PICC line

[mdmom]

My DS14 (DX with Lyme, Babesia, Bartonella and PANDAS) does not seem to be responding to Lyme and co-infection treatment as well as my DD12. He is losing weight, looks pale, is lethargic, is not in school, and just had another PANDAS episode after a mild cold. LLMD said his bacterial and possibly viral load (in addition to parasites) is most likely very high and we may be considering a PICC line in the next few months. Theory is he has had Lyme most of his life and PANDAS since age 4. Lyme and co-infection treatment started 6 months ago.

 

Ironically, this will not be his first PICC experience. At age 4, he had a ruptured appendix and had a line put in for 10 days of IV abx.

 

Can anyone share their experiences - good or bad? Would like to make an informed decision about this.

 

Thanks.

[LNN]

You can PM TPotter - her son had one over the summer I think. My only experience is for Pex, which was 3 days in the ICU. So probably can't add much, since you've already had a similar in-patient experience.

[tpotter]

My DS14 (DX with Lyme, Babesia, Bartonella and PANDAS) does not seem to be responding to Lyme and co-infection treatment as well as my DD12. He is losing weight, looks pale, is lethargic, is not in school, and just had another PANDAS episode after a mild cold. LLMD said his bacterial and possibly viral load (in addition to parasites) is most likely very high and we may be considering a PICC line in the next few months. Theory is he has had Lyme most of his life and PANDAS since age 4. Lyme and co-infection treatment started 6 months ago.

 

Ironically, this will not be his first PICC experience. At age 4, he had a ruptured appendix and had a line put in for 10 days of IV abx.

 

Can anyone share their experiences - good or bad? Would like to make an informed decision about this.

 

Thanks.

 

Diagnostic radiology inserts it while the person is anesthetized (not put to sleep.) Takes about 1/2 an hour to insert. I did absolutely nothing to the PICC line, except that he could not get it wet...including sweating (that was VERY tough over the summer, and finally proved the demise of the treatment, because it got sweaty one time, and he was starting to get skin breakdown.) He had almost 2 months. Homecare brought the meds, and showed me how to do it (I used an infusion company that had experience.) It really helped a lot, but we couldn't continue both because of the eventual skin breakdown, and also because he developed severe reactions to flaggyl and then azith (neither of which he had had when on orals), so we were stuck with just using cleocin (which was definitely helping, but he needed more than one abx.) It was a a lot of work...first round was every 6 hours including during the night. Then we got down to 3 times a day, but that meant I had to cut work short, and go get him at school...hook him up, and drive him home while he was "infusing" (it was the end of the day.) He couldn't go to camp, and refused to get together with friends, because: "what if they saw it?" But, I would definitely do it again if necessary. There's no question it saved his life at that time (he was very, very sick...we had no other options.)

[MichaelTampa]

My doc does things a little different, something that goes in the arm only for about an inch inside there, and it was used once daily, flushed before/after use in the morning and also flushed in the each evening. Then after a week it is taken out and a new one is inserted. The nurses thought it was butchery to keep having one inserted once a week, but the doc thought the risk of the other way developing infections was too great. This is just how this doc does things, nothing to do with me in particular. The insertion process took about 5-10 minutes (mostly prep and then taping it down, actual insertion, 15 seconds), no anesthesia was used, definitely felt worse than drawing blood but was not horrific, at least to me.

[911RN]

My doc does things a little different, something that goes in the arm only for about an inch inside there, and it was used once daily, flushed before/after use in the morning and also flushed in the each evening. Then after a week it is taken out and a new one is inserted. The nurses thought it was butchery to keep having one inserted once a week, but the doc thought the risk of the other way developing infections was too great. This is just how this doc does things, nothing to do with me in particular. The insertion process took about 5-10 minutes (mostly prep and then taping it down, actual insertion, 15 seconds), no anesthesia was used, definitely felt worse than drawing blood but was not horrific, at least to me.

 

Michael,

 

This type is not truly a PICC line (Peripherally Inserted Central Cath) as mdmom was inquiring about. The type you are referring to is called a "midline" catheter. It only looks about an inch long going in- but, actually, goes up more than an inch- can go up about 6 inches. There is a polymer in the catheter that makes it sorta grow and stretch out longer once it is in the vein. Sometimes this features works well and other times it does not.I used alot of these in the late 90's in Home Health.Reportedly, they could stay in place for up to 6 weeks but there was an emergence of issues and folks started getting site infections/ occlusions or they had difficulty removing if left in for that long. Resulted in broken caths requiring surgical removals etc. Also if polymer didn't unwind/uncoil and stretch out in the right fashion they would get kinked up in the vein making it difficult for infusions. They backed the time down to about 3 weeks. For this reason, they fell out of favor for "long term" infusion therapy. Seems like your doc backed it down to one week with good results. Which, seems reasonable for adult with good, viable vein supply etc. Children/parents may not be so keen on weekly IV midline changes??

 

Midlines are not used as much anymore but they certainly have a place for short term infusion therapy. And, like you said- there is much less risk for infection- not going into the central blood stream. Picc lines go peripherally into central. Midlines just stay in peripheral. For a few weeks of therapy- I would say midlines are ideal. Going beyond that- then a PICC is the way to go. Not that PICCs are problem free- still risk of infection etc. but less problems with occlusions and they tend to go the distance for 6+ weeks of therapy. Often, folks keep PICCs in longer and then you risk difficulty removing them just as with midlines. Get imbedded and diffcult to remove. Requires surgival removal, as well.

 

For really long therapy- beyond 6 weeks- I'd opt for a mediport. More invasive in the beginning but can keep it in for 2+ years. Less risk of infection if treated properly, less pain, can draw blood from it but it has to be surgically implanted/removed.