Needle phobia -- any suggestions?

My son, nine in a couple of weeks, was diagnosed nearly seven years ago. His only treatment has been IVIG. When he was little we had to hold him down to put in the IV and to force Tylenol; over time (and with Tylenol Meltaways!) it became easier -- even easy sometimes.

He was hospitalized last January for a five-hour nosebleed -- he got an infusion and had to stay overnight; we usually go to a clinic for his treatments. In addition to getting the infusion, he was sick and miserable (fever, headache, body aches -- the virus had caused the platelet count drop which in turn caused the nosebleed) and couldn't sleep.

He now associates every medical procedure with the hospital (it took a half-hour to get a throat swab to rule out strep a few weeks ago). He's totally resistant to getting stuck, although he'll get a fingerstick without complaint. Even after an hour with an entire tube of EMLA on each arm, he freaks when he sees the needle, folds up his arms, and cries. He's too heavy to hold down, and that makes it more traumatic anyway. He's been known to run around the office and hide. We're going to try guided imagery and relaxation techniques, but:

Has anyone else dealt with this? How did your kid finally end up cooperating? I'm terrified his count will drop without our knowing it (he's not always symptomatic), and then another catastrophic nosebleed will land him in the hospital again.

Sorry so long, but I'm at wit's end.

Hello, so sorry to hear about your sons phobia. My son was only diagnosed just under a year ago but we have had 4 weekly bloods and he has got to the point that he now says "don't let them give me a needle please". He gets his arm frozen the creams give him a skin reaction. I am totally honest with Zac and only tell him on the morning of his blood test and we have explained even at this very young age that he has special blood so he has to have these tests done. Can he have hypnotherapy for relaxation my daughter had this for a dental phobia it is amazeing the results.

Hi

Your post makes me so glad that we don't have this problem; it must be horrible for you and your son.

My experience is very limited and I am not sure it will be much use, but I find that thumb pricks are much more acceptable to my son than drawing blood from a vein, so he hardly ever has anything else now. Also we found that EMLA cream made things worse; my son says that pain and the anticipation of the pain from getting the plaster bit off is actually worse than the pain of the needle. In the hospital, they always have a nurse with a "Where's Wally?" book that demands lots of concentration on the book rather than the nurse with the needle on the other side!!

Other than that, we ALWAYS go for a cola or a McDonalds or something after he has been to the hospital, and that seems to help!

Hope you find a solution

Ali

Right from when i was little, i never had problems with having blood taken, probally cause i have had so many done right from birth, i got used to them quickly, but like Ali has said, if you try to take their mind off it by giving them something else to do, that may work. I always used to get a teddy bear or a magazine afterwards as well. I also found the EMLA cream never really worked either, maybe thats the trick lol, they want u to feel more pain from the paster being peeled off so that u don't notice the needle.

I honestly hardly ever feel the pain of the needle anymore, The one i had the other day i didn't feel at all. I find I actually have more trouble with finger pricks then drawing blood from a vein, I find those are more painful then a needle.

Other thing is i never look when they put the needle in, i can look once it is in, but never look while it is being put into my vein.

For the blood draws (not for IV treatments), some folks swear by the "butterfly." It seems to be a finer-gauged needle, with two wing-like things on it (maybe sticky, to hold in place?). My kid has only had that once, and said it was a bit more tolerable than the regular IV draw. She generally gets her CBC by a finger stick. Other than EMLA, and calming techniques, I can't offer much on the IV treatment sticks. Is there some calming pill they can give him that won't make him so sleepy you can't later get him to the car? I hate giving kids woozy meds if they aren't needed, but you may need a bit of extra assistance in getting him over the needle anxiety. My kid tolerates finger sticks, but for the IV draws or IV treatments, she gets the shivers as they're about to stick. I've had to crawl up onto the bed in the hospital, and sort of coccoon her until it was over.
Norma

When they take my blood, they usually use a butterfly, it is so much easier and it doesn't seem to bruise as much cause it is a finer needle.

