Any Advice for Child That Receives Intravenous Meds Weekly

Updated on April 10, 2016
D.N. asks from Chicago, IL
8 answers

Hi moms. I know that many moms on this site have children with various special needs. I am wondering if anyone here has a child (or maybe knows someone?) that receives intravenous medication. My son is 4 yrs old. He is very high energy. He does understand about receiving his meds and we talk to him about it all the time, esp the night before and then later that day. He sees his older brother get his medication 2 times a week. They both do prophy treatments to prevent problems vs on demand. They have hemophilia and receive factor. He is not quite understanding of why he has to have it since he is only 4. though I have explained that it prevents him from hurting his feet and knee like he has had. There is no other way to administer so we cannot switch to a pill (a much as my older son would prefer). Because my younger son is so high energy, we have him on a high dose of prophy once a week. We have been doing this for some time, over a year. I am hoping someone has some ideas what we can do. Here is the problem: he screams and fights the nurse. You would think we were torturing him. It is very difficult to stick a vein when the child is pulling away and will not stay still. Taking him to the doc's office would get expensive and would cause transportation problems with getting my dd to school/picking her up/dad getting to work etc. The nurse that comes to my home is ready to give up. He really wears her out. We even tried wrapping him in a towel to try to stop the struggle. The nurse says he is getting worse instead of better. I need ideas! I do know that we have an option of installing a port but at 4 yrs old and as much as he jumps around and such, I honestly believe he would injure it and cause an infection or bleeding. Others have agreed with me on that as well. So if anyone has any ideas, either as a parent, nurse, friend of someone, please pass them on. I am open to anything (almost).
Oh, and Benedryl has never ever knocked out any of my kids so that is not an option.

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So What Happened?

I wanted to add a few things. We have had a different nurse come for a few weeks at a time. She comes when our main nurse is on vacation. We have tried to bribe/distract him with tablet play, Paw Patrol on the tablet, toys, sometimes the nurse even brings something for him that he can only have once done. We also hold him as suggested. He is very strong and if we hold too tight we may make it difficult for the stick or even cause a bleed (which is the whole point of prophy--prevention of any bleeds). When we talk to him about it, we tell him the nurse is coming and we want him to behave and let her take care of things. It is all before the actual stick that is the problem. Once he is stuck, believe it or not, he actually calms down and it is done and over within a minute. I do have a call into the clinic to see if the nurse can give suggestions.
We do go to events with the local hemophilia chapter, though as a full time working mom, it is hard to really get together with others. And unfortunately, the experience for some others is much worse than for my own. I used to talk to other moms more often and once I said my older son had no target joints etc, you could see them close off from me. We have actually been lucky so far.

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M.P.

answers from Portland on

I wrote several paragraphs and they"re gone. I agree with starting over with a different nurse not only because this one is frustrated but also to break the pattern.that's developed.

I suggest.you find a way to let go of the frustration and turn this into as much of a positive experience as possible.

Talk with him saying we're starting over. Tell him that you know he can calm himself. Tell him you'll use a therapeutic hold to help him get calm. Ask him how he feels about the shots and how you can help him get through the shots. Make him a part of the solution.

A therapeutic hold: hold him on your lap with him facing forward, cross his arms in front of him with you holding his hands, wrists or arms. Hold his left arm with your right on. Hold tightly. Cross your legs over his. Be calm. Say positive things to him in a helpful voice. Be sympathetic. "Shush, Shu shu, hold still, I know it hurts, this will be over quickly. You're such a brave boy. I know you're scared." etc.

I suggest practising the hold with him before using it to get the shot. Make practice a game. Be silly, have fun. Say, "I know we can do this."

Perhaps have him help tell a story about a boy who has to do a difficult thing. Perhaps draw picture and make it into a booklet. Make telling a story fun. Perhaps all of you make a story at the dinner table. Perhaps ask him to tell others his story. Perhaps include the steps to get a shot a part.of a story. Ask him what you could do to help him. Make him a part of the solution. Talk about his feelings. Give him an outlet to express him. Have him run, run, run, before or after the shot. Perhaps have him hit a pillow while saying such things as I hate getting a shot! I'm so angry. Let him decide what to say.

Read books together in which the character does a difficult thing.

Give him as many choices as possible. Right or left arm? Pick a shirt to be your shot shirt. If possible, let him decide when to have the shot. Let him be powerful as much as possible.

I suggest reading How to Talk so Children will Hear and How to Listen so Children will Talk by Adele Faber and ?

Both of you may benefit from a few sessions with a children's therapist. If possible, find one that specializes in health issues. A therapist may help you with the therapeutic hold.

Be firm in a kind way. Make positive statements. Once you get the shot,.you can have ice cream. I love to watch.you play and I want you to be safe, playing. You're the mom. Don't fight with him verbally or physically. You may need to "fight" to get him in a hold. Act as if you know he can do it. Fake it til you make it. No comments about past behaviour. If he runs off, wait patiently until he comes back. If he doesn't, go to get him. Stand patiently until he walks himself out or give the shot there.

4 moms found this helpful
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J.C.

answers from Philadelphia on

Wow, that must be h*** o* your son and you. I can't imagine having to watch my child endure that weekly.

Having said that, you are really not doing your son a favor by allowing him to throw a fit. You need to tell him to knock it off and hold him tight. Do not give him the option to squirm and carry on. He will be a much happier child once he understands he needs to behave while the nurse is giving him the IV.

One last thought... My daughter used to get monthly blood draws and sometimes more frequently when she was 10-11 years old. Although we switched arms every month her veins didn't have a chance to recover and it got more challenging to draw her blood due to the quality of the vein. I am wondering if your son's veins are just so beat up and his behavior is getting worse because it hurts him more each week. Perhaps a port is the way to go.

