IVIG - how long does it take to work? success stories needed!

[SEAMom]

My DS15 had his first IVIG 3.5 weeks ago. We saw no results except a terrible headache for 4 days. His second one is scheduled for tomorrow. I feel that in the last 2 weeks he has actually regressed back to the early months of his diagnosis - his eyes are really dilated again. His chorea movements are coming back. The suicidal talk remerged and I am having to sit with him to sleep again! We fought so hard to get IVIG covered by insurance but it was supposed to help!! Not make things worse!!

 

Has anyone experienced a regression first after IVIG and then success?? We had such unbelievable success with a high dose prednisone 50mg taper that my DS's immunologist felt very positive about doing IVIG.

 

My son's IVIG dosage is 1mg/1kg over one day. I have questioned our doctor about this dose but he has assured me multiple times that a higher dose would not be more helpful but just make my DS's headache/side effects worse.

 

I would love to hear your experiences. I really need to hear some success stories.

 

Thanks!

 

 

[dasu]

I believe our kids have had the 2g/kg dose over two consecutive days. Is your doctor planning on administering IVIG on a monthly basis?

 

Our kids have had IVIGs but we have yet to really get to lasting success yet. We did notice a gradual improvement over the course of 4 months though, looking back. (With all of the fluctuation in symptoms, its hard to assess progress in the moment)

Edited October 14, 2015 by dasu

[qannie47]

Hello. My first question, did your doctor provide you with 1 dose of Prednisone to counter the headache that can follow the IVIG within the first 24 hours? It was explained to me that inflammation can result to cause that headache so the Prednisone can knock out the inflammation/headache...which leads me to wonder if it was not administered, this is why you are seeing regression instead of improvement? Just my thoughts...

 

My son has had 2 IVIG's, and the headache came with it....the first time I gave him the Prednisone immediately and the headache was knocked out instantly and never returned. The second time, it took me 12 hours to get hte script filled and the headache diminished, but hung around for about 4 days as well.

 

I don mean to focus on the headache, as I know that is not your primary question. However, I will say, that my son took longer to respond in a positive way the second time around, and after reading your post, I have to wonder if the brain inflammation/headache allowed to take root could interrupt the positive effects of IVIG temporarily.

 

My take on IVIG: I know that they say that IVIG has a 3 month shelf life...however, I believe that it is "Big Picture", the belief that many specialists, including Sweedo, feel that it can take up to 18 months for the real, beneficial effects of IVIG in that it can fix a "misguided immune system" is what is important.

 

I want to add, that our experience has been that IVIG is only a piece of the puzzle. Pandas/leaky gut/vitamin & mineral deficeincies/food allergies were the other components that needed to be addressed. Once we covered all the bases, our son has never been in better shape.

 

Hope this helps...

[SEAMom]

my son was given Benadryl and prednisone before the IVIG was administered. He was also still taking prednisone daily. After the initial prednisone taper - it was so effective and he was such a complete disaster previous to it that they put him back on 25 mg daily so he be could be functional vs dysfunctional.

 

I am worried we will have the 4 day headache from again with no results from the IVIG.

 

We are working on the other pieces - vit/minerals/leaky gut but there is still more we can do.....

 

I was really hoping IVIG was the magic bullet.

[tj21]

We did not have headaches or nausea after ds16's first IVIG (1.75g/kg over 2 days). Our practioner did mention that the more "standard" lower IVIG dose for immune-deficiencies, vs. autoimmune issues, can actually trigger PANDAS/PANS symptoms rather than jump start the immune system to fight the inflammation.

 

We were prescribed Zofran post-IVIG in case of nausea/headache.

The half-life of IgG is about 3 months, so there will still be IgG in the system after that. DS16's IgG levels contine to drop, so we're going for 2nd IVIG (2g/kg) about 9 months after first. DS16's symptoms did improve (brain fog lifted, behavior calmed down, almost no tics) but as @dasu mentions, hard to separate out from all the other stuff going on, including meds., supplements, puberty, etc.

Our ID MD and Immunologist said generally with other autoimmune encephalitis type diseases, if the high dosing IVIG doesn't help after 2 tries, we move to steroid bursts and some other therapies.

[SEAMom]

Our immunologist says that 1-2mg/kg IVIG is considered high dose? What dosage have other kids had success with?

 

Has anyone had succes with 1mg/kg? I am so frustrated if this dose is too low that all it is doing is stirring things up more .

[dasu]

1 + 1 = 2, just over a month. I havent heard of that approach - has your immune doc read up on https://www.pandasppn.org/ ? I would ask him on what basis he made the decision to go with 1g/kg. Its your child. I believe the immune deficient folks seem to go from 250mg-500mg/kg over a single day, with ITP using 1g/kg over two day.

 

That said, we also noticed an uptick in symptoms after the first IVIG around week 3. We have heard similar stories so there may be something to that.

Edited October 15, 2015 by dasu