I don't have many suggestions since Caitlin does really well with getting blood from her arm. She acts like she doesn't even feel them and went through two years of Nplate injections as well. Our nurse that draws blood is excellent though and always gets it in on the first try. When there is a sub, it's not always as good, but Caitlin is used to it. They have a tv in the room and a trainset that goes around at the top so many times the younger ones are distracted by that so they don't realize the needle is in until it is over with. Would a portable dvd player with a new movie distract him or something that he loves afterwards motivate him to go through with the sticks without drama? We've always done positive rewards even though Caitlin does well with them where she gets to pick where we go get lunch afterwards or some special dessert that evening, etc.

He literally gets hysterical. Rewards don't work, unfortunately. This not a rational response. He seems not to be able to control it at all. I spoke yesterday with a social worker who does hypnosis work with kids and adults and has worked with clients with needle phobia. That may be the answer, but I don't know.

It's very interesting to me that a fingerstick doesn't bother him but an antecubital (crook of the elbow) stick does. Maybe the social worker can use that somehow.

Thanks, everyone.

We've had the exact same experience with our son - hysterical, pulling his arm away, etc. The problem started because Brady has very difficult veins, so there was always lots of poking before success. We would use the Emla cream until we figured out that it was making the situation worse - actually causing Brady's veins to shrink and making it more difficult to start an i.v. Brady always gets finger sticks for blood draws, so we only have to deal with the fear when he's getting a treatment. Luckily, he has needed fewer and fewer treatments over the years, so it's less of an issue.

What we've found that helps: they always use the smallest gauge needle possible - they say it's the one they use on newborns. They tell Brady that the stiller he is, the easier it will be to get the needle in. They come in and "look" for a while before they ever attempt a stick. We get Brady's treatments in a clinic that is associated with a major teaching hospital. We actually schedule his treatments around the schedule of a sedation nurse who is phenomenal. She is the only person in all of Brady's years of dealing with this who can actually get an i.v. started on the first try. That has been the biggest difference for Brady - that he knows he isn't going to get poked six or seven times without success. It took us a while to find her, but once the practice realized how difficult Brady's veins are and how upset he gets, they wanted to help and offered several people until we found this one nurse who is exceptional. When she's ready to try, Brady always asks to count first, so he counts to three (it gives him a little control) and then she tries. We also do relaxation breathing with him before they come in and during the start of the i.v.

It's still traumatic and we avoid treatments as long as we can, but it is much less traumatic now than it was when Brady wazs younger.

Good luck - I feel for you. You'll find something that works.

Beth - mom to Brady (age 13, diagnosed 1/18/02)
last WinRho treatment 12/16/08

Poor little mite! Ive had/still have a needle phobia for as long as i can remember. I found the emla cream to cause more pain than without it too so dont use it anymore. When i had the BMB i had to be sedated and panic attacks to get the canular in. Im ok now with blood tests but can not go to the dentist as i will freak if they come at my mouth with a needle. It sounds as though your son goes into flight or fight mode with the anxiety and fear. If this is the case it can take 90mins to get through to him. Can they not give him a pill to help him go woozy beforehand?
Good luck with him
Julia

The last time we were able to get the IV started (October), it did take 90 minutes, and he was quite proud of himself once it was in. We've tried several times since in order to prep him for his nose cautery, and he can't remember what it was that allowed him to be more comfortable. Unfortunately, the child life specialist can't remember either. I should check his chart to see if it was documented.

I'm beginning to think that sedation is the only answer, at least for now, but they don't do it at the clinic in case there's a problem. He'd have to have the infusion at the hospital so there's a team on hand just in case.

This is my plan for now:

Guided imagery on an iPod (done by his therapist, who he loves and whose voice he knows well)

If that doesn't work, a session or two or three with the social worker who does hypnosis work

If that doesn't work, admit him to the hospital and sedate him slightly so he allows the infusion. Stay overnight and have the cautery done in day surgery and go home a few hours later.

I'd like to see if the other methods might work first since we need a long-term solution, and sedation doesn't seem like the best option long-term.

I feel so bad for him, and I'm terrified of another significant nosebleed. ITP parents understand the fear and the unpredictability of all this. It's so hard.