4 moms found this helpful
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A.M.

answers from Phoenix on

Maybe a therapy animal would help? I have a friend whose dog is a therapy dog and they had her right up on the bed with a child during one painful procedure. My friend said the mom was blown away by how much it helped.

3 moms found this helpful
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K.C.

answers from Los Angeles on

I am so sorry you and your son have to go through this every week. I have not dealt with this situation, so I'm just giving ideas, but haven't actually tried these things with my own kids.

First, if it is at all possible, I recommend having a new nurse come to the house. If the current nurse is really fed up with him, she may be putting out vibes (consciously or not) that further upset your son. If he senses that she is upset, it may set him off more. It is understandable that she's lost patience with him, but it is probably making things worse. Maybe a new nurse would help solve some of the problem.

Second, what can you bribe him with? A toy, a tv show, a yummy treat that he can have only after getting an injection without throwing a fit. Is there something that he just gets so excited about that it might be worth enduring the injection if it means getting the reward at the end?

Third, I am guessing you already know about this, but a quick google search brought this up: https://www.hemophilia.org/Community-Resources/Chapter-Di...
Maybe if you can connect with others in your area, you can both get advice and help your son see that he's not alone (and your older son too could benefit from it). I am sure your son is not the first child to endure such pain - maybe someone nearby can recommend a specific nurse or clinic that could help.

I really hope you find something that works. I can only imagine how hard this must be for your family.

3 moms found this helpful
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M.G.

answers from Portland on

I like the answers below - great advice.

My sister works on the pediatrics team at a clinic and also hospital.

If your nurse is frustrated and stressed, get a new one. Because you are probably stressed not just from the experience (sorry you're having to go through this and your son - hugs) but her being annoyed or telling you he's getting worse - is causing you to be stressed, and then that passes on to your son. So his anxiety over this now, if it's rising, is no doubt worsened because of the nurse.

I like the hold that Marda suggests.

Here's what my sister suggests. When they have to do needles or procedures, they work together so my sister will distract the kid. She says distraction is the best way. So they do everything from draw a little face on the child's other hand and make a puppet - or they have a special toy they bring out just for this, and switch it up from time to time, to make it fun (or at least more enjoyable). They use TV shows sometimes (have TVs in the hospital even), and they get the kid looking at these other things - not the nurse doing it.

So can you have a new nurse and either you or someone else be the distracter?

Or reward system - she often gives stickers, but if it's really painful or difficult for him, reward him with whatever - popsicle, or whatever - when it's done? Try to make it more positive.

As for the being hyper - what relaxes him in general? For example, would a show calm him down? Being read a story? Whatever you think would calm him. Do that ahead of time. Personally, in my own experience, talking about needles ahead of time - is a really awful idea here. My kids would get so anxious, and I have 2 that are. We don't. Our doctor told us not to. So we just don't focus on it. I know your son's ordeal is a bit more involved of course. But we've had procedures where the kids have had to be awake and have their ears have instruments put in them, etc. and we do the deep breaths (belly breathing), and focus on something positive - you know, anti-anxiety techniques. But my child with the instruments down his ear, he stared at the monitor - watching the procedure, and that's how the nurse got him through it. I thought he'd freak out, but it was a distraction.

I hope that helps. Not sure if it will - but good luck :)

2 moms found this helpful
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D..

answers from Miami on

Hey mom. Bless your heart, life isn't easy in your house. I don't have any expertise in this area, and I don't know that anything I say here would be helpful. I think that perhaps you may need to start looking at this as a behavioral issue. He struggles because he's allowed to and doesn't have an incentive to stop.

I can imagine how hard this is with a 4 year old, but hopefully there's some "currency" of his that will help discourage his antics. Like I said, maybe this isn't helpful. I hope someone can come up with ideas.

1 mom found this helpful
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V.V.

answers from Louisville on

Pediatric nurse here. I have a couple of thoughts.

Is your home health nurse using emla cream or cold spray to minimize discomfort? That could help.

Does it have to be done at home? Having something traumatic and painful done in what's supposed to be a safe place often increases anxiety, which is why hospitals utilize treatment rooms - they avoid painful procedures in the patients room. Maybe an infusion center would be the best option.

And lastly, there are all kinds of anti anxiety meds available. If your son's anxiety is putting him in danger of physically harming himself, speak to his doctor about getting him something to give prior to being stuck. A little Ativan or intranasal versed could take the edge off.

Also your home nurse's behavior/comments are totally out of line. Please speak to your agency and get a new nurse. I'm sure your child is picking up her anxiety and exasperation, which is exacerbating is fear and anxiety. Your nurse should exude calm and competence. Nothing else.

Best of luck.

1 mom found this helpful

E.J.

answers from Chicago on

What a stressful situation!

My pediatrician gave me the advice to teach my kids that there is no option to taking medicine. Meaning to teach them that taking icky medicine is a part of life. Do it, get it done and move on.

I think you've done your best to make a horrible event as good as possible, but the reality is that this is a lifelong condition that he will have to learn to manage.

Unless he just started getting this medicine for the past month or so, this medicine is not a surprise. It is not something new he is adjusting to, it is something he is trying to control and the only part he can is his ( and your alls) reaction.

So..normalize it. Make it a non-event. Make it a fact of life. Stop talking about it (he knows he sees his brother). Stop bargaining. Stop building it up.
Nurse comes. Medicine. Done.

I'm not trying to make light of this, but as Doris Day kinda said, he is making this a game and neither you or the nurse can win. This is not an acute illness, it is a lifelong condition. Take all the bribes away until he behaves when he gets his medicine. Turn the tables so that he earns the rewards by being responsible (taking medicine without a fight) each dose. Then two doses....and so on.

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