one-month update after IVIG

[pmoreno]

The first 2 weeks after IVIG all was well - much more concentration - no eye blinking, etc. The 3rd week I started seeing some blinking and she complained about having bad thoughts, seeing people who were mean, her imagination bothering her. after the 4th week, its pretty much every day like this. Luckily, things are not as bad as they were with the first episode last year, where there was a lot of anger, paranoia, crying, etc. But basically she is where she was before the IVIG. She has been on augmentin prophylactically and I have read a lot of posts here that augmentin didn't work for some kids and that azythromycin is supposedly better. I wonder what her titers would show right now? Maybe the augmentin isn't working for her. I think I will notify Dr. K about this and see if he would be willing to switch her to the zith. It's just hard to tell what's going on - I'm giving her non-dairy, non-yogurt probiotics so I don't think she has yeast, but who knows. She is pretty spacey - doesn't remember much about the day if you ask her - very poor memory.

[bmom]

Pat,

Thanks for the update. I am sorry to hear that Gaby is having trouble. What do you think is going on? Is it turning back the pages? Does it last several days or do you think it is something else? Please let me know what Dr. K thinks too. We are leaving for Chicago in a little over a week. What about the detox? Could that be causing problems? Are you still doing it?

[EAMom]

Hi Pat,

 

That's sad news, hang in there! Diana's son has been going through some issues as well.

 

This is my (not particularly well-researched) theory...when a child gets IVIG there is introduction of new regulatory t cells. It is these regulatory t-cells that counter the abnormal immune response of PANDAS. Perhaps these new regulatory t-cells get "used up" a few weeks after IVIG. Hence the initial improvement and then decline. Eventually the child's own body is able to produce it's own regulatory t cells but for many there is a gap between when the IVIG regulatory t cells get used up and when the child's body "kicks in" and starts making enough its own.

 

http://en.wikipedia.org/wiki/Regulatory_T_cell

 

Anyway, it's just a theory...maybe it's all wrong. But it seems to fit the pattern of why some kids have a decline a few weeks after IVIG. Not all kids would have this decline depending on when the IVIG cells get used up and when the immunue system kicks in with its own regulatory t-cells.

[Worried_Dad]

Wow - sounds like we're all experiencing a similar "hiccup" post-IVIG! Our son had IVIG the same time as Pat's daughter. We also saw steady improvement for almost 3 weeks, then we suddenly hit a "rough patch" during Week 4. The OCD improvement plateaued, and some of his earliest symptoms from a year ago (twitching / tics, muscle weakness, difficulty walking, headaches, difficulty concentrating) reappeared and persisted during that week. He also had about 4 severe panic attacks that hit out of nowhere: one minute fine, next minute hyperventilating and totally stressed out. During these attacks, the OCD symptoms temporarily worsened dramatically. They lasted less than an hour, but they were scary and a bit discouraging. When I asked our son what made him so anxious, he said he had no idea - pure basal ganglia issue, I guess.

 

He seems to be gaining ground again this week (Week 5) and doing better. Overall, we're still MUCH better off than before IVIG (when he was completely crippled by OCD) but haven't gotten back to that 90+% mark we've been hoping for. I shot an e-mail update to Dr. K and am waiting to hear whether this pattern is familiar to him. (Due to our son's age - 12 - and the severity of his symptoms, Dr. K forewarned us that his complete recovery would likely take longer.)

 

Don't know if this is tied to an infection going through our family. We have a 2-year-old in daycare and an 8-year-old in school, both bringing various colds and coughs home. We've all had a bit of a cold during the past week or two. Maybe this kicked his immune response up a notch?

 

EAMom (or Diana, if you're reading this), what's up with Garrett? Is he experiencing something similar?

 

PANDAS is just so damned slippery and frustrating. Every time we seem to be seeing progress, we hit a speed bump (or a wall). I'm still optimistic about the IVIG - several other docs recommended this as the right option if things got rough - but it appears the healing process will take longer than we'd hoped.

