IVIG

[Wickedmaineah]

Our DS's doctor would like us to consider IVIG. Read on it, listened to the doctor, but would like real life experiences from parents. Our son is mostly dealing with the anxiety and OCD at this point. His tics stopped after the first round of antibiotics, though he does have this constant dry cough that I am now thinking is a tic. He is has secluded himself mostly inside the house this summer, lots of emotional lability and just completely stressed all the time.

So if you can tell me your experiences with IVIG. The good and the bad. The outcome. And what helped the preparation for the treatment it would be helpful.

He is starting another round of antibiotics while the doctor gets in touch with the local hospital to look at their setup for the treatment. We have a month before school and I feel like we are on a race. If school started tomorrow he would not be able to go, huge separation anxiety.

Thanks,

Christina

[kimballot]

Christina -

 

I am not sure how old your son is. I can tell you that in our case ds14 had his first IVIG Feb. 2011. He had chronic severe, unrelenting sinusitis prior to that and had PANDAS exacerbations with each sinus flare up. He is also mildly immune deficient. Prior to IVIG we had him drink lots of water and followed our doctors protocol of prednisone x 2 days, and benadryl and ibuprofen before infusion.

 

After IVIG we had no nausea or headaches. We continued the water, ibuprofen and benadryl for several days after. He did have a nasty nosebleed - probably from so much ibuprofen coupled with his sinus issues.

 

The GOOD: Since IVIG ds has not had any sinusitis or really any other illnesses except 2 instances of colds that lasted a couple of days. He has his old energy back, his muscle tone seems "normal" again (was low for a while), his coordination is back, is enjoying his previous activities, and has lost some weight and trimmed down (he needed this).

 

 

THE BAD: Two weeks after IVIG#1 ds had a horrible exacerbation of neuropsych symptoms necessitating a hospital admission and then a slow recovery to baseline. He is near baseline now (5 months later) and is taking summer classes to try to catch up on the work he missed. He has had 2 more IVIG infusions with no ill-effects. He still has some long-standing rituals that get in the way of him getting to school on time in the morning and completing homework, and we are pursuing CBT for those. (However - at least we can address them now - during exacerbation we could not even address these).

 

THE UGLY: I get angry when I think back to the doctors who insisted my son did not have PANDAS for 6 years or told me that there is no difference in treatment whether it is PANDAS or not. In retrospect, I wish we could have done IVIG 6 years ago. I believe the post-infusion exacerbation would be less and I know it would have been easier to deal with if he were smaller than me and if we were not also dealing with hormones and puberty! I feel like I am in a race against time to get him to function so he can be on track get through high school with decent grades and decent study habits.

 

In retrospect - I would also recommend having some knowledge of the mental health system in your area (if your child is a teenager), so you are prepared if you suddenly have an angry or depressed young man living in your home!

 

I don't know if that helps you with your decision or not. It is a very personal decision and I think, in the end, you need to look at your child's functional level to decide if you are ready for this.

Edited July 26, 2011 by kimballot

[mamapanda]

If you're serious about IVIG, you may want to look into having your son be part of the Yale IVIG Treatment Study currently going on.

[momaine]

don't have time for a long post, but still continuing with regular ivig and it's been a positive experience for dd14 with lyme/bartonella/pandas.