port questions (central iv type), and using iv meds instead of oral

[carrotsprout]

i accessed dd's port for the first time today. got in on the first try...woo hoo! i didn't even know i was going to be doing it. when the nurse came out she said i needed to learn how. and that was that.

question 1:
numbing options? anyone ever used a j-tip on a port? we are using emla cream in a tube. everyone has a different opinion on its effectiveness and timing. ten minutes, twenty minutes, thirty minutes, an hour...good grief! seriously? so now i'm putting it on three times and i don't know which one is working, lol! and no one seems to agree how much to put on. the tube is tiny and we've used very little of it.

so here's my question 2:
dd has been on carnitor for quite some time. i hardly notice a difference. however, i see a huge benefit when she gets it iv-ly. quicker recoveries, and longer times between episodes.

have any of you ever heard of or tried scheduled carnitor infusions? we have a metabolic appt next week and i am selecting topics. i am considering asking about this. we are accessing once every three weeks. sometimes it's sooner, but if 3 weeks pass we schedule a flush. by the time we get the flush she seems to need another treatment anyway so we are just sort of settling into a routine that seems to be working to keep us living at home instead of the hospital .

so i'm hoping for a small infusion to be worked into the flush schedule. possibly in lieu of oral but that could be a pipe dream.

what i don't want to get into is adding extra accesses.

thanks in advance for any advice!

[coyotemist]

Whoo hoo for you!

As for the EMLA...I've heard 20 minutes is best, any more and it starts to wear off, any less and it's not full working yet.

As for question 2, outside of my realm of knowledge, I hope someone knows!

[anj_rn]

Depends on the actual brand. There are multiple brands now but all are referred to as EMLA (like Kleenex for tissue). The label should have the time on it. I think EMLA is 45 min, I know LM-max is 20 min. It works best if you put a good gob of it (dime size, but thick) under a piece of tegaderm, since you know where the port insertion site is it is easier. Usually after 3-4 months of port use, you will not need the numbing cream because the scar tissue does not have the same nerve endings.

Some people us "cold spray" on the site, but many kids do not like the feeling and if over used can cause skin damage.

[MotherWhimsey]

We use EMLA on my son's port and we put it on 30-60 minutes before. I don't think we've ever had a problem with it wearing off but I put a huge gob on there under tegaderm.

We do some infusions at home. We have a Cadd Prizm pump and it's pretty easy to set the actual infusion up, it's accessing that's the hardest part. So I don't see why it would be very difficult for you to do an infusion at home. The only reason I could think of that would make that impossible is if they needed to get labs while they were infusing. If they don't, then I don't see why not. I guess it just depends on your dr.

Congrats on accessing for the first time! That was a very very intimidating thing for me when my son first got his port. It'll never be so intimidating again now that you've done it once and it's just a really good thing to know.

[MotherWhimsey]

oh, and for whatever reason, with his last port, we never got to the point where the scar tissue made it painless. That port was put in his arm pit fat roll so it might be because there was a lot of tissue over it.

This port is only 3 months old so I don't know if it'll scar up or not. It's on his ribs, so it has a lot less tissue over it and hurts less to begin with.

[anj_rn]

Yeah, armpit less visable, but more pain. The ones just under the clavicle tend to scar up the best. IV infusions generally are much more effective than oral, since they do not have to go through the whole digestive tract. That is especially true for antibiotics. Most docs that I know are all about using a port if you have one, so usually do not have a problem as long as you are comfortable with it. Also, if your child can tolerate it, you can leave the port accessed (with a good dressing) for a couple of infusions (if you have more than one a day).

If labs become an issue, you can ask for a home health nurse to draw them (and then drop them off at the lab), or ask to come in and have labs drawn timed with an infusion (so you get less pokes). Most HCPs are willing to help children avoid pokes if they can.

[MotherWhimsey]

yeh, we can leave L's port accessed for a week. After a week we have to change the dressing and needle (so basically access it all over again from scratch). He prefers me to access him rather than the nurse at the hospital for blood draws, plus you have to wait for a special nurse and it usually takes forever, so I often access him and put on a dressing before we go for blood draws. Some blood draws you can do yourself and drop them off but a lot of metabolic labs you can't, so we've never done that. I think that if you're having ammonia, pyruvate, and lactic acid, they have to go on ice directly so they can't get dropped off. Since you said your dd had an appt with the metabolic dr soon I'm assuming meta/mito issue and so that's probably not an option for you guys either.

[carrotsprout]

Originally Posted by MotherWhimsey

This port is only 3 months old so I don't know if it'll scar up or not. It's on his ribs, so it has a lot less tissue over it and hurts less to begin with.

that's where dd's port is, too. of course everyone looks on her chest for it.

i'm glad i asked about the amount! i have been using WAY too little cream. i was using it more like lotion amount.

tonight we were going to dc, i had already flushed it and she had the tape halfway off. i said "hey, you need to get moving with that because you still need to do corn starch." dd stopped right away and said "nevermind, can i have some tape. we can take this out tomorrow and i'll have fluids tonight."

LOL!

[carrotsprout]

Originally Posted by MotherWhimsey

I think that if you're having ammonia, pyruvate, and lactic acid, they have to go on ice directly so they can't get dropped off. Since you said your dd had an appt with the metabolic dr soon I'm assuming meta/mito issue and so that's probably not an option for you guys either.

yeah, we're meta/mito with a goofy non-diagnosis diagnosis: primary metabolic disease. mk.

we've actually never done labs from home. we do infusions from home but they are just pre-crisis. we don't even use d10 at home. if she doesn't get better with d5 we go on to the hospital.

and yes, those three labs go to ice immediately. in fact, we've often had an extra nurse in the room whose sole job was to put those tubes on the ice and take them to the lab. although, i'm almost positive that's only on redraws.
for the record, those three tests are also skewed by tourniquets. i always let the geneticist (aka metabolic team leader) know which draws were with. (the pattern of alteration is mostly predictable, and sometimes it simply is not worth ten extra minutes to keep trying to get a stick without a tourniquet when you need to get the fluids going.)

[Jessmomto2]

For some reason for my son the EMLA needs to be on at least an hour.  WE have a 3 hour drive to get to his nephrologist's office so I put it on midway.  When I've run out, I can see a big difference because he will cry out vs when he has EMLA on we don't even have to hold him anymore--and he's only 2 3/4.  He's had this port for almost a year.