Ivig 26/27 February and not sure if this is normal

[Hmrz]

My son had ivig feb 26/27 and has had two pretty significant rages since. At first he seemed so different but now I wonder if that was some kind of placebo effect. I have read everything I can find about turning back the pages and herxing but I guess I am now wondering if I'm just trying to make all the info fit my situation. I don't want to lose hope and give up. I feel so lost and alone.

He is not impossible acting all the time which makes me wonder if turning back the pages even applies. I guess I would just like to know if I need to change everything I'm doing.

He had HD 2g over two days.

Sorry this is so disconnected. The huge knot in my chest and stomach is giving me enormous anxiety.

I would love to talk to anyone with advice or anything that applies.

[qannie47]

Depending on the age of your child, it can take up to 8 weeks to see a visible improvement. Remember, ivig is not an instant cure. it can take up to a year for its full effect. My understanding is that IVIG is mainly about resetting the immune system and that takes time. They say the older the child, the longer it takes to start seeing some positive results as well. While my son, age 8 did have great and instant results,(his was done 9 months ago), I am not sure I saw what is referred to as turning back the pages. My ds was 100% following the IVIG. Then month four he had a HUGE flare. Lasted about 10 weeks or so from start to back to 100%. Since then one mild flare that lasted 24 hours in which I immediately put him on full abx because I was not going to wait around to see it get worse... I might add that his 24 hour flare was different / less intense. Usually, his past flares were like a bomb exploding. All of a sudden in an instant everything about my child would change: anger, hyper, emotional regression. constant motoric tics and vocal tics. This time it was only motoric tics and his emotional range remained stable. This would be an example of turning back the pages for my child personally. I might add that a recent T/A I feel has been an added factor to his recovery....Right now, the only two things that remain are fear of falling asleep on his own and bedwetting, and interestingly, it was these 2 symptoms that were the first to surface when it all started.....

[LNN]

I've been on these boards for many years and still don't know what "turning back the pages" means. But I can tell you that when my son had HDIVIG, he had a horrible recovery. 10 weeks of h**1 on earth. Rage is the first word that comes to mind. In our case, it turned out that DS had undiagnosed lyme and then got strep, which triggered the whole PANS nightmare. When we finally resorted to IVIG, it provoked a horrible herx.

 

The standard western blot we did for lyme 3 months prior to IVIG was completely negative. But 10 weeks after IVIG (half life of IVIG is 6 weeks?), we did an Igenex lyme test and DS had 6 positive or indeterminate bands. Most likely, he'd been chronically ill and his own body had stopped making antibodies to the lyme. IVIG made his system strong enough to start making those antibodies and he was able to show positive bands after the IVIG. I do not think the IVIG itself caused the test to be positive based on the length of time we waited before re-testing for lyme and based on his positive response to treatments. We treated for lyme for 2.5 yrs. He's been off abx for a yr now and is doing awesome.

 

If you continue to struggle, consider a chronic infection and don't lose faith. It was a horrible, horrible thing to go through, but for us it had a silver lining. Once you find (all of) the enemy/enemies, the kids do get better.

[Hmrz]

Thanks for the response. It is wonderful to hear about great results that gives me hope. My son is 9(birthday 1/19) he had his tonsils removed 21/2 months ago. I thought I was prepared for anything that would happen after ivig but I guess all the reading and researching in the world doesn't prepare you for an actual life experience. The anger and rage attacks were the first signs of pandas we saw when this began. He also never experienced any tics until ivig. Now he has a throat clearing about every 10/15 min.

[nicklemama]

My son had a huge ramp up of tics after IVIG. Took about 6 weeks to go away. We saw two steps forward, one step back for the first 3 months post IVIG.