that we thought maybe a couple more weeks of oral antibiotics and then back for more PFT's and X-rays just to be back to her norm. She is now on bactrim, tobra. and cipro and i can see a difference, something i have also noticed is that the other 2 times she had pneumonia she did not have MRSA and seemed to clear up in 2 weeks. I do not know really if this has anything to do with the MRSA or not, just kinda thought it was a little weird. I also think that the PICC line works better for my daughter when she has an infection rather than the oral antibiotics, then again i always want her treated aggressivly.

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

 

[anonymous]

Thank you everyone for responding. Sam has had the PICC line once before 3 years ago, I will now welcome this and be at ease with the process. Even though he will scream for a short time, I suspect he will agree the pic line is better than all the oral medications. This is such a comfort to hear everyones stories. I will request the medicine ball for sure, that one is great, I love the "stick it in my pocket and go to school", Cfers rock!
Murgie