First Dose of Humira before Christmas

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Pilgrim

Pilgrim

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Jul 24, 2014
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Hi again:bigwave:

Well, I have the liquid gold in my refrigerator (Humira), and H is set to have her loading dose this week before Christmas.

There is no nurse in the area trained on the medication. So, we will be working with a nurse from our doctor's clinic with call in type help from a Humira nurse.

I have gotten great advice in bits and pieces. I wanted to put it in one thread.

For instance icing the area: I talked to the nurse on the phone about icing the injection area, and she said that a lot of people do but that it's the med and not the needle itself that stings. So will it help?

How about distractions like music? I thought, well, if she ends up associating the music with misery from the injection...we could choose the soundtrack from "Frozen". :wink: then I wouldn't have to hear it ever again! Joking aside, though, does anyone use headphones or the like for a distraction?

She's a "watcher". I don't think I'll be able to get her to look away...

So, if anyone wants to reiterate advice or put it here, that would be great.

We are using the syringe and not the pen. She is 4.

The other thing I'm worrying about is that again the timing on this really stinks. She is just coming off of EEN to 50% EN starting today and I'm really concerned we'll end up in a flare before the meds work. She is SO HAPPY to have some food today. I made home made pizza, and she said, "I'm so happy Mom, I thought I'd never get to have pizza again." And she really meant it, poor thing. I don't want to keep on extended EEN until we see if the meds work. But, I didn't quite pull it down to 50% today, it was more like 70%. I might just keep on with a larger supplementation.

Anyway, that's where we are tonight. Thanks for listening.:ghug:
 
The med does burn big time.
Ice didn't help Ds but he doesn't mind the poke of a needle.
We have used spray , cream , buzzybee and ice nothing really made a difference .

He uses squeezy balls and the happy pill to squeeze during the injection ( syringe)
He also picks a movie to watch whatever he wants within reason.
No sound issues since its a different movie each time

Good luck
 
My Grace is a watcher and helper. She "helps" the nurse put the IV in. Crazy kid.
We always would do something special after Humira. She loves art, so we did painting for awhile, then onto cake decorating. That way she had something to look forward to.

I pray the shot goes well.
 
Ds does have lidocaine added to the Humira shringe to reduce the burn of the med
This made a huge difference
Most rheumos do this but Gi are less likely to know about adding lidocaine

May want to ask
 
Taking the med out of fridge for about 30 mins prior will give the med some time to reach room temperature and maybe not be so thick.

MLP mixes DS humira with lidocaine to help some it's a px the doc can give ya.

I don't know about the music, my son is much older and he wanted quite when we first started any type of shots, ivs and so on. But I can see where distraction could help, maybe her face movie playing?

There is also buzzy bee but not sure how well it would work since the pain is due to the thickness of the med.

When my son was small and terrified of vaccines it happened one day that while the nurse was trying to unlatch him from the door frame his pre school crush walked by well lo in behold all screaming stops he plops on the bench and gets the vaccines like receiving Christmas presents. Boys...a pretty girl gets them every time!

Good luck, I hope it goes well and you see nothing but improvement from here on out! Hugs!
 
We have the Buzzy Bee.
Grace doesn't need it any more but it did seem to help, at least mentally.
I notice with Grace that icing it ahead of time,
putting numbing cream 30 minutes before,
taking the syringe out early, only got her more worked up.
It got to the point I took it out and just gave to her cold.
She even said she just wanted to get it done.
Maybe that's just my crazy kid.
 
I asked the nurse on the phone about the lidocaine and she said maybe not the first time but I could talk to a doctor about a prescription for the future. She also mentioned that some people have used an emla (sp) patch to numb the whole area (it's the type of thing they use for stitches and iv's sometimes) but again I'd have to get that sourced somehow.

Clash - She's too young for a crush but maybe if her dad can walk by when she gets the shot. :)

Farmwife - good idea. Maybe if the nurse can get her to help. It's a little girl thing.

Oh goodness, MLP, I don't know about the Happy Pill. Maybe if I could hide it between injections or the kids would drive us nuts with it!

All good ideas. Thank you so much. And DJW you are always there with a word of support, you are one good person.
 
Ha C was 4 and had an undeniable crush on a girl in his pre k class. He carried her back pack to her bus, walked with her to lunch and would blush 4 shades of red at birthday parties when she would arrive. They "went together" from pre k to 2nd grade and then Yoo Jung moved away! Poor fellow was heartbroken!
 
I'm sorry Farmwife. I had missed your post about the cream which was higher up. I can see the same situation happening with my daughter, she has a similar personality where the anxiety of anticipation seems worse. She actually doesn't want to talk about the injections too much. We had a conversation in which I explained it to her honestly, and she asked questions. After that she's been not into the subject.
 
Ummmm, well by time it would have work she was so worked up that I can't tell ya. SORRY!

As brave as Grace was/is she always hated the shot.
However I never let her think she had a choice.
I would just get it over as quick as possible.
It was hard, especially when she was crying for me to stop
or just wait a minute. It was hard on me too. :-(
But had to be done.
 
I get it. When H was in hospital with the pancreatitis and it took 5 tries to get the line in and I had to hold her down while she was screaming and kicking and fighting ...well, I did it and she knew I had to.

I always hope (always in denial) that there is an easy way or secret trick that someone knows to make it simple. Maybe if I just think it to death...

Nope. Back to reality!
 
We did distraction - TV during the shot, chocolate/ice cream/cookies after (not sure if she's allowed that yet on partial EN?). M even ended up having a "Humira show" that she watched regularly when she did Humira - funnily enough she still enjoyed the show even though she hated the shot!

