A couple questions about ivig please

[Jaal]

I believe Dr K recommends 1.5 grams / kg dose....is that total amount for both days....my ds is having it in Las Vegas and I want to make sure they have the dose right.

 

Also, can anyone let me know if octagon is a reputable product.

 

Thank you!

[airial95]

We just did that infusion rate and used octagam as well. We did it with Dr. B in CT. We are 3 weeks out and have had wonderful results so far.

 

A few tips:

 

Start hydrating a few days before hand, and keep pumping them with fluids through the process and for several days after. Popsicles, jello, fresh fruit are also ways to help with hydration.

 

Give him motrin and benedryl about an hour or so before you go (if he can tolerate those). And then keep that up about every 6 hours throughout the process.

 

You may want to have steroids and something for the nausea on hand as well. (Some have recommended Zofran, but if your son is on Azith and has not had a heart work up for Long QT formation, it's contraindicated with that, so we couldn't use it.)

 

Have them keep the infusion rate SLOW - it will help minimize side effects.

 

These are all things that others helped me out with when we went a few weeks ago. I was very nervous, but my 5 year old little man was great, very brave and strong. For us, the side effects were severe headache and vomiting that came on about 8 hours after the 2nd day of the infusion and lasted only about 8-10 hours or so.

 

Good luck!!

[Jaal]

Airial95, Thank you so much for the great suggestions! I am so glad to hear you are experiencing great results so far!

 

One last question, was that dose for each day or for both days combined (.75 grams/kg each day)?

 

Thank you!

[airial95]

No, I believe it was 1.5kg/g per day...but I'd have to double check

[ptcgirl]

• My biggest piece of advice: Don't be afraid of IVIG. It has helped my dd incredibly. She is now on her 7th one. It took about 6 to really make the progress she needed. She also had complications due to lyme and other coinfections. IVIG is wonderful in my book. Really saved my kid, thank GOD. She is better than she's been in years. As close to 100% as she will likely ever be. Amazingly good.

[peglem]

This FREE therapeutic play kit really helped my child prepare for and get through her 1st IVIG:

http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html

 

 

And I think the dose is 1.5g/kg administered over 2 days.

[airial95]

Yes- the play kit was awesome!!! My son still takes his bear everywhere!!!

[Mayzoo]

This FREE therapeutic play kit really helped my child prepare for and get through her 1st IVIG:

http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html

 

 

And I think the dose is 1.5g/kg administered over 2 days.

 

 

Thank you very much for posting this resource. Kiddo was dxd with PI recently, and her doc was pushing for IVIG even before he got the results. My kiddo does soooo much better when a procedure is explained to her, and she has time to work it out on her stuffed friends. I am not sure if we will be going with IVIG since I am still very hesitant, but time will tell. Regardless, thank you for the resource since they also have magazines and another book that could help her realizing she is not alone in all this and help her cope.

[airial95]

You have to call for the kit, and the volunteer that I spoke to was very helpful, and gave lots of tips for IVIG and the like. It really is a good resource.