Information Overload

[Visual Acuity]

We had our first GI appt. So much to know about and learn. It’s all so depressing, but I’m really trying to think positive.

They are going to put A on Humira & Methotrexate (MTX?) Shots for both meds. I’m really scared of the shots (with his Autism) hoping that he will understand why we’re hurting him. I’ll tell him each time that it’s so that he can feel better, I don’t know if that will work though. Any tips? Not sure when he'll start, as we’ll have to wait to hear back from insurance, less than two weeks I imagine. Just in time for the holidays.

I’m wondering how many shots he will start with. Adult dose, or children’s? Is there a difference between the adult dose and children’s? Or does everyone start out the same? He only weighs 127lbs and is 6’2” (I really hope he can start gaining weight) I guess I’ll find out soon what he’ll be prescribed. All this waiting is frustrating.

Now I’m going to go join the support groups for both meds. Thank goodness I have here, otherwise I’d be a complete basket case. I’m already insane so no worries there.

 

[kimmidwife]

With his weight and height they will probably give him the adult dose. They usually calculate it with weight and height. Ihope it works for him and he starts feeling better!

 

[FrozenGirl]

Humira has a standardized dose, its just one shot. Generally every 2 weeks. MTX is also one shot once a week. If he has issues with the MTX you could ask to switch to oral MTX. It can have issues with absorption but if you son really struggles with needles it might be worth it.

 

[Maya142]

Humira is 40mg every other week. It is a painful shot. It burns quite a bit. We ice before and after the shot and do it while watching TV so my daughter is distracted. Both my girls have been on it and hated it at first but it did work and they got used to it.

MTX is a pretty painless shot. It has a tiny needle and both my girls gave it to themselves. MTX can cause nausea and fatigue but there are ways to counteract that -- Zofran and Folic acid both help.

Good luck!

 

[malorymug]

Hi. All of this *IS* super overwhelming. It takes time. It will get easier.

 

[Mehita]

In your sig it says he has the cognitive ability of a two year old, but loves the iPad. Maybe you can find some Humira videos on how the shots work and help?

MLP adds lidocaine to her son's Humira. That might be an option?

 

[my little penguin]

I will post more later
look into buzzy4shot.com
The bee is a distraction tool to reduce pain
Of injections

 

[my little penguin]

Ok
DS started weekly allergy shots at age 4
Things that helped with those
Use the iPad put on a movie - new to him with headphones so he is distracted during the shot
Get buzzy
Elma cream which will numb the skin so he can't feel it
Freeze spray works faster but sometimes burns
Pull humira out early to give the shot so it's room temp
Call my humira to see if a few hours is ok
From what I have heard that lessens the sting
Haven't called yet
Add lidocaine to the humira syringe
DS Rheumo prescribed lidocaine to add directly to the humira syringe so no extra stick
It lowers the amount of burn from the med itself
Think wasp sting that is held in place for 10 seconds
With lidocaine it's much better
Room temp much better etc....
Slow push of syringe much better

Mtx shots don't burn just needle stick .
Ask him questions ( not yes or no ) that he has to think about to answer you
This process lessens the pain felt .
Things to squeeze a favorite stuffy
Counting through the pain
It really does last all of 10 seconds tops

 

[Maya142]

We are big fans of buzzy here! It works great for IV's and MTX. Less well for Humira since it's the medication that burns but adding Lidocaine to it AND using buzzy might really help.

 

[CrohnsKidMom]

My son was on MTX injections. Distraction helps. If he loves the iPad, let him play his favourite game or watch his favourite video while you do the injection.

 

[Visual Acuity]

Yes! Thank you thank you thank you! my little penguin! This is so awesome, just what I’ve been hoping for. I just ordered buzzy, What a great idea! and I will call up the doctor for the EMLA Cream. Thank you again SO much!

Everyone that suggested a new movie on the iPad, what a great idea. I’ll save some new tv episodes from iTunes too. A new movie for the first and second round for sure.

Thank you all of you, for your help and ideas! I honestly don’t know where I’d be without it.

 

[my little penguin]

Use head phones for the movie
This was the magic for DS when he was four -and had to get shots
The allergist couldn't believe it and purchased a DVD player for the dept with headphones after that since DS was their youngest allergy shot patient at the time