My daughters were much older 12/13 and though both hated the shot they understood why they had to have it and got used to it.

We always iced, because S tried it without icing once and said it was much more painful. Both girls are pretty thin, so we used their thighs. I've heard from some people that the belly is less painful but neither of my daughters ever wanted to attempt that.

I've also heard from several people that using lidocaine like MLP does really really helped their kids.

Good luck!! Hope it goes smoothly and she starts feeling better soon!!
 
Sorry. No Humira experience here but definitely give the bee a shot. That thing has worked wonders in the infusion center. The burning from the med might be a bit different but the Bee is supposed to block the pain in that area so maybe....

Also regarding coming off EEN. Our doc had O on a much slower schedule and a very gradual reintroduction to food. The first week it was plain boiled or grilled chicken and rice. Once a day...I think it was maybe 2 ounces of chicken and a half cup of rice. Then each week we added one or possibly two things. I think the gradual nature helped ease her system back into food and may help with keeping flares at bay. Especially since you will have a period of time where you are waiting for Humira to kick in. According to our schedule pizza would be 3 foods...bread, tomato and cheese and wouldn't have happened for a few weeks. My daughter was heartbroken when the doc explained the reintroduction because she thought "6 weeks hello cheeseburger". Also, as gradual as the food intro was so was quantity. First week 20% food, second 40% etc.

Good luck!
 
Good Idea CIC. I think I will follow your advice and pull back/simplify the food intro.

I'm as worried about that as I am about the shots.
 
When S was much younger, he had to have a very painful shot to extract fluid from his knee. As the doctor was doing it, I had S count backwards with me in multiples of three (starting from some random number like 57). It was just difficult enough that it forced him to focus on the 'task' and, when the pain was pulling him from the 'task', I'd prompt him and get him back on track. It really helped. When he had to do it again (or go for another painful treatment??), he asked me to help him 'count' again because it helped.

Counting backwards in threes would probably be too difficult at her age but maybe just counting in odd numbers or maybe a game where you name the story and she names the princess, and she gets a dime for each one she gets (ie the quicker she responds, the more she gets...)

Good luck! :ghug: It's not easy seeing your child in pain but try to stay strong, knowing it's going to help her. :ghug:
 
Also agree with CIC. When S reintroduced foods, there was a strict schedule and we gradually tapered down the formula over 3-4 weeks (and only tapered to 50% as he then stayed on 50% for a couple of years).

The reintro diet I've posted is the one I was given by Toronto's Hospital for Sick Kids - I'm sure I posted it on the Kids on EN thread... If you'd like it but can't find it, let me know.
 
Thank you! I will look for the resource from Sick Kids re the food intro schedule. That would be a huge help. I hate guesswork. I'm a bad guesser.

It went ok today. We had a nurse from our family doctor's clinic do the doses for us at the clinic. It was very painful for H, but having someone else doing it really meant it was over with quickly and very matter of fact (and I didn't have to agonize if I was doing it properly). I'm glad I could just sit and hold her. I think we will continue to do it that way until we are told we have to do it ourselves.

My kid is really sweet but she wasn't into chit-chat at the clinic. A nice older lady asked her if she was waiting for Santa Claus to come. Her reply (deadpan), "No, I'm waiting for the nurse.":lol:
 
I'm glad it went okay. :ghug: That's so cute re her response to Santa question. :D
 
Poor H :hug: it'll get easier - for her and for you!
I think I have heard that with the syringe to inject slowly, that way it hurts less. We've never used the syringe, just the pen, so can someone confirm whether that's true? my little penguin, farmwife?
 
Extremely slowly
We have ds tell when to stop and start .
It takes forever but much less painful that way .
 
The nurse that did it for us just popped it in and got it over with. And then did it again. We're using the syringe because she's little enough that the maintenance dose has to be half of a vial (when we get to that point). There's no way to do that with the pen.
 
We used emla but it only numbs the stick. The amount of time it took to numb just drug it out and caused anxiety and drama. My son thought the ice helped some. Glad 1st one went well.
 
What is this bee thing you guys are talking about? I am new to all of this and have never heard of it. Thanks !!!
 
We have one for my DD. It vibrates and comes with an ice pack. We have the lady bug. It's very cute. :)
BUT the nurses we've dealt with asked us not to use the ice pack as it will shrink their veins.


:ybatty::ybatty:Sorry, this advice was given when the nurse was drawing labs not for shots.:ybatty::ybatty:
 
Last edited:
Farmwife said:
BUT the nurses we've dealt with asked us not to use the ice pack as it will shrink their veins.
Click to expand...

We would put a couple marks with sharpie pen to mark a spot. Then ice like crazy... then when the veins shrunk and were not visible we'd still know where we wanted to inject. It seemed to hurt like crazy if we nicked a vein. This helped for us.

One thing I'd add...(that we did wrong I think) is if you add too many things: Emla numb cream, ice, mark the area, lots of talk...etc.. It makes the shot a REALLY big deal! Some nights we'd do all that and it made the shot an "Event" which then led to so much anxiety. When we got to Cimzia (2 injections) 2x a month and MTX 4x a month (total of 8 shots every month!!!) We started eliminating some of them. I did the MTX and I would just do it so quickly and he wouldn't have time to get all goofy :)
 
We did make a big deal in the beginning
Now he picks a show but I get all the basics out without telling him
So it's a 30 second thing tops
Breathing and letting him control the speed of the injection helps a lot
 

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