2 week Post HD IVIG-Neuro symptoms

[Healingthedude]

We have done low dose IVIG for a year for immunodeficiency and PANDAS. Worked VERY well for us.

After an exposure to virus in May the low dose was no longer working.

We just did high dose 2 weeks ago. Since infusion tics have improved.

By day 5 or 6 we weren't seeing any at all which was awesome.

Days 7-14 we have been getting a lot of screaming tantrums and OCD and some tics back.

This morning I got a staring spell followed by screaming.

Never saw any of this with the low dose. We would just have 3 days nausea/headache

post treatment (easily managed with Motrin) and then back to his old self with no tics.

 

Is there a difficult adjustment period after high dose IVIG to be expected and then it gets better?

I want to know if I need to get in to see the immunologist or neurologist.

I felt really nervous about putting him on the school bus today.

Any high dose IVIG parents out there, would really appreciate your help.

Thanks,

Carolyn

[PhillyPA]

This is normal. For us, things got much worse before they got better. Things I had never seen before popped up. Those strange symptoms will go away but it may take several weeks.

[NancyD]

Although recovery from HD was much longer than LD (it took DD 10 weeks both times on HD), the difference was profound. HD infusion seemed to kill the antibodies and put DD into remission whereas the LD infusion seemed to stir up the antibodies and prevent her from going into remission for too long. That's just our experience.

Edited October 25, 2010 by NancyD

[nevergiveup]

Low dose does not stir up antibodies, what science are you talking about? And ivig does not kill antibodies, it attaches to antibodies and redirects them. (In theory). How low was your low dose?

[chodnett]

Where does it redirect them to??

[SarahJane]

Our explanation of IVIG said that it shuts down the child's own immune system for a while (weeks-months--I'm assuming this is that critical phase when they can't get sick) since the body doesn't need to produce antibodies. Then when the bone marrow does need to make antibodies (presumably when the IVIG donor source is depleted or I guess when new invader is detected), when it "reboots," it no longer makes the "bad" antibodies that attack the brain.

 

Would like to understand low dose, high does a bit more.

 

Just a thought...and don't we all just have thousands of those...but could it be that if during that critical period an invader/illness shows up that's not been represented in the thousands of IVIG antibodies, then that's why the treatment is aborted because the body had to react. So, if there's a super-bug or new strain or whatever that's not been successfully fought by plasma donors, then that's why the IVIG "fails" or effects are short-lived. OR can the neuro-antibodies also be transmitted thru IVIG? So what if...going out on a limb here...someone who has OCD (undiagnosed/no treatment...had it since childhood but never affected their life in a big way...they're just a perfectionist or maybe pull out their hair) donates plasma & it turns out that OCD standalone also has neuro/bad-antibodies as its cause but for some reason doesn't bring ALL the behaviors. Or is it a bacteria vs. virus response since antibodies ignore viruses. Oh GEEZ. We have IVIG scheduled next month for ds. Way to scare myself. Happy Halloween.

[nevergiveup]

There are two theories behind how ivig works for autoimmune disease, one that in extremely high doses it temporarily shuts off production of autoantibodies. The second theory which seems to hold more clout with the rheum and immunologists is that antibodies bind, they bind to viruses or whatever to mark them as invaders. However they also bind to each other(new science) thereby redirected the antibody so that it doesn't bind to proteins in our body. I am assuming this is what is referred to as a monoclonal antibody, which is what they are trying to isolate for drugs for ms and lupus. Anyway, I am not sure I am explaining this well, but the idea is ivig at a high enough dose can bind to the bad antibodies and they then do not target the body. For autoimmune disease this binding process takes up to 72 hours after ivig to see impact on symptom remission. The "turning back of the pages" seen by some but not by all has not been clearly explained, nor is it seen in other autoimmune disease that I know of that are treated with ivig? My immunologists goal is not to have this happen, rather slowly ramp up my dd's ivig levels monthly so that she has no side effects. Its a long wait for sure, but my dd always see's improvement after each ivig, her worst time was when she received the first dose, at high dose, and she had very strange symptoms surge, it was scary, and then although we saw some improvement about 10 weeks post it was not that great! So now we are trying a high dose frequent protocol and she has no turning back of the pages. Now as for just a mothers gut feeling, if one to two weeks post ivig the symptoms reappear, then I think you need additonal ivig until symptoms are gone!

