Advice for us? IVIG scheduled for this week.

[philamom]

You may want to bring "Shivy Shiv" (lol) next week. The nurses can wrap the bear in the same bright color gauze used on your son if he wishes. He can also have his bear ride on the IV machine (cant think of what its called right now).

For mentally preparing - there is also a free IVIG play therapy kit here http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html

 

We got it for my 5 1/2 year old son who's going for his first IVIG next week with Dr. B. He loved it - it has all the pieces, and he has slept with his bear every night since he's gotten it. (He named him "Shivy Shiv" - no clue why!)

[nicklemama]

Congrats on getting thrunit. My son has had IVIG twice in Chicago with Dr K.

[kthomas]

It is great that you are getting treatment early - everything I have read says the earlier the better. Just curios as to which insurance company you have, and if they are covering the IVIG and if it is for PANDAS or another autoimmune illness? My DS8 has had PANDAS for over 2 years. - just getting the abx was monumental. Dr. Has dx'd IViG but BCBS has denied it.

[airial95]

Shivy Shiv is totally coming along!!!

 

As for "early" treatment - while age wise it's still early for us, he's had PANDAS close to 4 years (onset with a strep infection May 2009). But because of his age we were conservative.

 

UHC is covering it for us - but based on immune dysfunction. We have normal labs, but have had 30+ documented strep infections (+ cultures) since onset so I think that's why its getting covered.