Challenges ahead - Humira and a fear of needles

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vjb

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My son, turning 15 in a few days, was recently diagnosed with Crohn's after several months in limbo trying to figure out what was going on.

After landing in the emergency room, 6 weeks after being out of school, we finally got an answer, and a bowel resection. He is thankfully home and doing much better now, but we are struggling with making the solution work.

He has always had a fear of needles and a general anxiety related to doctors/medical issues. Two weeks in the hospital did nothing to improve the situation. What has always been an annoyance though is now a substantial issue. The best prescription option that we have is Humira, and he absolutely does not want anyone doing it for him - he demands that he do it himself (which I think is the right answer anyway for him). We did the first self-injections last night, and it was truly horrible.

We've managed through distraction techniques for when other people are giving him injections, but does anyone have thoughts or suggestions on coping strategies when he needs to do this himself on a regular basis? We talk about detaching from the emotional chaos and watching it like an observer, but the reality of making that work has thus far evaded us. The psychologist recommended doesn't have availability for 6 weeks, and I don't think we'll last that long :sign0085:

Mom of DS, age 15, dx Crohn's Jan 2016
- Apriso started February 2016
- Humira started March 2016
- Multivitamins
- Small bowel resection, Jan 2016
 
Big hugs
Ds was 9 when he started humira .
He screamed
Things that helped
Www.buzzy4shots.com
Buzzy bee works well for blocking some of the pain and distraction
Talking about something that he really needs to think about
We use the syringe and i give the shot
Less pain and no "loud click " that makes people jump
That was how the old epi pen used to be so Ds who has had an epipen since age 4 really didn't want an autoinjector

Ice the area
Emla cream to numb the area
Put on a movie with headphone
There was a very good website for kids
Let me look
 
We use the same techniques - ice before and after the shot, doing the shot while watching TV, asking questions to distract, chocolate or a favorite treat after the shot. Buzzy helps with the needle pain - distracts the nerves - but does not helping with the burning of Humira (the actual medication burns).

Humira is a painful shot and many kids who don't otherwise have trouble with needles hate it. I don't blame your son! He's had a lot of changes to deal with in a very short time!

The psychologist is a great idea - can you have them put him on the cancellation list? My daughter was VERY against seeing a psychologist and it ended up helping a LOT. It does take time - it's not really a quick fix for most kids.

Is he doing the loading dose - 4 shots at week 0, 2 shots at week 2 and then 1 shot every 14 days? If he is, tell him it gets better. By the time he gets to 1 shot, it seems much easier than giving yourself 4.

I wish I had more or better advice - but mostly, they just get used to it. Once my daughters figured out it really helped with the disease, they were on board, though they still hated the shot. We used the pen and recently my older daughter has switched to the syringe, after hearing parents on here say how much better the syringe is. She says it is much less painful because she can control the rate of the shot.

If he isn't using the syringe, would he consider using that or letting you do it? I'm sure he wants to be in control, but if the syringe hurts less that might make the situation a whole lot easier. He also might be easier to distract if he isn't focused on giving the shot to himself.

Good luck!!
 
One more thing Ds psych said
To use the syringe but either let Ds injected or
Have him place his thumb over mine to push the syringe so he is in control
We do add lidocaine directly into the humira syringe to lower the ph and make the med burn less .

Ds typically has me push the syringe very very slowly and tells me to "stop" and the when to "go " again
Takes longer but he is the one in control so it works for him
 
Thanks for all the thoughts and support!

We just finished loading doses. I struggled a bit with the decision, but he had a colonoscopy/endoscopy scheduled at the same time that he was due to start Humira, so with the fear of needles, I really didn't want to start with 4 in a row (was afraid of it being so traumatic that there would be no recovering and doing it again). I asked the doctor/nurse to give him the first 4 while he was still sedated. The doctor wasn't very enthusiastic at first, but after seeing the level of anxiety that he came in with, said he understood and agreed it was probably the right way to go. Last night was the second dose of two - the first that he gave himself. I had hoped it would go better with him in control, but it didn't really turn out that way.

The syringe seems like an decent option, but it seems like it would require more control, so I feel like we would need to get past the anxiety attacks before we can really go that direction. He is pretty determined that he doesn't want me doing it (or anyone else), but I will talk with him about the syringe alternative.
 
Sometimes a psychiatrist can prescribe a small dose of anti-anxiety medication that can be given before traumatic procedures until the child learns how to deal with them. There are a couple parents on here whose kids have been given something.

My daughter also has issues with anxiety. She was given a small dose of Ativan to take before difficult procedures. In her case, it was MRIs and feeding tube changes mostly. She does ok with shots and needles, mostly.