[dcmom]

I guess the question is, however, can HD (or any dose) IVIG remove/change the sequestered B cell clones which are the source for recurrences. I have heard- no. Nevergiveup- I am interested to know if your doc feels differently...

[nevergiveup]

My doc says no, ivig just redirects antibodies. Most likely won't change memory of b cells. My dd has had a b cell panel and it shows overstimulated mature b cells(indicates autoimmune disease), high amounts of nymph b cells, anyway, no the only drug I have heard that can wipe out the b cell memory is rituxan, b cells maintain memories some a year some years, so. Rituxan, a multiple myeloma drug, also used very successfully on lupus kids, and autism. One year to wipe out b cells, followed up with three years ivig to build back up immune system and memory.

[dcmom]

Interesting- would you consider that protocol?

 

What type of prognosis, long term, does your doc give with his/her treatment?

[JAG10]

That is interesting. What does he base that time line, 1year/3years on...experience with Lupus?

 

Are there other drugs in the pipeline for b cell dysfunction?

[Fixit]

My doc says no, ivig just redirects antibodies. Most likely won't change memory of b cells. My dd has had a b cell panel and it shows overstimulated mature b cells(indicates autoimmune disease), high amounts of nymph b cells, anyway, no the only drug I have heard that can wipe out the b cell memory is rituxan, b cells maintain memories some a year some years, so. Rituxan, a multiple myeloma drug, also used very successfully on lupus kids, and autism. One year to wipe out b cells, followed up with three years ivig to build back up immune system and memory.

 

do you know the name of the tests you mentioned??

[Healingthedude]

I just came back to look at the replies and this is a very interesting thread.

Nevergiveup-would love your docs name if you don't mind.

I am an artist, not very scientific, but a few of my son's doctors have explained it in visual terms for me.

 

They said basically the IVIG is like a big sponge that goes and mops up all the strep antibodies that are causing my sons neuro symptoms (tics OCD etc)

Every 4-6 weeks the symptoms kept coming back on the low dose

because he had an underlying infection that was causing the antibody factory to produce more and more.

 

To shut down the antibody factory for good, my doctors thought you would need a combo of the antibiotics

to treat the underlying infection (for at least 6 months) combined with the IVIG to mop up the problematic debris for at least a year.

I anticipate a few years based on my sons PANDAS, autism and immunodeficiency together.

 

I don't think anyone really knows for sure how to shut the factory down. The science is still trying to catch up with this disease. But there is some hope.

There are many seeing results with the IVIG and antibiotics. I really like the theory you described with the B cells above.

 

By the way, I have noticed my son tends to show more improvement when he has the herx reaction than when no side effects after IVIG.

Its almost like his immune system is reacting to the foreign invaders or die off (whichever the process is)

and then it accepts the IGG and kicks up overall functioning a notch.

When he has no reaction the symptoms come back a lot sooner.

 

PS-after the incident in the morning he ended up having a very good day today and I am grateful!

Edited October 26, 2010 by Healingthedude

[nevergiveup]

B cell panel, done at BMT clinics and immunology def type docs. B cell panels look at birth to maturity of b cells development. Each development stage has different issues, diseases associated with it. Overactivated mature b cells means b cells are attacking body. That's all I know since that is what they found in my dd's test. Complicated though, cuz even my father whom is an allergist immunologist is not familiar with exactly the whole science. As for the rituxan drug, we are using it as a possible last resort, doc says ivig levels maintained at 1900 show promise. Safest option for now. They have several kids all improving, of course everything is experimental. Other b cell drugs may help, still though waiting another year to see if autoimmune dose of ivig will put her in remission. Right now she is still not at a high enough level, by winter she will be.

[JAG10]

doc says ivig levels maintained at 1900 show promise. Safest option for now.

 

What does this mean...1900? What is this a measurement of? What dose of IVIG is the autoimmune dose and how often is your girl receiving it?

Does your doctor treat other children with PITAND or just others with autoimmune disease and experimenting from there? And that is not an attack on your doc....i realize they are all experimenting at this point.....just trying to learn from your experience. Do you think the immunologists are the best suited to treat PITAND?

 

Thanks so much for sharing!