 

Pat and Diana, here's hoping these are temporary setbacks for all of our kids... and that we're celebrating their full recovery in the near future! (And sharing the good news with others on this forum!!!)

[bmom]

Thank you so much both of you for posting your experiences. It just gives me an idea of what may possibly go on. I am curious about these turning of the pages. Do they last a full week? I guess I thought an hour here and there and then gone. Like, "oh, you again" and then poof gone. Hmm.. wishful thinking. I do believe that if they are old behaviors, there is healing going on. I would be more nervous of the not so old behaviors or new ones. The old ones I would actually take as a good sign.

[pmoreno]

Hi Pat,

 

That's sad news, hang in there! Diana's son has been going through some issues as well.

 

This is my (not particularly well-researched) theory...when a child gets IVIG there is introduction of new regulatory t cells. It is these regulatory t-cells that counter the abnormal immune response of PANDAS. Perhaps these new regulatory t-cells get "used up" a few weeks after IVIG. Hence the initial improvement and then decline. Eventually the child's own body is able to produce it's own regulatory t cells but for many there is a gap between when the IVIG regulatory t cells get used up and when the child's body "kicks in" and starts making enough its own.

 

http://en.wikipedia.org/wiki/Regulatory_T_cell

 

Anyway, it's just a theory...maybe it's all wrong. But it seems to fit the pattern of why some kids have a decline a few weeks after IVIG. Not all kids would have this decline depending on when the IVIG cells get used up and when the immunue system kicks in with its own regulatory t-cells.

 

 

Do you mean that the child's own body is able to produce it's own regulatory t cells as a result of having had the IVIG, or that they would be able to produce them eventually anyway? I wonder where the improvement eventually comes from - the regulatory t-cells or the remyelinization of the damaged neurons? I don't know if she would be like this or worse without the augmentin - I'm kind of thinking it might not be effective - on the other hand, maybe it is effective in preventing further response, but the behavior I'm seeing is still residual from what needs to be cleaned up from the last episode. It's so hard to know. Pat

[pmoreno]

Pat,

Thanks for the update. I am sorry to hear that Gaby is having trouble. What do you think is going on? Is it turning back the pages? Does it last several days or do you think it is something else? Please let me know what Dr. K thinks too. We are leaving for Chicago in a little over a week. What about the detox? Could that be causing problems? Are you still doing it?

 

 

I don't know if its turning back the pages or just residual stuff that has to slowly go away. When I think "turning back the pages", I think of short bursts of behavior, but she has been consistently in a foggy state for at least a week now. I mean, its not horrible, but she talks about seeing or hearing things and squints her eyes a lot - seems sleepy or not really mentally with it. I wonder if its possible that she's had new strep exposure and that augmentin isn't working, but it may just be that she's still in the process of getting over everything from before. I e-mailed Dr. K yesterday, but haven't gotten response yet - I'll let you know. Pat

[P_Mom]

Guys....dr.K is in Europe right now....perhaps that is why you haven't heard back from him yet. I think he will be gone for a week.

 

Kelly

[EAMom]

Well, my theory (branching off of my husband's theory of why IVIG theory works) is that the IVIG somehow "retrains" the PANDAS child's immune system to make its own regulatory t (or b ) cells.

 

For most diseases IVIG only "lasts" 2 weeks-3 mo. (this is from wikipedia http://en.wikipedia.org/wiki/Intravenous_immunoglobulin ). So, why does it only take 1 treatment in these PANDAS kids and it fixes them long term??? The only thing I can figure out is that the IVIG does something that enables these kids to start making their own regulatory t (or B )cells.

 

With this theory, the 4 week "hiccup" makes sense...the original IVIG is wearing off (like it does for other diseases) and the child's own retrained immune system hasn't kicked in yet...perhaps this takes up to a year for the "new and improved" immune system to get fully up to speed, but eventually it does (I hope!).

 

Anyway, it's just my theory, it could be totally wrong, but it seems to fit in with what we are observing....

 

The remyelinization of damaged neurons might also play a role...I'm sure this disease is complicated. Just as we've had discussions about whether pandas is immune mediated or an effect of strep toxins etc...it's probably a combination of more than just 1 thing.

