Help with Site Changes

[BrendaK]

Does anyone have any advice for making site changes easier for a 6 year old? Carson has been pumping for 1 1/2 years and we are using the Accucheck Tenders infusion sets. (The long scary needle that I manually insert.) We also use emla cream.

The other day we had to do an emergency site change with no emla cream and it was HORRIBLE!! I have been looking into using other infusion sets with an inserter, but I'm hesitant to change because the tenders work so well for us.

Even with the emla cream, though, site changes are rough for him. He hates me putting on the emla because it's slimy. (But he won't do a site change without emla, either.) He hates me taking of the IV 3000 patch that holds the emla in place. And he hates me taking the old site off even with the unisolve. Sometimes he even throws a fit about me putting neosporin on the old site afterwards.

I think a lot of the issues are psychological. He will sometimes start screaming before I even touch him. Sometimes, though, he does just fine. But we all just dread every site change because it's usually screaming for 15 minutes straight.

When he was a baby/toddler, he did FINE with all of his shots (4-7 shots a day). But when he was 4 (before pumping) he started screaming about every single shot he got. And this has continued with pumping. (I'm glad it's once every 3 days instead of 5 times a day, though.)

I would also like to not use emla cream anymore -- he has to have it on for 2 hours before it is totally numb and it just drags the site changes out forever it seems like.

I've heard people say they do site changes in their sleep, but I don't want to do that either. If he were to wake up and see what I was doing, it would be at least 2 hours of hysteria.

Thanks in advance for the advice.

[AmyMcCracken]

Brenda - we had similar problems with our 6 year old daughter. Shots were okay once she got used to it but when we switched to the pump in April we started with the fits. We too used the EMLA but still had problems. I never used the IV3000 for the cream because it caused problems when we removed it. I placed Saran Wrap over the EMLA. The EMLA held the plasctic in place as long as she wasn't too active. When I cleaned off the EMLA I hold ice on the site for 1-2 minutes. This REALLY helped alot. We also turn on a cartoon for her watch while we change the site. It seems to go better when we put the sites on her bum where she can't watch.

I talked to her and explained that it's not good for anybody to deal with these fits. If she wants to wear her pump (which she LOVES) then she cannot have fits when we change sites. I have noticed that she acts the worst if she's a little high when we change the sites. As for removing the sites we would let her soak in the hot tub for a while then sit in the bath. The water helps but we still use the UniSolve. The biggest problem is that it take SO LONG for a site change. But I again explained that if she wants to wear her pump she cannot freak out.

I understand how hard it is. There is nothing worse than having to fight with our kids to take care of them. I can't imagine having to go through 1 1/2 years of awful site changes.

Could you make a game out of it with him? Or offer him a prize if he goes through the whole process without a meltdown. My daughter loves popsicles so we sometimes let her eat one while we change her site. If she has problems she doesn't get one next time. I hate to say this but offer him allowance (so he can save for something he really wants) if he makes it easier for you. Sometimes you have to try anything to change the cycle.

You have Private Message me if you want someone to commiserate with. Take a deep breath and know that there are people who can relate with what you deal with daily. I hope the next site change is a little easier.

[bkfkmc]

My son is 6 and we use the Minimed Quicksets that do have the Quickserter. We do still use Emla because he refuses to do a site change without it, and I figure at this point I'll not mess with changing anything since he doesn't give much a fuss about the changes. I generally leave the Emla on for 30 minutes to an hour, but have done one after 15 minutes and of course he said it hurt because it wasn't numb yet. Even with this, he only fussed for a few minutes.

I am a person by nature who doesn't like change, especially if something seems to be working well. In your case though, I would encourage you to explore your options with other sets since the site works well while it's in, but obviously the changes aren't working well. If you find something that he likes better going in, it could quite possibly make everything less traumatic and still work very well for you. It certainly is worth a shot since you are having so much objection with every change.

I have done site changes in his sleep (still with Emla) and he did not wake up. I can understand not wanting to do that and dread the after effects for the next couple of hours. Have you tried using ice instead of Emla. We tried this with Braden but he didn't like it. If your son really dislikes Emla, he may prefer to try icing the site for a few minutes before a change.

It certainly quite possibly could be mostly psychological. There is a whole lot that has happened that he has no control over. This may just be him objecting to D as a whole. A new set may or may not help, but it might just be worth a try! Good luck and hope you find something that works for you all!

[kiwikid]

I'm one who does site changes while Rachel is sleeping - but it is always with her permission. She knows when it's site change night, and she asks in the morning if I've done it. If shes not in a really deep sleep when I start, she'll push the ice away so I know to wait a little longer. We don't use EMLA because she hates the sticky over it being removed.

