Jump to content
ACN Latitudes Forums

IVIG coming up soon...questions?


Recommended Posts

Hi, I posted update recently on my son. Doing this post to ask questions about first IVIG infusion. I believe it will be over 2 days in office of Dr. L. I hope that they infuse it slowly over 8 hours as my son is so sensitive.

 

I know to keep him hydrated, to ask for antinausea meds just in case.

 

They order sheet says Tylenol but I don't do tylenol due to glutathione depletion. I plan to ask if we can just use Ibuprofen to ward off headache/treat fever, etc. I hope to just premedicate with it ahead of time.

 

She also mentioned sometimes they premedicate with Benadryl maybe to just keep him calm for IV/infusion.....have you all done this?

 

We also get to keep heplock from first day....actually this is making me more nervous than anything else as to keep that in is going to be a challenge. He cannot stand a bandaid on after blood draw for more than 30 seconds. I can do this. I can do this. I will find a way to keep it in.

 

Thanks for any hints/reminders of what to do/ask for during a first time IVIG.

Link to comment
Share on other sites

My ds just had ivig with Dr K a couple weeks ago. We pre-med with tylenol and benadryl. I'm sure you could substitute ibuprofen for tylenol, check w MD. The benadryl helps relax and helps prevent allergic reaction. My ds had sensory issues and wanted the heplock out the 1st day so we took it out and just restuck the next morning. The side effects were worse the 2nd evening, vomiting and severe HA. he did require steroid. I also had some zofran which I gave for nausea (w Dr's permission) which really helps. problem is my ds does not drink alot so hydrating him was a problem. But he was good by the am after ivig, all side effects gone (I'm sure because of steroid). Bring some reading material!!! Good luck!

Link to comment
Share on other sites

The doctors seem to have their own preferences and I know through these boards that doctors do not treat their own patients the same way each time. I'm sure they tailor treatment for your child and will further tailor on subsequent treatments as needed.

My son's last IVIG though....

 

Solu Medrol in the IV on day 1 (form of prednisone)

 

Benadryl and ibuprofen about 1 hour before starting the procedure and every 6 hours during the next two days of the procedure. If needed, that can continue through the night but my son did not wake up with headaches so I let him sleep.

 

Saline drip to keep them hydrated along with fluids throughout the day. My son would not drink much the first time through but after vomiting like crazy for about 12 hours starting at the end of day two he's done a much better job since. :D

 

We can use Tylenol in addition to ibuprofen but we've not needed to.

 

Starting the day after the procedure, prednisone and continue the benadryl and ibuprofen for 3 days. I'll be honest though, I tend to stop all of it as soon as any hints of a headache are gone. This last time, that meant I stopped the day after the procedure.

 

Here's another heads up - with the saline IV, plus the IVIG, plus drinking, be prepared to visit the bathroom fairly often. My son's OCD means I'm still providing some help there.:blink:

 

My son is coming up on IVIG #5 later this month. His first time was the worse. He did not (refused) to hydrate properly and they did not give him the solu medrol the first time. Since then, he's had minor headaches that were easily treated by the ibuprofen

 

Books are good. Movie players for the kids are even better. Dr. B.'s office has DVDs with a good selection of movies for younger children (<10yo). We bring our own plus headphones. You'll also want food for the day.

 

Good luck and as always - YMMV

 

bill

 

Link to comment
Share on other sites

I think the first time they try to minimize interventions to determine what is the least they can get away with in case this becomes a monthly treatment. You might request the orders for ibuprofen are changed and tylenol removed to save time, otherwise you could be waiting around on the day of.

 

That being said the first time I would hydrate in the car on the way there, but not too much. This makes finding a vein easier if your child has this problem. Then as you already know stay hydrated throughout the day(s).

 

I think it is pretty common to use ibuprofen (yes please no tylenol for us either!) and benadryl at a minimum as premeds.

 

I would recommend medicating with both for at least 3 days (including nights) every 6 hours. The benadryl acts as an anti nausea med if you don't have zofran. We did not do this the first time and he puked and had terrible headaches. Since he discovers an amazing appetite during the infusion this was not pretty but I am not complaining. I love how much he eats without fighting. Sometimes I think I'm raising and anorexic ballerina and not a growing boy!

 

As my son has had more and more infusions (we are now on a 2 day every 21 days schedule) our routine is like this:

-hydrate on way to hospital

-benadryl, ibuprofen, zofran, steroid pre meds on both days

-every 6 hours for ibuprofen and zofran for three days. Now that we have the steroid we can stop at that point. We were needing ibuprofen for a week + before this.

 

My son HATES getting poked. If I would have had any idea we would need to do so many IVIGs I would not have started getting him a new lego set each time he was "brave". Can you say bribery backfire? But, you might either take the IV out at the end of the first day and put a new one in the next day or have a conversation about it and arrange a reward if he keeps it in.

 

Good luck I hope you see lots of great results and NO side effects!

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...