[Diana]

Hi Worried Dad and all - Garrett is doing pretty well folks. BUT, yes, we are definitely hitting speed bumps and weird bumps. And dear "dad" ABSOLUTELY had a reaction to my 4 year old having a cold - immediate super-stuffy nose - and then hyper/aggressive thoughts. I increased his abs for a 2 or 3 days (250mg up to 500mg daily). It all died down. Then - voila - two days ago ANOTHER stuffy nose (thank you Halloween night for that one) - and BIG TIME OCD OVERREACTION like I had not seen in 5 weeks.....bad bad bad for three days. BUT AGAIN, as you said, not on the scale during severe PANDAS. Just rude, crying, hysterical - but there room for him to here logic and calm.

 

Now, we are on day 3 - stuffy nose is going away and BIG SURPRISE (not.....) - he is so much better. He started doing the spaced out eyes look here'n'there - that is gone too. I saw Dr. K Friday in Chicago - and told him about this - he said, "You gotta hang tough...he is resolving, he is turning the pages."

 

Pat and "Dad" - remember too with Garrett - I had largely arrested his most agregious symptoms with abs BEFORE getting the IVIG. Weekly, daily abs for 8 solid months before getting IVIG - so he had quite a headstart on this thing compared to your kids. Let's keep the faith - I cling to S.James' story of IVIG - large resolution in the first 6 weeks and really 6 more months of slow disintegration of this awful disease. I'm stressed. But, I'm hopeful. hugs, di

[Worried_Dad]

Hi, Diana:

 

Thanks for the reality check. Yeah, after almost 2 years of our son being very ill, I guess it's unrealistic to expect a "miracle recovery" in a month. I'm very glad to hear that Garrett's still doing well overall, and it's comforting to know that we're all seeing a similar pattern. We were just a bit paranoid because of our son's age and proximity to puberty... puts him at higher risk of not responding to the IVIG.

 

So... sigh... guess we just have to reconcile ourselves to waiting and hoping. We're just really praying we can get Cormac back to school (he's been either out or homebound for a year and a half). But - to Diana's point - we can see a big difference in our son post-IVIG. Even though he's still having problems, he's much more "there" than he's been for quite some time.

 

And Kelly, thanks for the scoop on Dr. K being in Europe. I wondered if he was abroad, because he's always responded to e-mails incredibly promptly in the past. Guess I need to be patient with my e-mail, too!

 

Take care, y'all, and thanks for the update, Diana! P.S.: heard much from the Yale folks of late?

 

 

Hi Worried Dad and all - Garrett is doing pretty well folks. BUT, yes, we are definitely hitting speed bumps and weird bumps. And dear "dad" ABSOLUTELY had a reaction to my 4 year old having a cold - immediate super-stuffy nose - and then hyper/aggressive thoughts. I increased his abs for a 2 or 3 days (250mg up to 500mg daily). It all died down. Then - voila - two days ago ANOTHER stuffy nose (thank you Halloween night for that one) - and BIG TIME OCD OVERREACTION like I had not seen in 5 weeks.....bad bad bad for three days. BUT AGAIN, as you said, not on the scale during severe PANDAS. Just rude, crying, hysterical - but there room for him to here logic and calm.

 

Now, we are on day 3 - stuffy nose is going away and BIG SURPRISE (not.....) - he is so much better. He started doing the spaced out eyes look here'n'there - that is gone too. I saw Dr. K Friday in Chicago - and told him about this - he said, "You gotta hang tough...he is resolving, he is turning the pages."

 

Pat and "Dad" - remember too with Garrett - I had largely arrested his most agregious symptoms with abs BEFORE getting the IVIG. Weekly, daily abs for 8 solid months before getting IVIG - so he had quite a headstart on this thing compared to your kids. Let's keep the faith - I cling to S.James' story of IVIG - large resolution in the first 6 weeks and really 6 more months of slow disintegration of this awful disease. I'm stressed. But, I'm hopeful. hugs, di