The couple of times that I've had to do a change while shes awake, its a 2 person job. Hanging around Daddys neck and crying in his ear seems to make it bearable, and it keeps her still. Ice is nice and quick and its over. Getting it done and back into playing is the most important thing.

I hate the pschological aspects of this disease, wouldn't it be nice just to give them a day off now and then :(

[BrendaK]

Thanks for the help and ideas. We finally had a successful site change on Friday. I did the bribing thing, Amy. I said I would give him a quarter for every site change he could make it through peacefully. (He tried to talk me in to a dollar, but that didn't fly ;) ) I even had to lay down the rules like "you can say ouch or ow" but not scream at the top of your lungs. And it went VERY smoothly.

When we were finished Carson was SO proud of himself that he did it and EARNED some money. I didn't expect him to be so proud like that. I was proud, too!!

I don't know if this will work forever, but I'm going to try it again tomorrow. I mentioned to Carson today that he had a site change tomorrow and he got a big smile on his face. He was thinking about the $$. That shows me how psychological all of this is.

Maybe I'll up the allowance later if he agrees to not use the emla.

There are so many unique aspects of parenting a child with d. I feel a little weird giving an "allowance" for a site change, but on the other hand, I felt like he earned it. Thanks again for the help.

[AmyMcCracken]

Brenda - I'm so glad things went better for you. While it may not be the best way to get the kids to cooperate, "rewards" can be a great tool. These kids go through so much and have so little control over diabetes. At least now your son can see some benefits from a site change. I hope it keeps going smoothly. :p

[Hollyb]

Hi,

Way to go Carson! And you too.

An idea about the EMLA -- rather than asking him to drop it cold turkey, which is pretty scary, you might reduce the amount of time you leave it on for. You get pretty thorough numbing with an hour. WIth half and hour you can feel more but there's still a significant effect.

My son (14) did his Comfort changes without any numbing from the get-go, but found he couldn't make himself push the inserter button for the Quick-set without the EMLA. He used it for nearly half a year, and while I was hoping we'd only need the one tube to get him over the hump, I didn't bug him about it.

Then he found himself with his friends all waiting, having to do a set change in a hurry, and did it without the EMLA. A few weeks later, same situation. Now he can't be bothered with it. I guess my point is, it's maybe better not to rush a kid out of the EMLA until he's really mastered staying calm during the set change and it's become quite ho-hum. Little kids need lots of time to get comfortable with each step.

[Eoin'sMam]

Have ye tried chryogesic spray, it numbs the site in minutes isn't slimy but feels really cold, we use it for Eoin's (2 1/2) site changes and all he ever says is ow..that's cold!

[Hollyb]

Do you buy that in a pharmacy? I tried to find it when we started pumping -- sounded like a better option that the EMLA -- but nobody seemed to know what I was talking about.

[Eoin'sMam]

Hi Holly,

Yep we buy it in the pharmacy..but that's in Ireland maybe it's called something else in the States..it's Ethyl chloride..

Here's a link for you

Cheers


Lou

http://www.acorus-therapeutics.com/index_Page568.htm

[Brandon B]

Brandon use to use the Paradigm silhouette 17 mm we now use the mm quick set he loves this only 6mm in lenght not 17mm he use to dread site change day and now loves it.He is 12 yrs old.:)

[payam7777777]

Accucheck Tenders infusion sets. (The long scary needle that I manually insert.)
Maybe trying the sets that have inserters works better. How about MiniMed's 6mm Quickset? This is what we use and it's not very bad. Have you tried it?

emergency site change with no emla cream
In such situations at least use ice cube.

I would also like to not use emla cream anymore -- he has to have it on for 2 hours before it is totally numb
EMLA Brenda needs exactly 75 minutes to work best. Not more. And PLEASE keep using it.

[sammysmom]

I have to say that we use the tenders (mini, same as silouette or comfort) and they work great for our son. We switch between the tenders and the quick sets (luer lock)...My son does well with both sets and I would not give up the angled sets for anything. They do look intimidating, but once you get used to it, it is fine. We can only use the angled sets on his tummy...the 90degree sets always kink if we try to use it on the stomach area.....the endo office likes the angled sets because you can see the canulla......its just a personal choice......by the way, we dont use any numbing cream and have not had a problem. Not to say that numbing cream is bad, just that we dont use any. If my son started really fussing about the site changes though, I think that we might use the cream......


shannon

[BrendaK]

I thought I'd give an update since this post was originally posted about 6 months ago. We switched to using the Cleo which has an inserter and is much less painful. We use Emla about 75% of the time, but we don't have to leave it on for as long because the Cleo is much less painful. And we still give out quarters for each site change without a tantrum :) It's working great!! No fuss. We just can't do a site change when Carson is really tired. He gets too emotional.

