IVIG - really worth it?

[dasu]

He has had One big flare this past Sept. Since then, he has had two mini flares. Lasted only 24 hours because I did not wait around to see if it went away on its own. Started full abx asap. He responded beautifully.

 

I dont understand - how do you get ABX so quickly? Does your PANDAS Dr prescribe? Or have you found a supportive primary care physician?

 

The last flare the kids went through was a slow rolling disaster. The kids got a couple different bugs, and depsite three trips to the doctor's office nothing was given. About a month in the flare started and is continuing today. It would be nice to be more proactive...

[sleepingdog]

YES! i am seeing dramatic improvement with ongoing ivig treatment. the path is long and winding with many ups and downs, but i am gradually seeing hope of returning to myself and my 'normal' life with ivig. i cannot recommend it highly enough.

[Brese]

IVIG gave me my 7 daughter back. I would do it again in a heartbeat.

[JakeTyler]

IVIG gave me my 7 daughter back. I would do it again in a heartbeat.

Can you elaborate? Did it pull her out of a big flare, or did it prevent future flares from occuring?

 

My question on IVIG is will it prevent future flares? We seem to be able to pull out of them now within a few weeks with ABX, but if there was a way to prevent them altogether we'd jump at it.

[ktdommer]

My 18 year old son has one Hd IVIG treatment under his belt with the second one scheduled this Friday. When he was at his PANS/Lyme doc, he said he felt a lot better for 3 days. I believe he has had some lasting improvements. I would say that his energy level is up. I am hopeful that he will be one of the stories of slow continual improvement. Insurance has agreed to pay for 6 treatments. I wonder if we will have to fight for more.

He has been on several antibiotics for years. The theory is that IVIg will increase his immune system so that finally abx treatment will have a fighting chance against Lyme and bartonella. He also takes a healthy dose of Valtrex daily and supplements.

I'm inspired today from other posts to tighten down his diet.

[JenniferG]

What about long term flares? >2 years. Does IVIG help?

[airial95]

jenniferg - my son was diagnosed in 2010 at 2 years old, his onset was about 6 months prior to that. For 3 years we did abx (along with T&A), our issue was recurring strep. We would see steady improvement on the abx, and then he would get strep again (even on the abx.) The T&A brought him back to 100% immediately, but 6 weeks later he was + for strep again, so we were back to the beginning. We finally pulled the trigger on IVIG in Spring 2013. He got 5 from April 2013 through Christmas 2013 and the results were immediate, and astounding. He was 100% within 24 hours of the infusion. The results lasted, and we would start to see some minor symptoms "creep" at about the 7 week post infusion mark, but he was on an 8 week schedule, we were actually okay seeing minor creep because it assured us we still needed the IVIG. We had a bad nurse with our last infusion and decided to take a break.

 

Even though its been a year since his last infusion - the results are still tremendous. He went from getting strep 6 - 8 times per year post T&A (all while on long term, multiple, full strength abx), to having just 3 positive strep tests since Spring 2013. His flares with each new infection have been much milder and manageable. He does still react to exposure to strep, but only about 3-4 days of symptoms and back to normal.

 

We waited 3 years to pull the trigger on IVIG because of his age, we were afraid of such an intensive treatment and really wanted to start low and slow with anything we tried. I'm sorry that we waited that long!

 

He had strep again in July, and his vocal tics returned, they are the only long term symptom we are still seeing and our new immunologist is working to help us get another infusion covered to eliminate that symptom.

 

Hope this info helps.

[JenniferG]

What is the consensus regarding if a child has an active infection? Or you don't know if its a flare or an infection? We did 1 IVIG a few years ago...coincidently she had C Diff and it is recommended if the ABX didn't work. After 1 IVIG the C Diff was gone, her "flare" got under control for about 3 days. We never did continue. She got more and more infections.....ear, yeast, h pylori. It's been a never ending battle. My fear is to start IVIG with an active infection. I would think it would help, not make matters worse. Right??

 

She has been home for lost 5 weeks from school, with what is a "viral" infection. Mono test positive. Doing EBV titers soon. She needs to function again.

Edited February 24, 2015 by jenniferg

[nicklemama]

If you can afford it it does help. But as you have experienced, it's not one and done and it's not curative.

[Cleopatra]

If you know you have an active infection for sure, that shows on culture, or, in bloodwork I would treat that first if it can be done quickly. If it's MycoP, I wouldn't wait to do IVIg since that can take many months/years?. Yes it helps most ppl most of the time. Almost nobody only needs one. Dr K is incorrect, IMO. So is NIH. I know they are just trying to get PANDAS and even one IVIg treatment recognized and accepted. I would continue if it's helped. Also, if you are getting breakthrough strep you should change your abx until you find one that works. My dd is on IVIg #20. It's given every 3-4 weeks to immune deficient patients. Our kids are hyper immune and need it as well.