The thing with anxiety meds is that they'll make the kiddo relaxed but they might feel a bit out of it, so I'm not sure he'd be able to do his own shot then. If it's the pen, he might be just fine (since all he has to do is press the button) but if it's the syringe, that might be harder.

Sometimes the anticipation is worse than the shot - we found that counting down from 5 helped. My older daughter had trouble pushing the button because she knew it would hurt. Then it would become this long, drawn-out procedure, while she tried to work up the courage to push the button. Eventually we made a deal -- I counted till 5 and if she couldn't do it on 1, then I'd do it just so that we didn't prolong it. It worked well for her - she did it every single time! You can also have him count backwards by 17s or something random and difficult to distract him. Or do long-division in his head. Anything really, to keep his mind of the shot.

Seeing a psychologist should also really help and usually a psychologist can refer you to a psychiatrist if necessary. In the interim, if you are really worried about him doing the next shot, perhaps the GI can either prescribe something or get you in earlier with a psychologist or psychiatrist.
 
My 13-year-old daughter is anxious in general, but is extremely anxious about medical procedures. Shots, IV's, even the TB test left her hysterical during her first hospital admission. I was feeling desperate until the attending pediatrician sat down with me and my husband on our last day in the hospital and recommended that we talk to my daughter's pediatrician about a psychiatry consult and anxiety meds; it was clear that my daughter wasn't going to be able to handle IBD treatment without some type of anxiety treatment as well.

We followed up on both counts, and ended up with prescriptions for Atavan and Prozac. These drugs shouldn't be taken lightly, but they have been life-changers for my daughter, given what she's had to deal with over the past year. We used very small doses of atavan before procedures (such as ng-tube placement, MRE's, and scopes), and also before her first few Remicade infusions. The dose wasn't enough to make her foggy, and it didn't take away all her anxiety, but it made it manageable. As time has passed, she has gotten less anxious about most of her regular procedures, and now she doesn't need atavan for much at all. I don't think she's had any, actually, in more than a year, other than right before a minor surgery in January.

Her prozac dose is also small, and it also doesn't take away all her anxiety, but it allows her to live her life without constantly worrying about her Crohn's, and without constantly thinking about procedures and treatments that are in the future.

We talk a lot on this forum about tradeoffs between risks and benefits with drugs, and in my daughter's case, we feel the risks of these meds are worth the increase in quality of life that our daughter gets from them.

Good luck to your son and your family--I know this is all so overwhelming at first. I hope that you can find ways to make the Humira shot tolerable for him.
 
My daughter is also on an SSRI. Our journey was a bit different though - she started seeing a psychologist who worked with kids with chronic illnesses. She was VERY against going but thankfully, her GI insisted and so M finally agreed.

It took a while, but she warmed up to her psychologist and eventually got used to seeing her. Now she reminds us to make appointments!

Cognitive Behavioral Therapy and talk therapy were VERY helpful. I honestly don't know where we'd be without her psychologist! But for M, they weren't enough. She was then referred to a psychiatrist and given an SSRI for anxiety and Ativan for acute situations.

It took about 6 weeks or so to kick but it has been a tremendous help. They are scary medications - SSRIs have a black box warning for kids and teens - and we did everything we could to avoid them. But eventually, it became clear she needed one and it really has made a huge difference.

Often kids do learn how to cope with this sort of stuff over time, because they have to. A psychologist can help speed up that process and teach them tricks to manage anxiety. A psychiatrist could also be very helpful, if your son needs one.

Going to your pediatrician to get in more quickly with a psychologist or a psychiatrist is also another way to speed things up. Sometimes doctors can get you in with specialists in days, if they think it is urgent enough.

Good luck!
 
Agree with the others on CBT. My son doesn't do well with needles either, but after a couple months of CBT with his therapist, he chose to do an IV straight on (no creme or j-tip) because he felt ready. Unfortunately, the nurse missed and blew the vein, but the point is that CBT provided him with the tools to give it a try.

Like Maya said, maybe your ped or GI can get him in to see a therapist sooner, especially if he's having issues now. Good luck!
 
I can't speak much to the anxiety issue, but I know that there are tips to relieve or even prevent the injection pain. The actual pain one usually feels from the Humira pens (what I take) is the medicine itself, not the needle. I find that letting the pen sit out of the refrigerator for at least 30 minutes before injection helps tremendously. Also, ensure you're allowing the alcohol wipe time to dry on the skin before injection. Lastly, I've found that the tops of my legs are the least painful. I squeeze the skin hard and lift up a bit when I inject. After my last injection, I literally thought it hadn't worked since I didn't feel a thing. But, once I stood up, I felt that little bit of soreness and knew it had worked.
 

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