[kel4han]

Man, you guys are freaking me out in deciding to go pump or not. Though I have asked before about the true issues with site changes, I dont know if I am so convinced a pump is worth it right now since we are only honeymooning. I can see maybe in the future as things get crazy. I am a number control freak, so the pump would benefit there for tighter control but I would hate to have these kinds of issues with a pump. :eek:

[Sam's mom]

The worst part of the set change for my son is taking the IV3000 off the emla cream on the new site. Someone mentioned covering it with saran wrap instead. I'd like to hear more about how you do this and any other suggestions that people have.

Thanks,
Jill, mom to Sam (3) dx 3-29-06, and Alex (1) non-D

[rickst29]

Press N' Seal works best, the side with the bumps is MUCH sticker than Glad Wrap. Some people can use just a small square of the wrap without ANY additional taping at all.

I've got old man's body hair and need to tape just the corners a little bit. I use Topicaine 4%, which is a SINGLE-INGREDIENT EMLA-like Gel. For me, it causes temporary redness while I let it soak in for 75 minutes underneath the Press 'N Seal, but this clears up very quickly. (I actually LIKE the redness, it allows me to more easily see the center of my numbed skin "target"). BTW, The FDA recently did a press release, in which they said that multiple-active-ingredient formulations (such as EMLA) are less safe than single-active ingredient formulations (such as Topicaine or LMX-4). That's why I prefer to recommend LMX4 over EMLA.
- - - - -
Now, my hints for use IN KIDS: If your child has any itching or a STRONG red color or any other strong reaction, switch to a DIFFERENT product. immediately. (I have only that SLIGHT extra-pink coloration, no itching at all, and in experiments to see how long the coloration lasts, I've seen that it clears up in less than an hour after I've wiped the 'Topiciane' off.) Also, kids have much less body mass than adults and are easily overdosed, be sure to use a very thin layer and spread it over an area now larger than 3/4 inch diameter.

Most important of all, and related to overdose risk, small kids have thinner skin and hardly EVER need the full amount of time on the label (60-75 minutes) to achieve strong numbing. I would recommend trying just 30 minutes, then 45 minutes before WIPING IT OFF.

You should always cover with Press 'N Seal, because: If the gel/cream is left to dry up in the air, the ingredients which carry it through the skin and down to the nerves evaporate. Keeping it properly covered allows you to use MUCH less. Press 'N Seal sticks to itself very strongly, I cut my pieces (squares about 1-1/4 inch on each side) with a very sharp scissors. I only need a tiny bit of tape on each corner of my Press 'N Seal patch.

Given correct waiting time and kept covered, the punch-in should be TOTALLY pain free. If you want to make your youngster "tough it out" by inserting into partially-numbed skin, or skip these cremes/gels completely, well, that's your right as a parent.... but *I* feel that kids in the USA are under-medicated for pain, and treatment of diabetes should NOT feel like punishment.

I was pumping for 5 years before I tried Topiciane for my infusion sets, I'm a big tough guy but that nasty pain on insertion is TOTALLY UNNECESSARY, I *love* using this stuff. And I am big enough to understand it-- you inflict that pain every 2-3 days on a 2 or 3 year-old, I think it can harm your relationship with your child.

(Some of our most expert CWD posters, however, feel otherwise.... and there ARE both overdose AND allergy risks with these products.)

[Momof4gr8kids]

We have never used elma. We used ice for the very first one, but Julia didn't like that so we never did it again.

Julia is 6 as well, and kind of gets nervous when it is time to do a site change. The whole time she knows it is coming she is antsy.

I let her pick the site, swab it with alcohol, and she says when she is ready for it to be inserted. We also almost always do it after she baths, or showers to keep routine. The exception to that is in the case of failure. Also, thye one time she did run, and resist I asked her if she wanted to go back on injections. Not as a threat, as an option. I explained that it was this, or injections. She chose to continue to pump. One poke every 3 days is better then 4-6 poke daily.
Take care, and hang in there. Jamie

[rickst29]

The worst part of the set change for my son is taking the IV3000 off the emla cream on the new site. Someone mentioned covering it with saran wrap instead.
Just to emphasize, I agree that IV-3000 is too sticky: it's made to STAY ON, for multiple days. Press'NSeal comes off real smooth, without pain or harm to the skin.

[Sam's mom]

Thank you so much for the tip! I am going to try it with tomorrow's site change.